“A Single Death is a Tragedy, a Million Deaths is a Statistic”

When I was diagnosed with Stage four metastatic lung cancer, I pledged to launch a series of articles on tobacco, cancer, and related health issues. They won’t be in-depth, but I hope they will be thought-provoking.

For this first entry, I have turned to history for yet another lesson. The headlined quote about deaths comes from Josef Stalin, the brutal Russian Dictator who became one of the world’s greatest mass murderers, said to be responsible for the deaths of up to 25 million people, a staggering number that overwhelms even Hitler’s brutality.

Chinese leader Mao Zedong was an even more prolific killer. History records that his “Great Leap Forward” movement, killed 45 million of his own people in just four years. Again, though, the numbers are so great they are meaningless statistics. The human mind can visualize 10, 20, or even 100 bodies, but 45 million dead bodies? Hardly, so the number has little or no visual effect.

The deaths caused by Stalin and Mao pale, though, when compared to the numbers piled up by the likes of Pierre Lorillard, Richard Joshua Reynolds, Phillip Morris and others whose tobacco companies are collectively responsible for the deaths of up to a hundred million people in the 20th century. That toll, according to WHO (the World Health Organization) is on track to kill over one billion people in the 21^st century.

Unlike Stalin, Hitler, Mao, and others the Tobacco killers had a murder for money scheme. They persuaded their victims to purchase the poison that killed them. When I smoked, cigarettes were fairly inexpensive. Still, I calculate averaging 35 cents a pack and smoking 3 to 4 packs a day; I paid R. J. Reynolds some $20,000 to kill me. “Winston’s taste good like a cigarette should,” worked on me. Today at $6.00 or more a pack tobacco profits are even higher.

The first few millions of deaths were not aware that the tobacco leaves wrapped in special paper and sold in fancy boxes posed a danger. But, ironically, it made no difference. They bought the soon to be dubbed “cancer sticks in record numbers even when hundreds of health agencies provided proof of their poisonous properties.

Every death was money in the bank.

A hundred million, dead. A billion dead. Who can even begin to comprehend that number of bodies? No one! And the tobacco companies counted on it. I’m sure I’ll be tossed into the statistical “forgotten” heap, too, but maybe one or two of my blogs and those of my “Statistical” colleagues will survive to indicate that we were human beings, that we had some value and deserved better. We are not statistics. We are not digital data points; we are people who lived, loved, and added value to our communities. You cannot silence us by diminishing our importance. Your ashtray of statistics will continue to be exposed as a murderous cover-up, as our chorus of protests overwhelms your statistical graves.

Better, more talented writers than I have tried and failed to get the message across that “tobacco kills.” And while we’ve had some success, people still smoke and “tobacco company profits are soaring.  That great big, ugly tobacco leaf still kills a half million Americans every year. That’s more than alcohol, car accidents, AIDS, illegal drugs (Including opioids), murders, and suicides, combined. Yikes!

I am so incensed by the thought of that many Americans dying from tobacco use; I feel compelled to try again to offer an example of the carnage. The Airbus A-380 that can carry 555 or more passengers is the largest airplane in the world. If two of them crashed every day for a year, and human bodies and body parts covered the crash sites, the toll would equal the number killed by tobacco in a year, and the media would be filled with gory pictures of the crash sites. Politicians voices would dominate the airwaves demanding investigations, newspapers would publish lengthy reports, airline executives would be arrested and jailed, and Airbus would cease to exist.

Still, an equal number of people die from smoking and there is no outrage, there are no protests or investigations and no one, not a single tobacco executive is behind bars. Why? Why is my death less important because of the way I died? Why am I a statistic and the others are real people whose pictures dominate the front pages of the world?  Why is that? It’s because Stalin’s hypothesis is true. I and others like me are cast into that pile of unbelievable, unimaginable statistics because we die quietly without fanfare and gory pictures. We died not in fiery crashes but rather coughing, and in pain, one at a time rather than in large groups.

Let’s beam us back to today for a moment. Is there anyone in the developed world who is not aware that smoking cigarettes is deadly? Anyone? We obediently hand over $6.00 or more daily for a package of 20 neatly wrapped rolls of tobacco. Each sports a “Filter” on one end to make the product “safer,” filters that are deadlier than the poisons they hide, filters that help block only the biggest tar particles while letting through the smaller bits that can travel deeper into your lungs. “The design of cigarette filters, allows smokers to inhale more smoke and to think that the smoke is safer because it is smoother,” says senior author Dr. Peter D. Shields from The Ohio State University’s Wexner Medical Center in Columbus. “This applies to all cigarettes, not just the ones that used to be called “lights” and “Ultra-lights,” he says. The fact of the matter is cigarettes will kill you regardless of the brand or health claim.

Let’s make the picture even more human. We all remember the delightful TV show “ The Flintstones.” Jean Vander Pyl who acted in the famous cartoon series was also a cancer victim. His son, Michael O’Meara had later said:

“Everybody on the Flintstones smoked, and all of them ended up dying of smoking-related diseases….. That little cute laugh that Berry and Wilma did with their mouths closed? They came up with that because when they normally laughed, being smokers, they coughed.”

And finally, this. You can call it either Irony or poetic justice but, R.J. Reynolds Senior, the founder of the company that makes Winston, Camels and other tobacco brands, died of pancreatic cancer, which is tied to tobacco use.

R.J. Reynolds the second, died of emphysema which is caused by cigarette smoking.

And R.J. Reynolds the third also died of emphysema.

Sometimes what goes around, really does come around.

Stay tuned.

A former journalist, Governor’s Press Secretary, and Communications Consultant, Bob Aronson smoked for 37 years. He quit the habit nearly 30 years ago after developing COPD (Chronic Obstructive Pulmonary Disease). A failing heart, probably caused by smoking, resulted in his receiving a heart transplant in 2007. In June of 2018, he was diagnosed with Stage Four Metastatic Lung Cancer, likely caused by his smoking combined with a compromised immune system due to his need for anti-rejection drugs to protect his transplanted heart. He is currently being treated at the Mayo Clinic in Jacksonville, Florida where he lives with his wife Robin and their dogs Reilly and Ziggy.

Got Chronic Pain? The Feds Say You’re a Lying, Addict and Don’t Need Opioids

***Bob Aronson is a 2007 heart transplant recipient. He has also suffered from Chronic pain for several years and doepends on opioids to provide some comfort. He has tried several alternatives, some have been beneficial but he still needs opioids in order to live a somewhat normal life. 

Yes, there is an opioid crisis. Yes, the number of deaths from opioid overdoses is a tragedy, and yes, something must be done to stop the addiction and the dying, but denying pain relief to legitimate chronic pain sufferers is not the way to do it.  There are millions of Americans who suffer daily from chronic pain and need the relief provided by opioids. Everyone is subject to becoming a chronic pain sufferer including transplant recipients.

I have always thought the federal government approach to stopping the opioid addiction/overdose/death epidemic was wrong-headed, but I also thought that the denial of pain relief to legitimate chronic pain patients was accidental, a result of overzealous federal agencies.  I thought that if we protested they would see the light and make the appropriate changes. I’ve never been so wrong. The Federal Government didn’t mistakenly create a problem for chronic pain patients, THEY DID IT ON PURPOSE. WE ARE NOT ACCIDENTAL VICTIMS, WE ARE THE TARGETED GROUP AND WE MUST FIGHT BACK.

Lest you think my claim is just the paranoia of a crazed junkie, let me offer proof in two forms; one personal the other by exposing government policy. First a quick personal experience. I have osteoarthritis and some pinched nerves. The proof of that claim can be seen on my MRIs.

My primary doc has often commented about the pressure applied by the feds to get him to stop prescribing opioids. He suggested I go to a pain clinic where the physicians are pain specialists and allowed more leeway, but even they are closely monitored by the drug cops. The clinic prescribed 15 milligrams of Oxycontin twice a day and 10 milligrams of Hydrocodone once a day for breakthrough pain. That was the regimen for quite some time and while not totally controlled, the pain was manageable. At the same time I was getting steroid injections in my neck and back as alternatives to more opioids. Then, one day without warning the pain doc said they could no longer offer the Hydrocodone. They said that the best they could do for breakthrough pain was Tylenol 4 which contains codeine, a totally ineffective drug for my condition and much less powerful than the Hydrocodone. Now, my pain is not under control but the doc says this is the best he can do under current federal guidelines. I expect that soon I will hear that Oxycontin is no longer available.

The federal agencies involve;d in the opioids issue seem to think that anyone who takes any narcotic pain reliever is an addict, their policies ignore evidence to the contrary. For example; I have never shown signs of addiction, I have never asked for an increase in milligrams or for stronger drugs,  I have never Doctor shopped, and have always passed the random urine tests they give and when I go to the pain clinic I always have the correct number of pills left in the containers. So, why was I denied relief? Because the feds blanket policy wants all opioids use stopped regardless of who is hurt in the process. Not only that, but if you read on you will quickly see that the feds believe that chronic pain patients are liars and addicts and have therefore Targeted us. Then, they turned the torture screws even tighter by specifically targeting Medicare Part D patients. Those are the people who have prescription coverage under Medicare. What follows goes far beyond personal experience, it exposes a broad government policy that targets those who legitimately need the pain relief offered by opioids.

On April 2, 2018, CMS (Centers for Medicare and Medicaid Services) issued updated regulations for Medicare Advantage Plans (MAP) and Medicare Part D programs. The focus of the updates is to provide additional guidelines and tools to target the nation’s growing opioid epidemic. I should note that most, perhaps 90 percent of those affected are older Americans. The Government has targeted chronic pain patients many of whom are senior citizens. Here’s proof. CDC’s Guideline for Prescribing Opioids for chronic pain makes it clear that pain patients should be using alternative therapies that do not include narcotics regardless of the level of pain and effectiveness of the alternative treatment. The Guidelines ignore the fact that many patients cannot afford alternatives, are disabled and unable to get to alternative therapy and that many are uninsured and cannot afford it. https://www.cdc.gov/drugoverdose/pdf/Guidelines_Factsheet-a.pdf  As I did the research, I could not believe what I found, but here’s more of the story.

These new regulations expand Medicare’s ability to identify medication misuse and establish controls at the pharmacy. Already some pharmacies are limiting opioid prescriptions to a 3 or 7-day supply. They are doing it arbitrarily as a blanket program, totally ignoring individual patient histories and medical conditions. Why? Because they believe it is good public relations. This is a business decision, not one to benefit patients. They think their tough stance on opioids will bring them more respect, more customers and greater profits. They are using our misery to make more money. They are gambling that most Americans will praise them for their efforts, when in fact they should be soundly condemned and shamed. The 3 or 7-day prescription limit means the patient with chronic pain will have to see a physician every three or seven days to get a refill prescription (Narcotic prescriptions never allow refills and in most cases cannot be called or faxed in to the Pharmacy.. The Patient must posses the prescription and physically hand it to the pharmacist. At the same time, he or she will also be asked for ID).  Everyone knows that it is nearly impossible to get a doctor’s appointment  every three to seven days, so it is obvious that pharmacies like CVS and Walmart in their quest to be more profitable have joined the Government in calling chronic pain sufferers liars and addicts.

Always remember, these are business decisions. They are made to determine the effect on the business, not for the betterment of humankind. When corporate executives or their boards of directors make decisions like these, their first concern is the bottom line. They do not make decisions based on what’s right or what’s compassionate. When things like 3-day prescriptions are proposed, the first question asked is, “How will that affect the bottom line?” If the answer is negative, acceptance is very unlikely. Don’t be fooled by their advertising or PR efforts. If an effort can’t make money, they don’t do it and, if  they decide to do it and it fails to make money they will quietly withdraw it.

The same is true of Insurance companies. From January 1, 2019 on, those companies that offer Part D plans will have the authority to arbitrarily establish drug management programs for patients they believe are at risk of abusing medications (a good excuse to quit paying for certain drugs, an action that will increase insurance company profitability). They can then determine misuse without ever talking to the patient. That means insurance companies can designate an individual as “at risk” and limit the patient’s access to their list of frequently abused drugs with no patient or physician input. (CDC guidelines for prescribing opioids)  https://www.cdc.gov/drugoverdose/pdf/Guidelines_Factsheet-a.pdf

You can be assured that if Insurance companies see that disallowing Part D payments for pain-relieving drugs will strengthen their bottom line, they will do it. This war on opioids then becomes a profit center for Part D. Insurance companies. CMS (Centers for Medicare and Medicaid Services) says it will designate all opioids, except Buprenorphine (a drug used to treat opioid dependence) and Benzodiazepines (an addictive drug used to treat anxiety, nervousness, panic disorders, muscle spasms, seizures, and more). Benzos will also be designated as a frequently abused drugs but will be excluded from the new guidelines, for a while). You can read more here — CMS proposes Part D Opioid Limits, Pharmacy reacts. http://www.drugtopics.com/drug-topics/news/cms-proposes-part-d-opioid-limits-pharmacy-reacts

There are an estimated 25 million Americans that suffer from Chronic pain, and this new attack will only make the suffering worse. Read what follows, and you’ll have the full story.

The U.S. Government’s war on opioids is led by the DEA (Drug Enforcement Administration), the FDA (Food and Drug Administration) and the CDC (Centers for Disease Control). CDC reports that opioids were involved in 42,249 deaths in 2016, and opioid overdose deaths were five times higher in 2016 than 1 999.

I do not doubt that there is a crisis of major proportions and that something must be done to stop the abuse of these drugs and the mounting death toll. The government approach, though, is over-broad, arbitrary and just plain wrong. They would make opiates unavailable to everyone. That goal fails to recognize that millions of chronic pain sufferers legitimately need to use opioids, and to take them off the market will cause irreparable physical and mental health damage. The government insists there are alternatives to opiates; they ignore the fact that the alternatives don’t work on everyone, that some patients can’t afford them because insurance does not cover them and that many patients are uninsured. The Government program is more likely to force chronic pain sufferers into the street to buy cheaper illegal drugs than to alternative programs that only extend the pain.

Among the targets of the above-mentioned federal agencies are 1) the companies that make opioids, 2) the physicians who prescribe them, 3) the pharmacies that fill the prescriptions and 4) the patients who need them. CDC says that each year, over 200 million opioid prescriptions are written and filled in the United States. In 2012 the number of prescriptions peaked at 255 million. No doubt, that’s a hell of a lot of opioid prescriptions, and the number raises the question, “How many of them are really necessary for pain control and how many do nothing more than satisfy an addiction?” That’s the question the Feds should be asking. Instead, they are acting as though they have the answer and it is, “All of those prescriptions are life-threatening, especially those written for patients who claim to have chronic pain.” Patients, on the other hand, are getting this message, “All of you so-called chronic pain sufferers are liars. You don’t need opioids.”

The feds message to the medical profession is, “We’re watching you and want you to know that we strongly discourage prescribing opioids for repeat patients. If you continue to do that you are placing your license at risk.”” So, who is a repeat patient? That’s me and thousands if not millions like me who must see a physician each month to get a new opioid prescription. There is far less pressure on docs who write a scrip for one or two-time use. That’s someone who broke an arm, and in a few weeks, the pain is gone on its own as opposed to Chronic Pain patients who need on-going relief.

The issue that the feds refuse to address is this; while you are seeking out and trying the alternatives, how do you control the pain? Several pain management specialists have told me that to determine which alternative will work, you must quit using opioids and it may take months to find one that works, or you may never find it. All that time you are experiencing pain so intense as to cause you to have suicidal thoughts or at least thoughts of how death would provide relief. When pain is so bad, it prevents you from doing anything, even those things you used to love, and the feds don’t allow any relief, they are violating this age-old admonition, “First, do no harm.”

As a chronic pain sufferer, I would much prefer to get pain relief from something other than a narcotic. I don’t like the feeling I get from using the drugs. As an intelligent, functioning human being, I much prefer a clear head to one muddled by narcotics. While I am nearly 80 years old, narcotics allow me to be a functioning, productive member of society. I do woodwork, write blogs, just published a science fiction book, engage in discussions in the social media and do the grocery shopping and even some cooking. Without opioid relief I would be reduced to a weeping, grumpy old man who is unable to do anything for himself.

Most politicians are on the anti-opioid bandwagon, they don’t know about chronic pain so we have to tell them. we have to be isiIbecause they’ve only heard a small part of the story. Now it is time to tell our story because if we don’t’ all of us may exit this world in excruciating pain. This time we can’t wait for someone else to fix the problem, we must fix it ourselves by telling our stories to those who can stop this nonsense. Here are some addresses you can write to or call.

House of representatives members and contact info. https://www.house.gov/representatives

U.S. Senate members and contact info. https://www.senate.gov/general/contact_information/senators_cfm.cfm

CMS Contact info https://www.cms.gov/Medicare/Coverage/InfoExchange/contactus.html

DEA contact info https://www.dea.gov/contact.shtml

FDA contact information. https://www.fda.gov/AboutFDA/ContactFDA/default.htm

The White House contact information. https://www.whitehouse.gov/get-involved/write-or-call/

American Pharmacists Association contact information. https://www.pharmacist.com/contact-us

Finally, be in touch with your local media. Suggest stories on chronic pain with this angle, “The feds, physicians, and pharmacies, aren’t telling the whole story. Here’s the chronic pain patient’s perspective.”

Only you can change this wrong-headed, harmful approach to ending addiction to opioids. Tell your story, let the bureaucrats and elected officials know your feelings and your suffering. There are 25 million of us, if we all act, we will be a force that cannot be ignored.

 

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Bob’s Newheart. This site contains nearly 300 Blogs on Organ Donation/Transplantation and Related Issues

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The Opioid Epidemic They Don’t Want You To Think About

Recently on Facebook I posted some thoughts on the opioid crisis. It got a lot of reaction. The opioid crisis of which I speak is not the one that’s in the news every day. This one rarely gets any news coverage.

The one with which you are familiar includes criminals, the addiction and death of our children and greedy physicians who dole out narcotics like Halloween candy.

And then …  there’s the other one, it involves the thousands if not millions of victims of chronic pain who cannot get relief. That second crisis is just as tragic as the first and is generated to a great degree by fear, distrust, ignorance and a total lack of compassion. Every day there are many, many thousands of Americans who suffer unbearable pain and cannot get relief even though it is available. The politicians and instigators who are responsible for this tragedy are so blinded by  their obsession with law and order issues they cannot see the pain and suffering they create in order to satisfy their desire to toss someone in the slammer.

These overly protective know-it-all, know-nothings see a rash of raids where so-called “pill mills” are shut down and physicians and others are rounded up as an epidemic about to sweep away the foundations of our society. In a wild, irrational state of panic they spread ignorance and lies that would have everyone believe that millions are getting painkillers they don’t need from crooked physicians and then selling them on the streets or overdosing.

I am not denying there is a problem. I am complaining that it is being approached in a manner that takes no prisoners and treats everyone with suspicion and disrespect. When an ill-conceived policy is enforced with tactics of intimidation and outright threats, then the policymakers become suspect.

If you read the testimony before congress and in other hearings along with news reports it is easy to see how the unbalanced approach to the opioid epidemic is also causing harm. The doomsayers are warning us all that our children will soon become addicts and likely will die because of the irresponsible physicians who write opioid prescriptions for anyone who asks. Their solution? Paint everyone with the same brush. Make it more difficult to get a pain killer prescription than a seat next to the winning coach at the Chapionship game of the final four.

That’s not to say there isn’t some truth to their crisis claims, but to attempt to shut down narcotics prescriptions all over America is an overreaction that is already generating horrific consequences. This reaction is not dissimilar to the often heard claim that most welfare recipients are cheats and therefore we have to cut welfare programs to the core and beyond.

What is ignored in this crackdown on opioids is that there are thousands and thousands of people who suffer with chronic pain. I’m one of them, my brother is another and I know many more as well. This overreaction to a problem is causing suffering beyond belief. If you’ve never experienced the kind of pain that has you on your knees, crying and begging for relief, then you have no business judging those who are in that situation. If you’ve never had or seen pain so bad, you pray for a quick death then you have no right to suggest policy. If everything you know about drug abuse comes from talk shows and the internet, you have no right to attempt to interfere in the lives of those who live with it every day.

This nationwide irrationality has caused the politicians to pressure the U.S. Drug Enforcement Administration (DEA) and the Food and Drug Administration (FDA) to threaten physicians with overwhelming amounts of paperwork, loss of license and even jail time if they are found to violate or even misinterpret a rule or law. The result is that many physicians just plain refuse to write narcotics prescriptions. There are major healthcare organizations that have adopted the same policy. Most cruel, though, is the action taken by many reputable pain clinics to offer narcotic-free pain relief. Nice claim, but Impossible. No I’m not a doctor but I have intense pain and I know what provides relief and what doesn’t.

Physicians are so afraid of losing their licenses they are refusing to do what they are trained to do — alleviate suffering. They are also in violation of the “First, do no harm,” mandate. It is time that the AMA and other physician’s organizations along with individuals raise their voices in loud and continuing objection to this insanity. Yes, we need rules, yes we need consumer protection laws but no, we don’t need politicians forcing broad rulings and passing overly broad laws that result in increased suffering, like the kind I described.

I have tried every technique for killing pain known to medical science. None of them worked. Only drugs like Oxycontin, Dilaudid and others give me relief and sometimes they aren’t totally effective. No one is more sensitive to the dangers of narcotics than those who are recovering from dependency on them. Often that dependency is not the patient’s fault but it’s all that’s available to help them. I am a recovering alcoholic. Addiction medicine suggests that if you are addicted to one drug like alcohol, then you are subject to becoming addicted to painkillers as well. I know that to be true and I usually take less of my drug than is prescribed. Fortunately I found a real pain clinic, with board certified pain specialists who have been willing to treat me. I pray from month to month, they will be allowed to continue to practice.

All I’m asking is that common sense and compassion play some part in the national discussion on the prescribing of narcotics and in the enforcement of the laws that govern those who write the prescriptions. When you are stricken with cancer, osteoarthritis (my ailment) and so many other conditions that cause unbearable pain you deserve to be able to get some relief. Doctors deserve to be able to practice medicine. Sure they should be arrested if they break the law, but for the government to flood them with paperwork, warnings and other sorts of intimidating tactics is unforgivable.

We don’t live in a black and white world. There are many shades of gray. This paranoia about narcotics is the same as the ignorance that suggests that anyone who takes narcotics will be addicted, or any physician who prescribes them is a greedy criminal. It is the same as believing all welfare recipients are cheating the system and immigrants are inherently dangerous. This incredibly narrow minded approach to any problem is the result of a nation that no longer honors education, refuses to read, gets its information from talk shows and rarely thinks beyond the latest talk show or political one-liner. We have become a nation that believes in junk science, junk history, junk education, junk leaders and junk wisdom. You might be happy with that simple approach to life until you find yourself in need of food, heaalthcare, or compassion. I hope that real wisdom strikes our nation before any of the true-believers in that black and white world develop a condition that causes them unbearable physical pain for which no one will provide relief.

When we expect to gain knowledge in the same way a dispenser pops out Pez candy we diminish our history, our potential and everything for which our founders stood. A mood of selfishness and unreasonable approaches to law and order has grown deep roots in America. Only when we have restored our moral and ethical compass will we stand a chance of emerging as the thought and compassion leader we like to believe we are.

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Don’t Buy a Mobility Scooter Until You Read This

If you have difficulty getting around for any reason a mobility scooter may be in your future but before you run out and buy one, you should read this. It should answer most of your questions and if not it will provide links to sites that can be helpful. This is a serious effort to respond to questions based on my own experience of purchasing three mobility scooters over the past five years for my own use.

I am a 78 year old man with osteoarthritis and COPD (Chronic Obstructive Pulmonary Disease). Pain and limited lungpower make walking more than 50 feet difficult or impossible. Like many of you who have similar impediments I still want to be active, to move around on my own, go shopping, sightseeing and traveling. Mobility scooters have allowed me that freedom and they help to alleviate the depression caused by being disabled.

IMPORTANT. Before you decide that you need any kind of mobility assistance you should be as honest with yourself as possible. Surveys clearly indicate that people who own disability scooters and wheelchairs are likely to overuse them and could risk shortening their lives due to a lack of exercise. While I have both an indoor and an outdoor scooter I only use them when walking is not an option. I never use a scooter inside my home. Any amount of walking I can do is good for me even though it isn’t always comfortable to engage in that activity. Please keep this thought in mind as you read the rest of this report.

You’ve all probably used the supermarket-type electric shopping carts. Don’t compare them to mobility scooters, they are totally different because they are a single purpose vehicle. They are built to stay indoors, carry a lot of weight, turn around in an aisle and move slower than a glacier. All of those qualities are great for a supermarket but serve little purpose at home or for outdoor travel.

 

Will Medicare or private insurance pay for Mobility Scooters?

The best answer is that there are a limited number of cases in which either will offer any financial assistance and at best it will be only 80 percent. The fact is if you want a mobility scooter for the same purposes I do it is likely you will pay for it yourself. Medicare, Medicaid and private insurance all pretty much abide by the rules Medicare has set up to qualify for their involvement. (WARNING! If you are depending on Medicare, Medicaid or other insurance to pay for your scooter SIGN NOTHING until you have their approval in writing, know what kind of scooter they will approve and how much they will pay).

In order to qualify for Medicaid assistance in purchasing a scooter or wheelchair you must be able to provided evidence from your physician that you have a medical need for it. Medicare won’t cover this equipment if it will be used mainly for leisure or recreational activities, or if it’s only needed to move around outside your home. And — you may need to get your power wheelchair or scooter from specific Medicare approved suppliers. For more information you can visit Medicare.gov/supplier, or call 1-800-MEDICARE (1-800-633-4227) for more information. TTY users should call 1-877-486-2048. Or you can use this link for more information. https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html

If your ability to move around or walk very far has become compromised in some way and you are thinking about acquiring a mobility scooter, talk to your physician before you do anything else. You cannot declare yourself disabled, only a physician can make that determination. If you are seeking government financial help for mobility assistance your physician will first have to formally make that declaration. He or she will use certain conditions to determine if you qualify. Most physicians use the criteria established by Medicare and Medicare Part B. Included in these conditions, as outlined on the Medicare website, are:

• Overall strength – To operate a scooter you must be able to sit upright and have the strength in your hands to operate the controls
• Upper body strength – If you have sufficient upper body strength Medicare may require you be prescribed a manual wheel chair rather than an electric mobility scooter
• Ability to balance – If you cannot maintain your balance, you may not qualify for a mobility scooter

You should also be aware that if Medicare pays at all, they will only pay 80% of the cost of a vehicle and, again, only for use IN the home.  You must prove to Medicare via diagnosis by a medical professional that you are indeed disabled and unable to get around your home without such a vehicle. If you want a vehicle for outside use only, neither Medicare nor Medicaid will pay for it. Be aware, too, that changes in the law could have taken place since this was written so it is always best to refer to the links and numbers posted above.

How do I decide on a scooter?

The first thing you must do is determine exactly where you will use your scooter and why. Emotions aside, this decision should be practical and logical. Do you need it to get around your home? If that’s the case and the areas to which you need access are all on one floor with no steps or raised thresholds to cross, then a smaller, less expensive vehicle will do (some older homes are just not suitable for mobility scooters and maybe not even wheelchairs so retrofitting them to be more accommodating could become prohibitively expensive. If your home is compact with lots of turns and little room to turn around you may want to choose a wheelchair because of its tighter turning radius).

This link provides the names of all mobility scooter manufacturers with links to their specific products. https://www.mobilityscootersdirect.com/mobility-scooters/by-brand.html

Below is a striking example of the difference in scooters (specs provided by Drive Devilbiss Medical the manufacturer of the two scooters mentioned. I used these examples because I own them but you should be aware that there is a wide variety of scooters between the two mentioned here. All scooter sales companies have all the specs you need on any given scooter. You’ll find more detailed specs on them by clicking on this link. http://www.drivemedical.com/power-mobility).

Drive Medical Spitfire Scout three wheel, among the lowest priced scooters (about $600). Mainly for indoors.

• Maximum weight it will carry 300 lbs.
• Top speed 4.25
• Range on fully charged battery 9 miles
• Turning radius 45.5“
• Climbing slope 6 degrees
• Ground clearance 2.5“
• Base weight 49 lbs.
• Battery weight 20 lbs.
• Seat weight 16 lbs.
• Total weight 85 lbs. This scooter can be broken down into three parts; the battery, the base and the seat.
• Warranty 16 months on electronics and 6 months on the battery
• Motor 270 watts

Drive Medical Panther four wheel heavy-duty, all-terrain mobility scooter. Expensive (about $3,000). Mainly for outdoors.  

• Maximum weight it can carry 425 lbs.
• Top speed 8 MPH
• Range on fully charged batteries 25 miles
• Ground clearance 4 ‘
• Base weight 145 lbs.
• Battery weight 64 lbs. total for the two batteries)
• Seat weight 55 lbs.
• Total scooter weight 264 lbs. (only the seat is removable)
• Warranty 24 months on electronics, 12 months on batteries.
• Motor – 800 Watts

So back to the question about which scooter is right for you. If you anticipate extensive use in a variety of outdoor environments you are going to pay a hefty price for a “heavy-duty” or “all-terrain” scooter. If you only want something portable that you can throw in the trunk of your car and take into Wal*Mart or a shopping Mall your choices will be far less expensive but the tradeoff is that they need charging more often, won’t carry much more than 300 lbs. and are slow. Prices range from just under $600 to well over $6,000 for more elaborate models. I have a Spitfire for indoor use and a Drive Mobility Panther for outdoor travel. As mentioned earlier neither was paid for by Medicare, Medicaid or private insurance. I knew I did not qualify so I did not even apply.

What if I need to transport my scooter?

All mobility vehicles have the same challenge — you have to get them to where you want to use them. (THIS IS A MAJOR ISSUE, DON’T GLOSS OVER IT.) Some, like the Spitfire Scout, require no added expense because it can be disassembled and tossed in your trunk quite easily often by the user him or herself (you can purchase a rear bumper platform that will elevate and secure the scooter for outside your car or van transportation but these can be costly)..

The Panther or one like it does not disassemble (except for the seat) will require a mechanism to lift it or pull it inside a van (these pieces can be expensive). Because my wife Robin is an artist who sells her creations at art fairs around the south and central U.S. we have a high top van. We cut the expense of transporting the scooter significantly by building a special compartment in the van with access through the side door. A folding aluminum ramp cost about $200, a remote controlled winch was another $100 and we used one of those jump-start batteries to power the winch which cost another $100. The rest is easy. I drive the scooter to the edge of the ramp, connect the winch hook to the frame of the scooter and with a flick of a switch on the remote control, pull the scooter into the van. The whole process from setting up the ramp to securing the scooter inside takes about 5 minutes.

If you don’t want or need to transport your scooter and only need to drive it out your front door to the corner store then you will have very few problems. You may need a ramp to get in and out of the house and a place to store the ramp and scooter inside, but that’s about all. Remember, too, that indoor scooters are certainly capable of traveling outside the home but they don’t do well in any kind of rough or uneven terrain.

Just as small scooters can be used outdoors, heavy-duty scooters can be used indoors – sometimes. They usually don’t do well because of their size (the Spitfire Is 42 inches long and has no back basket. The Panther is 56 inches long without the rear basket and 62 inches with it). Heavy duty scooters are big, bulky and have a wider turning radius, so unless you live in spacious one floor home or apartment they are not of much use in a home. Outside of the home they are wonderful. About three times a week I take my Panther on the two mile round trip to our Publix Supermarket. I drive it right into the market, fill my baskets with whatever I need, go through the checkout and drive out again.

Once I decide on the size of scooter, should I get 3 or 4 wheels?

Both types have advantages and disadvantages. Three wheel scooters have a much tighter turning radius and are usually more maneuverable around the house and in tight places they are also a little lighter and sometimes a few dollars less than their 4 wheeled siblings. On the minus side they are not as capable in rougher terrains because they can tip onto their sides. I have had that happen a couple of times with an older three wheel scooter. If you approach a bump or curb at an angle instead of head-on you run the risk of tipping. Finding yourself on your side on a sidewalk, a berm or in the street with your groceries rolling around is not a comfortable feeling. When I tipped it was when crossing a street probably due to my driving error. A scooter doesn’t respond like a car or resemble the family auto in any way. If driven properly they are quite safe, but if you violate the instructions you could be seriously injured. When climbing a curb or going over an elevation in the ground the driver must be careful to follow the instructions in the owner’s manual. Most people ignore the instructions or warnings in a manual. Don’t! Read them a couple of times.

Do I need a Ramp for any reason?

An often overlooked item is a ramp. If you keep your scooter in the house and want to take it out the front door, even if it is at ground level you may need a small ramp to keep from getting hung up on the threshold. If you are going to do that often, please consider having a ramp built according to the disability codes in your city. If you rarely go out, a small folding aluminum ramp could be a great help. The weight of a ramp, though, depends on how long it is and the ADA (Americans with Disabilities Act) has requirements for how long a ramp should be. This link will help you determine the proper size for your needs. https://mobilitybasics.ca/wheelchair-ramps/ramp-length-calculator Google mobility scooter ramps for your city and you’ll likely find several places from which to choose. If not you can order from places like Amazon, Google, EBay and several others.

Is ground clearance an important consideration?

Ground clearance is another important issue to consider in your scooter. You will need enough to be able to clear objects that might get in your way. The term describes how far off the ground the lowest point of the scooter not in contact with the ground is. Ground clearance is an very important consideration for outdoor scooters that might need to traverse an uneven or poorly maintained surface. Too little clearance can result in getting your scooter hung up and unable to move, or worse yet, might cause it to tip over.  It is important, too, in those cities where standard disability curb-cuts have not been constructed on sidewalks. You will often find either a standard old curbs or the sloped variety.  A scooter with less than 4 inches of ground clearance may have some trouble negotiating these hazards. If your scooter is to be used around the home, then clearance is not as important but if you are going outside the home, you may want to consider heavy-duty or all-terrain scooters.

Do I really need the “lighting package” that scooters offer?

Many people ignore this feature but you could really be sorry if you find yourself out at night in the dark. Even if you think you will never have to take your scooter outside, I can assure you that at some point that’s where you will find yourself. For example, we have dogs. Dogs need to be walked. I have difficulty walking so I learned to take them for a “scooter walk.” If you have an indoors scooter it likely will have minimal ground clearance. You may need the lights to see the uneven ground ahead of you to avoid damaging your scooter or, worse yet, tipping and hurting yourself. Scooters, even the big ones, are hard to see so if you decide to purchase a bare bones, no lighting scooter, go to Wal*Mart or Target and purchase a headlight, a taillight and some reflectors for the back and sides. You should be able to get all three for under $20 at the stores mentioned, at any bicycle supply dealer or from any of the on-line sellers like Amazon and EBay. All scooters are very close to the ground and it pays to be lit up like a Christmas tree along with having one of those bicycle or scooter safety flags on the back.  I don’t recommend driving your scooter on the street but sometimes it is unavoidable….that means you should also have a rear view mirror and even a horn.  You need to be totally aware of your surroundings and you need to let your surroundings know you are there.

I weigh less than 200 lbs. and the scooter will carry 300 isn’t that enough?

Maybe 300 lbs. is adequate, chances are it is but take nothing for granted. Think about the situations you might be in and what you might need to carry in your lap, on the floor and/or in the basket. Your scooter should be able to support what you need like oxygen tanks, crutches, a walker, drinks, groceries or other purchases. Taking the time to consider your needs could save you money in the long run.

Is the size and type of tires important?

Yes, those are important considerations. There are two types of tires; pneumatic (air-filled), and solid-core tires (no flats). Air-filled tires are a good choice if the quality of your ride is important. That’s especially true of the larger scooters that have four-wheel suspension (springs) where the shock of hitting a bump is dampened before it gets to your rump. The air-filled tires help absorb some of the shock. Smaller scooters don’t have suspension of any kind so they ride like a skate board anyway. Most of them don’t come with pneumatic tires. There are circumstances where tires become extremely important and that is almost always outside of the home. Bigger, wider, tougher tires are a necessity if you are traveling over rough terrain, near construction sites, in sand or grass or a number of other situations. Thin, small tires likely will get stuck very quickly in adverse conditions. Scooters for use out of doors should always have tires that are at least 10 or 12 inches in diameter and 3 inches wide (the Panther’s tires are 14 X 4)

How long does it take to charge scooter batteries?

How deep is the ocean? It depends on the scooter and the batteries. Manufacturers list that information and more with each scooter but it there are several variables. Usually the first charge should be overnight. After that, look to your owner’s manual (many owner’s manuals can be downloaded before you buy a scooter just Google (brand and name of scooter like Spitfire) owner’s manual).

When the maker says a scooter has a range of 20 miles, is that accurate?

Well, kind of. I’m not sure if all manufacturers use the same criteria for making that determination but how far you can go depends entirely on how much weight the scooter is carrying, how fast you are going and if the battery was fully charged when you left.  The fact is I rarely ever even consider the range because most of my trips are short and I put the scooter on the charger when I return from my journey. In five years of riding scooters I have never even come close to running out of power.

I’m sure you have other questions but I hope those provided cover your key concerns. Scooters aren’t for everyone. Some people don’t have the coordination, strength or concentration to operate a scooter. Hopefully your physician will tell you that. In many cases a power wheelchair might be a better choice, but that’s a discussion for another day. I have no experience with wheelchairs and will have to do considerable research to be sure I’m offering accurate information.

Scooters are not meant to be like motorized ATVs, motorcycles, or SUVs. They were not designed or built to be recreational vehicles either. They are designed to help disabled persons get from point A to point B. A mobility scooter is not a toy but it is also not a car or bus. You can have the most decked-out, high-priced scooter ever made and it still won’t perform like a car or an ATV. Your 150 lb. scooter traveling at 7 miles an hour is no match for a 3500 lb. car going 45 or 50. Remember that if you think about getting off the sidewalk and onto the street. Be cautious, responsible and extremely careful. Keep in mind that you have a scooter and it should be ridden on sidewalks and paved areas. Avoid riding on streets. Even the fastest of scooters will only go 15 miles an hour, far too slow to stay with traffic and far too small to be seen. However, if construction or other barriers force you to get into the flow of traffic on a street and your scooter has a lighting package turn on your flashers, put up a safety flag and look for a place to get back on the sidewalk as fast as possible.

Good luck with your decision and please, be careful out there.  If you have comments or questions include them in the space provided. If you would like to contact me directly you can at bob@baronson.org

And from where I sit, that’s the truth.

Peace.

Bob’s Newheart. This site contains nearly 300 Blogs on Organ Donation/Transplantation and Related Issues

Feel free to share any of the blogs you find here without permission but with attribution. Your comments are welcome.

What Happens If and When Obamacare is Repealed

Donald Trump and the Republicans have vowed to repeal and replace the Affordable Care Act and it is very likely they will follow through. If they repeal the ACA and do not replace it with something comparable or better, as many as 25 million people could be without insurance by 2020. Additionally, many if not most people may have less comprehensive coverage and higher co-pays, but that all depends on what kind of replacement plan the congress approves if any. And that — is only the tip of this ugly iceberg.

This blog only deals with repeal while the House has approved a replacement bill, the U.S. Senate has not. We will cover that as thoroughly as possible when it happens.

Few remember this, but just before ACA passed in 2010 the health insurance companies hiked their rates significantly. Since then they have raised rates several more times. Let’s be clear here, ACA is NOT raising your rates, there is no provision in the act that allows for that. Many have complained that ACA is responsible for increased rates, but that’s really an empty claim because we don’t know what insurance rates would have done if there was no ACA. One thing for sure, rate hikes always come from the Insurance companies. If ACA is repealed you will get far less coverage, but you can be sure the insurance companies don’t reduce their rates by a single dime.

If ACA is repealed everyone will feel it, even the very wealthy. The difference is they can afford to self-insure– maybe. Today the cost of some procedures and care is so high that it might even hurt the mega rich to have to pay out-of-pocket. 10 years ago I had a heart transplant. According to the National Transplant Foundation, the average cost today for the same procedure would be $1.2 million. That price includes first-year medications and care. You can review other costs here. (http://www.transplants.org/faq/how-much-does-transplant-cost). A heart/lung transplant would cost $2.3 million. That would make even a wealthy person sit up and take notice.  (If you would like to examine the effect of ACA on health care costs Gary Cameron of the Reuters news service.wrote this for Time.http://time.com/money/4503325/obama-health-care-costs-obamacare/ )

The Trump administration is also talking about cuts to both Medicare and Medicaid. It remains to be seen what that means but this congress is in a cutting mood, so it is unlikely that their actions will result in anything beneficial to many with chronic illnesses. You can also expect that if there was ever any hope of extending coverage for anti-rejection drugs past 36 months for Kidney transplant patients it ended with Trump’s Inauguration.

Very few people are aware that Medicare is also affected by repeal of Obamacare. There are several areas that will be negatively impacted but the part that helps seniors with Prescription costs will take the biggest hit.

The Senate bill slashes tax revenues by $701 billion over a decade, while reducing Medicaid spending by $772 billion versus current law. Overall, the Senate bill reduces federal health care spending by $1 trillion.

The Center for Budget and Policy Priorities estimates the bill’s tax benefits for the 400 highest earning households in America alone are equal to the cost of keeping Obamacare’s Medicaid expansion in four states that cover 726,000 people.

• The ACA helps seniors in the donut hole until it is closed. Copayments required for brand-name and generic drugs are being phased down to the standard 25 percent by 2020. Brand-name drugs discounts from manufacturers increase each year in the coverage gap. Copayments for generic drugs are reduced by seven percentage points each year until the coverage gap is eliminated.

• In 2016, seniors receive a 55 percent discount on brand-name prescription drugs and a 42 percent discount on generic drugs, which is applied at the pharmacy. Below are the amounts that beneficiaries will pay for their medications until the donut hole is closed in 2020.
  • 2016: 45 percent for brand-names and 58 percent for generics
  • 2017: 40 percent for brand-names and 51 percent for generics
  • 2018: 35 percent for brand-names and 44 percent for generics
  • 2019: 30 percent for brand-names and 37 percent for generics
  • 2020: 25 percent for brand-names and 25 percent for generics

Ever since the Affordable Care Act (ACA) passed in 2010, Republicans have vowed to repeal it. They have made many claims about what a “Disaster” it is, but offer little in the way of evidence other than point to increased premiums. Premiums, though, were out of control long before there was an ACA and many experts say that if anything the sweeping health care bill slowed their increase. If Republicans are successful in repealing the act you will be affected in many ways, now and in the future. I’d like to keep this blog relatively short so I will only address four issues here, but they are big ones.

1. Pre-existing conditions
2. Children on your policy until age 26
3. Medicaid changes
4. Medicare adjustments

Effect Number One. Pre-existing Conditions

People have short memories so let me remind you what the health insurance environment was like prior to 2010. Example. A woman I know was having problems sleeping,, that’s all. She was in otherwise excellent health. To help her sleep, her doctor prescribed Remeron which is also an anti-depressant. Due to family circumstances, she had to move to a different state, a state in which her current health insurance had no coverage. She thought nothing of it because she was healthy, so she shopped around for new insurance, found one she liked and applied. Almost immediately she was denied coverage due to a pre-existing condition of depression even though she was not suffering from depression. The drug, Remeron, was prescribed to help her sleep but the new insurance company ignored that detail. Her only option was to keep her old insurance from another state even though she was out of network. Under those circumstances, this healthy woman had become uninsurable because of one medication that was not even prescribed for the purpose identified in the rejection notice. That is what we likely will be returning to. But there’s more.

If the ACA is repealed without a replacement plan and maybe even with one here’s what you can expect.

Let’s say a young couple finds they are about to have a child. The husband just got a new job in another state so they will have to move and get new insurance as well. Here’s what they are likely to run into if ACA is repealed.

• Pregnancy could easily be considered a pre-existing condition, at least the insurance companies would have that option. That means when this family looks for new coverage insurers could deny it or charge exorbitant rates.
• Even if they got insurance, the plan would likely not include maternity coverage, as was the case for over 60 percent of enrollees in individual market plans in 2011.
• They’d get no financial assistance to help ensure they can find a good plan within their budget and there would be no help in paying their out-of-pocket costs.
• Healthy pregnancy, births, and newborns programs would no longer exist, putting the family at greater risk for other health problems.
• And the family would likely have to pay out of pocket for each new baby visit and any ensuing treatments, injections or other procedures.

Some estimates indicate that nearly a half of all Americans have a pre-existing medical condition that could make it difficult to find insurance, and about 3 million of them are now insured under the ACA. If and when it is repealed those who have insurance could lose it and those without insurance, or who leave their old plans for any reason such as job change, divorce, or relocation, may find it impossible to get a new plan. The Kaiser Family Foundation projects that if the pre-existing conditions provision is repealed, 52 million Americans could be at risk of being denied health care coverage.

Effect Number Two. Children Covered by Parent’s Insurance to Age 26

If ACA is repealed and not replaced with something equivalent or better, that means that once you turn 19 or are no longer a full-time student, you are on your own for insurance coverage, increasing the financial burden on young adults who are unemployed, underemployed, contractors, working for small companies, or those starting their own businesses. Young people are less likely to get seriously ill and often don’t use insurance when they have it. Insurance companies would love to have these men and women paying premiums again, though, because they use so little of the coverage and help to defray the cost of covering others.

This is a popular benefit among some Republican office holders because their children are affected so it might be added to whatever replacement the GOP drafts, although the age limit could potentially get lowered by a year or two.

Effect Number Three. Medicaid

One of the most appealing aspects of health-care reform for many was the ability to get subsidized insurance policies, reducing out-of-pocket costs. According to Kaiser Health News, all but 19 states expanded the income limits for people to get Medicaid insurance and in some cases limits were pushed to 300 percent of the federal poverty level. Also, tax credits beyond that helped even middle-class workers and families afford their monthly premiums. The Affordable Care Act was affordable largely because of the Government subsidies. While all Republicans in congress opposed the expansion of Medicaid, many Republican State Governors accepted the plan for their states. Medicaid is funded by the Feds but run by the states. If ACA is repealed and Medicaid expansion goes out the window the states will be left with the choice of funding it or telling their citizens that they are cutting the program. That could have disastrous effects for Republicans in coming elections.

Based on the resistance that red states had to the idea of expanding Medicaid coverage in the first place — even with the federal government covering almost all of the expense — it will not be surprising to see a GOP plan that either decreases or completely remove the tax credits or other subsidies. Almost all Republicans agree it must go. There seems to be little agreement on if or how to replace it.

Effect Number Four. Medicare  Cuts

Here comes trouble. Like Social Security this is the healthcare third rail, it can mean political suicide for anyone that makes any negative changes in the national health care system for people age 65 and over. The great majority of them are not working, have no income other than Social Security and some savings and they are uninsurable outside of Medicare (supplemental programs excepted). Some see Medicare as totally separate from the ACA and in some ways it is, but they are also intertwined. Too many seniors think they are immune from change, they are not.

According to the Kaiser Foundation, a full repeal of ACA would restore higher payments for services performed under the managed-care portion of Medicare known as Medicare Advantage.  That, then, could lead to increased Medicare Advantage premiums. It could also mean an end to free preventive services and could result in greater premiums and increased out-of-pocket costs, or both.

Perhaps the most notable change would be to reverse efforts to close the “doughnut hole” for prescription drugs. One provision of the Affordable Care Act dramatically cut the amount that seniors on Medicare have to pay for their medicines under Medicare Part D. prior to the ACA’s passage, beneficiaries got some coverage up to a certain dollar amount, and then none until high-dollar, catastrophic coverage provisions kicked in. Once in that “donut hole” seniors paid the full price. Under ACA that coverage gap was supposed to end in 2020.

Now here’s what they are NOT telling you. It is now projected that ACA spending between now and 2020 is $1 trillion LOWER than the original Congressional Budget Office estimate. That means the trust fund for Medicare is now projected to remain solvent 11 years longer than before the Affordable Care Act was enacted. Strangely none of the repeal advocates has mentioned that fact.

For these reasons, it is important to be clear. The repeal of Obamacare will mean that Medicare beneficiaries will have to pay millions more for prescription drugs and won’t have access to free preventive care, while the program itself will be put in financial jeopardy.

As long as this blog is,  it doesn’t begin to cover the full impact of ACA repeal and it says nothing about replacement because we have been unable to find a single plan for doing that that has been released. There are several people who say they have plans, but none have provided documents yet.  We’ll keep our eye on it and do what we can to keep you informed. We’ll report more as we can.

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Bob Aronson is the founder of Facebook’s 4300 member Organ Transplant Initiative and also of this site, Bob’s Newheart. Look through the index and you’ll find nearly 300 blogs of interest to Transplant patients, their families, friends, caregivers, donors and donor families. 

Donor Mom Meets Man with Son’s Heart

When I stand before God at the end of my life, I hope I have given away my talents, my love and my organs and can say, “God I used everything you gave me to benefit others. Anonymous

By Bob Aronson

The time had come. Claire Connelly was finally going to meet the man who had her son Paul’s heart. She would travel from southern to northern California by train to meet him. This trip was more than just an opportunity to meet the man, it was the culmination of a three-year long search. Claire was determined to let nothing get in the way of this meeting. She was so afraid that she might oversleep and miss her train, she drove to the Amtrak station the evening before and slept in her van in the parking lot. Meeting her son’s’ heart recipient had become Claire’s sole purpose in life, so when she boarded that train last Monday morning her heart was in her throat.

The recipient’s name is Ken, he cherishes his privacy and we agreed to identify him only by that name. He is retired and lives with his wife in a northern California city. Claire was not only invited to meet Ken and his wife, but also to stay in their home for a few days so they could get to know each other

Before we go any further, let me take a moment to remind you who Claire Connelly is. I wrote about her in a blog on October 21, 2016. To meet her, even by phone is to love her. She is kind, upbeat, considerate and passionate about life and living. Claire is your favorite aunt — you know, the one who is funny, always has a gift for you and really listens to what you have to say. She’s one of those people who brings energy and love of life into any conversation. When you talk; with Claire you can’t help but feel good.

Claire’s son Paul

Claire has suffered unimaginable pain in her life. She had three children, two boys and a girl. Now, only the daughter remains. Her son Pete died of cancer at the age of 46 in 2008, and 49-year-old Paul’s life was taken by a stroke in 2013. Losing two sons within five years is tragic enough, but Claire’s pain was compounded because they died on the same date — October 13. “What are the odds,” she asks. “What are the odds that you would lose two sons within five years of one another and on the same date on the calendar?”

When she was called to the hospital in 2013 Paul was on life support. His driver’s license indicated that he was an organ donor, so when asked if she wanted to donate his organs, Claire Agreed immediately. She does not know who got his other organs, but she’s satisfied to know that Ken got his heart.

I could feebly try to describe her feelings about meeting Ken, but that would be wrong. Her own words provide drama and emotion that I could not begin to write. When she got on the train on December 12, she carried with her some gifts for her son’s heart recipient along with a stethoscope so she could listen to his heart.  As soon as she boarded, she sent me a text, “On the train. On way to meet Ken,” she said. Her writing describes the stream of random thoughts that somehow merged like two sets of railroad tracks. Claire kept a journal as the train sped north. If you close your eyes you can almost hear the clacking of the wheels on the track and the whistle being blown as intersections are crossed.

The words that follow are Claire’s from her journal. When you read them you will have the rare privilege of being able to listen in on a mom’s thoughts as she anticipates hearing her son’s beating heart for the first time in three years.

“Getting to meet Ken is the very best Christmas present I could have ever received, but let me make one thing very clear, this is not my story or Ken’s. My son Paul is the hero here. Long ago he made the decision to become an organ donor. All I did was to ensure that his wishes were fulfilled.

Ken and I have been speaking by phone since August 12 and now I’m actually on the train going to meet him and his wife.  He is alive today because my wonderful son Paul made the

Claire and Ken’s wife Janice

 

courageous decision to become an organ donor.

Ken has expressed his gratitude many times, but more than that he lives his gratitude. This kind gentleman will not drink alcohol or coffee because he has “too much respect” for Paul’s heart! Oh lord, my soul can finally rest knowing that Paul’s heart has found the best possible safe harbor. To know that I gave birth to the heart that is beating within this man’s chest and that he is sharing my own DNA as he sits across from me or goes about his day is something I can barely get my head around!

Recently I found a photo of a Paul when he was just four years old. He was holding his

Jan trimming the tree

fishing pole, Oh how he loved fishing and wouldn’t you know it, Ken loves fishing, too! I had that picture framed to give to Ken because that sport is his passion and I wanted him to know he had the heart of a fisherman. Strange but there were some other links I discovered, too. For example, they both drove the same model of pickup truck and both smoked the same type of Cigarillos.

Because of our telephone, text and email contact, I now have a bond with this remarkable man that is as close as any other I have and it warms my heart to know that he is in this world. What might appear to some as a quick four-day trip would be to miss the point. I’ve been on this journey for three long years, a journey that would reunite me with the essence of Paul. The anticipation of leaving the melancholy life i have known for the past three years and approaching a new fulfilling relationship with my new “son” kept me on the verge of tears until our initial embrace.” 

When the train arrived and squeaked and squealed to a slow stop. Claire got up from her seat and headed for the door. Ken and Jan were there waiting for her. The meeting was almost wordless, yet spoke reams. Again, Claire’s words.

“Immediately when I got off the train there were lots of long hugs. It seems as though none of us wanted to let go, but eventually, we got in the car, had a lovely dinner and talked and hugged again till late in the evening.

There were plenty of hugs for everyone

The following day, we spent in our jammies, just hanging out at the house, everyone comfortable with each other. That’s when I brought out the mementos. A coffee mug that said, “I had a change of heart,” Paul’s fishing picture, Paul’s key ring, a special pencil that was engraved with Paul’s name and some other things that I either made or purchased. Ken loved all of them, he even has a collection of keys.

Still in our jammies, we continued to talk as we set up and decorated the Christmas tree. We
had so much fun doing it, it was so meaningful we committed to making it a tradition and doing it every year.

Finally, I hollered into the living room, “Ken, bring that heart in here, I want to listen to it.” I had my stethoscope in my hand.  

He stood in front of me and with the earpieces in, I touched the chest piece to where I thought his heart was but heard nothing. I kept trying but couldn’t seem to find it and

It was then that Ken took my hand and the stethoscope chest piece and placed it on his heart. Then — then I heard the soft, steady, rhythm, “Thump thump – thump

After three years she hears Paul’s heart again. A part of her son is still alive.

I was listening to my son’s heart again. My eyes filled with tears and I got a lump in my throat, I couldn’t stop listening. Paul’s heart was keeping this lovely man alive. I thought to myself, I can now rest. The long wait is over and I no longer have to wonder. I am at long last at peace with the world. I finally heard Paul’s heart. A part of my son was alive and well.

Ken told me that just before the transplant, the Surgeon asked him if he wanted to see the heart. When he looked, it started to beat and the doctor said, “This heart wants to live,” and the procedure was started. Ken said he was told that his transplant only took seven hours, a much shorter time than usual. He was also told it was the smoothest, least complicated transplant the Doctor had done.”

Hearts are amazing organs. A man’s heart, for example, beats 70 times a minute. A woman’s heart is a little faster. The thumping sound you hear is really the sound of the four valves opening and closing in a process that pumps a million barrels of blood in an average lifetime. To do so it will beat 2.5 billion times. To put it in perspective, If you were to turn on your kitchen faucet all the way and let it run for 45 years, that would be equivalent to the amount of blood a heart pumps in a lifetime. That’s pretty amazing.

All good things must end it is said, and so it was for this visit. After four days together Ken and Jan took Claire to the train station for the ride home. It was bittersweet. Bitter because she didn’t’ really want to leave, but sweet because she had so many wonderful memories to carry with her and sustain her. Claire finally had some kind of closure. Again, her words.

“When we got to the train, Ken boarded with me to make sure I was comfortable. He seemed very concerned about me and did everything he could to make sure I would have a pleasant trip back home. I sat there for a few minutes and then felt I just had to see him one more time, so I got up and went to the door and, and there he was, waving and saying, “Bye mom, bye.”

Now I’m home again with so many wonderful memories and with so many pictures to remind me of my journey and of my new son. I will go back, we will meet again. I don’t know where or when, but it will happen.”

When Claire spoke of meeting Ken and Jan again, I could almost hear that wonderful song playing in the background.

We’ll meet again
Don’t know where
Don’t know when
But I know
We’ll meet again
Some sunny day

Keep smilin’ through
Just like you
Always do
‘Til the blue skies drive
The dark clouds
Far away

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Bob Aronson is a 2007 heart transplant recipient and the founder of this blog which contains nearly 300 posts on donation/transplantation and associated issues. If you need a support group, please join Facebook’s Organ Transplant Initiative. And if you are not yet an organ donor, sign up now, it takes almost none of your time and you can do it from where you are sitting. Log on to http://www.donatelife.net and make the commitment now. Then, tell your family your decision so there is no confusion when the time comes.

32 Years Of Altruistic Organ Donation and The Death Toll Is Rising. Is it Time For a Change?

By Bob Aronson

Over the years I’ve written a great deal about organ donation and whether we should continue with the altruistic program we have now, or consider some sort of compensation for organ donors and/or families.

The problem is huge, bigger than huge because 22 people die every day that could have lived had enough people become organ donors.

So, let’s start with the problem. Well, it’s a big one. 120,000 plus people on the waiting list and under 30,000 transplants performed each year with those organs coming from just 13,000 donors. That means you have about a 25% chance of getting a transplant if you can even make it onto the list. That percentage goes down each year because the number of donors is not keeping up with the number of people being added to the list. So, the longer you wait, the less likely you are to get an organ. If you really study those numbers you can understand why patients awaiting new organs are nervous and you can understand the urgency. You see, they are on the list because modern medicine has run out options. These patients have been told they will die unless they get new organs. I was on that list, I know of what I speak. In my case all the stars lined up just right and I got a new heart. I was beyond lucky.

So – from where do the organs come?  The answer is that the number of transplantable organs depends entirely on a national voluntary or “altruistic” system where people donate organs out of the goodness of their hearts. We’ve been doing that since NOTA (the National Organ Transplant Act) was passed by congress in 1984.  Here is the most current list of human organs that can be transplanted. In case you are wondering, here’s what can be transplanted; liver, kidney, pancreas, kidney/pancreas (can be done at same time), heart, lung, heart/lung (can be done at same time). Intestine, vascularized composite allografts (VCAs), such as face and hand transplantation.

Here’s where I start getting into trouble. Logic would indicate that if a system put in place over 30 years ago keeps falling farther and farther behind the demand, then I cannot help but think the system is failing.  The system is not a total failure because it does save many lives, but it is failing because the gap between supply and demand is widening. Now I suspect that some people will argue the “Failing” point, but you can’t argue with the numbers. The system isn’t working. And every time new approaches are proposed, like some sort of compensation, the ethicists loudly proclaim that the practice would be unethical. Ok, but what’s ethical about allowing 8,000 people to die each year because there are not enough organs? Why isn’t someone questioning the ethics of that fact?

Before we get into what can be done about the organ shortage we should discuss briefly the two kinds of organ donors. There are living donors, people who can donate one of their two kidneys or a part of a liver. And – there are deceased donors. In both cases insurance will pay for the removal and transplantation of the organs, it costs the donor absolutely nothing. But there are other expenses that are not paid.

Let’s start with living donors. In order to qualify they must undergo a series of tests, then travel to the transplant site, have a short hospital stay following the recovery of the organ and then travel back home. And, God forbid, there could be complications down the road.

None of those expenses are covered by insurance. When you have to take time off of work to be tested, pay for travel, lodging more time off for the surgery and then travel home again, and maybe suffer complications later, the dollars can begin to add up.  Again, logic says there just might be more living donors if their costs were covered. As it is they act as disincentives.

The same, unfortunately, is true for deceased donors and their families. Many of these donors have been hospitalized for a long time before they died. Then, of course, there was terrible grief followed by funeral arrangements. Again, while insurance paid for the recovery of the organs and all medical costs associated with procedure, some families were left with only a, “Thank you,” and a pile of medical bills topped by funeral expenses. Sometimes these burdens are unbearable for families.

Here’s an example. In 1993 a man later identified as William Michael Lucas, 34, an unemployed man was badly beaten outside his home. He was taken to the hospital and treated, but finally after an extended and expensive hospital stay, succumbed to his massive injuries. It was determined that some of his organs were transplantable and his heart and liver went to Pennsylvania Governor Robert Casey.

The transplant was successful and Governor Casey went on to live for another seven years. Not only did Lucas save Governor Casey’s life, everyone who took part in the organ recovery and transplant was paid which includes, clinics, hospitals, surgeons, medical staff, and the Organ Procurement Organization (OPO) among others.

While all this was happening the Lucas family didn’t get a penny. All they got was inconsolable grief and a deluge of medical bills and threats from creditors. It is now well over 20 years since the transplant and a $6,200 funeral still remains unpaid. Somehow, to me, this just isn’t right. Everyone got paid for the role they played in Mr. Lucas’ gift of life — everyone, that is, expect for the Lucas family. Now ask yourself, is that fair?

I want to be perfectly clear here, I have no problem with those mentioned getting paid, they are all people and organizations with very special skills and they deserve to be compensated. But didn’t the Lucas family deserve some consideration. Wouldn’t it make just a little bit of sense to relieve them of the medical bills and the funeral burden and maybe some grief counseling, too? That seems only fair.

I am not suggesting for a moment that families get paid, that there be a cash value for organs. That would be wrong and it would violate U.S. law. It is illegal to sell or buy human organs. I have to believe, though, that people might give organ donation a little more consideration if they knew that the financial burden that usually goes with it would be relieved.

What I am suggesting is not a radical argument. If Medicare and other insurance coverage can come up with the dollars to pay the huge costs of paying transplant teams and all the others associated with the procedure, they certainly can find a way to defray the costs to the donor.

Medicare could easily find the money to do this if they were allowed to do two things. One is to negotiate the price of prescription drugs and the other is to pay for anti-rejection drugs beyond the three year limit which is in effect now for non-Medicare enrolled patients.

As a part of the Medicare Part D. Agreement under President George W. Bush insurance companies were talked into cooperating by guaranteeing them they could charge Medicare whatever their retail price was for drugs. In other words, Medicare was not allowed to negotiate the price of drugs. The VA can do that, but not Medicare. Negotiating drug prices would bring them down far enough to pay for the organ donation expenses suffered by some organ donors.

The second issue that would help is this one and it is a doozer. It is so absurd it is beyond one’s ability to comprehend. Of the 120,000 people on the transplant list some 82 percent are Kidney patients. Under a law passed years ago Kidney patients and only Kidney patients who are not of Medicare age can have organ transplants paid for by Medicare and Medicare will pay for anti-rejection drugs for 36 months. If you are of Medicare age the agency will pay for those drugs for the life of the patient.

This policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will even pay for another transplant and/or dialysis at costs that are many times the annual expense of immunosuppressant drugs. This political sleight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Medicare spends around $90.000 per year for an individual who is on dialysis and $125,000 during the first year of a kidney transplant. However, after that first year the transplant patient’s drug costs plummet to $25,000 or a little over $2,000 a month.  Not many people have an easy time paying that bill but for the federal government it would be a cost saving measure to cover the drugs rather than pay for a new transplant or more dialysis.  Furthermore, extending immunosuppressive coverage beyond the 36-month post-transplant limit would improve outcomes and enable more kidney patients who lack adequate insurance to consider transplantation. Most transplant recipients also have a higher quality of life, and are more likely to return to work than dialysis patients and if they return to work, they start paying taxes again.

So what are the options for increasing the number of human organs for transplant. Well, the list is not a long one.

Presumed consent. That means everyone is automatically considered a donor unless they opt out and everyone would have that opportunity. Spain is one of the nation’s that has adopted this policy and it has become the world’s leader in organ donation, despite the fact that it still gives families of the prospective donor the right to approve or disapprove of the idea. Spain’s deceased organ donation rate is 36 per one million inhabitants. It is ten less in the United States at 26 per million.

Mandatory organ donation. While this is certainly an option. It is most unlikely. Polls have indicated public opinion is overwhelmingly opposed to such an idea.

The Life Sharers option.  Life Sharers is a 12000 member group that pledges to donate organs with the idea that only organ donors should get organs if they should need a transplant. It might be a decent idea, but it has never really caught on and is not growing fast enough to have any significant impact on the organ shortage.

Legalize the sale of human organs. It is unlikely that such a proposal would be approved in the United States. The only nation in the world that allows for it is Iran and Iran, as a result, has no organ shortage. In Iran Two charities facilitate the process by finding potential vendors and introducing them to the recipients, and are charged with checking the compatibility of a possible donation and ensuring a fair trade.  After the transplant, the vendor is compensated by both the government and the recipient.  Iranians are not allowed to donate kidneys to non-citizens. In the U.S. the argument against paying people for their organs (living donors of kidneys and livers) is that the practice would prey on the poor.  Supposedly only people who are in desperate need of money would sell their organs.  “The rich or reasonably well off,” the argument goes, “Don’t need the money so few of them would become donors under such a system.”  Additionally, wealthy people could buy organs from the poor but the poor could not afford to buy organs if they needed them.

An added emphasis on biomechanical or other organ options like Therapeutic cloning. Chances are pretty good that by the time humans quit bickering about paying for organs in one way or another we will already have organs produced by a combination of science and technology. Certainly a major government commitment should be made in this area.

Limited compensation for organ donors. There is already a precedent of sorts. Human hair and blood has been for sale for decades and covering expenses has some influential supporters.

Dr. Sally Satel is a Kidney transplant recipient and a resident scholar at the American Enterprise Institute in Washington D.C. She is editor of “When Altruism Isn’t Enough: The Case for Compensating Kidney Donors” (AEI Press, 2009) and a practicing psychiatrist and lecturer at the Yale University School of Medicine. She has long supported the idea of compensating organ donors. You can read the Wall Street Journal story here.

http://www.wsj.com/articles/SB10001424052748704322004574477840120222788

Dr. Satel has long been a proponent of compensating organ donors. In a publication of the Elder Law Journal, Satel had this to say about compensation for donated organs.

“What kinds of compensation should be offered? A reasonable case could be made for an outright payment. After all, it is hard to argue that an individual is competent enough to sell an organ yet unfit to manage the money he receives in exchange for it.

Donor protection is the linchpin of any compensation model. Standard guidelines for physical and psychological screening, donor education, and informed consent could be formulated by a medical organization, such as the American Society of Transplant Surgeons, or by another entity designated by the federal Department of Health and Human Services. A waiting period of three to six months could be built in to ensure the prospective donor has ample time to think it through. Monitoring post-transplant donor health is important as well.

One idea is to provide lifetime health insurance, through Medicare or a private insurer for the donor. The donor would receive annual physicals, routine medical screening, and long-term follow-up, in addition to standard health coverage. A federally sponsored registry of donors could help physicians study long-term outcomes for donors and take steps to remedy physical or psychological difficulties that arise.

MULTIPLE COMPENSATORS In this scheme, an intermediary broker would coordinate donors, compensators (the entities that pay for the transplants), and medical centers. Medicare would be one of several possible compensators, along with private insurers, charitable foundations, and perhaps a fund established through a surcharge added to the cost paid by insurers and foundations.

PRIVATE CONTRACTS The easiest way to start a market for organs is simply to change the law so as to allow someone who needs an organ and someone who wants to sell one to make their own arrangements through contract—as infertile couples currently do with surrogate mothers. But such a system would inevitably attract criticism because it appears to favor the rich over poor. You can learn more on this subject by checking out these links:

http://www.sallysatelmd.com/html/2007-04-16_ElderLawJournal.pdf http://www.cnn.com/2012/07/03/health/allowed-sell-organs-time/index.htmlhttp://www.npr.org/2008/05/21/90632108/should-we-legalize-the-market-for-human-organshttp://www.newint.org/argument/2010/10/01/human-organ-trade-debate/http://plato.stanford.edu/entries/organs-sale/

“Is it ethical to compensate people for their organs?” Dr. Satel thinks so and offers some interesting options.

“My colleagues and I suggest a system in which compensation is provided by a third party (government, a charity or insurance) with public oversight. Because bidding and private buying would not be permitted, available organs would be distributed to the next in line–not just to the wealthy. Donors would be carefully screened for physical and psychological problems, as is currently done for all volunteer living kidney donors. Moreover, they would be guaranteed follow-up care for any complications.

.Many people are uneasy about offering lump-sum cash payments. A solution is to provide in-kind rewards–such as a down payment on a house, a contribution to a retirement fund, or lifetime health insurance–so the program would not be attractive to people who might otherwise rush to donate on the promise of a large sum of instant cash.   The only way to stop illicit markets is to create legal ones. Indeed, there is no better justification for testing legal modes of exchange than the very depredations of the underground market.”

.Dr. Satel and several colleagues have called on congress to reform the 1984 National Organ Transplant Act (NOTA), which makes it a felony to provide material reward for an organ.

The issue of paying for human organs is controversial to say the least but that does not mean it can’t or won’t work.  Iran, which is usually not a good example for much of anything, allows for such a program and the result reportedly is that their waiting list has sharply declined and in some cases it has diminished entirely.

http://freakonomics.blogs.nytimes.com/2008/04/29/human-organs-for-sale-legally-in-which-country/

What we need in the United States is an open dialogue free of emotional outbursts that would allow for a small pilot program to one or more of these ideas.  More importantly I am appalled by the attitude in official circles that suggests, “There’s nothing more we can do about increasing the supply of organs.” That’s giving up and I refuse to surrender to such backward thinking. If we can get agreement on sending people to Mars by 2035 we sure could get agreement on putting an end to organ transplant waiting lists. It’s also time for everyone to admit the altruistic approach is simply inadequate. People are dying, 22 of them every day and we are satisfied with that? I think not. There is nothing wrong with admitting failure.

All of the volunteers and others who have worked so hard to increase altruistic organ donation deserve a lot of credit, they’ve saved thousands of lives, but I think they, too, would agree it’s time to stop the dying, it’s time to end the shortage. It’s over 30 years since the altruistic approach was started, how much more time do officials need to admit failure and try other approaches?

The time to act is now. We have a new President and a new congress. It’s time to get them involved in saving lives. That is after all, why they were elected.

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Bob Aronson is a 2007 heart transplant recipient . He is the founder of two social media sites. 1) Facebook’s 4,300 member Organ Transplant Initiative a support group that also offers a wide variety of educational information and  2) this site, Bob’s Newheart. Here you will find nearly 300 blogs on issues surrounding organ donation/transplantation. Your comments are always welcome.

If you are not an organ donor, becoming one is simple. Just go to http://www.donatelife.net and sign up. It only takes a couple of minutes. When you are done tell your family so there’s no confusion when the time comes. That’s all there is to it.

 

 

 

 

 

 

 

 

 

 

Let’s All Tell Mr. Trump We’re Sick of Big Pharma Ripping Us Off.

By Bob Aronson

Please share this piece. No permission needed.

Everyone, unless you have the riches of Donald Trump, everyone complains about the cost of prescription drugs and the complaints are justified. No other country in the world pays as much for prescription drugs as Americans do.  Big Pharma, that’s Washington DC talk for the huge pharmaceutical companies, is making sky high profits and they aren’t going to end anytime soon. In the latest year in which I was able to find numbers 2012 the top 11 global drug companies made nearly $85 billion in net profits. That’s net, folks, not gross. The gross number is, well, gross.

Big pharma is ripping off Americans and no one seems to care other than ripped off Americans. The Republican congress sure doesn’t care, they all have their hands out for the lobbying money big pharma so liberally spreads about. And – the Democratic White House of the last 8 years hasn’t said much either. Now we have a new President about to take office and several months ago in a primary debate he made a big deal out of the high cost of drugs, but we haven’t heard much from him since. Let’s hope he has the guts to take on big pharma.  The pressure on Trump to do nothing will be tremendous. He’ll get it not only from the drug companies, but from all the politicians whose pockets have been lined with campaign donations by big pharma lobbyists. Trump can bellow all he wants, if congress won’t go along he’ll be shooting blanks at a stationary target.

During the Democratic Primary campaign Bernie Sanders made a big deal out of reversing the Citizens United ruling that allows corporations, unions and the like to make almost unlimited contributions to political campaigns. So if you are asking where the politicians are who are supposed to be looking out for us. I’ll tell you where. They are out being fitted for new big pharma cheer leading outfits. The more money big pharma makes, the more money they get in the campaign coffers.

The number of conflicts of interest between the regulators and the regulated boggles the mind. How do these people who are so obviously biased and in the industry’s pocket, get into these positions of power? I shouldn’t even ask the question, because the answer is so obvious. For example; PhRMA, (the Pharmaceutical Research and Manufacturers of America) which spent $18.4 million lobbying lawmakers last year and BIO (Bio-technology Innovation Organization) which spent $8.4 million, are among the most visible groups on Capitol Hill.  Get this. Former Louisiana Congressman Billy Tauzin chaired the committee which oversees the drug industry. You know how he got the chairmanship? Well, he was a Democrat, but when the Republicans took over the majority he switched parties. Now that’s a lust for power. Then he abruptly resigned his congressional seat and shortly thereafter emerged as the new leader of PhRMA where was a paid a cool $2 million a year. That deal leaves a stench on the paper this is printed on.

The Tauzin defection and sell out of his integrity was among the beginning rumbles of even greater conflicts of interest. For example, the Obama FDA commissioner, Robert Califf, was confirmed despite the fact that there were 23 proven financial links to drug makers. And – it gets worse. Did you know that 30 percent of sitting U.S. Senators and 20 percent of U.S. congressmen own pharma stock? I won’t go into detail here, but if you want to learn more about this disgrace go to https://www.statnews.com/2015/12/01/congress-pharmaceutical-investment/

When did you first realize how bad this gouging was?  Was it last year when that cocky little jerk Martin Shkreli of Turing Pharmaceuticals, testified about the Daraprim price hike from $13.50 to $750. As a result the anti-parasitic drug became unaffordable for thousands of Americans. In the meantime Shkreli was on Twitter calling lawmakers “imbeciles” for even asking any questions about his unethical and immoral price hikes.

Others of you with Hep C may have experienced the greed of Gilead Sciences drug Sovedeldi which sold for $84,000 for a 12 week course of treatment in 2014. Headlines were screaming “Rip-off,” patients were dying because they couldn’t afford the drug, but Gilead was unaffected. One of their execs even sent out an internal memo saying, “Let’s hold our position whatever competitors do or whatever the headlines.” In an incredible understatement the GOP led Senate Finance Committee said the price did not reflect research and development but a “revenue” push. Revenue push nuts! That’s unabashed price gouging especially in light of the fact that the same drug cost $900 a year in Egypt. Forbes, the conservative business magazine, pointed out that US taxpayers are picking up the tab since most US hepatitis C patients are uninsured, underinsured or imprisoned. Those in prison don’t qualify for any help at all. They are destined to suffer and because they are suffering run the risk of contributing to the Hep C epidemic.

But that’s only, and I hate clichés, but here goes anyway – the tip of the iceberg that sank the Titanic. Let’s hope the big pharma ship hits the same obstacle. There are many, many more rip offs that most of us don’t’ know about because we only have a familiarity with the drugs we personally take and for some reason the mass media have mostly ignored the get rich schemes of big pharma.

They will tell you that the high prices reflect the cost of research and development. I know from first –hand experience that’s not true. For some 25 years I was a communication’s consultant that helped large and small pharma companies bring the products to market. Developing new drugs and or devices is expensive. Just getting FDA approval costs a lot of money in clinical trials and in paying physician experts for their testimony, but big pharma in particular doesn’t bat an eye at those costs because they spend more on promoting drugs and on advertising than they do on research and development and they pass those costs on to you.

You probably didn’t know this but we, the United States and New Zealand are the only two countries in the world that allow prescription drug advertising. The companies are trying to put pressure on doctors to prescribe by going directly to consumers and asking them to ask their docs for a prescription of the latest snake oil and some of it is snake oil. Some drug companies will make minute changes in the chemical structure of a drug, rename it and call it a new drug. Prilosec, for example became Nexium. It was essentially the same drug but changing the formula a smidgeon and giving it a new name netted billions for the parent company. http://articles.mercola.com/sites/articles/archive/2002/12/18/nexium.aspx

Here’s a partial list of some very expensive drugs. So expensive some patients choose to die because they can’t afford them. It used to be said that some seniors had to choose between eating and taking their drugs. That’s no longer true, even giving up eating won’t save enough money to buy these drugs.

• Kalydeco  treats a rare form of cystic fibrosis in patient’s ages 6 years and older priced at a $300,000 a year.
• Acthar, a drug that treats treat seizures in infants under 2-years-old priced at a $300,000 a year.
• Kadcyla, a breast cancer drug that costs $94,000 for a year.
• Zydelig, a leukemia drug, made by Gilead the (Hep C drug maker) that costs $57,755 a year.
• Xyrem, a drug that treats narcolepsy for $35,000 per year (Honesty suggests that I (Bob Aronson) disclose having helped the developers of Xyrem get FDA approval)
• Abilify, a psychiatric drug usually added on to another expensive psychiatric drug, that costs $17,316 year.

(Some of the above was developed by Martha Rosenberg an investigative reporter whose work has appeared in Consumers Digest, the Boston Globe, San Francisco Chronicle, Chicago Tribune, New Orleans Times-Picayune, Los Angeles Times, Providence Journal and Newsday. Her Random House food and drug expose, Born with a Junk Food Deficiency: How Flaks, Quacks and Hacks Pimp The Public Health, was cited in the American Society of Journalists and Authors 2013 Outstanding Books awards. On Twitter you can find her at @MarthRosenberg.

It’s bad enough that Big and even small Pharma gouges us with high prices, their greed knows no bounds. Now I understand, many pharma companies are attempting to re-incorporate outside of the US in order to dodge U.S. taxes. Does that really surprise anyone?

So far we’ve dealt with the high prices of prescription drugs, the multi-million dollar lobbying effort on the part of big pharma and lawmakers and administrators who have clear conflicts of interest. But what about physicians. Well, they’re not clean either.

According to a federal on-line data base, pharmaceutical companies and device makers paid doctors some $380 million in speaking and consulting fees over a five-month period in 2013. http://www.nytimes.com/2014/10/01/business/Database-of-payments-to-doctors-by-drug-and-medical-device-makers.html?_r=0 some doctors were paid over half a million dollars each, and others made a lot more by sharing in the royalties from products they helped develop.

Big pharma says paying physicians has little or no effect on what they prescribe. Ok, if that’s true why the drug do companies pay doctors all of that money if they aren’t getting a huge return on investment. To be fair, there are efforts to reduce the influence Pharma representatives have on physicians. Many hospitals and clinics no longer take samples as a display of independence, but that’s a double edged sword. A good any patients counted on getting those free samples to cut the cost of the drugs they take. Doctors claim these pharma payments have no effect on what they prescribe. But why would drug companies pay out all those millions of dollars if the practice didn’t provide them a healthy return on their investment?

Americans spend more money per person on prescription drugs than any other nation on earth and we aren’t anywhere near being the healthiest. We spend nearly $3 Trillion a year on health care and a full ten percent of that is spent on prescription drugs.  While Government pays some of this tab through Medicare, Medicaid, and subsidies under the Affordable Care Act we pick up the rest through insurance premiums and taxes. And – the premiums, co-payments and deductibles are getting higher all the time. .

Big pharma, not satisfied with their outrageous profits are so driven by greed that they will go to any extreme to continue the revenue flow. Not long ago just before its patent  expired on Namenda, one of the only Alzheimer’s drugs, Forest Laboratories said it would quite selling it in favor of a new formula that offered an extended release. But there was really nothing new about it, just a minor change in the chemical structure and that kept it from going generic at a lower price.

And, of course, you are all likely familiar with the fact that U.S. law prohibits the U.S. government from using its considerable bargaining power under Medicare and Medicaid to negotiate lower drug prices. No one wants to admit to this but that came about because it was big pharma’s payoff for not opposing the 2003 Medicare Part D Bill of the George W. Bush Administration.

Lest I haven’t made my case about how big Pharma is ripping us off, did you know that healthcare and big pharma pay their CEOs more than any other industry? Want proof? Median pay for healthcare and pharmaceutical executives amounted to $14.5 million in 2015, higher than for leaders in any other sector, according to Equilar, a California firm that researches and analyzes executive compensation. Median compensation for all CEOs in the study, which looked at pay packages of 341 executives at S&P 500 companies across multiple sectors in 2015, was $10.8 million.

The increase in healthcare executive pay from 2014 to 2015 was also greater than in other sectors. Healthcare CEO Pay rose 7 percent last year over the amount in 2014, while the comparable median pay increase for all industries was 4.5 percent.

Here are just a few examples of CEO pay in healthcare and pharma. Leonard S. Schleifer CEO of Rgeneron Pharmaceuticals total compensation in 2015 was $47,462,526, Jeffrey M. Leeiden of Vertex Pharmaceuticals got $28,099,826 and Larry J. Merlo of CVS health took home $22,855,374

Who is worth that? Compare that to the $400,000 annual salary of the President of the United States who also gets a $50,000 annual expense account, a $100,000 nontaxable travel account, and $19,000 for entertainment. Add it all up and it doesn’t begin to compare with the health care and pharma CEOs.

I don’t know about any of you readers, but if I was the head of a pharma company making that much money and read about all the people who were dying or sick because they couldn’t afford meds I would likely shoot myself.

Because The U.S. just held elections it is too early to provide information on who chairs the committees in the house and senate that might influence the price of prescription drugs. This website might offer you some assistance. http://physics.mnstate.edu/cabanela/contacting_the_congress_shutdown.php

If you’d like to write to the President of the United States, Here’s his address.  If you write now your letter will go to President Obama. If you write after inauguration day on January 20^th it will go to President Trump.

The President.
The White House.
1600 Pennsylvania Avenue, N.W.
Washington, DC 20500.

PLEASE SHARE THIS PIECE. NO PERMISSION NEEDED, BUT ATTRIBUTION APPRECIATED. 

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Bob Aronson is a former Journalist, Governor’s press secretary and international communications consultant. He is retired and lives with wife Robin in Jacksonville, Florida. Bob had a heart transplant at the Mayo Clinic in Jacksonville in 2007 and spends most of his time promoting organ donation and writing blogs about donation/transplantation and related subjects. He is the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and of Bob’s Newheart blogs where there are nearly 300 posts on subjects like this. http://www.bobsnewheart.wordpress.com

 

 

 

 

22 People Die Each Day and You Can Do Something About It.

By Bob Aronson

The population of the United States is about 320 million. Of that number 120,000 are on the national organ transplant waiting list. 22 of them die every day because there are not enough organs to go around. Numbers, just numbers. We hear them so often they are meaningless.  But the numbers aren’t meaningless to the Husband who just lost his wife because there was no kidney for her, or the child who lost her dad because there was no liver. These numbers represent human lives, You or someone you love could be one of them some day and I know that from personal experience.

I was a broadcast journalist in 1967 when Dr. Christian Barnard performed the first heart transplant in South Africa. I remember telling one of my reporter colleagues that it was a really big deal because it would someday save thousands of lives. It never occurred to me that 40 years later I’d be one of those who benefited from Dr. Barnard’s pioneering efforts.  I had a heart transplant In August of 2007

So don’t ignore those numbers because all the numbers have faces and names and feelings and they are scared and alone and in need.  Right now 22 families are grieving, many children are being told that mommy or daddy won’t be coming home again. A parent is being told their 12 year old won’t survive the night. We are talking real lives here not just numbers.  There are people out there, real honest to goodness people who just lost someone because there was no organ and they are so stricken with grief they cannot function. There are nurses and doctors who have to tell families that because there was no organ their loved one died. That means over 8,000 people die every year waiting for an organ transplant that never happens and every one of them is loved by someone. Every one of them will be missed. Many of them may have had great futures, we’ll never know because a whole lot of Americans just didn’t get around to becoming organ donors.

How can that be?  How is it that a nation of 320 million people can allow 8,000 of their friends and neighbors to die when the solution is so simple and I mean really simple. You don’t even have to leave home to do it. You don’t have to get out of your damned chair. Just open the laptop, or turn on the desktop or say, “Hi Google,” to your tablet and you will be registering in mere moments. Keep reading and I’ll explain exactly how to register and save lives and you can get to feel really good about yourself.

First, chances are pretty good that you want to become an organ donor.  You just haven’t gotten around to it yet. But, if you haven’t yet made up your mind think about this. Why take perfectly good organs to the grave with you when they could save some lives? Up to 60 lives can be saved and/or enhanced by one organ donor who is in good health.

Many organs can be used to save a life. In fact, one person has the potential has save up to eight people. Tissue donation can help more than 50 people and eye donation can restore the sight of two individuals. Here is a list of organs that can be donated: Lungs, Heart, Liver, Kidneys, Pancreas, Small intestines and skin (yes, skin is an organ).

While not organs, there are many other body parts than can be transplanted as well including Corneas, Heart Valves, Bone, Saphenous veins, Cartilage and ligaments to name a few. http://www.organdonor.gov/awareness/organizations/local-opo.html

So what’s the Problem? Well, there’s more than one. About two million people die every year but many of them are not organ donors. Also a large number of people who die have damaged and therefore non transplantable organs.

The biggest problem we face, though, is procrastination. In case you don’t know what that is it is when you see that mess in your garage and say, I’ll get to that tomorrow, but tomorrow never comes. Polls and survey’s tell us that in excess of 90% of all Americans think organ donation is a great idea, but only about 40 percent actually become donors. And in some cases, not many, but some families will object to recovering the organs from a loved one for transplantation.

So let’s ask the question again, What’s the problem? Well, sorry to say it Americans, but you might be a big part of the problem. If you are not an organ donor, why not? What good are your organs going to do if cremated or buried with your body? It’s time you not only thought about organ donation, but did something about it. If you are not a donor here are some ways you can become one.

The easiest way. Go to www.donatelife.net. You can do this one from right where you are sitting. It only takes a few minutes, then tell your family, your physician and your spiritual or religious advisor…and you are done. You can formalize the process by adding “Organ donor” to your driver’s license, but again, be sure to tell your family what your wishes are so there’s no confusion when and if the time comes.

If you are confused about the process call your local OPO (Organ Procurement Organization) There are 58 of them in the United States. For help in finding yours go to http://www.organdonor.gov/awareness/organizations/local-opo.html

Recently I had a non-organ donor tell me that while it wasn’t on his license he was still a donor. He said he had made sure that his attorney included his wishes in his will. Well, I’m not an attorney, but aren’t wills usually read after the funeral? By then it is far too late to recover organs for transplant. If you do nothing else…nothing at all…tell the loved ones in your family that you want to be an organ donor so if the time comes and they are asked they’ll be able to say, “Yes,” we know that’s what he wanted.

It is my opinion that one of the reasons people procrastinate is that they don’t see any urgency in signing up. They think, “I’m in good health, I plan on living a long time and they can’t take my organs until I am dead, so what’s the rush?  It’s a good question. I’m sure the 30 year old man whose heart beats in my chest might have had the same thought at one time, but he signed up anyway.

The point is none of us know when we are going to die. I pray that everyone who reads this leads a very long life, but that’s not reality. Some will die well before “Their Time.”

So there is an urgency, both on your part and on the part of the recipient. Can you imagine what it feels like to be on a transplant list day after day, month after month, year after year, waiting for an organ, knowing you are dying and there’s little modern medicine can do short of a transplant. Think about that…seriously think about that for a minute.

Peter Curran and his wife Ashley know what that’s like. They live in Boston. Peter has been on the list for eight (8) years. 8 years — that’s mind boggling torture for both Ashley and Peter. They are friends of mine and oh so brave and upbeat, but as time goes on Peter’s liver isnt’ getting healthier and he is spending more and more time in a hospital bed because of complications. Peter Curran needs your help. Ashley loves her husband with every fiber in her body, she is an excellent caregiver, but somehow we — all of us, the medical system, the government — everybody is failing them. Why is there no liver for Peter? It’s because not enough people are donors. If you are procrastinating or know of someone who is, remind yourself or your friends of Peter and Ashley. He can’t work, he has very little energy or stamina. He’d love to go to work again, he’d like nothing better, but right now all he and Ashley want is for someone to donate a liver that matches Peter’s needs. Seriously, is that too much to ask, I think not.

Now some people don’t donate because they believe in the many myths surrounding organ donation. So let’s take that on, too, while we are at it. Here’s’ what the American Transplant Foundation has to say about the subject:

Myth:    Age, illness or physical defects could prevent me from being a donor

Fact:      Each person’s medical condition is evaluated at the time of their death to determine what                  organs and tissues are viable for donation. People living with chronic diseases or those who have a history of cancer or other serious diseases are still encouraged to join the donor registry.

Myth:    If doctors know that I am registered to be an organ or tissue donor, they won’t work as hard to save my life.

Fact:      The first priority of a medical professional is to save lives when sick or injured people come to the hospital. Organ and tissue donation isn’t even considered or discussed until after death is declared.  ypically, doctors and nurses involved in a person’s care before death are not involved in the recovery or transplantation of donated corneas, organs or tissues.

Myth:    If you are rich or a celebrity, you can move up the waiting list more quickly.

Fact:      Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status are never taken into account in the allocation process. Click here for more details about organ allocation by organ type.

Myth:    After donating an organ or tissue, a closed casket funeral is the only option.

Fact:      Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

Myth:    My religion doesn’t support organ and tissue donation.

Fact:      Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

Myth:    My family will be charged for donating my organs.

Fact:      Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

If you desire more information about the facts and myths of organ donation please visit. http://www.americantransplantfoundation.org/about-transplant/facts-and-myths/

Please remember when you hear 22 people die every day waiting for an organ that the numbers have faces and names and the smile and care and hurt just like you do. Remember Peter and Ashley and the thousands just like them. Register as an organ donor and feel like a live saver.  That’s a pretty darn good benefit.

Bob Aronson is the founder of Facebook’s Organ Transplant Initiative support group and the founder and author of the nearly 300 blogs on Bob’s Newheart where you’ll find information on a wide variety of subjects related to donation and transplantation. http://www.bobsnewheart.wordpress.com

Mom loses Two Sons, Helps Save Lives of Others.

By Bob Aronson

This is a story about a remarkable woman, her family and her incredible spirit. It is a story that has no ending because it is still unfolding. It is a story that is guaranteed to make you

Claire

experience every possible emotion. It is the story of Claire Connelly of San Diego, California. A divorced mom of three — Sara, Pete and Paul Neves. Even her name has a story. When she was divorced she took her original name Connelly back because so many who held the name had died and she wanted to extend its life. That’s Claire, she is all about life and living.

My first contact with her was by email where she goes by the name “Pete’s mom RIP.” That alone tells you a little about her and about a son who is no longer with us. But that’s only a fraction of the full story, a story that is bound to make you smile, cry and then smile again. It was a difficult story to write because there is so much to tell and so little space in which to do it.

“The Agony and the Ecstasy” was a 1965 film about the great artist Michelangelo. That title came immediately to mind after speaking with Claire for the first time. She has gone through incredible agony and it lives on, but her actions have also allowed her and others some ecstasy, much of which is still to be experienced.

I’ve only had email, text and phone contact with Claire, but it is easy to see that she is a vibrant, fun, upbeat woman who loves life, but has suffered losses few could survive and maintain their sanity. Most importantly, Claire Connelly has given life in more ways than one. She is an absolutely remarkable woman who willingly shares her story so that others may benefit. Prior to our interview Claire warned me, “I’m a crier,” she said. After the interview my tears flowed with hers.

Pete was Claire’s middle child. She speaks of him with intense love and pride. He was a model child, neat, organized and truly gifted. When we talked

Pete & Claire. Paul in back.

she described the young boy who would select what he wanted to wear to school before he went to bed at night. As he grew up he decided that his life’s goal was to become a U.S. Army Ranger.

The U.S. Army Rangers are a very tough outfit. Few who apply for Ranger

Ranger Pete

training make it through the program that’s been called the “toughest combat course in the United States.” Pete made it through with flying colors and got into Special Forces, but a back injury ended his career. Disappointed, but still wanting to stay in the Army Ranger Family and connect with other Rangers he returned home and started a U.S. Army Ranger website where he sold Ranger T-shirts, caps and other items.

When the second Iraq War started Pete signed up as a contract soldier, his Ranger instincts were still alive and he wanted to help, but despite his excellent physical condition he found himself weakening. He could no longer make long marches or sustain extended

Pete fighting cancer

periods of physical activity. Something was wrong. He returned to the U.S. and was diagnosed with fourth-stage Medullary thyroid cancer. Pete was treated at the M.D. Anderson cancer center, but without success and his condition slowly worsened.  Claire, in tears when she talks about his hospitalization and upbeat attitude said, “The worst thing he could say was, “Mom, I’m not having a good day.” He never complained, he soldiered on. He was in the battle of and for his life, but the odds were just too great and Pete succumbed on October 13, 2008 at the age of 46 leaving a wife and daughter behind. Claire remembers Pete every minute of every day. Thoughout her home she has Pete memorabilia and each year on the anniversary of his death she finds a new way to honor him, like going to the beach and tossing something into the ocean for him.

Needless to say Pete’s passing was a devastating blow for Claire, but she’s a strong woman
and let her memories of Pete sustain her. Claire went on with her life, but never forgetting October 13. As the years passed she mourned, but enjoyed contact with her remaining children Paul and Sara. Then on an otherwise happy day, Claire got the phone call no parent ever wants to receive. “Come to Sacramento right away,” said a hospital nurse who explained that Paul had suffered a massive stroke. He was found on the sidewalk by his house unconscious. It was estimated he had been there for three hours or more before he was discovered and now a web of wires and tubing connected him to the technology that kept his heart beating and his lungs working. Claire remembers that phone conversation as though it took place an hour ago, “When I got the call that my other son, Paul, was on life support and could I please come up to Sacramento to sign the necessary papers for his organ donations, I put the phone down and let out screams I didn’t know I had inside of me.”

While he was rushed to the hospital there was nothing that could be done; the time between the stroke and his being found was just too long.  Claire hurried to be near her son, her “Baby” as she called him.

When Claire arrived at the hospital she was told that Paul showed no brain activity. He was what is commonly known as “brain dead.” Shortly after she was approached by the Organ Procurement Organization and told that Paul’s driver’s license indicated he was an organ donor. Claire, also an organ donor, immediately agreed to honor Paul’s wishes. She was informed that he was in such good physical condition that all organs that were transplantable could be donated, but first they had to find recipients. That meant Paul would be kept on life support for several more days. Days in which Claire sat and stared at her immobilized son, tubes and wires still attached still breathing and warm to the touch of a mother’s hand.

Finally she was told that recipients had been found and it was time to take Paul off of life support. There cannot be a more terrifying moment for a parent, than to be called upon to end the life of an offspring. What pained her most is that they never got to say goodbye. “When Pete died,” she said, “it was terribly sad but we had a lot of time to talk and say goodbye. With Paul it was so sudden, “I never got to say goodbye,” she sobbed. But the worst part of the story is that Paul’s passing on October 13, 2013 was exactly five years to the day after Pete who died October 13, 2008.

Claire is still stunned by the fact that her two boys died exactly five years apart and she still grieves. Parents are not supposed to outlive their children, but there is a bright spot in this story and it is the lives saved by the donation of Paul’s heart, liver, lungs and kidneys.

For a while after Paul’s passing Claire waited to see if she would be contacted by recipients of Paul’s organs, but nothing came so Claire being Claire, decided to write to them. Her letters were passed on by the local Organ Procurement Organization (OPO). Here’s what she wrote.

October 16, 2013

“Dear Recipient,

Please know that your recent gift of an organ came from my son who died suddenly, leaving all of us bereft, were it not for his generosity in wanting to be an organ donor at the end of his life, which we all hoped would be many years down the road, at least well after mine.  The last thing he wanted was to be hooked up to any machine, but that is exactly what happened.  We feel that because that was necessary to keep his organs going to fulfill his wish of organ donation, he would have approved being monitored by banks of machines, and being poked and prodded endlessly for three days in order for that to happen.

He was a give-you-the-shirt-off-his-back kind of guy who loved the great outdoors, loved to fish, camp and ride his wave runner, and was thrilled at the sight of any wildlife, be it raccoon, elk, mountain lion or bear.  He loved Yellowstone National Park best of all.  He cherished life and we are comforted by the fact that parts of him will live on and our prayer is that you take good care of and appreciate what you have been given – a central piece of him – his ultimate gift.  The fact that he was able to donate so many of his organs speaks to the fact that our family is blessed with good genes and we hope and pray that your new organ will serve you well, with every beat of his heart and every breath that you take, and that you think kindly of him from time to time.  I can assure you that he, as well as you, are in our thoughts and prayers every day.

Perhaps one day we can share our thoughts in person, if you are willing.  Our family is hoping for that possibility and look forward to the day when that can happen.

The mother of the donor.

Again she waited. Months went by and then one day, a letter arrived (edited to protect the identity of the recipient).

“

Dear Mother of the donor,

Your heartfelt letter was received at a perfect time of my life.  Before I continue any further allow me express my sincere thank you to the mother and family of my heart donor. I would also like to thank the young man who is responsible for my being alive today. 

It is because of you and of course your loving son that I am alive. Please know that each time I feel my heart beat I think of your son. It is amazing to me that your son (my donor) and I have so much in common. I was blessed with receiving a new heart. I will never take that for granted.  Please be assured that I am taking very good care of myself and that I am getting emotionally and physically stronger and stronger as each day passes. I look forward to meeting with you one day and am overwhelmed with the thought of that meeting.

God bless you and I’m looking forward to talking with you soon.”  

The recipient has asked that his identity not be revealed.

Claire is excited as well because the meeting date has been set for December 12, not long from now. While it is not unusual for donor families to go public with their stories, it is also not common, but Claire Connelly is not your average person. I asked her why sheagreed to an interview and to have me publish a blog. Here’s what she said.

“My purpose in telling my story, and I believe I am speaking not only for myself but for other donor families as well, is to convince even one organ recipient to take a moment out of their busy day to send a word of thanks to the donor family.  If I can do that, then this effort would have been worthwhile.

For the organ recipients who feel they don’t want to remind the donor families of their loss, my wish is that they begin thinking of it in a new way.  Most donor families are ALREADY still feeling that loss, and it might give them some comfort to know that their loved ones hearts are still beating, or their eyes are still taking in the wonders of this world, or their lungs are being appreciated with every breath you take.

From this donor mother’s perspective, perhaps they are wondering why the gift of life that their family member provided has not moved the recipient enough to say thank you and to let that donor family know that you appreciate the generosity it took for their loved one to sign that donor card to leave their organs in such a profound way to total strangers.  They are left to wonder if you truly appreciate the generosity it took for that family to agree to a procedure with which they may not totally agree, and to go to the hospital every day to keep a vigil for the brain-dead body of their family member, while potential organ recipients are researched, measured, weighed, matched up, scrutinized and finally, all scheduled to be prepped for the exact same moment.  While it was heart-wrenching to see my son for the last time as he was wheeled out of his room to the O.R. just down the hall for the recovery of his organs, it was so rewarding to hear directly from his heart recipient how much he appreciated the gift and to hear to what lengths he goes to protect it, to take care of it, to monitor it, to faithfully keep his checkup appointments, etc.  I can only say it did this mother’s heart good to KNOW FOR SURE that Paul’s heart beats on, is appreciated, and cared for.

Paul’s heart recipient and I have agreed and are looking forward to meeting in person on December 12 when he can thank me in person and I can feel and hear Paul’s heart beating within his recipient’s chest.  We have already shared photos and he calls me, “Mom.” I don’t want him to think of Paul as “some dead guy”, but as the generous fabulous person he was.  Toward that end, there are things of Paul’s that I want to give to him, and things about Paul that I want to tell him.  Nobody, except another donor family member, could even begin to imagine what this experience will be like.  Will it be emotional?  Certainly.  Would I miss it for the world?  Not a chance.  The willingness of his heart recipient to contact me is what will make this possible.  While it won’t bring Paul back, it will go a LONG LONG WAY to give me the peace of mind in knowing what a difference he has been able to make in this man’s life and that he appreciates it each and every day and that he is taking every measure and precaution with Paul’s heart.  And THAT does this mother’s heart good

While I have not heard from the recipients of Paul’s two lungs, two kidneys, nor liver, I still wonder about them, but that is outweighed by knowing, at least, that his heart is still beating within this kind man’s chest and who cared enough to write a thank you letter.”

Claire Connelly is a unique person who told this story to help others. I know she’d like to hear your thoughts and you can send them to her through my email address bob@baronson.org and I will pass them on.

And one more thing. If you are an organ donor, that’s great. If you aren’t, register at donatelife dot net and get your family and friends to do the same.

Dr. Seuss said it best, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Thank you Claire and most of all, thank you Paul for your gifts of life.

*Note. Bob Aronson the author of this blog is a 2007 heart transplant recipient. He is the founder of Facebook’s Organ Transplant Initiative a donor/recipient/caregiver/donor family and friends support group of well over 4,000 members.

Check the index on this blog for other posts that may be of interest to you, there are nearly 300 of them on almost as many topics related to transplantation/donation issues.

 

Major Depressive Disorder (MDD) Common Among Transplant Recipients

By Bob Aronson

I have written before about post-transplant depression. It is real, it is common and it can be dangerous, but there is help, lots of it. You do not have to live feeling as though you are a drain on society a waste of skin and a burden to your friends and family. Most importantly you should know that there’s no shame in having a mental illness. It is as real as heart disease or cancer or a broken leg, but it is also treatable. You don’t have to live  a life of gloom and doom.

According to Very Well Thttps://www.verywell.com/coping-after-an-organ-transplant-3157200 “There are issues that are unique to organ transplantation that the average surgery patient does not experience. In the majority of cases, a patient who is waiting for an organ knows that for an organ to become available an appropriate donor must die.

There is an emotional struggle between maintaining hope for a transplant and dread, knowing that a stranger will die before that becomes possible. Transplant recipients often acknowledge that they feel survivor’s guilt, having benefited from the death of another.

It is important for recipients to remember that family members of donors report feeling that being able to donate organs was the only positive thing to happen during a heartbreaking time. The correspondence they receive from organ recipients can help the feeling of total loss after a loved one dies.”

As a transplant recipient myself I know the depression I felt prior to the transplant was related to the fear of not getting an organ and dying. A depression hangover from pre to post transplant seems to make sense. You got a new organ, not a new brain and while the reasons may be different, the feeling remains. The most common concern is that “Someone had to die, so that I could live.” But logic dictates that your donor died because it was his or her time to die. Your survival is not even remotely tied to that death. A better more positive thought might be, “I am alive because my donor made the decision to donate while still living. It was a gift to someone who needed an organ and I turned out to be that someone.”  Sometimes, though, it is hard to accept and depression becomes a reality.

This blog is aimed at giving you basic information on what depression is, how to deal with it and where to go for more information. I suffer from it, I understand it and I know it is treatable. I’m hoping the following information is helpful.

Major Depressive Disorder is a common disease whether transplant patient or not. Anyone can suffer from it and the suffering can be severe. Let’s start with a little check list to see if you suffer from MDD and need to see a physician to become whole again. If some or all of the following situations apply to you, it is likely you need some help.

• Changes in sleep. Many people have trouble falling asleep, staying asleep or sleeping much longer than they used to. Waking up early in the morning is common for people with major depression.

• Changes in appetite. Depression can lead to serious weight loss or gain when a person stops eating or uses food as a coping mechanism.

• Lack of concentration. A person may be unable to focus during severe depression. Even reading the newspaper or following the plot of a TV show can be difficult. It becomes harder to make decisions, big or small.

• Loss of energy. People with depression may feel profound fatigue, think slowly or be unable to perform normal daily routines.

• Lack of interest. People may lose interest in their usual activities or lose the capacity to experience pleasure. A person may have no desire to eat or have sex.

• Low self esteem. During periods of depression, people dwell on losses or failures and feel excessive guilt and helplessness. Thoughts like “I am a loser” or “the world is a terrible place” or “I don’t want to be alive” can take over.

• Depression can make a person feel that nothing good will ever happen. Suicidal thoughts often follow these kinds of negative thoughts—and need to be taken seriously.

• Changes in movement. People with depression may look physically depleted or they may be agitated. For example, a person may wake early in the morning and pace the floor for hours.

• Physical aches and pains. Instead of talking about their emotions or sadness, some people may complain about a headache or an upset stomach.- See more at: http://www.nami.org/Learn-More/Mental-Health-Conditions/Depression#sthash.X9zhh5bP.dpuf

If you suffer from MDD (Major Depressive Disorder) you should know the following.

human brain

We often hear that depression is caused by a chemical imbalance in the brain. Well, the fact is there is little or no scientific evidence to prove that point. It is a theory that is probably partially true but is really an oversimplification of a very complex disease. The “Chemical Imbalance” description is the result of the pharmaceutical industry’s attempt to make their “Re-balancing” chemicals more popular and desirable.

There are scores of medications that claim to help depression and while some work for at least a short while no one knows for sure how or why they work or how long they might be effective. Attempts at balancing the so-called chemical imbalances are sometimes effective, but not always. That may be because the exact degree of involvement by Serotonin or other chemicals in the cause and treatment of depression is a theory, not a fact. It is far easier to sell a remedy caused by chemical imbalances than one that has multiple causes and interactions.

MDD is a form of mental illness that often requires a multidisciplinary approach. Sometimes pills or capsules will work absent any other form of treatment. Often, though, it may need the broader approach that can only be offered by a Psychiatric clinic. Start with your primary care doc, but if your condition gets more serious seek specialized professional help.

If you suffer from depression as millions of Americans do, it is likely that your doctor has prescribed an anti-depression medication for you like Remeron, Wellbutrin or Cymbalta. Chances are good, too, that if you‘ve been taking anti-depressants for a while you’ve found that after a while they seem to wear out so your doctor will prescribe a new one. There are scores of such medications out there so physicians have a huge variety from which to choose making it is easy to prescribe something different.

Depression is a form of mental illness and for some that’s a shameful problem. They feel they should be able to overcome depression without help. “Depression? Really? You?  You’ve got a great job, family, friends, a new car…wow, what’s to be depressed about?  You’ve got so much to live for,” is probably one of the most insensitive responses one can give to hearing of someone’s depression, yet it is offered thousands of times a day. It is as though it is somehow illegal or immoral to have a mental illness, but when you feel sad, worthless, lose interest in daily living and even have suicidal thoughts, you need help.

Major Depressive Disorder (MDD) is not only common it is getting worse. Estimates suggest that about 16 million Americans are victims. MDD is a psychiatric disorder that goes well beyond feeling sad or “down.” It can become so severe as to cause you to become disabled or even to want to take your own life. Part of the problem in identifying and treating MDD is that it lives in that shadowy world of mental illness that still carries with it a certain stigma or shame.

Anyone who has suffered from MDD knows how debilitating the disease can be. It isn’t just feeling “Blue” or out of sorts — it is feeling totally useless and without purpose or value. It is feeling as though you are a waste of human organs and skin, have no right to exist and represent a drain on society. It is beyond feeling that you are inferior, it is knowing that you are and therefore knowing there is no hope. It is knowing you are a burden to others and that there is no hope – that’s how bad it is.

A senior couple talking with a marriage counselor. Could also be a salesman in their home.

While talk therapy has always been available, the pharmaceutical companies saw the need for a quicker fix like a pill that could somehow miraculously change your mood. They did a lot of very expensive research and came up with several medication approaches and several of them work very well. Nearly all of them based on the theory that depression was at least in part caused by chemical imbalances in the brain. The pharmaceutical company scientists determined that Serotonin was one of the major chemicals affecting depression and it therefore became the one most often targeted.

The first group of anti-depressants included brand names like Prozac, Paxil and Zoloft. They come from a group of medications called SSRIs (Selective Serotonin Reuptake Inhibitors) and are generally safe and effective.  The important fact here is that most if not all anti-depressants are aimed at regulating brain chemicals and there are lots of them. I counted 82 different brand names in an ever so brief internet check on the number of anti-depressants on the market.

The problem is that these drugs don’t always work right away or at all for that matter and it can take time to figure that out. Anti-depressants can also get expensive, Pfizer’s Pristiq, for example can cost over $100 a month with insurance – far more without. On the other hand Duloxetine or Cymbalta can be cheap. I just paid around $10.00 for thirty 30 milligram capsules. Many of these drugs have generics that sell for a lower price so be sure to ask. One thing you can count on is that if you begin to use anti-depressant drugs you will, over time, use several different kinds.

There seems to be three approaches to dealing with MDD. Obviously there is medication and finding the right one could take some time. There’s also Cognitive Behavioral Therapy (talk therapy) and Electroconvulsive Therapy (ECT). Yes, ECT is sending electrical shocks into the brain, but it is not like the Shock Therapy of the old Boris Karloff movies or more recently, “One flew over the Cuckoos nest.” It is brief, painless, has few side effects and can be very effective. To the best of our knowledge most MDD therapies are covered by Medicare and other insurances, but check before you agree to be treated. It is not unusual for some patients to participate in all three forms of treatment.

For more information on depression we recommend the following links.

Selecting the right anti-depressant http://www.mayoclinic.org/diseases-conditions/depression/in-depth/antidepressants/art-20046273

Cognitive behavioral Therapy http://www.nami.org/Learn-More/Treatment/Psychotherapy

Electroconvulsive Therapy http://www.nimh.nih.gov/health/topics/brain-stimulation-therapies/brain-stimulation-therapies.shtml

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of the nearly 300 posts on this site.  You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

 

Bob’s Newheart Blogs

This site offers news, information and opinions about organ donation, transplantation and related subjects.

There are nearly 300 posts here covering a wide range of health topics. You may share without permission, but attribution is appreciated.

 

 

Thoughtful Communication Can Greatly Enhance Your Quality of life and — It’s Free!

***Note from Bob Aronson. Dr. Priscilla Diffie-Couch is a cousin who understands the power of words. She has contributed several blogs to Bob’s Newheart about a variety of subjects, but all revolve around mental and physical health issues.

Living in the 21st century with all of its stresses like the high cost of healthcare, raising a family and trying to make ends meet has resulted in higher stress levels for many. That stress wears on us and negatively affects our quality of life.  Dr. Diffie-Couch says it doesn’t have to be that way. She offers a partial solution — communication. If you do it thoughtfully you likely will feel a whole lot better and the best part of it all is that it is free. You have nothing to lose by trying what she suggests — and you may have a whole lot to gain. 

By Dr. Priscilla Diffie-Couch

Human communication and health are two topics I have been passionate about most of my life.  So much so that I got three degrees in one and have spent most of my adult life digging deep into the other.  Both are topics of such depth and expanse that no human being could come close to mastering the limitless scope of either.  One facet that has especially fascinated me is the effect one has on the other, particularly, the impact that communication has on human health.

You can’t study the science and art of communication without being exposed to the needs and motives that drive human behavior.  So you’ll find a bit of that as well as my own personal philosophy of life as you read here what flows from mind to page.

Research now tells us that human beings who are most social live the longest.  Once you look into how that happens, you discover that, like everything else of value in life, it is not the quantity but quality of that interaction that has the most pronounced effect on human relationships and thereby on human health.

What it takes too many of us too long to learn in life is that a satisfying relationship can never be something one party feels and the other does not.  It can be judged only in the eyes of both beholders.  Just as you cannot make other people love you, you cannot make them feel good about the way you choose to communicate with them.  Discovering how to meet the needs of someone else when you interact often requires a delicate dance until you match your own footsteps with theirs.  But it is never as simple as that.  There also has to be a meeting of minds and a link from the hearts.  Reaching a level that makes for comfortable satisfying communication with people close to you can take years, even a lifetime.  Sadly, if we don’t practice them with each interaction, we too easily forget the steps and we have to relearn them again and again.

We are all aware that uncontrolled stress can take a heavy toll on our health.  It can precipitate heart attacks, suppress our immune system, rob us of rejuvenating restful sleep, and even shorten our lives.  And there is nothing more stressful than unsatisfying communication with people who mean the most to us.

No two human beings are alike.  The needs they bring into a communication moment will never be the same.  We’ve all known people we care about deeply who are so needy that it strains our powers to provide.  Some spend their lives immersed in such insecurity and unexplained longing that you can never tell them often enough the affirmations they need to hear.  No matter the number of times you praise some people, withhold it or disagree with them once, and you will have failed to meet their needs.  Efforts to interact satisfactorily with those people can extract costs on the health of all parties concerned.

Their constant state of unmet needs leads some to ceaselessly seek ways that they can prove their worth.  The most common of these is to stake a claim on being “right.”  Seldom is something so simple that someone can flip open a book and point to a passage and proclaim, “See. I was right.”  Seldom are matters of fact at the heart of interpersonal disagreements. Shouldn’t you just agree to disagree and let it go?  That is almost never satisfying communication among close friends and loved ones.  Doing that leaves you to talk about things and people and the weather.  The very feature that distinguishes an intimate relationship from one with a stranger is the freedom to express complex, sensitive thoughts.   And express differences of opinion.

Few things in life are easily separated into two distinct categories:  right or wrong.   There is little satisfaction to be derived from being reminded of that.  Butting heads with those you love will result in far fewer bruises, ego included, if you both understand some fundamental principles of persuasion.  Clearly, speaking loudly does not sway minds.  And even the softest ceaseless repetition will not help you prevail.

There are some steps that help increase mutual communication satisfaction.  First, pick the right time and the right place to bring up touchy topics.  Use qualifiers that make your words less bitter in case you have to eat them.  “It seems,” “Based on what I have read,” “Having dealt with this issue many times,” or simply, “My opinion on this issue is.”  Declamations of certainty don’t invite open discussion.  They don’t warmly welcome alternate views.

Pick one issue and stick to it.  Mirror others’ objections.  Work to understand them and see where common ground can be reached.  It may require repeated efforts but don’t give up in pointing out genuine areas of agreement.  If you feel the need to refer to your special knowledge of or experience with an issue, do so without fanfare and without expecting to rule because of it.  The most inexpert among us can sometimes offer the most worthwhile, insightful observations.

Avoid attacking the person’s character with the claim that you are refuting his or her opinions.  When you do, you will not only be side-stepping the real issue, you will be kindling a fire where there should have been nonthreatening illumination.  Ask yourself, if I alienate someone close to my heart, what does it gain me to be right?

Some of us with well-developed social skills settle into a narrow relationship mode with selected others in our lives.  Falling into predictable patterns may be partly due to meeting expectations and partly due to the ease of habit.  You’ve experienced this behavior firsthand or witnessed it in others.  Someone will be a jokester with one cousin and almost austere with another.  Cordial with one aunt and curtly blunt with another.  Open and receptive to differences with one sibling while leaning toward condescension with another.

Behaviors, based on what we think others believe about us or expect of us, can be adjusted.  Though it takes two to establish such patterns, one of them can begin to change their static nature.  What works well for many is to ask a simple question while showing genuine interest to hear the answer.  “If you had to sum up your philosophy of life in ten words or so, what would you say it is?”  The answer can enlighten you both and lift clouds away from a stifling or oppressive atmosphere.

Yet another strange anomaly is too common among intimates.  Some people were born with repair kits in their hand.  Their mission in life is to fix all the imperfect people they know. They see others as covered with lint and they can’t wait to start pick pick picking away.  It can be a little help with our grammar.  Or correcting those niggling little details in our stories we never get quite right.  Especially annoying are those who assure all who will listen that we must be confused about our facts.  Often these well-intentioned folks can be disarmed with a lengthy pause and a warm smile and a simple “Thank you.  I’ll work on that.”  Recognizing my leaning in this direction, I try to keep reminding myself that “It takes only a moment to notice in others what it takes a lifetime to see in ourselves.”

One of my most constant personal goals is to never stop learning, not only about topics of great interest to me but about the most mystifying subject of all:  myself.  Beyond that, I am committed to improve upon what I find when I look deep inside every day.   Few of us would deny the benefits to be derived from self study, self-improvement or the difficulty of sticking to this task.  Even those of us who relish that challenge too often fail to see the need to do the same with others in our lives.

How often do we interact with others on the false assumption that we know what they want to hear, what their needs are, what their immediate concerns are, even what they are thinking.  As one philosopher warned, “When you try to read others’ minds and motives, you sometimes miss by inches, but mostly by miles.”  Every satisfying encounter is a process of discovery, both about yourself and the one you would hope to impact, inform, impress, amuse, or persuade.

In intimate communication, the demands are even greater than in the world of casual conversation or the kind we rely on at work.  The filters we use with close family and friends when we send and receive messages are fundamentally the same as those we use elsewhere:  our experiences, our knowledge, our environment, our feelings, our needs, our biases, etc.  But these filters have to be much more refined and focused in intimate communication.

All these filters affect the words we choose when we speak and the way we interpret when we listen.  We cannot ignore these filters if we hope to function as and be perceived as sensitive communicators.  Yes, we have our facial and body expressions to aid us when we interact face-to-face.  Actually, non-verbal carries the bulk of the weight in effective listening:  touching, nodding, laughing, leaning, smiling, tone, volume, pitch, pauses and countless other little things.  Too many people believe they have mastered the art of sensitive listening.  Yet, it is one of the most prized and least developed skills on earth.

When not face-to-face, our obligations to choose our words with care increase multi-fold.  It is especially easy to get careless in this age of electronic media.  It goes without saying that being clear is a challenge when we have no give and take.  Selecting just the right words cannot be done without a view to the reader.

Most important of all, when we write messages, we have to give careful consideration to the “tone” of the words we choose.  Cocky and confident have similar meanings but are markedly different in tenor and tone.  Connotations are built into countless words.  In and of themselves, they can be negative, indifferent, condescending, hostile, or irreverent regardless of your intent.  The possibilities are endless when it comes to the ways of skirting around saying someone is lying.  We can refer to their stories, unsupported claims, or disingenuous declamations.  My all-time favorite is “He is practiced in the artistry of shading the truth.”

Regardless of how short the written message, we must allow ourselves sufficient time to read and re-read it with a view as to not only whether it is clear, but how it will make the reader feel.  Far too often, when we relate to close loved ones, we are least attentive to the kind of proofreading that matters most.  Before excusing yourself by saying you were swamped and didn’t have enough time, think about the hours and days and even years it may take to make amends for something said in haste.  I am reminded of my uncle’s clever poem about a speeder who ended up in an early grave:  “But, oh, just think of the time he saved.”

As we age, we tend to limit our circle of close friends to those with whom we can have satisfying communication.  That is wise.  Dealing with family makes such decisions more difficult, but there are some whose world view and basic values are so opposed to our own, we may have to settle for infrequent, even superficial interaction, to save our sanity and avoid unnecessary stress.

We all know that love is not something to which we are entitled.  It is something we have to earn every day with word and deed. None of the intimate communication problems I have identified here are simple to correct.  The factors that contribute to each are complex and multi-faceted.  It is too easy to create a new problem in our attempt to eliminate another.  That doesn’t mean we stop trying.  The first thing we have to remember is that none of our interactions have a distinct and separate beginning and end.  Relationships exist on a continuum that cannot be taken out of context and treated as independent events.

The most fruitful approach is to begin by looking into the mirror.  There we see the person closest to us over whom we have the greatest control.  If you have to wonder, “Does this apply to me?” It probably does.  The more successful we are in recognizing and improving on our own shortcomings when we relate to others the more changes we will begin to see in them.  Therein lies the real power of effective interpersonal communication that contributes most profoundly to our own health and to that of the people most precious in our lives.

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An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

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 Bob Aronson  has worked as a broadcast journalist, Minnesota Governor’s Communications Director and for 25 years led his own company as an international communication consultant specializing in health care.

In  2007 he had a heart transplant at the Mayo Clinic in Jacksonville, Florida.  He is the Bob of Bob’s Newheart and the author of most of the nearly 300 posts on this site.  He is also the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) support group.

You may comment in the space provided or email your thoughts to him at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Will Power — It Works As Well On Alcoholism As It Does On Diahrrea

By Bob Aronson

Alcohol abuse, especially outright alcoholism is a leading cause of the organ shortage because of its destructive effect on the heart, pancreas, liver, kidneys, reproductive organs and stomach. There are over 123,000 people waiting for organ transplants in the U.S. and with only about 30,000 transplants a year, many on that list will die.

As a former drinker, a heart transplant recipient and the author of most of these blogs, I am always intensely interested in stories or postings about alcohol and drug abuse, so I actively seek the latest information about those subjects.

In that light, I was surfing the internet recently when I came across a group discussion of the issue. What caught my attention was this statement, “If you make the decision to start drinking you can make the decision to stop. Just say, NO, I’m not going to drink anymore, then pray for sobriety and it will come.”

When I saw that my immediate reaction was that the writer was unaware of what it’s like to be an addict and the total misery in which the alcoholic lives. It is a life no one would wish on their worst enemy. It is a life no one would live if they had a clear choice to get out of it. I wish it was so simple as to just, “quit.” or say, “NO,” but more on that, later.

***(A note to the reader. Throughout this blog I refer to the alcoholic as “he” for convenience. Please read it as he/she or him/her because everything I relate here applies to both genders. Also, I can only relate to the disease as a male. Women have many of the same experiences as men, but many more that are totally different. In many ways women suffer even more than their male counterparts)

I am writing this in my role as a recovering alcoholic of some 34 years. I have not had a drink of alcohol in all that time, I am not drinking today and I don’t plan to tomorrow, but I live every moment of every day with the knowledge that I am just one drink away from returning to  the greatest misery man can inflict on himself whether physically, emotionally or both.

This is not one of those “tell-all confessions.” Since the birth of this blog in 2007 I’ve received dozens of requests for more information on alcoholism, but not for the usual fare, many of our readers want to know what it’s like to be an alcoholic. This is an attempt to answer that question, to explain the agony of alcoholism and to help you recognize that the alcoholic can’t “just quit.” I hope it offers some insight into the alcoholic mind and answers at least a few questions you may have about what it’s like to be a drunk.

Those who say, “Just quit,” or, “just say no” have no idea what it’s like to be a full-blown, full-time, uncontrollable drunk. If it was a matter of choice, a matter of will power, a matter over which alcoholics had control they would not choose to live that way. It is a life of absolute misery, dishonesty and risk. Your best friend and worst enemy is the bottle, it totally controls your life. Every minute of your existence revolves around making sure you have access to alcohol. If you have to choose between eating and drinking, you’ll drink. If you have to choose between bleeding to death and drinking, you’ll choose bleeding and if you have to choose between those you love and alcohol, you will choose alcohol and all the while knowing it’s wrong — totally and absolutely wrong. Worse yet, as you continue to choose alcohol over what’s right, that cloud of oppressive guilt that follows you around  will tighten its stranglehold forcing you to consume more in another feeble attempt to stop the agony.

One other point about “If you can choose to drink, you can choose to stop.” The initial choice to drink is usually made while sober and for many, it is the last sober choice they make. Once the brain is supersaturated with alcohol, how do you get it to make a rational, logical choice? You can’t. The only time choosing to stop drinking might work is if you choose to get HELP to stop drinking, because you cannot do it alone. You must, as the AA Big Book says, realize and admit that you are powerless over alcohol and your life has become unmanageable. Only when you are willing to put your life in the hands of others (usually highly qualified addiction professionals) do you stand a chance of getting it back.

I stopped to read the post and comments I mentioned earlier because I have an interest in the subject. Addiction runs in my family. I was a practicing alcoholic for a long time and the practice paid off, I became a perfect drunk. It started when I was a teen who thought a weekend of beer consumption was normal behavior. I realized at that early age that while others could have a can of beer or two and then quit, I couldn’t. I always drank until drunk (sometimes unconscious) or until we ran out of alcohol whichever came first.

My early adulthood was not unlike most other people, I was young, struggling to pay the bills and unable to afford alcohol so my drinking problem wasn’t all that obvious. I knew, though, that anytime alcoholic beverages were available my old pattern continued. Once I started drinking I couldn’t stop. As time went on and there was a little more money, I drank more. At first it was just In the evening and on weekends but before long I was following my father’s habit of having a little “bump” upon arising each day. That progressed to several “bumps” and finally arriving at work drunk and staying that way. I was not a bar fly, I did most of my drinking privately and…I was good at hiding it. From jobs in broadcast journalism to serving as a Minnesota Governor’s Communications Director and then back to broadcast journalism I was a full-blown alcoholic and almost no one knew it. I was under the influence of alcohol even when I was on the air several hours a day and yet, no one ever mentioned it.  Not then and not since. .

I had tried a hundred times to quit drinking and each time I did it with great resolve, but my best efforts never lasted longer than a week  or two before I was back to my old habits. Finally, though, I hit bottom. It was 10 o’clock  in the morning and I had already consumed nearly a quart of vodka and hadn’t eaten in days. I was very sick. Sicker than I had ever been before. While my head was nearly in the toilet bowl I made the decision to get help. I crawled to the phone, found the yellow pages and located a treatment center a couple of miles from my home. I then called my brother, told him what I wanted to do and asked him to drive me there.

It was about noon on Saturday July 17, 1982 and my blood alcohol was 3 times the legal limit. I was so wracked with guilt and pain and so sick I just wanted someone to help me feel good again. I was, “sick and tired of being sick and tired.”

The Mounds Park hospital and treatment center in St. Paul, Minnesota no longer exists but they were the right people in the right place at the right time. I have not had a drink since, but I could not have done it alone. “So,” you ask, “Why are you writing this?” I’m doing so because I’m hoping to bring some understanding to the issue.

The first few days in treatment were awful. When I wasn’t in the bathroom emptying my stomach, I spent my time trying to think of a way to get out of there and get a drink, but the papers I had signed had me in voluntary lockdown. Saturday, Sunday and Monday were probably the most tortured moments of my life. I was so sick I prayed for death. Even though they gave me tranquilizers this “purging” period was awful. I later learned that withdrawal from alcohol addiction is among the worst and can be deadly. As I dried out I never left my room, talked to none of the other patients, didn’t eat and drank what seemed to be gallons of water and even that wouldn’t stay down. Anyone who has ever had a hangover, has experienced just a smidgen of what alcohol withdrawal is like for the person who consumes it by the quart or liter every day of his life. It is why the alcoholic needs some “hair of the dog that bit you” in the morning. it’s the perfect way to cure a hangover. If you never stop drinking you never have a hangover. Well — almost.

I’m sure there are many who have been heavy drinkers, made the decision to quit and did. Others counted on God’s intervention and it worked, but for the vast majority of alcoholism sufferers quitting is beyond their ability. That was and is e nature of my condition. I am absolutely convinced that my ability to quit drinking was unrelated to will power. An alcoholism counselor once told me, “If you think will power will work, the next time you have diarrhea, use will power to stop it.” Just the thought of drinking again scares the hell out of me.

So, you might ask how and when you know you are an alcoholic and that’s a great question. In the deep dark recesses of your mind you probably know from that first drunk when you couldn’t stop drinking. The great test of whether there is something amiss is for me quite simple. Most normal, social drinkers can have one or two drinks and quit with no discomfort. I can’t. I know I can’t because I tried it many times. I find it impossible to believe the claims of some who say, “Addiction can be cured.” I will only accept that when they can show me highly supervised, peer reviewed, large group, long term clinical studies that clearly show patients who were cured can drink again and stop after one or two. Anyone or any organizations that claims to have a cure and cannot provide that evidence does not, in my view, have one.

Only others who share my experience will really understand this, but once I have a single drink of alcohol something is triggered in me that is so strong, so incredibly powerful it will cause me to have another and another and another. As the adage goes, “One drink is too much and a thousand are not enough.”

To further the point you might ask, “Well what if you had that drink and then thought real hard about the consequences like, Hey Bob,  you could lose your job, your marriage, everything that is dear to you and wind up in prison for life as well, wouldn’t that stop you?” I guess a rational mind would immediately agree that those considerations would cause you to step back from the bar, but – you must remember the alcoholic mind is not one that is rational. It is driven by a craving so deep and so irrational it will violate every moral and ethical standard you ever had in order to spend more time with its best friend forever, alcohol.

That is not to say the alcoholic has no conscience. Once he has done whatever horrendous thing it was that relieved him of all that he loved he will feel great guilt, depression and sorrow. He will swear to change and to make things right, but when the agony of the hangover (withdrawal) begins he will again turn to the bottle. Does he have a choice to drink or not to drink? Of course, and the alcoholic will vow time and time again to make that choice, to quit drinking and will be incredibly strong in his resolve as long as he is under alcohol’s influence, but the resolve diminishes right along with the influence.

“One more drink,” he says, “will get me back on the road to sobriety,” and he really believes it, but one leads to six and to ten more and then to a repeat of the very behavior that caused all the guilt and there’s only one way to deal with it, more alcohol. It is a powerful drug and while it can cause one to lose his inhibitions (read that “good sense”), it also helps one forget, until you start getting a little sober and then you start all over again.

So you see, the alcoholic knows he has choices and he is willing to make the right one, but he never gets to a point where he feels good enough to make it, unless he is drunk and then even his alcoholic mind knows he has failed again.
Alcoholism is not only the failure to say “no” to the drug, it is also a complete abandonment of all that you know is right —  a behavior change so great as to be unbelievable. The image of an alcoholic that many have is of a foul-smelling bum in dirty clothes who sleeps in a cardboard box in a dark, trash cluttered alley. He is inarticulate, uneducated and offensive. That’s the stereotype, but you know what? That’s only a partial picture.

The rest of the story is quiet and invisible. Every day millions of alcoholics get dressed for work in a stylish suit, and works right alongside you. When I was drinking heavily in the 60’s, 70’s and early 80’s I wore expensive clothing, drove very nice cars and was always presentable and functioning. I anchored TV and radio news shows, hosted a radio talk show and functioned as the press secretary to a state Governor. Few  who knew me would call me a drunk. They might know that I drank a little, but no one would suggest I was an alcoholic.

Like many alcoholics I was pretty good at functioning while inebriated. Even the people with which I worked most closely had no idea that I had a secret life. They didn’t know that the double wide briefcase I carried was not full of office work. H, it carried a quart of vodka and a carton of cigarettes. They didn’t know that when I arrived at the office in in the morning, I had already had several drinks or that I had slept in a chair in the clothing I wore the day before. They were unaware that I hid my bottle in the bottom of the men’s room waste basket so whenever I wanted a drink, I just went to the men’s room. They didn’t know that behind the wall mirror in my bathroom at home, I had built a carefully hidden compartment to house my liquor supply. It was constructed while my wife was at work to ensure secrecy. The hidden latch on the wall mirror let it swing open to reveal several bottles sitting on a 2 X 4 shelf. It is where I got my first drink of the day, just a little something to get the hair off of my tongue and get my heart started. Neither friends nor family knew about the sandpit about six blocks from my home. It had a bottle of vodka hidden under the “No trespassing” sign that was only recoverable under the cover of night. There may have been other places as well and the bottles may still be there because I forgot where I put them.

Not all, but many alcoholics suffer from “Blackouts” and I was one of them. I know one fellow traveler who says he missed the “entire Carter Administration.” Blackouts are periods of time that cannot be remembered. They are periods when you can walk, talk and work and remember none of it. There are huge gaps in my memory of those years and it is attempting to recollect them that threatens my sobriety even though they were a long time ago and I might have just fallen asleep. It is not knowing and suspecting the worst that beckons me to have “just one.” The flashing red, white and blue neon “Liquor” signs act as strong magnets that seek to pull my car into their parking lots. I shudder to think of what I might have done that I cannot remember. So far, though, my recovery program and support system have proved to be a stronger force and I fear the liquor sign more than I fear the memories.

When you are a practicing alcoholic you have to spend a whole lot of time making sure you have an uninterrupted supply of alcohol. There’s a lot of planning that goes into being a drunk because our greatest fear is running out of liquor. In Minnesota you can’t buy hard liquor or even strong beer on a Sunday. The liquor stores close at 10 PM on Saturday night and don’t open again until 8 AM on Monday. It is critical that the flow of alcohol not be impeded. An ample supply must be available at all times in a place that is always accessible.

We drunks spend a whole lot of time hiding our addiction, even to the point of having a hidden secret stock that can be consumed privately so when attending a party you can be seen drinking a Coke or Pepsi not liquor, wine or beer. During that time I had many people comment on the fact that I rarely “Drank” and I always agreed.

When I was Anchoring a regional network radio news show five mornings a week, I sat across a desk from my producer. We were almost in each other’s faces every day and I was never sober. One weekend I called her and said, “Christa, I won’t be in on Monday, I’m in treatment.”

“C’mon Bob, is this your idea of a joke? Why are you calling?” She was quite indignant.

“I’m in treatment for alcoholism, Christa,” I said.

“I told you it’s not funny,” she responded.

It took a while to convince her. We had worked across from each other for three years and she never knew I drank even though I was almost never sober. While on the air I labored mightily to keep my enunciation crisp and to be an errorless reader. Face to face I interviewed Governors, captains of industry, super stars of entertainment and men and women of the cloth while at the same time increasing the profitability of not only the liquor companies but also the businesses that make, distribute and sell Certs breath mints, and Binaca breath freshener.

I think I mentioned that it takes a lot of planning to stay drunk and hide the fact that you are. I worked hard at keeping my drinking preferences and practices secret so I made sure I didn’t frequent the same liquor stores too often. I did not want to be seen frequenting bars and nightclubs, so I didn’t go to them. I almost never drank in a bar. I knew the hours of all the liquor stores, their locations and their prices. I even went so far as to deposit my empty liquor bottles in someone else’ trash cans and often not even in my neighborhood. At work I once put an empty vodka bottle in the corporate President’s waste basket.

Sobering up as I mentioned earlier was not easy. It was terrible. When finally the alcohol was out of my system I vowed to go public with my addiction as a means to help me stay sober. Treatment, AA meetings, being public about my problem helped, I’ve not had a drink since a little before noon on that day in ’82.

While I respect those in the scientific community who insist that alcoholism can be cured and that drinkers can choose to stop, I vehemently disagree. I know scores of sufferers just like me. We talk, we relate, we empathize and our stories are nearly identical. Furthermore I have attended hundreds of AA meetings and read scores of books on the subject. They all verify the fact that those who suffer from alcoholism also suffer with feelings of helplessness, depression, resentments and most importantly — overwhelming guilt.

I don’t pretend to be an expert on addiction I am but a single case among millions. My evidence is anecdotal and not scientifically acceptable, but I know that my story and my experiences are repeated thousands if not millions of times every day. I don’t know why people become alcoholics and I don’t understand the psychology behind it I only know it very nearly ruined my life, hurt my friends and family immeasurably and affected the lives of many others as well.

If someone in your family or circle of friends has a problem with alcohol you can try to help, but don’t be surprised if your offers are perceived as threats and you lose your relationship with that person. The alcoholic didn’t drink for you and is not going to stop for you or for anyone else. He will only stop when he hits rock bottom and can no longer stand living that way. Then he will either seek help and keep seeking it for the rest of his life, or return to drinking and alcoholic bliss where unpleasant memories are washed away in a sea of 90 proof alcohol.

Alcoholism is slow suicide. It will kill you one way or another. Either you will succumb to some disease, or you will drink yourself to death. It’s suicide but very slow, very painful and very effective.

My closing thought is the same as the one with which I opened this posting. The life of an alcoholic is a life of misery, shame, guilt and fear. No one, no one, would choose to live like that if choice was really an option.

Below are some resources for Alcoholics,  their families and friends.

Substance Abuse and Mental Health Services AdministrationExternal Link—For information about substance abuse prevention and treatment services:

• 24-hour Help Hotline: 1-800-662-HELP (4357)
• Treatment Facility Locator and Other ResourcesExternal Link
• Prevention of Substance Abuse and Mental IllnessExternal Link
• Publications StoreExternal Link: 877-726-4727

National Institute on Drug Abuse—For information about other drug problems that often co-exist with alcohol problems: 301-443-1124.

National Institute of Mental Health—For information on problems such as anxiety and depression that can co-exist with alcohol problems: 866-615-6464.

• Rethinking Drinking
• NEW: Treatment for Alcohol Problems: Finding and Getting Help
• A Family History of Alcoholism: Are You at Risk?
• Alcohol: A Women’s Health Issue
• Beyond Hangovers
• Drinking and Your Pregnancy
• Harmful Interactions: Mixing Alcohol with Medicines
• Older Adults and Alcohol: You Can Get Help

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of the nearly 300 posts on this site.  You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

Mobility Scooters and Wheelchairs. Who Pays and Other Good Stuff

 

 

Nobody grows up obsessed with the idea of getting a mobility scooter or a wheelchair. They are not on anyone’s wish list unless your physical mobility is limited. While these means of transportation offer disabled people a new sense of freedom, they also bring some new and unexpected realities to life.

This blog is primarily about how to select a mobility scooter and how to determine if Medicare will pay for it. At some future date I might focus on other issues important to the disabled.

You will likely find that my emphasis is on scooters and that’s only because they the most common and least expensive way to get from one place to another if walking is not an option. Also, I am a mobility scooter user. We may address motorized wheelchairs specifically later. There are, though, some commonalities both share. One thing is certain. Your life is in for some big changes once you accept the keys to your new ride.

Scooter or wheelchair? That’s probably not a decision you will have to make, your physical condition may dictate what will work best for you, Disabled World offers this explanation. (http://tinyurl.com/b4gxgl)

Issues to Consider when Buying a Mobility Vehicle:

• Electric wheelchairs tend to be far more expensive than mobility scooters
• If you need to transport your personal mobility vehicle, a compact mobility scooter can be folded up to fit in a trunk or a back seat. Alternately, you can carry them behind a car with a trailer. Most electric wheelchairs do not fold and are too heavy for a simple trailer.
• If you have a wheelchair-modified van, it is easier and safer to tie down an electric wheelchair than a mobility scooter
• An electric medical scooter is steered with bicycle-like handlebars, whereas electric wheelchairs use a joystick. If you have issues with upper body mobility, a wheelchair might be easier to control.
• If you have posture issues, a wheelchair usually offers more features and support to help you, including motorized stand, tilt, and recline options.
• If you need to stay in your mobility aid for most of the day, a wheelchair is usually more comfortable.

The right choice of a personal mobility vehicle depends on how you are planning to use it.

• Are tight corners an issue?
• Would you like to fully enjoy the great outdoors, or are you more interested in shopping?
• Will you be running local errands, using public transportation, or using your own vehicle to move your personal mobility vehicle?

Once you answer these questions, you will be able to make the right choice for your specific situation.

I am the owner of two mobility scooters because I have COPD and can’t walk very far. One of the scooters is for outside the home and the other is for venues that offer flat, even surfaces upon which I can ride. Both of my scooters were paid for privately, no government funds were applied for or offered. If you want every minute detail about the process of acquiring mobility vehicles go to https://www.medicare.gov/coverage/manual-wheelchairs-and-power-mobility-devices.html  If a summary will satisfy you read on.

Let’s start with the most common question. “Will Medicare pay for my wheelchair or mobility scooter?” That single question is the cause of a lot of confusion, because the answer is, “Maybe.”

There are many suppliers who will tell you that Medicare will pay and you may even hear it from trusted friends. Here’s the truth. Medicare will pay up to 80% of the cost of an “approved” scooter or wheelchair if the supplier accepts Medicare assignment. That means they have to agree in writing that they will accept what Medicare will pay and you can be billed for no more than 20 percent of the total. If the supplier does not accept Medicare assignment Medicare will still pay the standard amount, but the supplier can send you a bill for any amount they choose.

So, back to the answer. For Medicare to pay for a manual (unpowered) wheelchair, a senior must have a condition which prevents them from moving around in their home as they go about daily living. Their disability cannot be resolved through the use of a cane or walker and the wheelchair cannot be necessary only for use outside the home.

For Medicare to pay for an electric or powered wheelchair or scooter the individual must have the same needs as for a manual wheelchair but they must prove they do not have the physical strength to operate it. In addition they must demonstrate they have the ability to control the powered device without hurting themselves or those around them. Key point
here. You have to show that you need it to get around in your home and that your home is barrier free.

In either case, getting Medicare to pay is not an easy task. A written order from a doctor is necessary which must state the medical reason for the need and the type of wheelchair which is required. Be very careful. Medicare fraud is rampant and usually committed by suppliers or others who sell the goods, services, medicine and medical equipment that seniors need.

Recently I met a man my age who had a scooter identical to mine. I asked how he liked it and he told me that not only was it a great scooter but that Medicare had paid for it. Now I know better than that so I asked how that worked and he explained that with the help of his scooter supplier he found a physician who provided the medical certification he needed. Beware – if any supplier has a list of Doctors you can see who will approve your purchase it is likely you will get one fraudulently.

The Medicare website says this about getting started on the road to acquiring a scooter or wheelchair. http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&script_id=189

“Before you get your wheelchair or scooter, you must have an office visit with your doctor. The visit should take place no more than 45 days before the DME (Durable Medical Equipment) order and should deal with the medical reasons you need the wheelchair or scooter.

Your provider must sign an order or fill out a prescription or certificate that states that you need the power wheelchair or scooter to function in the home. The order must state:

Your health makes it very hard to move around in your home even with the help of a walker or cane;

• You have significant problems in your home performing activities of daily living such as getting to the toilet, getting in and out of a bed or a chair, bathing, and dressing;
• If you need a power wheelchair, you cannot  use a manual wheelchair or scooter, but you can safely use a power wheelchair and
• The required office visit with your doctor took place.

The equipment must be necessary for you in the home but you can also use it outside the home. You can get only one piece of equipment to address your at-home mobility problem. Your doctor or other provider will determine what equipment you need based on your condition, what equipment can be used in your home, and what equipment you are able to use.”

Now some other scooter issues.

As we mentioned the scooter has to first be approved for use in your home. If that has been done then you must consider where else you might use it. Medicare might give you some leeway in your choice of vehicles, but not much and if they do and you choose one with all the bells and whistles you could wind up with a hefty bill.

Outside the home, here’s what you should consider.

• How will you transport it? Assuming you might want to pack it into the back of the mini-van how will you do that? Your scooter will have to be transportable, that means lightweight and easy to disassemble and assemble unless you can afford a power ramp on the back of your vehicle, one onto which you can drive so there’s no lifting or disassembling involved.
• How much clearance is there between the bottom of the scooter and the road below? My bigger scooter has a little over 5 inches. The new, smaller one has but 2.5. That means if you get into an area without curb cuts you will be unable to use sidewalks and take my word for it, the streets are no place for scooters or wheelchairs. They are much too slow and often invisible to drivers of cars and trucks. Smaller scooters with low clearance can get stopped by ruts, bumps and uneven surfaces very easily and if you are alone, what do you do?
• Lighting. Most scooters and wheelchairs don’t come with it. Buy a headlight and taillight anyway, you never know when you will be caught out after dark and a scooter or wheelchair without lights is an accident waiting to happen. Some mobility vehicles don’t even come with reflectors, buy a couple of those as well.
• Safety flag. You should also purchase a safety flag that stands about 4 or 5 feet high from the back of your vehicle. It will help both drivers and pedestrians see you coming and add some safety insurance.
• A basket. Most come with a basket, but if not get one. You will need somewhere to put your “Stuff.” You can even buy drink holders that snap on to your armrests.
• Because I drive my scooter to the supermarket about a mile away a couple of times a week I drive though areas where homes are being remodeled or built and where other construction work is done. I had several flat tires until I went to a local bicycle shop to have solid rubber tires installed. No more flats. Some will tell you that solid rubber tires offer a much bumpier ride, but the fact is that scooters and wheelchairs ride like skate boards anyway. Get the solid rubber. If you are a purist and insist on pneumatic tires, get a patch kit and a tire pump and keep it in the basket of your scooter because you will need it.
• Cane holder. If you use a cane you’ll need a holder. The maker of your vehicle probably has them as an accessory or they might even include one at no extra charge.
• Rear View Mirror. It may sound silly but consider this, you are driving and you need to know what’s in back of you as well as what’s ahead. Rear view mirrors will come in quite handy. You will realize how important they are when you back into someone for the first time.
• Batteries. How far will they take you, how long will they last and do they come with a charger?
• Capacity. How much weight will it safely transport?
• Test drive. Ask to take it somewhere out of the showroom…around the block, into a mall, somewhere where you can get the “feel” of the scooter.

Those are the basics. I know I have only scratched the surface, but perhaps you will find something useful here anyway.  You can add to the list once you have become an experienced mobility vehicle driver – and – you will add to the list. I purposely did not get into Scooter/Wheelchair brands and suppliers. Just Google Mobility scooters/wheelchairs and you will get all the information you need. There are also several Internet forums you can join to chat with other users about their experiences.

Finally, this word. There have been admirable attempts at making the world more accessible, but they are too few and still too rare. In many buildings you will find stairways and no ramps. Disabled parking is often abused by those who don’t need it. Mobility carts in supermarkets and other businesses are wonderful, if you can get one.  Again, too many people who don’t need them, ride them.  Even the sidewalks can be problematic when cars parked in driveways overlap and block the sidewalk, forcing scooters and wheelchairs into the street. And, most importantly those of us who are disabled are simply not seen.  I can’t tell you how many times people are looking over my head as they walk right into my scooter.

Elevators also present a problem.  If I can get my scooter in all the way to the back of the elevator before anyone enters there is usually room for several more people and often they will stand back and allow me to do that. On other occasions, though, the crowd surges around me, packs the elevator and then as the door is closing they will look surprised when they see there is no room for me even though I was there first.

Anyone who has a mobility vehicle will have their own stories to tell. None of us want special treatment we only want to be noticed and considered. And, oh, there is one more item. Don’t be surprised when while on your scooter in the company of your significant other a clerk or salesperson will address them not you. For example it is not uncommon for a clerk who would like me to get up to look at something to say to my wife, “Can he walk?” She often says, “Yes, and he hears and talks, too.”

So, the next time you see a disabled person think for just a moment about what it must be like to be unable to walk very far if at all and how riding a scooter or wheelchair presents a whole new set of barriers. A little consideration goes a very long way.

I have written two other blogs on mobility vehicles here on Bob’s Newheart. You can find them by clicking on these links.

https://bobsnewheart.wordpress.com/2013/10/09/mobility-scooter-extended-test-drive-report/

 

https://bobsnewheart.wordpress.com/2013/07/10/mobility-scooters-a-first-time-users-observations/

 

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Attitude and Health. The Power Of Positive Thinking

“Strength does not come from physical capacity. It comes from an indomitable will.” – Mahatma Gandhi

 

Introduction by Bob Aronson

 

Dawn Anita Plumlee is family. I am proud to say she is not only a member of my personal family, but also my larger extended one, the Organ Donation family. She and her sister, Dr. Priscilla Diffic-Couch are frequent contributors here.

 

Dawn Anita has never had an organ transplant and likely won’t need one, nor has anyone in her immediate family, but she is as committed to our cause as any one of us who has either given or received a life-saving organ.

 

Dawn Anita and her husband Jerry have met adversity up close and personal, slapped it in the face, shoved it aside and forged ahead. They are two of the most positive people I know and share our passion for saving lives.

 

In a song, Kenny Rogers advised us to, “Know when to hold em, and Know when to fold em…” Dawn Anita knows and she ain’t likely to “Fold em” any time soon. 

 

This inspirational story is true. Dawn Anita Credits her many successes to attitude and the power of positive thinking. This is her account of just one of those journeys. 

 

The Power Of Positive Thinking

By Dawn Anita Plumlee

 

Lying in my hospital bed staring into the darkness while listening to the gloomy sounds that ring out in a hospital in the middle of the night…. buzzers beeping, patients calling for help and the sound of nurses’ footsteps scurrying down the hall, I was trying hard to wash the negative thoughts from my mind. I glanced over at my dear devoted husband Jerry sound asleep in the hospital chair beside my bed. His body was twisted, cramped and confined. He looked very uncomfortable. I smiled when I saw that he hadn’t bothered to take off his cowboy boots. One toe was pointing to the ceiling and the other was pointing towards the wall. Soft, intermittent snoring sounds filled the air. Warm thoughts flooded my mind knowing he would go to the ends of the earth and back for me. I knew he was worried, and it was difficult for me to comprehend that I was here waiting for a blood transfusion. I closed my eyes and my thoughts drifted back in time to the events that had taken place over the past few months.

 

It was 2013. I turned 71 on my birthday, but in my heart I felt more like I was 51. Life had treated me good those 71 years, I had a wonderful husband of 55 years, two beautiful children, seven terrific grandchildren, and three precious great-grandchildren. My health was excellent. I had never had any major illness and was not taking any kind of medication. I was retired and enjoyed the time I spent working on our small ranch, riding horses, taking care of cattle, and helping with the everyday chores that occur on a ranch. I was still active in music, writing songs, recording and singing and was preparing to enter the Miss Senior Oklahoma Pageant for the second time.

 

I thought of all the hours Jerry and I had spent over the last few years clearing timber behind our house. The work was hard, dusty and dirty, and it seemed to be a never-ending chore, picking up stumps, trimming trees, and burning brush piles, driving the tractor disking and harrowing preparing the ground for planting grass. It was exhausting work and my energy level seemed to drain quickly, sometimes struggling to even catch my breath but never admitting to myself that anything was wrong.

 

My husband and I were taking our early morning walk when I suddenly stopped and exclaimed to him, “I can’t seem to walk and talk at the same time without running out of breath.” I thought to myself, “Boy, I have really let myself get out of shape,” so I began walking faster and longer. My stamina and ability to walk and talk without running out of breath did not seem to be improving.

 

Not wanting to admit anything could be wrong with my health, I dismissed the fact that I had suddenly dropped ten pounds, I experienced nausea nearly every day, my urine was a dark color, and I was constantly fatigued. My blood pressure regularly registered extremely low, and I knew something with my body wasn’t 100%, but I would not allow myself to be overly concerned. After all I was tough. I was a great believer in the power of positive thinking, so I was optimistic and believed strongly that I would be able to overcome any problems that I was having.

 

I had chosen to perform an Elvis medley for my talent in the Miss Senior Oklahoma Pageant. The songs were upbeat, and it was my nature to put everything into each of my performances moving energetically on stage. During rehearsals I noticed I could not move as I normally did without becoming winded. I would have to bend over and breathe deeply in order to continue. The night of my actual performance, I gave it my all, but when I watched my performance on video, I was very disappointed. I knew I was subconsciously protecting myself during my performance in order to make it through the medley.

 

Dialing the phone, I felt weak and a wave of nausea hit me. Our daughter “Punkin” answered the phone and said anxiously, “What is it Mom?” I didn’t want to worry her. This was a very special occasion. Her daughter Rachel (our granddaughter) was getting married and the reception dinner was this evening. Fighting to hold back tears, I said, “Punkin, I’m not feeling very good, and I am so sorry, but Dad and I cannot make it to Rachel’s reception dinner, but we will definitely be at her wedding tomorrow.” Concerned, Punkin said, “Mom, are you okay?” Bravely, I replied, “Oh, I’m sure I’ll be fine by tomorrow. Tell Rachel we’re sorry, and we’ll see her at the wedding.”

 

My dad died at the age of 80 with congestive heart failure. Since I was experiencing shortness of breath, I was fearful that I might be having heart trouble, and I knew I had to find a primary care doctor. The first thing the doctor did was routinely complete blood work. They drew my blood on Tuesday. On Wednesday I received a call from the doctor’s office saying they needed to draw some more blood. I went in on Thursday morning and gave some additional blood not really thinking much about it.

 

Late that afternoon I was helping my husband Jerry unload a truckload of sod to put on the lawn. Each time I grabbed a roll of sod and placed it on the lawn, I would have to bend over and catch my breath a minute before continuing. Pulling some sod off the truck, I noticed the farrier had arrived to shoe our horses. Jerry told me to go help him, and he would finish putting the sod on the lawn. Relieved, I happily went out to catch the horses for the farrier. I was surprised when I saw Jerry walking out to the barn motioning for me to come to him. He said, “Dawn Anita, the doctor’s office called five times and left word for you to call right away.” Knowing it was past 5:00, I said, “They’ll be closed now, I’ll call in the morning,” to which Jerry replied, “No, go call them now.”

 

Dialing the number, I thought to myself, “I wonder what they could possibly want?” As I had predicted, their office was closed, so I left a message. In less than thirty seconds the phone rang. It was the nurse from the doctor’s office. A little too urgently she said, “Mrs. Plumlee, you need to get to the emergency room right away.” Confused, I asked, “What’s the problem?” to which she replied, “You have severe anemia and we have alerted ER that you are on your way.” I thought to myself, “Anemia, that doesn’t sound that urgent.” I asked, “Can’t this wait until tomorrow? Am I going to die tonight or what?” Jerry grabbed the phone and said, “Quit arguing with her, we’re going to the hospital right now.”

 

The waiting room at the ER was full when we arrived. Thinking I was in for a long wait, I walked to the front desk and gave them my name. The receptionist jumped up, motioned me through the door, quickly looked at my ID and medical cards and sent me back to a room. In less than five minutes, the doctor was there. Jokingly, I said, “Hey, Doc, my insurance must really pay good for you to get here so quick.” I realize now I was using humor to hide my fear of what was happening.

 

The doctor informed me that my hemoglobin count (HGB) was 5.4, which was less than half of what it should be. That was a little alarming, but I didn’t realize just how serious it was. The doctor then asked “Mrs. Plumlee have you been bleeding anywhere?” and I responded, “Not that I’m aware of.” I guess he didn’t believe me, because he proceeded to perform a couple of rather unpleasant tests. A portable x-ray machine was wheeled into the room for x-rays of my chest, and the hospital ran several tests on my blood. The doctor ruled out cancer and indicated further testing would need to be done. I heard him say to the nurse “This might turn into a difficult case,” and he then told me he had ordered three units of blood. I was doing my best to be positive, but fear started creeping up my spine and my heart started beating faster; it felt like I couldn’t breathe.

 

And that’s how I ended up in the hospital waiting for a blood transfusion. My sister Priscilla called several times to see if they had given me the transfusion yet. I thought how nice it was of her to be so worried about me. I have to admit, I was more than a little worried myself, but if I had known what she knew, I would have been frantic. Most people with HGB as low as mine are not up and walking around. The organs begin to shut down, you’re a likely candidate for a heart attack, and it is not unusual for someone to lapse into a coma. Around 7:00 the next morning, the nurses changed shifts, and a new nurse came into my room. With a surprised look she said, “Oh, you’re awake.” I replied, “Oh yes, I’ve been awake most of the night,” not realizing that she had checked my stats before coming into my room, and she fully expected me to be in a coma.

 

Apparently the blood bank was having difficulty finding a match due to the antibodies in my blood. After 12 hours, I finally received three units. They tested it again after the transfusions, and my HGB had risen 4.2 points…thank goodness! My doctor came by before I was released, gave me some Prednisone and handed me a prescription. She told me that by tomorrow I should be feeling much better. She said she had referred my case to an oncologist/hematologist at the Cancer Center, and they would be calling me in a few days to set an appointment.

 

The next morning, I kept thinking, “The doctor said I should feel better today, but I have this strange sensation running through my veins.” I told Jerry I needed to lie down for a while. When I awoke, I heard voices in the kitchen and realized Jerry was talking to our son, Jerry Don. When I walked into the kitchen, tears were running down Jerry’s cheeks, and with a heavy voice, he said, “I thought I lost you because you always wake up when the phone rings, but you didn’t wake up, so I called Jerry Don.” I threw my arms around his neck and said, “I’m not going anywhere. I can beat this; I have lots of other things I need to do before I go anywhere.” He held me in his arms for a long time and softly whispered, “I love you more than you’ll ever know.”

 

Walking into the Cancer Center, I glanced around at the people in the waiting room. There was one older gentleman sitting crumpled over in a wheel chair, a lady with no hair sitting on a couch, breathing through an oxygen tube, and a frail looking older couple sitting quietly holding hands. I thought to myself, “I don’t belong here; these people are really sick.” The nurse drew my blood and sent me to another room to see the doctor. After that visit, I was at the reception desk making another appointment when the doctor suddenly appeared holding a slip of paper.

 

With a wide smile, he said, “Here are your results.” My HGB reading was 11.4, and I thought “Hallelujah!” I started jumping up and down clapping my hands with joy. Ever so gently the doctor reached out took my hand and hugged my neck.

 

My diagnosis was hemolytic anemia, and the hematologist was trying hard to determine what was causing the anemia. Over the next several months, he ran what I thought must have been every blood test that existed which included HIV and Hepatitis C and B. Every test was negative. He performed a bone marrow test, which also came back negative. Every time I went in for yet another test, I would experience small panic attacks. “What if my HGB has gone down; why can’t they find out what’s wrong?”

 

Since the blood tests revealed nothing that indicated the source of my anemia, my doctor ordered a CT scan of my chest. Picking up the results of the test to take to the pulmonologist, the words on the report jumped out at me, “Multiple findings in the chest highly suspicious for atypical infection mainly mycobacterium avium complex (Mac Lung Disease) which can have an identical appearance as tuberculosis.” Deep inside I knew. I had Mac Lung Disease.

 

The pulmonologist did a bronchoscopy and washed my lungs out with saline. It would take several weeks for the cultures to grow before I would know the test results. The nurse called each time a test result was received, and so far they were all negative. When she called to say the doctor needed to see me, she didn’t have to tell me the results, I knew.

 

Sitting on the examination table waiting for the pulmonologist, I was trying my best to remain calm. The doctor’s voice seemed to be far off in the distance as he told me I had Mac Lung Disease. I felt like I was outside of myself listening to him, all the while thinking, “This can’t be happening to me.” He told me I needed to start taking 3 antibiotics a day for a period of 18 months; the medication could affect my liver and kidneys, and two of them could cause color blindness and blurred vision. In a state of confusion, I asked, “How did I get this?”

 

He replied, “You can get it from the ground, the water and the air,” and then it dawned on me…. all the hours I had spent picking up stumps, trimming trees, driving the tractor with no cab, being constantly exposed to all that dirt and dust. I had compromised my immune system and now I have this disease (MAC lung disease is not spread by person to person contact and is not considered to be contagious. It is a fairly rare disease with fewer than one person in 10,000 becoming sick from it).

 

I was not prepared to commit to taking the antibiotics. In a state of shock, I went home and started frantically searching the Internet for natural remedies. I tried quite a few of them over a period of several months. None of them worked. My hemoglobin dropped drastically again, and I went back to see the pulmonologist. With tears rolling down my cheeks, I could barely utter the words, “I’m afraid to take the antibiotics. Is there anything else I can do?” I could see the compassion in his eyes when he said, “I think I need to make you an appointment with an infectious disease doctor for a second opinion.”

 

The infectious disease doctor could not believe I had Mac Lung Disease. I had no symptoms associated with the disease, and he informed me that hemolytic anemia was not common with Mac Lung Disease. He stated he had HIV patients whose hemoglobin was not as low as mine. He thought they must have made a mistake on the reading, and he made the comment; “There is no way you could have been walking around with a reading that low. That would be like driving 100 miles in a car with no gas in the tank.” I told him my doctor and the hospital ran the test twice, and they both came up with the same results. He made the comment, “If I didn’t have your test results in front of me, I would not believe you have the disease.” For that reason, we decided to wait and see if I displayed any symptoms before starting the medication.

 

Once again, my hemoglobin plunged to an unsafe level. I spent many sleepless nights worrying about what I should do. If I didn’t take the antibiotics I could die, but if I did take them, I could be deathly ill for months from the effects of the medication or even lose my eyesight, and I would have no quality of life at all. Neither my hematologist nor my infectious disease doctor could definitely say that my anemia was caused from Mac Lung Disease, and they could not assure me that the antibiotics would cure my anemia.

 

I turned to my loved ones hoping they could help me make a decision. They were all concerned and wanted to help, but in the end, I knew it must be my decision. I thought about the terrible side effects of the antibiotics and the scary results reported by folks who had taken the antibiotics. Needless to say, I was apprehensive about how the medication would affect me. Finally, it came to me. Start thinking positive. After all, hope and positive thinking are the strongest medicines of all. I told myself I would not be one of the people who experienced any of the side effects, and I started taking the antibiotics. The infectious disease doctor prescribed two antibiotics to be taken twice daily for a period of two years. I have been taking them for 16 months. Within four months, my hemoglobin vastly improved without having to take Prednisone. I can’t know for sure what the future holds, whether my anemia will return when I stop the antibiotics, but I try to live my life to the fullest and fill every day with joy and laughter.

 

As I write this, I realize that my near death experience in no way compares to those of you who are struggling every day to overcome a serious illness such as cancer or heart disease or those of you who are on the transplant list waiting for a life-saving organ that can prolong your life. I bow my head to all of you brave people and recognize that the human spirit is strong and hope springs eternal. My thoughts and prayers go out to each of you, and if the words in my story brighten your day in some small way or inspire you to keep fighting and not give up hope, then I will have accomplished my mission in writing this story.

 

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Editor’s note from Bob Aronson. Dawn Anita is my Wife Robin’s cousin. I have known her for about 15 years and she is an amazing woman. Not only is she one of America’s great country singers, her nearly boundless energy has benefited many. She has freely donated her time and talent to many worthwhile causes and is a longtime member of Organ Transplant Initiative and a frequent contributor to Bob’s Newheart Blogs.

 

All of us in the donation/transplantation community have benefited from her compassion and generosity. In 2013 she wrote, produced, directed and paid all costs for her Nashville, Tennessee recording of “The Gift Of Life.” She then donated the song to our Facebook group Organ Transplant Initiative to use as we see fit to promote organ donation. You can see the video here:

 

http://www.youtube.com/watch?v=eYFFJoHJwHs&feature=youtu.be

 

Dawn Anita’s story is inspirational because of her spirit. She just refuses to lose faith and to give in to adversity. As a performer she is the consummate professional. When she hits that very first note, Dawn Anita has captured the audience. I am proud to call her “Cousin” and friend. Thank you Dawn Anita and Jerry, you are wonderful examples of the American Spirit and of my favorite sentiment — “Never Give up.”

 

 

From the Bottom of My Donor’s Heart. My 20 Year Transplant Journey

Introduction

Overall my transplant has been a very positive experience, but that does not suggest that there weren’t some difficulties and challenges along the way. There were several and they were discouraging, but we kept forging ahead because the alternative was much worse. Now some 20 years post diagnosis. I am alive, I am enjoying life and I am the most grateful recipient on earth. Despite all the setbacks, the bad moments, the complications, I would not hesitate to make the same decision all over again. Thank you Mayo, donor family, my wife and family and the many friends I had and have collected since I got a new heart.

This is an accurate although abbreviated record of my journey. Yours may be totally different and likely will be. I have posted it because of a good many requests to do so. I hope it is helpful to someone. I also hope you will notice that I found some of the experience to be downright funny and I included them because seeing the humor in life’s challenges is important to your recovery. Don’t ever lose your sense of humor; in fact you should aggressively look for it in every situation. It will make your life so much easier to live.

Bob Aronson, heart recipient August 21, 2007 Mayo Clinic, Jacksonville, Florida.

 

The Beginning. An Earthquake Swallows You Whole

Getting an organ transplant is an experience that few ever have. From the time you first learn that you need one, until a good while after you have one, the ride is not unlike the wildest, highest, steepest, fastest, scariest roller coaster ride you can imagine. It is like standing in the street when an earthquake hits and the fissure in the pavement runs right between your feet. You get the same feeling you did in that recurring nightmare where no matter how fast you run, your legs feel like rubber and you keep falling, but each time you do it is harder to get up and that something that is chasing you is getting closer. You know you are going to die.

Emotions can range from terror, to giddiness, to depression, anxiety, guilt, anger and every other imaginable high, low or even fantasy. An organ transplant will introduce you to feelings you did not know you had and to realities you did not know existed. Most importantly it will allow you to see your own humanity; your strengths, weaknesses vulnerabilities, fears and inadequacies. In other words, you will get to know a side of yourself that you didn’t know existed.

All of us know that someday we will cease to exist, but no one likes talking about it. Insurance companies like to say, “If something happens to you,” and we all know they don’t mean winning the lottery or getting your very own magic Genii who will pop out of a jar and grant you anything you want. “If something happens to you” means not if, but when you die. It means dead, lifeless, no heartbeat, no breathing, no pulse – DEAD!

When you are told that an organ is failing, you are being told that the last option available to keep you alive is a transplant. You are dying. That is information with which it is hard to come to grips, and those of us who have had transplants have all heard that message loud and clear, it is inevitable. It is a sad fact, but everyone on the transplant list is dying.

I’m sure the death message is never delivered in the same manner twice because the circumstances that lead up to it are all different. The very first recognition that something is wrong is usually met with disbelief. “It’s probably nothing, maybe a false positive, it can’t be organ failure.”

In my case it was in mid-1995 when I left the office late one night after a long day. I’m an asthmatic and I had struggled for air all day. I could hardly wait it for it to end but I had a client until 9 PM. When she left, I waited until the elevator doors closed, turned out the lights, locked the door and took an elevator down six floors to the parking ramp. I had arrived at the office late in the day because of meeting and had to park at the very back of the ramp, a good block from the elevator. Most of the cars were gone now and there wasn’t a living, breathing soul to be seen. I could see my car in the distance, but it may as well have been in the next county. My breathing was so labored I doubted I could make it that far, but I had to try.

I am one of those guys who makes a decision and never looks back, so I forged ahead. I was going to make it to my car no matter what. I thought that if I walked slowly I wouldn’t use as much air so that’s what I did, but breathing was getting more and more difficult and my rescue inhaler seemed to have no effect. I chalked it up to a defective device and pushed on while carrying a full briefcase. I leaned on cars, support columns and sign posts, but stopped often and fell twice when my legs gave way under me.

By the time I got to my car my suit pants were torn from falling, my hands were scraped and bloodied from using them to break my falls and I was soaking wet from perspiration. With great effort I made it into the car, turned on the AC and just sat there hoping the rest would restore my ability to breathe. It didn’t. I called home to alert my wife that I was in distress and would pick her up on the way to a nearby community hospital ER. She said I should go to a bigger hospital, but I knew the bigger facility would be crowded and the wait would be a long one so we went to the small one.  She was right and i was wrong. here’s what happened.

It was a small hospital in Hastings,Minnesota and there were no patients waiting in the ER lobby when I stumbled to the desk and gasped, “I’m having an asthma attack and need a shot of epinephrine,” and collapsed on a chair next to the nurse.

She took my vitals, listened to my chest, looked at my eyes and fingernails, poked around my ankles and said, “This is no asthma attack.” Somehow she alerted a crash team which appeared in microseconds. They brought with them a gurney upon which they carefully placed me and removed my tie, shirt and t-shirt while wheeling me into an ER exam cubicle. Then, someone else came along and stuck some leads on my chest, sides, legs and arms and wired me to a machine. Another person started an IV. A portable X-ray machine materialized, someone gave me a nitroglycerine pill to place under my tongue but still no shot of epinephrine and I was getting angry. I knew what to do. “Why didn’t they know? I wondered”

A doctor appeared, examined me and ignored my repeated requests for epinephrine. Finally he said, “Mr. Aronson this is not an asthma attack, even though you think it is. It’s your heart.” He left the room to have a conversation in the hall with a couple of other people and then returned to say, “Mr. Aronson, we have determined that your condition could best be handled by a hospital that has cardiologists on duty and specializes in situations just like this. We are sending you there by ambulance so you will get the best and most immediate care possible,” and they wheeled me out to my ride.

Too much was happening too fast. I was totally confused. “This is asthma, for heaven’s sake,” I thought. I just couldn’t wrap my mind around this heart stuff. I was 56 years old and thought I was in very good health. I didn’t drink or smoke and was in fairly good physical condition. I just couldn’t figure out why they thought it was my heart when I knew it was asthma. The ride to United Hospital in St. Paul, Minnesota took about 20 minutes, and I was rushed into their heart unit. More wires, more machines, more activity, blood drawn, questions asked and injections given.

Another technician appeared with an echocardiogram machine. He placed more leads on my body, some cold gel and began moving a wand around the left side of my chest. In the meantime my breathing was improving.

I could see my heart on the echo monitor and hear the “gulp, swish, swish, gulp” of the machine. All the while the medical team was explaining every detail of what they were doing and I heard none of it. “It’s an asthma attack,” I kept thinking. And then I lost consciousness.

I awakened the next morning in a hospital room with my family surrounding me. Everyone was solemn and one of my daughters was crying. A man walked in, he looked like he just stepped off the cover of Gentleman’s Quarterly. “I’m Dr. Thomas Johnson, a cardiologist,” he said. “It appears as though you have a very serious heart condition called Cardiomyopathy. We are going to run some further tests, but you may need a heart transplant.”

I thought, “Boy, this guy doesn’t mince words – a heart transplant? I vaguely remembered being on the air and reporting on the story when Dr. Christian Barnaard performed the first ever in 1967 in a South African hospital. I remember thinking, “Wow, what a development. It will help a whole lot of people someday,” never considering for a moment that I might be one of them. The diagnosis was official now, I had Idiopathic, Dilated Cardiomyopathy. That means I had heart failure from no apparent cause.

It all came together at that moment. The great truth that I had continually denied and avoided was now perfectly clear. The feeling was like that you experience when a monstrous thunder clap or earthquake rattles your bones. It was like lightning bolts flashed out of the clouds, thunder rumbled louder than I could bear and the realization that asthma had nothing to do with my condition that shook my foundation. I was in serious trouble. I felt a mixture of shock, anger, terror, doubt and disbelief. That was my introduction to a process that would take 12 more years before I got a new heart.

The Disease Progresses

A measure of the health of your heart is its ejection fraction (EF). It is how much blood is pumped out of the heart with each beat. On average we pump out about 60-70 percent. My EF was 25. When it gets too low that means that the heart has to grow larger to hold the retained blood, but it’s a gradual process. For a long while I felt OK. I went about my work and with the help of medication performed as I always had. I was a communication consultant helping business executives with presentations, testimony, personal communication and media interviews, and was always upbeat and energetic. Often I was hired as a keynote speaker at conventions. I never stood behind a lectern, but rather walked around the stage, invading people’s space and getting them involved. Slowly that became harder to do.

In 1996, a year later, I started to feel a little fatigue and while still energetic I had lost a step or two, but it was barely noticeable. That same year Avis, my wife of 33 years was diagnosed with lung cancer. She fought hard and for a while it looked like she had it beat but in 1998 she succumbed to that horrible disease and I went through the motions of living. My fear of the slow disability that would be overtaking me was exacerbated by the grief I felt over losing Avis. Being alone after 35 years of marriage is almost unbearable. She was special and losing her left a very large void in my heart and my life.

I stumbled on in a continually weakening condition until 2000 when I met and married my current wife Robin. I told her about my condition and the fact that there were not enough donor organs for the number of patients who needed them, but she was undaunted and married me anyway. As it turned out she always had more faith than I did that I would get a heart and be just fine, but I was now about five years post diagnosis and my EF had dipped to 20 and I lost another step or two. As I walked the stage in my presentations I started to become more breathless so I contracted my movement circle. It was about this same time when I fainted while driving into a parking place. That development caused my physicians to implant a defibrillator in my chest to guard me against sudden cardiac arrest.

At 9 years my EF was between 15 and 20 and it had become very difficult to be as active as I had been so I made sure that I had a bar stool when I spoke that would be placed about center stage between the lectern and the edge. I could still leave the lectern and give the image of energy but I could kind of lean on that stool. Obviously the heart failure was getting worse, but not bad enough to put me on a transplant list.

Finally at 11 years with an EF of 10 to 15 I quit doing keynote speeches and only accepted small group coaching sessions where I stood on occasion but mostly sat on a stool at the front of the room, and then one day, I couldn’t muster the energy to get through a session unless I sat in a chair.

It was time. We decided to retire and move from Minneapolis, Minnesota to Jacksonville, Florida for two reasons. One being that it was my wife’s hometown and her family was there and the second was that one of three Mayo Clinics was located there. I learned they had a phenomenal record of success in getting organs and in the survival rates of transplant recipients.

I made the necessary appointments at Mayo and went through a battery of tests for several days. Finally I was told that my case would be presented to the hospital transplant committee for approval to be placed in the national transplant list. Sure enough I was approved and listed and promptly forgot about it. Everything I had read suggested that people on the list waited a long time and that many never got an organ. I was of the belief that at age 68 I was probably too old and not sick enough. After all I was up and around and not even hospitalized.

By now my EF was down to 10 and my heart was getting seriously enlarged. I was on my second implanted defibrillator and had trouble walking from the den to the bathroom without stopping to rest. Then one morning the phone rang, I answered and confirmed my identity and my transplant cardiologist from Mayo said, “I may have a heart for you.”

I could not believe my ears. I had only been listed 13 days earlier.

“Pack a bag and come to the hospital,” Dr. Hosenpud said, “and we’ll get things underway.” In my mind “pack a bag” meant, “Get your butt over here right away, break the speed limit, we’re all waiting for you, hurry, hurry, hurry.”

I told Robin about the call and we rushed out of the house to make the 45 minute cross town drive to Mayo. It only took 30 minutes. For me the world at this point was moving at near the speed of light. My always composed and realistic wife Robin had no delusions. She expected Mayo to be as reserved and professional as they always were. My mind was simply not that organized. I perceived us screeching to a stop at the hospital where a team of the world’s greatest physicians, nurses and technicians would be in the lobby waiting for us. My mind’s eye saw us running into the hospital surrounded by people in surgical garb and lab coats who were all barking orders while the hospital PA system was calling for more doctors, nurses and technicians. I fully expected the PA system to be saying, “He’s here; the guy who is getting a new heart is here.” I envisioned being thrown on a gurney, stripped of my clothing and rolled at high speed to an operating room where the finest doctors on the planet were assembled next to an ice-covered beating heart in a stainless steel pan.

The Doctors looked like Ben Casey Dr. Zorba and Patricia Neal (all  stars of the past).The scenario in my mind called for absolute pandemonium. I was that excited so they must be, too. I needed pandemonium — to have it meant this event was the show of shows, the biggest medical story of the century.

I got anything but. I walked in, stood in a very orderly line and when I was waved forward said to the receptionist, “I’m Bob Aronson and I’ve just been called by Dr. Hosenpud to come in for a heart transplant. “Ok,” I thought. “Cue the marching band and a frenzied atmosphere.” But nothing of the sort happened.

She looked up at me and smiled, looked down at her computer screen and said, “Someone will be out to get you shortly, Mr. Aronson, please have a seat.” There were scores of people in the waiting room and not a single one looked up when I entered. They all sat in perfect silence waiting their turn and ignoring my big event. For all I knew every one of them was here for a transplant as well.

“Have a seat?” I thought. “Don’t they know why I’ m here, who I am? For God’s sake there’s a heart on ice in there beating away, waiting for me and she wants me to sit?” I had considered this day often and each time I did there was pandemonium. I wanted pandemonium, I deserved pandemonium, I needed pandemonium, I craved it, but alas it never happened.

A very nice woman came out in about fifteen minutes and quietly said, “Come with me, Mr. Aronson,” and we slowly, quietly walked behind the reception desk into the surgical area, where I got on a gurney under my own power, put on a gown and was surrounded by very pleasant, highly professional staff who proceeded to quietly and efficiently “prep” me for the surgery.

Finally they wheeled me to a surgical suite where the strains of Beethoven could be heard on the speaker system as the anesthesiologist told me what his role was and about the anesthesia I would be getting. Then, he said he would give me something to “relax” me. It sure did.

I awakened in recovery the next day to the sound of Robin saying, “You have a new heart and you’re doing well.”

Recovery. The Days After

When I awakened again, I didn’t know where I was. I felt like I was duct taped to the bed. My head hurt. I was nauseous and confused. I vaguely remember several doctors entering the room. They asked about pain levels and said they were going to remove my dressings. One of them leaned over me crossed his arms so his right hand was on my right shoulder and his left on my left shoulder, Then there was the sound made by industrial strength Velcro makes when being torn apart rapidly–“Riiiiiiip” and he said, “You Ok?” I don’t remember my response because I lost consciousness again.

My next awakening was in Cardiac Intensive care. I think I was alone in my own cubicle. There was a nurse there and I was so thirsty my mouth felt like hot sandpaper. I asked for water. The nurse said, “You can have ice chips once an hour and she handed me a glass of them.

They lasted as long as they would had you poured them on a downtown Miami sidewalk at noon in the middle of August and I was still thirsty. More,” I said.

“No,” she said, “Not for another hour.”

I begged and pleaded to no avail. So I focused on the wall clock. “57 minutes to go.” It was the longest 57 minutes of my life, but right on schedule she was there with the small glass of ice chips. I was still parched and the chips gave only momentary relief, so I begged again, but failed to penetrate her compassion shield. I think I called her “an ice Nazi.” She didn’t laugh, but it didn’t sway her either. I don’t know how long that went on, but she never relented and I will always remember being the thirstiest I have ever been.

I do not recall how long I was in ICU, but I do remember being moved to my own private room. When I entered the hospital I was suffering from horrible heartburn and I was still bothered by it after surgery so I asked them to place me in the recliner chair in the room. They did and I settled in for the duration. They never cured the heartburn so I never got in bed. I’m probably one of the few transplant patients who spent all my time in the hospital room, some 9 days, without ever getting into bed. The housekeeping staff seemed to like that. One less bed to change.

My Mayo Transplant was done in St. Luke’s Hospital in Jacksonville, Florida while the Mayo hospital was being constructed. St. Luke’s was nice, with an incredible, wonderful staff, but it was old. In my room there were two chairs, one was the recliner in which I sat. I think it was built in 1915 in Tsarist Russia for use on the enemies of the “Mad Monk” Grigori Rasputin. You had to be a contortionist to adjust the recline angle of the chair and no one who has had their chest cavity carved open has that ability.

That chair was bad enough, but the other one was clearly meant as an alternative to water boarding. It was a straight backed heavy oak, ladder-back chair. It was designed to make people confess, not to be comfortable and it was what Robin had to sit on, day after day. I don’t know what happened to it since then, but I would bet it is indestructible, probably won’t even burn.

During my stay there, I was constantly wheeled to different tests including heart biopsies, more echograms, X-ray’s and other imaging, pulmonary exams and treatments and meds adjustments. I was weak, still had heartburn, was not eating very much and generally didn’t feel real good, but finally was sent home with instructions on how to recover there.

Post-transplant depression is quite common for a host of reasons, one in particular is guilt. It is not unusual for a transplant recipient to feel terrible because “someone had to die, in order that I could live.” That statement supposes that the organ recipient bears some responsibility for the death of the donor. When you consider it, the thought is unreal and illogical. While I understand that sentiment I respectfully disagree. Here’s my take on the issue. No one HAD to die and when they did, it was not so you could live. That person’s life had ended. They died sadly, because it was their time to go. Prior to that he or she voluntarily signed up to be an organ donor. Then, for whatever reason they died. When they did UNOS (The United Network for Organ Sharing) began a search to look for a match for the organs of the deceased person. You are a number on their list; they don’t have your name.

No one HAD to die so you could get a transplant, but someone did die and you were chosen to get the organ. It’s not as though your donor was called in to the central office and told, “Hey George, today is your turn, We need your heart, kidneys and pancreas. We’ll be putting you down at 3 PM so say your goodbyes.” It just doesn’t work that way. George, for whatever reason, lost his life that day and because he was a generous, compassionate person he had arranged for someone to get his organs upon his passing. Someone, anyone. It is a gift to whoever needs it most. Your donor made that decision, no one else. Be grateful, yes, but guilt has no place in the equation. you are not responsible for your donor’s death.

I seemed to be doing better at home until I awakened one morning with a terrible heaviness in my chest. Breathing was difficult and I was coughing. A call to my transplant coordinator resulted in being instructed to go to the Emergency Room right away. It wasn’t long after I arrived and was examined that I was informed that I had pneumonia and the pulmonologist said he was very worried about my lungs. After nine more days in the hospital and some heavy duty therapy I began to recover and was released. When I got home I retreated to the den in my favorite recliner, turned on the TV and sunk into terrible depression, a condition that didn’t end soon or easily.

 

Like all transplant patients I was not allowed to drive for a while so at least twice a week Robin had to drive me to Mayo for checkups and treatments. I went because I had to. There was no joy in any of it including the cardiac rehab program, which was well-run, but well beyond my ability to enjoy. This was my lowest point ever. I have since learned that post-transplant depression is very common and yes, I was treated for it, but it is the kind of illness that doesn’t respond immediately to treatment, so I stayed in that state for several months while we experimented with anti-depressants.

At the same time, I was stricken with incredible shoulder, neck, arm and wrist pain. I knew I had the beginnings of osteoarthritis, but I didn’t know it could be this painful. Additionally, I was told that when they perform a heart transplant your arms are placed over your head at a strange angle so the surgeon has complete access to the chest cavity. It is not unusual, I’m told, for some patients to suffer shoulder pain as a result. I was one of those patients. For weeks I suffered from pain so horrible I could not sleep or eat and while the Mayo docs made every effort to help, it took time to find the appropriate method of addressing it. They finally did, but that episode had me descend into even greater depths of depression.

Slowly, very slowly I regained my appetite, my mood brightened and the pain lifted, but it was almost a two year ordeal in which I went from 225 pounds to 150, a 75 pound loss due to having no interest in food and a stomach that wouldn’t keep much down. I think I lived on puddings, gelatins and soft fruits. The only thing that kept me going was a newfound interest called Social Media.

Robin was my salvation in all of this. She not only took care of me at home, but made sure I made all my medical  appointments, had the right meds and ran two businesses out of our home at the same time. She is steady as a rock, never panics and is always up-beat and encouraging. Being a caregiver is very hard work. She did it and to some degree still does it without complaint. I am a most fortunate man. I love her with a special intensity and am blessed that she feels the same about me. She is a fantastic woman.

In November of 2007, two months after my transplant I got a call from Lee Aase the social media guru for Mayo Clinic in Rochester, Minnesota. I knew Lee professionally and was flattered when he called to ask if I’d be interested in starting a Facebook group and a blog. I said, “Huh,” and “huh.” I had no idea what either were. Lee is a patient man and took the time to give me a crash course and that’s when today’s over 4,200 member Facebook group Organ transplant Initiative was founded along with Bob’s Newheart blogs. Lee came up with the Newheart name which I still think is mighty clever.

The miracle of the social media for me is that it gave me some new responsibilities, which I desperately needed. My nature is such that if I take on a task I don’t know how to give it anything but my very best. OTI and the Newheart blogs gave me a new reason to get up in the morning. Each day I had something new to do, blogs to write, topics to introduce on Facebook and something to keep my mind off of my miseries. Lee’s call may have saved my sanity.

The Facebook group grew rapidly and the members were incredibly supportive of one another and of me. Since I started blogging I have posted over 260 columns on topics around transplantation/donation and related issues, which is just about any medical story. While some of them were provided by guest bloggers I researched and wrote about 90 percent of them.

Robin is an artist and we sell her colorful anodized aluminum and polymer clay jewelry at art fairs around the east and Midwest and we travel to those shows with our two dogs in our RV to the tune of about 20,000 miles a year. We love the life, enjoy what we do and have no plans to quit anytime soon.

Her art business required furnishings for her tent and because I have always liked doing woodwork I began to build a shop and make shelving, pedestals, picture frames, tables and wooden jewelry boxes. I’m no expert woodworker, but it is a hobby I really enjoy and intend to keep doing it as long as I can. I am busier today than I was when I was working, but now I answer to no one but I and work only on things that give me great satisfaction.

I am convinced that the road to good health and happiness is made easier if you can stay busy doing things you love doing.

Readers – the only advice I can give you is this. Never give up, never. Be confident of a bright future because if you think otherwise you may be paving your own road to hell. Find something you really like doing, enjoy your new life, love your friends and loved ones with every ounce of your soul and as Spock said, “Live long and prosper.” You’re worth it and you deserve it!

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Why Prescriptions Cost So Much and What You Can Do About It

A couple of weeks ago the news was filled with stories about Martin Shkreli the CEO of Turing Pharmaceuticals, a relatively small drug manufacturer. Some media branded him with this headline because he raised the price for one pill of Daraprim, a 62 year old drug,
from $13.50 to $750. That’s about 5,000 percent. Now, he says he will lower the price, but there’s no indication of how much or, as of this writing, when (According to Web MD Daraprim is used with other medication (such as a sulfonamide) to treat a serious parasite infection (toxoplasmosis) of the body, brain, or eye or to prevent toxoplasmosis infection in people with HIV infection).

As it turns out, though, the “World’s Biggest A–Hole case is not in the least bit unusual, it happens with pharmaceutical companies with great regularity as a tactic to increase profits on older drugs, drugs that have long since paid for themselves.

The global market for pharmaceuticals topped $1 trillion in sales in 2014. The world’s 10 largest drug companies generated $429.4 billion of that revenue. Five of these companies are headquartered in the U.S. They are: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck and Eli Lilly.

Johnson and Johnson, America’s biggest pharmaceutical manufacturer raised prices on over 130 brand name products this year alone. Merck & Co. raised the price of 38 drugs. The increases in the U.S. have added over a billion dollars of revenue in the last three years. So, while Mr. Shkreli may get the award for being the biggest you know what, he is in good company — only the others were smart enough not to brag about it.

Before I go on it is important to point out that my interest in the topic is both personal and professional. I am a senior citizen, who has had a heart transplant and who also has Chronic Obstructive Pulmonary Disease (COPD). I take a good number of prescription drugs and despite having Medicare Part D insurance I still pay thousands of dollars a year for my prescriptions. Most of the drugs I take have been around for quite a while, but not long enough to allow the sale of generics and because there are few if any pricing restrictions, most of my meds are outrageously high priced.

One of the drugs I take is called Foradil. It was approved by the FDA in February 2001 for the maintenance treatment of asthma and the prevention of bronchospasm in reversible obstructive airways disease. Despite being on the market that long, it still retails for about $250.00 for a 30 day supply. Spiriva is another COPD drug and is often taken with Foradil. It retails for about $350.00. I take about a dozen drugs and these two alone total over $600.00 a month. Insurance cuts that cost in half, but they are still expensive. Because of these prices I know of many seniors and others who have to choose between eating and paying for their prescription meds.

In Europe, Asia, Australia and anywhere else with some form of socialized medicine strict government regulation helps prevent those kinds of actions and subsequently keeps prices down. Things are a whole lot looser in the U.S.

In 2013 each of us spent over $1,000 on prescription drugs. That works out to $429 billion. In case that figure boggles your mind, let me boggle it more by showing you what it looks like in black and white — $429,000,000,000. By anyone’s measure that’s a lot of money. To put it all in perspective Prescription medications make up close to 10 percent of the $2.9 trillion annual total spent on healthcare in the U.S.

Americans spend more on drugs than any other country in the world and – we also pay more for them than any other country.

Before we go into detail on why prescription drugs cost more here than anywhere else, let’s look at the biggest drug and biotech companies in the world. They account for more than a third of the industry’s total market share according to the World Health Organization. We won’t go into detail but here’s the top ten and their 2014 revenue.

• Gilead Sciences $24.474 billion.
• Bayer $25.47 billion.
• AstraZeneca $26.095 billion.
• GlaxoSmithKline $37.96 billion.
• Merck’$42.237 billion.
• Sanofi $43.07 billion.
• Pfizer 49.605 billion.
• Roche $49.86 billion.
• Johnson & Johnson $74.331 billion.

If you were to ask any of those companies why prescription drugs cost so much they would likely tell you that the price reflects the immense costs of research and development. They would explain that it costs millions and millions of dollars to develop a new drug and then millions more to get through animal and human studies and FDA approval, and that’s partially true. Partially. Those costs are very high, but what big pharma won’t tell you is that you are also paying for the costs of marketing the drug to physicians and patients and those costs dwarf the research and development expense. http://tinyurl.com/pr23j3q

The world’s largest pharma company, Johnson & Johnson, spent $17.5 billion on sales and marketing in 2013, compared with $8.2 billion for R&D. Most of that marketing effort is aimed directly at physicians, the people who write the prescriptions, rather than customers like you and me. It should be noted that the U.S. and New Zealand are the only two countries that allow any form of advertising for prescription drugs.

No sane person can object to a company making a profit, it’s part of the American way, but the drug industry’s profits are excessive. At the risk of being accused of repetitiveness I must say again. We pay significantly more than any other country for the exact same drugs. United States spends more than $1,000 per person per year on pharmaceuticals. Per capita drug spending in the U.S. is about 40 percent higher than Canada, 75 percent greater than in Japan and nearly triple the amount spent in Denmark. So why is that?

Well, first the U.S. is a very rich and therefore lucrative market because we use more medicine than any other developed country. We account for 35 percent of the world market for pharmaceuticals. Americans have become quite accustomed to leaving their doctor’s office with a handful of prescriptions.

Due to our ill health and our wealth, companies often choose the U.S. in which to launch new products. And, because the US market is so big and profitable, investments in research and development have long been steered towards meeting clinical needs.

But if we Americans take more prescription drugs, we also pay an arm and a leg more for them. Why? Because other countries have tough regulations about pharmaceutical prices and they set reimbursement limits. Another smart thing they do is to agree to pay for a drug only if the price is justified by the medical benefits. In the U.S., Medicare which is the world’s largest buyer of prescription drugs is prohibited from negotiating prices with drug companies. If the company says that a pill is $100, Medicare has no choice, but to pay it if the patient needs it. They have no wiggle room and that costs taxpayers billions of dollars a year in a direct giveaway to the pharmaceutical behemoths and speaks to the power of their lobbyists.

Speaking of lobbyists, here’s the real rub. The pharmacy industry views congress as a place to invest against future price controls and this is what really adds to the price of your prescriptions.

Big Pharma Spends More on Lobbying Than Anyone
Since 1998, the industry spent more than $5 billion on lobbying in Washington, according to the Center for Responsive Politics. To put that in context, that’s more than the $1.53 billion spent by the defense industry and more than the $1.3 billion forked out by Big Oil.

From 1998 to 2013, Big Pharma spent nearly $2.7 billion on lobbying expenses — more than any other industry and 42 percent more than the second highest paying industry: insurance. And since 1990, individuals, lobbyists and political action committees affiliated with the industry have doled out $150 million in campaign contributions.

Now here’s how it works for you and me. In the U.S. insurers only accept the price set by the drug makers. If the drug is exclusive, meaning there is no competing medication from other companies. Insurers then cover the total cost by forcing a higher co-pay on patients. Unlike Medicare, insurers have bargaining power when there are competing drugs and therefore can reduce the co-pays.

Then, there is the Generic drug market, those are drugs in which the patent has run out and other manufacturers are allowed to produce the product. As an example the antidepressant Remeron is also known by its generic name Mirtazapine. Remeron is the brand name given it by the original manufacturer, but Mirtazapine can be made and distributed by any pharma company and sold for a much lower price.

Competition in that area is fierce and generic drug prices are usually low. Today generics account for about 85 percent of drugs dispensed in the U.S.

Despite generics and their low prices, there are still many Americans who daily make the choice between food or drugs, between paying the rent and drugs or giving up some other type of health care in order to afford the drugs that keep them going. Many Americans don’t take their recommended prescriptions because they can’t afford them. One recent survey showed that about one in five U.S. adults did not fill their prescription or skipped doses due to cost as opposed to Australia and some other countries where the ratio is one in ten. http://tinyurl.com/pejvoyn

Some people have turned to foreign sources for their prescriptions and there are many with some of the more popular ones thriving in Canada. Here’s an example of the savings that can be had. If you want a three month supply of the popular asthma inhaler Advair it will likely cost you somewhere in the neighborhood of $600 to purchase it from one of your local pharmacies. If you select one of the Canadian pharmacies you can import the same three month supply of the same medication, Advair, for about $150, with shipping included. That amount may not mean much to the Donald Trump tax bracket, but to average Americans it’s a whole lot of money. Advair is just the tip of the iceberg. ABC news reports the following price comparisons:

• Mirapex, for Parkinson’s disease: $157 in Canada vs. $263 in the United States.
• Celexa, for depression: $149 in Canada vs. $253 in the United States.
• Diovan, for high blood pressure: $149 in Canada vs. $253 in the United States.
• Oxazepam, for insomnia: $13 in Canada vs. $70 in the United States.
• Seroquel, for insomnia: $33 in Canada vs. $124 in the United States.

Tufts University in Boston released a study in the year 2000 that placed the cost of approval for a single drug at $802 million, and that was fifteen years ago. To be fair it must be revealed that the dollar amount adds in each successful drug’s prorated share of failures (only one out of fifty drugs eventually reaches the market), but that still does not explain why the retail price is higher here than anywhere else.

The only logical explanation I can come up after some a fair amount of research is that pharmaceutical companies can get away with much higher prices in the U.S. and they can’t elsewhere. Period!

So what are your options, what can average patients who have difficulty affording some drugs do to stay healthy and be able to eat and pay their rent and other bills at the same time?

Well, there are several steps you can take. Among them are:

• Contact state and federal legislators and ask them to allow Medicare to negotiate the price of prescription drugs
• Also ask them to allow importing of essential drugs from foreign companies through approved pharmacies.
• Ask big pharma companies to see if you qualify for their reduced prices for people who have trouble affording them.
• Read the Consumers Report story on the issue. It will give you the information you need to identify trustworthy pharmacies. http://tinyurl.com/qbflucm

But, if you are like me you want even more detail. Ok. Here’s the best I can do.

You can shop for the best price and because of the internet that’s become a whole lot easier. You can look up a specific drug and find the best price at a pharmacy near you. Here are two resources. I’m sure you can find a lot more https://www.lowestmed.com/Search#/  orhttp://www.goodrx.com/ All you have to do is type in the drug you need and your zip code and it will find the price of that drug in pharmacies near you.

Transplant recipients might be interested in the cost of anti-rejection drugs. The price is hard to stomach but easy to find. In my zip code 32244 100 Mg Cyclosporine capsules range in price from $526.00 at Wall Mart to $584 at Target. If you are a heart patient and take Carvedilol in my neighborhood it ranges from $4.00 at Wal Mart to $9.54 at Kmart. Lisinopril also has a wide range. At the Publix Supermarket pharmacy near me it is FREE…that’s right FREE.  But at CVS it is $12.00.  Those price variations might make it worth a little longer drive to get a better bargain.

You can also get help with coupons which are an obvious choice to savemoney when grocery or clothes shopping, but they’re often overlooked as a way to cut costs of over-the-counter and prescription drugs. Manufactures frequently offer one time and repeat coupons that can save consumers hundreds of dollars on their medicines. “For our family it has been incredibly effective [in saving money] for a number of regular prescriptions,” says Stephanie Nelson, founder of the coupon website CouponMom.com.

The costs of prescription drugs and over-the-counter medications have been steadily rising and patients facing tight budgets are often forced to make hard decisions when it comes to what they can afford.

The savings vary by manufacturer, but many companies offer discounts at each prescription refill while others offer discount cards that take $20 off co-pays. Others offer one-time coupons to cover the first use of a drug.

• Consumer Reports Magazine says that there are other ways to save money, too. Whichever drugstore or pharmacy you use, choosing generics over brand-name drugs will save you money. Talk to your doctor, who may be able to prescribe lower-cost alternatives in the same class of drug. In addition, follow these CR tips.
• Request the lowest price. Our analysis showed that shoppers didn’t always receive the lowest
  available price when they called the pharmacy. Sometimes they were given a discounted price, and other times they were quoted the list price. Be sure to explain—whether you have insurance or not—that you want the lowest possible price. Our shoppers found that student and senior discounts may also apply, but again, you have to ask.
• Leave the city. Grocery-store pharmacies and independent drugstores sometimes charge higher prices in urban areas than in rural areas. For example, our shoppers found that for a 30-day supply of generic Actos, an independent pharmacy in the city of Raleigh, N.C., charged $203. A store in a rural area of the state sold it for $37.
• Get a refill for 90 days, not 30 days. Most pharmacies offer discounts on a three-month supply.
• Consider paying retail. At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
• Look for additional discounts. All chain and big-box drugstores offer discount generic-drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply. Other programs require you to join to get the discount. (Restrictions apply and certain programs charge annual fees.)
• Experts say that although the low costs could entice you to get your prescriptions filled at multiple pharmacies, research indicates that it’s best to use a single pharmacy. That keeps all of the drugs you take in one system, which can help you avoid dangerous drug interactions.”

Finally, what do you do if you’ve done the shopping, used coupons, followed all of the Consumer Report Tips and are still unable to pay for your prescriptions? Well, there is some limited assistance. Here are some resources.

• http://www.medicare.gov/pharmaceutical-assistance-program/
• http://www2.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm
• http://healthfinder.gov/rxdrug

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love. You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Our Hospitals are Killing us, But Where’s the Outrage?

By Bob Aronson

This blog is dedicated to friends Kerry and Marsh Wick. Marsh, who underwent surgery in a local hospital, contracted an infection while there and died a while back. His wife Kerry, who was constantly at his side hopes that a more informed public will lead to fewer such cases.

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Most of us still believe that hospitals are places that help the sick and dying get well. But are they? If you look at the most recent patient safety data one can’t help but arrive at the conclusion that there are safer places to be than hospitals. Here are some sobering facts.

Preventable medical errors are the No. 3 killer in the U.S. – following only heart disease and cancer – and claiming 400,000 lives a year.

 

400,000 people die each year in American hospitals due to preventable errors. Preventable errors — but there is no public outrage, it doesn’t lead the news each night and no politician is using that issue to get elected.

Ok, If that number doesn’t shock you, let’s put it in terms that will. The Airbus A380 is a double-deck, wide-body, four-engine jet airliner and is the world’s largest providing seating for 525 people in a typical three-class configuration. In order to kill 400,000 passengers a year, 761 of these monstrous jets would have to crash every year…761, that’s over two a day. There aren’t that many A380s in the world. Probably never will be.

So if planes were falling out of the sky at that rate, would there be congressional investigations, demonstrations in the streets, charges of criminal misconduct and airlines going out of business faster than you can say your own name. Pilots, co-pilots, airline executives, airline mechanics, air traffic controllers and even airport managers would be going to jail, but because that same number of people die due to errors in hospitals there is virtually no public outrage. Maybe old Uncle Joe Stalin who killed millions of his own people had it right when he said, “One death is a tragedy; a million is a statistic.”

If this was happening to airplanes it would be a lead story on every newscast and in every newspaper every day. So don’t you think just a little outrage is in order? 1,000 of our friends and neighbors die every day from preventable yes, preventable causes. But, if the cost of human life doesn’t get your attention, how about this. Preventable medical errors cost you and me over one trillion dollars a year. Yes, that’s trillion with a T, a thousand billion.

Killing patients at the rate of 400,000 a year has caused preventable medical errors to become the third leading cause of death in the United States, right behind heart disease and cancer.

So you likely are asking yourself, “Just exactly what is a medical error?” Well, there are thousands of them. I’ll give you just a few and you’ll soon realize that if you can imagine it, it likely has happened.

• Treating the Wrong Patient. If your identity gets mixed up with someone else’s, you can get the wrong medications or even the wrong surgery.
• Surgical Souvenirs. Surgical tools or other objects are left inside people after surgery far more often than you’d like to think.
• Air Bubbles in Blood. If the hole in your chest isn’t sealed correctly (airtight) after a chest tube is removed, air bubbles can enter the wound and cut off blood supply to your lungs, heart, kidneys and brain — a life-threatening event.
• Operating on the Wrong Body Part. It can happen if a surgeon misreads your chart, or if the chart is incorrect.
• Infection Infestation. Hospital-acquired infections (HAIs) are alarmingly common. Many people are admitted infection free, but partially because of antibiotic resistant bugs and partly because of sheer carelessness many of them acquire several infections and far too many die as a result.

Ok…you got the idea. Pretty gruesome, huh?   So let’s talk about infections, the point of this blog.

I am the retired founder of the over 4,000 member Facebook support group, Organ Transplant Initiative. Recently during a discussion of HAIs, one of our members posted this horror story, unlike so many others he lived to tell it.

“Back at the time of my rapidly progressing illness and eventual transplants I went into the hospital with ONE infection acquired from contaminated soil it’s believed. After being in a local hospital for over a month I had no less than 15 other bacterial and fungal infections. Some acquired while being operated on. That particular hospital was cited for their infection issues too. One of the things uncovered was they were using mesh for hernia type repairs and then autoclaving the unused portion and repackaging it. That is absolutely forbidden.”

 

The September 2015 edition of Consumers Reports Magazine includes a major report on HAIs. This is a story everyone ought to read and soon. I will report some of my personal research findings later but CR did such a good job of framing the issue, I’ve included the first couple of paragraphs here.

The Rise of Superbugs

“In the ongoing war of humans vs. disease-causing bacteria, the bugs are gaining the upper hand. Deadly and unrelenting, they’re becoming more and more difficult to kill. You might think of hospitals as sterile safety zones in that battle. But in truth, they are ground zero for the invasion.

Though infections are just one measure of a hospital’s safety record, they’re an important one. Every year about 700,000 people in the U.S. develop infections during a hospital stay, and about 75,000 die with them, according to the Centers for Disease Control and Prevention (CDC). That’s more than twice the number of people who die each year in car crashes. And many of those illnesses and deaths can be traced back to the use of antibiotics, the very drugs that are supposed to fight the infections.”

What’s shocking is that the harm caused by these infections is mostly preventable. The CDC (Centers for Disease Control and Prevention) in Atlanta, Georgia says healthcare facility surveys indicate a grave situation that is getting worse (HAI)prevalence survey).  Based on a large sample of U.S. acute care hospitals, the survey found that on any given day, about 1 in 25 hospital patients has at least one healthcare-associated infection. There were an estimated 722,000 HAIs in U.S acute care hospitals in 2011. About 75,000 hospital patients with HAIs died during their hospitalizations. More than half of all HAIs occurred outside of the intensive care unit.

This is the official U.S. Government estimate of infections occurring in Acute Care Hospitals in the United States.

Pneumonia 157,500
Gastrointestinal Illness 123,100
Urinary Tract Infections 93,300
Primary Bloodstream Infections 71,900
Surgical site infections from any inpatient surgery157,500
Other types of infections 118,500
Estimated total number of infections in hospitals 721,800
To read the full report, please visit: CDC HAI Prevalence Survey
Magill SS, Edwards JR, Bamberg W, et al. Multistate Point-Prevalence Survey of Health Care–Associated Infections.  N Engl J Med 2014;370:1198-208.

• And here is some other startling information. Did you know you are at risk even while in the shower? Studies indicate that moisture-loving bacteria living in showerheads include huge populations of potential pathogens and, they can be quite different from their relatives who live on shower curtains just a few feet away.
• A common misconception is that germs have very short life spans, but that’s simply not true. Drug-resistant staph germs can live for up to a week on some common furniture fabrics. Strep germs can survive for months on a dry surface. You simply cannot overdo cleaning or washing your hands. Who knows whose life you might save by doing so…it could be yours or someone very dear to you.

Raw numbers are cold and impersonal, the human side of the equation is anything but. Here are but a few real experiences that were posted on Facebook’s Organ Transplant Initiative support group

• On my Father’s death certificate, it actually says “Health Care Aquired pneumonia”.I asked my doc what that’s all about (Dad died from complications from cancer) He said that more and more these days, they are putting that on death certificates because they are required to by law.

I got C-DIFF (Clostridium difficile colitis is an infection of the colon) and I’m in good health, one year ago this month I was in hospital for 10 days- in the ICU for 3. They couldn’t figure it out- infectious disease came in every day- it’s scary out there!!!

***Editor’s note. The law requires healthcare facilities to report hospital or healthcare acquired infections (HAI) and to include them on the death certificate if, in fact, they caused the death. The doctor’s explanation that they are required to do that is fudging the facts. They are only required to do that if an HAI actually was the cause of death. No healthcare facility likes talking about a problem that may be one of their own making, so downplaying it as a government requirement removes them of complicity.

• My husband was so deconditioned by the time he was able to be released post-transplant, that he had to go to an LTAC (Long Term Acute Care Hospital…aka as “hell”) At one point I told the person who called herself a nurse that he had managed to live, contrary to everyone’s expectations, and survive a liver transplant, and now “they” were going to kill him through neglect). Sadly, this is one of the circumstances that very ill transplant patients face. My only advice is be very vigilant. Take notes. Take pictures. Ask questions. Keep a journal. But for the attention of the ONE full-time physician and the contracted therapy staff, I’m really not sure he would have survived there.

Here are some examples of preventable contagion.

• A cleaning person enters your hospital room, puts on gloves and empties the trash. The trash could include old dressings contaminated with various bodily fluids and other infectious material. Then without changing gloves starts a new box of facial tissue and opens rolls of toilet paper and paper towels. That worker has just used the same gloves on everything he/she touched  — and those items will then be used on your face and other sensitive areas.

• Also, consider this. How many times have you seen a urinal sitting on the bedside table that swings over the bed? That table is where they place your food.

• As these infections become more common it is incumbent on all of us to be more aggressive in demanding better infection control procedures. When you see an infraction, report it to the offending person’s supervisor. Hospital workers must follow strict hand washing procedures, change gloves often, clean flat surfaces more than once a day and NEVER allow urinals to come in contact with any other human especially those who are untrained and unprotected. As for patients, we had better use every precaution we can and the best of all of them is frequent hand washing.

Hospital Acquired Infections are a very real and constant threat, but prevention efforts appear to be paying off. The numbers aren’t big yet, but it should come as a relief to many that they are headed downward. By clicking on the following link you can get a detailed summary of the progress being made in the fight against HAIs.

HAI Progress Report

The CDC National and State Healthcare-Associated Infections Progress Report is a report that gives a closer look at the healthcare-associated infections (HAIs) most commonly reported to CDC using the National Healthcare Safety Network (NHSN). This is an annual report that describes national and state infection prevention progress.

The current report is based on 2013 data. On the national level, the report includes these highlights.

• A 46 percent decrease in CLABS (Central Line Associated Bloodstream Infections)between 2008 and 2013

A 19 percent decrease in SSIs related to the 10 select procedures tracked in the report between 2008 and 2013 (An SSI is an infection that happens after surgery affecting the part of the body where the surgery was performed. Some SSIs are superficial skin infections, while others are more serious and involve tissue under the skin or organs)

• A 6 percent increase in CAUTI between 2009 and 2013; although initial data from 2014 seem to indicate that these infections have started to decrease (CAUTI = Cather Associated Urinary Tract Infections).

• An 8 percent decrease in hospital-onset MRSA bacteremia between 2011 and 2013 (Methicillin-Resistant Staphylococcus Aurens)

• A 10 percent decrease in hospital-onset C. Diff infections between 2011 and 2013

While blogs like this can shine a spotlight on certain problems, we cannot even begin to give you all the information you need so you can decide which hospital is best for you. All we can do is offer you information that will lead you to the information you seek.

There are several organizations that gather information on Patient Safety for nearly every hospital in America. Some, like Consumer Reports require you to subscribe before giving you access. Others offer you access to a point and then place conditions on further cooperation on their part. If you Google “Compare hospital patient safety records” you’ll get plenty of hits to explore. A warning; The process can be time consuming, confusing, frustrating and may even result in inaccurate information.  You may even have to do some studying in order to understand the information you find.

I did much of what I suggested to you. It took many hours and I cannot guarantee accuracy. I tried hard to achieve that goal but when there are as many disparate sources of information as there are on this particular topic it all boils down to an educated crap shoot.

One of the best resources I found for comparing hospital patient safety records is this one.  http://tinyurl.com/q3gytkz but if you find it inadequate and not meeting your needs, then look around, there are plenty of other resources.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

 

Post Transplant Depression, It’s Common and There’s Help!

By Bob Aronson

Having suffered from post transplant depression myself, I know of what I speak.  It hits you like a sledge hammer and keeps pounding away.  The pain isn’t physical, it’s emotional and it can be intense, so intense that some consider taking their own lives. Worst of all, few if any of your family and friends understand and some become impatoemt. dsksdddddddddddddlkkkkkkkkkkkkkksddddddddddddddddddddddddddddddddddddddddddddddddddlddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddccsssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssjnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnnssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss with your continued mood swings. They don’t even have the most basic understanding of the disease. While their intentions are good, their advice usually isn’t. They will say things like, “Buck up, My God your’re alive, you got a new heart and you’re alive.” To that I can only say, “I would be happy to buck up if I could, but I can’t. Noone would choose to live like this You can feel useless, unnecessary, irrelevant and totally without purpose.  Some patients even feel suicidal, but it doesn’t have to be that way.  There is help.

If there’s one  message you should take away from this blog, it is this.  Depression is not your fault, you did not cause it and therefore you alone can not fix it. “Cheer up, look at the bright side,” may sound like good advice but it isn’t because it assumes you decided to feel lousy.  Who on earth would choose to be depressed?  It is sad, but true that sometimes even the people closest to you don’t understand.  They continue to hold on to the belief that you can snap out of it if you really want to.  The reality of depression just isn’t that simple.  Frankly, it is very, very complex and takes highly skilled and trained professionals to help you find your way back to the sunny side of the street.

Unfortunately if you have had or if you are going to have an organ transplant, chances are good that you might fall victim to post transplant depression. Estimates of how many patients become depressed following an organ transplant range from 10 percent all the way up to 50%, but no matter what the percentage the fact is that some people will have serious emotional struggles following their transplant.

One can easily ask, “Depression? Why on earth would anyone be depressed after their life has been saved by the donor/transplantation process?”  Well, there are a number of reasons, chief among them is the haunting feeling that someone had to die in order for you to live.  The fact is, the person who died, would have died anyway whether they were an organ donor or not and if they were, someone might gain new life as a result, but that’s logic and logic alone cannot solve the problem and help the patient. Besides, there are other issues that contribute to depression like:

• Living with the psychological highs and lows that are sometimes caused by immunosuppressives such as corticosteroids
• The steroids you take can have the effect of a mood amplifier. In the first few weeks, especially, when the doses are highest, the medicine will wind you up and make it hard to sleep. The sudden changes in the family — and in your behavior — can be extreme.
• Managing a complex post-transplant regimen that encompasses: (1) multiple meds and schedules, (2) monitoring vital signs, (3) exercise and dietary requirements, (4) regular medical evaluations and lab tests, and (5) lifestyle restrictions on smoking, alcohol, and other potentially harmful substances
• Major life alterations such as transitioning from being critically ill or dying patients and family caregivers to roles that are more wellness-focused)
• Coping with new and taxing financial and economic issues like the cost of transplant surgery, hospital stays, follow-up care, cost of drugs and health insurance.

To some that list of changes is so overwhelming as to be nearly impossible to manage.  Some have been seriously ill for such a very long time and so focused on dying that they cannot adjust to an attitude that centers on life and living.   What is even worse is that unless the patient is getting professional psychiatric help he or she may not be able to identify a single stressor that brought on their depressed state.

What is Depression?

Simply put, depression is a mood disorder that causes a persistent feeling of sadness and loss of interest in those things that had been of great importance.  It affects how you feel, think and behave and can lead to a variety of problems. Day to day activities become ponderous and boring and patients sometimes feel their lives are not worth living.

Depression isn’t just feeling “down” and you can’t just “snap out of it.” It can require long-term treatment with either medication, psychological counseling or a combination of the two. Above all you must know that suffering from depression is not a personal weakness.  You didn’t bring it on and will power alone cannot defeat it.

Depression can occur once or several times in a lifetime and according to the Mayo Clinic (http://tinyurl.com/ouory9u) the symptoms can appear all day, every day and may include:

• Feelings of sadness, tearfulness, emptiness or hopelessness
• Angry outbursts, irritability or frustration, even over small matters
• Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
• Sleep disturbances, including insomnia or sleeping too much
• Tiredness and lack of energy, so even small tasks take extra effort
• Changes in appetite — often reduced appetite and weight loss, but increased cravings for food and weight gain in some people
• Anxiety, agitation or restlessness
• Slowed thinking, speaking or body movements
• Feelings of worthlessness or guilt, fixating on past failures or blaming yourself for things that aren’t your responsibility
• Trouble thinking, concentrating, making decisions and remembering things
• Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
• Unexplained physical problems, such as back pain or headaches

For many people with depression, symptoms usually are severe enough to cause noticeable problems in day-to-day activities, such as work, school, social activities or relationships with others. Other people may feel generally miserable or unhappy without really knowing why. http://tinyurl.com/lgsq8hm

Health Concerns

(Material gathered here comes from several sources primary among them is UNOS (the United Network for Organ Sharing).

What happens after transplantation depends on the organ transplanted and the recipient’s specific medical situation. Most patients recover fully, return to work and resume a normal, active life after receiving a new organ. However, there is a possibility of developing unrelated health problems after transplantation. That’s why it is important to work closely with your doctor concerning your overall wellness, as well as regarding the following health concerns:

Anxiety and Depression

Patients and their families face a new lifestyle after transplantation that may cause them to feel nervous, stressed or depressed. Because emotional and psychological support is a continuing process, ask your social worker about counseling services that can help you and your family deal with these changes. Professionals can help you work through concerns about your self-image; mood swings; job planning; rehabilitation; family stresses, such as parent-child conflicts, marital conflict or changes in sexual functioning; and financial concerns, such as questions about Medicare, disability or insurance.  Any and all of the following can contribute to your depression and/or anxiety.

Diabetes

Some anti-rejection medicines are known to cause high blood sugar. Although it is typically a temporary condition after transplantation, it is more common in patients who have a family history of diabetes and patients who are overweight. It can be controlled by reducing the dose of a patient’s anti-rejection medicines or changing medications all together.

GI Upset

GI (gastrointestinal) or stomach upset is also a common complaint after a transplant. Patients on steroid therapy may be at an increased risk of developing ulcers due to increased hydrochloric acid from the stress of the procedure. Treatment of GI upset may include one or a combination of drugs that reduce acid production. In addition, people with GI upset should take several steps to reduce symptoms, including:

• Reducing the intake of caffeine, alcohol and over-the-counter medications that cause GI upset.
• Eliminating carbonated drinks can help
• And it sometimes helps to take your meds with food to decrease irritation.

Gout

Gout is a painful and potentially disabling form of arthritis. Diagnosing gout can be difficult and treatment plans vary based on a patient’s existing medical problems and medications.  Often Gout will show up in the big toe and it is very painful.  Sometimes even a bedsheet touching the Gout area will result in extreme pain.

High Cholesterol

Many immunosuppressant drugs can contribute to high cholesterol. This condition therefore affects many transplant recipients. When a patient develops high cholesterol, blood vessels, including the ones attached to the transplanted organ, become clogged, which affects the flow of blood. This slowing of blood flow can affect the success of your transplant and may even lead to heart disease. It is important to talk to your doctor about how to reduce the risk factors of heart disease, including controlling your cholesterol.

Hypertension

Hypertension, or high blood pressure, is common immediately after
transplant. Certain anti-rejection medications, as well as the original disease, all can contribute to hypertension. Treatment of hypertension may include one or a combination of drugs, and often, as anti-rejection medicines are tapered to a maintenance dose, hypertension may decrease. Talk to your doctor about what’s right for you and how to avoid high blood pressure.

Sexual Relations

Sexual concerns after transplantation are commonly experienced, yet seldom discussed or addressed during evaluation. It is therefore very important to talk with your doctor about your sexual history and concerns.

However, sexual function and interest can be related to how well your body has accepted your new organ and how realistic your expectations were for life after your transplant. A counselor can also help a couple understand the difference between pre- and post-transplant problems. Often, support groups can be very helpful in this regard.

Additionally, in sexual relations, as in all issues, recipients must remember that they are immune suppressed and subject to many kinds of infections. In fact, some infections in recently transplanted patients can be potentially life threatening. Consequently, it is important to consider the following points:

• The sharing of saliva during kissing can expose both partners to active diseases, such as colds or other viruses.
• Condoms don’t prevent diseases that are spread by contact between the area surrounding the penis and external genitals.
• The risk of contracting infectious diseases though oral sex is possible, especially if ejaculation occurs or if there are any sores or wounds on either partner.

Shingles

People with weakened immune systems, such as transplant recipients treated with immunosuppressive drugs, risk developing shingles. Shingles is a painful infection of the central nervous system caused by the Varicella virus that causes a blistering rash and severe burning pain, tingling or extreme sensitivity to the skin and is usually limited to one side of the body. The severity and duration of an attack of shingles can be significantly reduced by immediate treatment with antiviral drugs.  You should also ask your doctor about getting the Shingles vaccine.

Sometimes our own irresponsible behavior is responsible for feelings of depression or inadequacy.  It has been established that noncompliance appears to be relatively common during the first several years after transplantation. That means some patients just don’t take the right amount of medication at the right time, if they take it at all. Furthermore, compliance in most areas of the medical regimen worsens over the first year after the transplant just as it does for most patients who begin new medical therapies.  For example:

• Up to 20% of heart transplant recipients and 50% of kidney transplant recipients have been found to be noncompliant with prescribed immunosuppressant medications during a given 12-month period in the early post-transplant years
• 5% to 26% of heart transplant recipients smoke at least once after being transplanted; no study has determined what proportion of these patients become regular smokers.
• 11% to 48% of liver transplant recipients return to some level of alcohol consumption during the first year post-transplantation.

As a result of noncompliance patients are likely to experience rejection symptoms or actual rejection and, of course when this happens patients experience anxiety and/or depression.   http://tinyurl.com/qjlc48n Treatment options

Researchers at Henry Ford Hospital have found that emotional closeness between transplant patients and their caregivers helps reduce depression and anxiety after surgery.  While this study was about liver transplant patients, it is likely that the conclusions probably have universal application.

“People with close networks and good support recover faster after liver transplant and have less depression and anxiety at six months after transplant,” says Anne Eshelman, Ph.D., Henry Ford Health System Behavioral Health Services, lead author of the study.

“These findings suggest caregiving relationships as a target for psycho-therapeutic intervention among patients with end-stage liver disease.”

Study results were presented at the International Congress of Behavioral Medicine in Washington D.C., held by the International Society of Behavioral Medicine and the Society of Behavioral Medicine.

The study looked at 74 liver transplant surgery candidates and their primary caregivers. Transplant patients were surveyed before surgery and at a six-month follow-up. Caregivers rated the degree of closeness they felt in their relationship to the patient.

The sample was divided into groups with caregivers reporting maximum closeness or less closeness.

For patients with end-stage liver disease, depression and anxiety improve after liver transplant, but the study found that these changes are not as great for individuals with emotionally distant caregiving relationships.

“If you live with someone who loves you, the quality of care they provide may be much better, they may be more encouraging, you may want to please them and recuperate faster so you can spend quality time with them,” says Dr. Eshelman.  “Caregivers who are not close, may provide the basic requirements, but don’t help give someone a reason to live and look to the future.”

The study results also suggested that emotional closeness was critical for affective improvement in men, but less so for women, though interpretation is limited by a small sample size, explained Dr. Eshelman.

“Men who had adequate number of support people, but did not have close support, were still depressed and anxious at follow up, compared to those who had closer support,” says Dr. Eshelman. “Other literature shows that women have wider support, more friends and family they are connected to than men, and if the primary support person is not that close, they probably rely on the other people such as girlfriends.”
The study was funded by Henry Ford Transplant Institute. http://tinyurl.com/q4bwqzs

Treatments for Depression

From Web MD

If you are diagnosed with depression, here’s some good news: Excellent treatment options are available to you.

Many people use a combination of treatments, such as medication and psychotherapy. For depression that doesn’t respond to standard treatment, non-drug approaches can be effective, either alone or used with other treatments.

Learn more here about the most common approaches to treating depression.

Talk Therapy for Depression

Talking with a trained therapist is one of the best treatments. Some people choose to be in therapy for several months to work on a few key issues. Other people find it helpful to continue in therapy for years, gradually working through larger problems. The choice is up to you and your therapist. Here are some common types of therapy:

• Cognitive behavioral therapyhelps you see how behaviors and the way you think about things plays a role in your depression. Your therapist will help you change some of these unhealthy patterns.
• Interpersonal therapyfocuses on your relationships with other people and how they affect you. Your therapist will also help you pinpoint and change unhealthy habits.
• Problem-solving therapyfocuses on the specific problems you face and helps you find solutions.

Medicines for Depression

Medicines are the other key treatment for depression. If one antidepressant doesn’t work well, you might try a similar one or a different kind. Your doctor might also try changing the dose. In some cases, he or she might recommend taking more than one medication for your depression. There are now many different antidepressants that your doctor can choose from. The entire listing can be seen here: http://tinyurl.com/p4yaq4b

Just keep in mind that recovery is a process that may need constant adjustment and takes time.

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Thank you donors and donor families

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes. Then, when registered, tell your family about your decision so there is no confusion when the time comes.

What You Need To Know About Your Liver and The Transplant Process

By Bob Aronson

The liver is an incredibly important organ and the only one in the human body that can regenerate itself.  It is second only in size to the skin (yes the skin is an organ) and has been described as boomerang shaped.  Virtually every nutrient we consume passes through the liver so it can be processed and turned into a different biochemical form for use by other organs.

Located just below the rib cage in the upper right side of your abdomen the liver has three main functions.  It helps in digestion makes proteins and helps eliminate toxic substances.

The liver is the only organ in the body that can easily replace damaged cells, but if enough cells are lost, the liver may not be able to meet the needs of the body.

The liver is like a very complex factory.  Included in its many functions are:          http://www.medicinenet.com/liver_anatomy_and_function/images-quizzes/index.htm

• Production of bile that is required in the digestion of food, in particular fats;
• Storing of the extra glucose or sugar as glycogen, and then converting it back into glucose when the body needs it for energy;
• Production of blood clotting factors;
• Production of amino acids (the building blocks for making proteins), including those used to help fight infection;
• The processing and storage of iron necessary for red blood cell production;
• Manufacture of cholesterol and other chemicals required for fat transport;
• Conversion of waste products of body metabolism into urea that is excreted in the urine; and
• Metabolizing medications into their active ingredient in the body.
• Cirrhosis is a term that describes permanent scarring of the liver. In cirrhosis, the normal liver cells are replaced by scar tissue that cannot perform any liver function.
• Acute liver failure may or may not be reversible, meaning that on occasion, there is a treatable cause and the liver may be able to recover and resume its normal functions.

The Liver can be affected by any one of a number of diseases.  Click on the item of interest in the list below for a complete explanation.

The Liver Disease Information Center provides information on a variety of topics related to liver health and

liver disease. http://www.liverfoundation.org/abouttheliver/info/

• Alagille Syndrome
• Alcohol-Related Liver Disease
• Alpha-1 Antitrypsin Deficiency
• Autoimmune Hepatitis
• Benign Liver Tumors
• Biliary Atresia
• Cirrhosis
• Clinical Trials
• Galactosemia
• Gilbert Syndrome
• Hemochromatosis
• Hepatitis A
• Hepatitis B
• Hepatitis C
• Hepatocellular Carcinoma
• Hepatic Encephalopathy
• Liver Biopsy
• Liver Cysts
• Liver Cancer
• Liver Function Tests
• Liver Transplant
• Newborn Jaundice
• Non-Alcoholic Fatty Liver Disease
  • Nick Giordano’s Story
• Primary Biliary Cirrhosis (PBC)
• Primary Sclerosing Cholangitis (PSC)
• The Progression of Liver Disease
• Reye Syndrome
• Type I Glycogen Storage Disease
• Wilson Disease
• Intrahepatic Cholestasis of Pregnancy (ICP)

How does alcohol affect the liver? (From the American Liver Foundation)  http://www.liverfoundation.org/abouttheliver/info/alcohol/

Alcohol can damage or destroy liver cells.

The liver breaks down alcohol so it can be removed from your body. Your liver can become injured or seriously damaged if you drink more alcohol than it can process.

What are the different types of alcohol-related liver disease?

There are three main types of alcohol-related liver disease: alcoholic fatty liver disease, alcoholic hepatitis, and alcoholic cirrhosis.

Alcoholic fatty liver disease
Alcoholic fatty liver disease results from the deposition of fat in liver cells. It is the earliest stage of alcohol-related liver disease. There are usually no symptoms. If symptoms do occur, they may include fatigue, weakness, and discomfort localized to the right upper abdomen. Liver enzymes may be elevated, however tests of liver function are often normal. Many heavy drinkers have fatty liver disease. Alcoholic fatty liver disease may be reversible with abstinence of alcohol.

Alcoholic hepatitis
Alcoholic hepatitis is characterized by fat deposition in liver cells, inflammation and mild scarring of the liver. Symptoms may include loss of appetite, nausea, vomiting, abdominal pain, fever and jaundice. Liver enzymes are elevated and tests of liver function may be abnormal. Up to 35 percent of heavy drinkers develop alcoholic hepatitis and of these 55% already have cirrhosis.

Alcoholic hepatitis can be mild or severe. Mild alcoholic hepatitis may be reversed with abstinence. Severe alcoholic hepatitis may occur suddenly and lead to serious complications including liver failure and death.

Alcoholic cirrhosis
Alcoholic cirrhosis, the most advanced type of alcohol induced liver injury is characterized by severe scarring and disruption of the normal structure of the liver — hard scar tissue replaces soft healthy tissue. Between 10 and 20 percent of heavy drinkers develop cirrhosis. Symptoms of cirrhosis may be similar to those of severe alcoholic hepatitis. Cirrhosis is the most advanced type of alcohol-related liver disease and is not reversed with abstinence. However, abstinence may improve the symptoms and signs of liver disease and prevent further damage

The Liver Transplant

Liver transplants are performed only for patients with end-stage liver disease for whom standard medical and surgical therapies have failed. Conditions that can lead to liver transplantation include: (http://www.barnesjewish.org/conditions-leading-to-liver-transplant)

• Cirrhosis: cryptogenic, alcoholic, autoimmune, hepatitis B, hepatitis C, fatty liver disease (NASH)
• Hepatocellular carcinoma (liver cancer)
• Primary sclerosing cholangitis (disease of the liver bile ducts)
• Primary biliary cirrhosis (PBC – bile ducts in the liver slowly deteriorate)
• Alpha-1-antitrypsin deficiency (genetic disorder leading to abnormal amounts of A1AT protein in liver cells)
• Acute liver failure
• Cholangiocarcinoma (bile duct cancer)
• Wilson’s disease

Liver transplants are the second most common transplants after kidneys.  They require that the blood type and body size of the donor match the person receiving the new organ. There are more  6,000 liver transplants are performed each year in the United States. The surgery usually takes between four and twelve hours and most patients can expect a hospital stay of up to three weeks following surgery. . .

Essential Information For The Transplant Patient

Most transplant centers function in pretty much the same manner, but Johns Hopkins Medical Center in Baltimore, Maryland offers one of the best summaries of what the transplant patient can expect.  http://www.hopkinsmedicine.org/healthlibrary/test_procedures/gastroenterology/liver_transplantation_procedure_92,P07698/

Risks of the procedure

As with any surgery, complications can occur. Some complications from liver transplantation may include, but are not limited to, the following:

• Bleeding
• Infection
• Blockage of the blood vessels to the new liver
• Leakage of bile or blockage of bile ducts
• Initial lack of function of new liver

The new liver may not function for a brief time after the transplant. The new liver may also be rejected. Rejection is a normal reaction of the body to a foreign object or tissue. When a new liver is transplanted into a recipient’s body, the immune system reacts to what it perceives as a threat and attacks the new organ, not realizing that the transplanted liver is beneficial. To allow the organ to survive in a new body, medications must be taken to trick the immune system into accepting the transplant and not attacking it as a foreign object.

Contraindications for liver transplantation include, but are not limited to, the following:

• Current or recurring infection that cannot be treated effectively
• Metastatic cancer. This is cancer that has spread from its primary location to one or more additional locations in the body.
• Severe cardiac or other medical problems preventing the ability to tolerate the surgical procedure
• Serious conditions other than liver disease that would not improve after transplantation
• Noncompliance with treatment regimen
• Alcohol consumption

There may be other risks depending on your specific medical condition. Be sure to discuss any concerns with your doctor prior to the procedure.

Before the procedure

In order to receive a liver from an organ donor who has died (cadaver), a recipient must be placed on a waiting list of the United Network for Organ Sharing (UNOS). Extensive testing must be done before an individual can be placed on the transplant list.

Because of the wide range of information necessary to determine eligibility for transplant, the evaluation process is carried out by a transplant team. The team includes a transplant surgeon, a transplant hepatologist (doctor specializing in the treatment of the liver), one or more transplant nurses, a social worker, and a psychiatrist or psychologist. Additional team members may include a dietitian, a chaplain, and/or an anesthesiologist.

Components of the transplant evaluation process include, but are not limited to, the following:

• Psychological and social evaluation. Psychological and social issues involved in organ transplantation, such as stress, financial issues, and support by family and/or significant others are assessed. These issues can significantly impact the outcome of a transplant.
• Blood tests. Blood tests are performed to help determine a good donor match, to assess your priority on the donor list, and to help improve the chances that the donor organ will not be rejected.
• Diagnostic tests. Diagnostic tests may be performed to assess your liver as well as your overall health status. These tests may include X-rays, ultrasound procedures, liver biopsy, and dental examinations. Women may receive a Pap test, gynecology evaluation, and a mammogram.

The transplant team will consider all information from interviews, your medical history, physical examination, and diagnostic tests in determining your eligibility for liver transplantation.

Once you have been accepted as a transplant candidate, you will be placed on the UNOS list. Candidates in most urgent need of a transplant are given highest priority when a donor liver becomes available based on UNOS guidelines. When a donor organ becomes available, you will be notified and told to come to the hospital immediately.

If you are to receive a section of liver from a living family member (living-related transplant), the transplant may be performed at a planned time. The potential donor must have a compatible blood type and be in good health. A psychological test will be conducted to ensure the donor is comfortable with the decision.

The following steps will precede the transplant:

• Your doctor will explain the procedure to you and offer you the opportunity to ask any questions about the procedure.
• You will be asked to sign a consent form that gives your permission to do the surgery. Read the form carefully and ask questions if something is not clear.
• For a planned living transplant, you should fast for eight hours before the operation, generally after midnight. In the case of a cadaver organ transplant, you should begin to fast once you are notified that a liver has become available.
• You may receive a sedative prior to the procedure to help you relax.
• Based on your medical condition, your doctor may request other specific preparation.

During the procedure

Liver transplantation requires a stay in a hospital. Procedures may vary depending on your condition and your doctor’s practices.

Generally, a liver transplant follows this process:

• You will be asked to remove your clothing and given a gown to wear.
• An intravenous (IV) line will be started in your arm or hand. Additional catheters will be inserted in your neck and wrist to monitor the status of your heart and blood pressure, as well as for obtaining blood samples. Alternate sites for the additional catheters include the subclavian (under the collarbone) area and the groin.
• You will be positioned on the operating table, lying on your back.
• If there is excessive hair at the surgical site, it may be clipped off.
• A catheter will be inserted into your bladder to drain urine.
• After you are sedated, the anesthesiologist will insert a tube into your lungs so that your breathing can be controlled with a ventilator. The anesthesiologist will continuously monitor your heart rate, blood pressure, breathing, and blood oxygen level during the surgery.
• The skin over the surgical site will be cleansed with an antiseptic solution.
• The doctor will make a slanting incision just under the ribs on both sides of the abdomen. The incision will extend straight up for a short distance over the breast bone.
• The doctor will carefully separate the diseased liver from the surrounding organs and structures.
• The attached arteries and veins will be clamped to stop blood flow into the diseased liver.
• Depending on several factors, including the type of transplant being performed (whole liver versus a portion of liver), different surgical techniques may be used to remove the diseased liver and implant the donor liver or portion of the liver.
• The diseased liver will be removed after it has been cut off from the blood vessels.
• The doctor will visually inspect the donor liver or portion of liver prior to implanting it.
• The donor liver will be attached to the blood vessels. Blood flow to the new liver will be established and then checked for bleeding at the suture lines.
• The new liver will be connected to the bile ducts.
• The incision will be closed with stitches or surgical staples.
• A drain may be placed in the incision site to reduce swelling.
• A sterile bandage or dressing will be applied.

After the procedure In the hospital

After the surgery you may be taken to the recovery room before being taken to the intensive care unit (ICU) to be closely monitored for several days. Alternately, you may be taken directly to the ICU from the operating room. You will be connected to monitors that will constantly display your EKG tracing, blood pressure, other pressure readings, breathing rate, and your oxygen level. Liver transplant surgery requires an in-hospital stay of seven to 14 days, or longer.

You will most likely have a tube in your throat so that your breathing can be assisted with a ventilator until you are stable enough to breathe on your own. The breathing tube may remain in place for a few hours up to several days, depending on your situation.

You may have a thin plastic tube inserted through your nose into your stomach to remove air that you swallow. The tube will be removed when your bowels resume normal function. You will not be able to eat or drink until the tube is removed.

Blood samples will be taken frequently to monitor the status of the new liver, as well as other body functions, such as the kidneys, lungs, and blood system.

You may be on special IV drips to help your blood pressure and your heart and to control any problems with bleeding. As your condition stabilizes, these drips will be gradually weaned down and turned off as tolerated.

Once the breathing and stomach tubes have been removed and your condition has stabilized, you may start liquids to drink. Your diet may be gradually advanced to more solid foods as tolerated.

Your immunosuppression (antirejection) medications will be closely monitored to make sure you are receiving the optimum dose and the best combination of medications.

When your doctor feels you are ready, you will be moved from the ICU to a room on a regular nursing unit or transplant unit. Your recovery will continue to progress here. Your activity will be gradually increased as you get out of bed and walk around for longer periods of time. Your diet will be advanced to solid foods as tolerated.

Nurses, pharmacists, dietitians, physical therapists, and other members of the transplant team will teach you how to take care of yourself once you are discharged from the hospital.

At home

Once you are home, it will be important to keep the surgical area clean and dry. Your doctor will give you specific bathing instructions. The stitches or surgical staples will be removed during a follow-up office visit, if they were not removed before leaving the hospital.

You should not drive until your doctor tells you to. Other activity restrictions may apply.

Notify your doctor to report any of the following:

• This may be a sign of rejection or infection.
• Redness, swelling, or bleeding or other drainage from the incision site
• Increase in pain around the incision site. This may be a sign of infection or rejection.
• Vomiting and/or diarrhea

Your doctor may give you additional or alternate instructions after the procedure, depending on your particular situation.

What is done to prevent rejection?

To allow the transplanted liver to survive in a new body, you will be given medications for the rest of your life to fight rejection. Each person may react differently to medications, and each transplant team has preferences for different medications.

New antirejection medications are continually being developed and approved. Doctors tailor medication regimes to meet the needs of each individual patient.

Usually several antirejection medications are given initially. The doses of these medications may change frequently, depending on your response. Because antirejection medications affect the immune system, people who receive a transplant will be at higher risk for infections. A balance must be maintained between preventing rejection and making you very susceptible to infection.

Some of the infections you will be especially susceptible to include oral yeast infection (thrush), herpes, and respiratory viruses. You should avoid contact with crowds and anyone who has an infection for the first few months after your surgery.

The following are the most common symptoms of rejection. However, each individual may experience symptoms differently. Symptoms may include, but are not limited to, the following:

• Fever
• A yellowing of the skin and eyes due to bile pigments in the blood.
• Dark urine
• Itching
• Abdominal swelling or tenderness
• Fatigue or irritability
• Headache
• Nausea

The symptoms of rejection may resemble other medical conditions or problems. Consult your transplant teaoncerns you have. Frequent visits to and contact with the transplant team are essential.

Organ transplants are expensive and the cost goes well beyond the surgery itself.  If you are told you need a transplant and are sent to a transplant center for evaluation you can bet one of the first questions you will be asked is, “Do you have the financial resources to pay for your transplant?”

According to the National Foundation for Transplants http://www.transplants.org/faq/how-much-does-transplant-cost the average cost of a liver transplant and first year expenses in the United States is $575,000.

The Mayo Clinic developed this helpful list of questions that will help you develop the answer to that question. http://www.mayoclinic.org/departments-centers/transplant-center/liver-transplant/choosing-mayo-clinic/costs-insurance-information

Insurance information

Before your transplant, it’s important that you work closely with your insurance company to understand your benefit plan. You’ll be responsible for any of your transplant and medical care costs not covered by your insurance company.

You may want to ask your insurance company several questions regarding your transplant expenses, including:

• What is the specific coverage of my plan? What are my deductibles, coinsurance, copayments, lifetime maximum amount and annual maximum amounts for both medical care and transplant services?
• Does my plan have a pre-existing or waiting period clause? If so, what is the time frame? Can this be waived?
• Does my plan include pharmacy coverage? If so, will my plan cover my current medications and immunosuppressant medications?
• Does my plan require any special approvals for evaluation or transplant? How long does the approval process take once submitted to insurance?
• Does my plan cover my transportation and lodging expenses during my transplant care?
• Does my current insurance require enrollment in Medicare when eligible?
• Does my insurance follow Medicare Coordination of Benefits guidelines?
• How will my current coverage change after enrolling in Medicare? Will my plan become a supplemental or secondary plan?

If your plan is a Medicare supplement, ask questions including:

• Does my plan follow Medicare guidelines?
• Does my plan cover Medicare Part A and B deductible and coinsurance?
• Does my plan have a pre-existing or waiting period? If so, what is the time frame?
• Does my plan offer an option for Medicare Part D coverage?

Other expenses

Please plan for other expenses that may occur related to your transplant, which may include follow-up medical appointments, long-term medications, caregiver expenses, travel, parking, lodging and other expenses.

Financial Aid

If you need an organ transplant, but don’t have the financial resources to pay for it you should first work with the transplant center social worker to see what is available. There are a number of resources for which you may qualify.  Just click on this link for the complete list and explanation of services.  http://www.transplantliving.org/before-the-transplant/financing-a-transplant/directory/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

How to Get the Most Bang for Your Prescription Medicine Buck

By Bob Aronson

I am a senior citizen, who has had a heart transplant and who also has Chronic Obstructive Pulmonary Disease (COPD).  I take a good number of prescription drugs and despite having Medicare Part D insurance I still pay thousands of dollars a year for my prescriptions.  Most of the drugs I take have been around for quite a while, but not long enough to allow the sale of generics and because there are few if any pricing restrictions, most of my meds are outrageously high priced.

One of the drugs I take is called Foradil.  It was approved by the FDA in February 2001 for the maintenance treatment of asthma and the prevention of bronchospasm in reversible obstructive airways disease..  Despite being on the market that long, it still retails for about $250.00 for a 30 day supply.  Spiriva is another COPD drug and is often taken with Foradil.  It retails for about $350.00.  I take about a dozen drugs and these two alone total over $600.00 a month. Insurance cuts that cost in half, but they are still expensive.  Because of these prices I know of many seniors and others who have to choose between eating and paying for their prescription meds.

It is an unfortunate fact of life that prescription drugs are more expensive in America than any other place in the world and as a result if you contract a serious illness like cancer you may not be able to afford the treatment that can save your life, even if you are insured.

It costs a whole lot of money to be sick in this country and a whole lot of people die — not because there is no medicine or treatment but because they can’t afford to get well.  That strikes me as being just plain wrong.

Healthcare costs are skyrocketing, but prescription drugs lead the parade. Americans now spend a staggering $200 billion a year on them and the end is nowhere in sight.  The cost of staying alive is growing at the rate of about 12 percent a year.  It appears as though people are taking a lot more drugs than they used to and they are taking the really expensive new ones instead of older, cheaper drugs.  The reason?   Either physicians are pushing new medications too hard or, more likely, people are seeing the ads for new drugs in the media and are demanding them.  Strangely, unlike most other businesses where prices come down with time, that’s not true with drugs.  Price increases are commonplace even with the older ones and the increases aren’t one time adjustments. Often the price tag increases several times a year.

Earlier I pointed out that Americans pay more for their drugs than any other country in the world — but it isn’t just a little more…it’s a whole lot.  On average, the cost of prescription drugs in the U.S. is at least double what people in other countries pay for the same exact prescription and it some cases it is 10 times more.

A 2013 report from the International Federation of Health Plans, says Nexium, the pill commonly prescribed for acid reflux, costs U.S. patients more than $200, while Swiss citizens only pay $60 and people who live in the Netherlands pay $23. But Nexium is a drop in the bucket compared to cancer drugs. http://www.drugwatch.com/2014/10/15/americans-pay-higher-prces-prescription-drugs/

Not long ago CBS’ 60 Minutes devoted a segment to the absurdly high cost of cancer drugs. Correspondent Lesley Stahl reported that many cancer drugs cost well over $100,000 for a year’s worth of medicine. She said that in the fight against cancer, most people can expect to be on more than one drug. The bill for medications can escalate to nearly $300,000, a price tag that doesn’t include fees charged by a doctor or a   hospital. Health insurance companies – including government polices like Medicare – don’t cover the full cost of these drugs. Some policies don’t cover some of these drugs at all. But cancer is not alone in the extreme price arena. Drugs for chronic diseases like multiple sclerosis also carry inflated prices. Prescriptions of Copaxone and Gilenya cost about $4,000 and $5,500, respectively and that amount is almost three times more than the most-expensive price in other countries.

In the case of almost every other product sold on the free market, the older a product gets the less it costs. In the case of cancer drugs in America, the inverse is actually true. Novartis developed Gleevec, one of the most popular cancer drugs, in 2001 and sold it for $28,000 a year. By 2012, its cost rose to $92,000. Despite not being a novel treatment, Novartis is allowed to hike up the price every year in the United States.

So If you are a reasonably intelligent person you will ask three questions.  1) Why do these drugs cost so much? 2) What is being done to bring the prices down? And 3) Is there help available to people who can’t afford the drugs that can keep them alive.

Let’s answer the questions one at a time.  First.  Why are drugs so expensive?  Well, if you listen to the big pharma companies they will tell you that the cost reflects their investment in research and development of the drugs.  They will tell you they spend millions on drugs that don’t pan out and that expense is passed on to the patient.  But are they telling the truth?  No they aren’t! Pharmaceutical companies are fond of saying Americans take the lion’s share of the R&D costs for the rest of the world – calling other countries “foreign free riders.” So, drug companies are forced to charge Americans more to recover what they don’t get from other countries.

In fact, the more disturbing truth is that companies charge what they want in the U.S., and it’s a profiteering paradise for them.  U.S. law protects these companies from free-market competition.  For example, Medicare is not allowed to negotiate prices. By law, it has to pay exactly what the drug companies charge for any drug.  In effect our lawmakers told the pharmaceutical companies that they can charge whatever they want and we (the taxpayers) will pay it. Even may insurance companies don’t negotiate or do it half-heartedly.  Companies make billions on most of these drugs, and they receive massive tax breaks for R&D, leading to inflated figures. Another huge portion of the costs are subsidized by taxpayers.

Here’s the sad part of all this R and D and the introduction of new drugs.  Only 1 in 10 of them actually provides substantial benefit over old drugs.  To add insult to injury the side effects of the new entries create the need for more drugs. And — some of these drugs have horrible complications that result in lawsuits to recover damages.

University of Medicine and Dentistry of New Jersey Health professor and policy expert Donald W. Light says, “We can find no evidence to support the widely believed claims from industry that lower prices in other industrialized countries do not allow companies to recover their R&D costs so they have to charge Americans more to make up the difference and pay for these ‘foreign free riders,’”

In contrast, governments in other countries put caps on the price of drugs and negotiate prices based on what the actual therapeutic benefit is. And Big Pharma still turns a healthy profit in other countries, despite costs being 40 percent lower than they are in the United States.

Big Pharma would have many Americans believe that it is disadvantaged by the costs of developing a new drug. The truth is, drug companies are far from impoverished. EvaluatePharma’s most recent report shows that 2013 was the biggest year since 2009 for drug approvals. These new drugs will add nearly $25 billion to Big Pharma’s coffers by 2018, and prescription drug sales will exceed one trillion dollars by 2020.

The health care industry as a whole has more than enough money, with billions left to continue pursuing its interests in Washington.

Big Pharma Spends More on Lobbying Than Anyone

Since 1998, the industry spent more than $5 billion on lobbying in Washington, according to the Center for Responsive Politics. To put that in context, that’s more than the $1.53 billion spent by the defense industry and more than the $1.3 billion forked out by Big Oil.

From 1998 to 2013, Big Pharma spent nearly $2.7 billion on lobbying expenses — more than any other industry and 42 percent more than the second highest paying industry: insurance. And since 1990, individuals, lobbyists and political action committees affiliated with the industry have doled out $150 million in campaign contributions.

The world’s 11 largest drug companies made a net profit of $711.4 billion from 2003 to 2012. Six of these companies are headquartered in the United Sates: Johnson & Johnson, Pfizer, Abbot Laboratories, Merck, Bristol-Myers Squibb and Eli Lilly. In 2012 alone, the top 11 companies earned nearly $85 billion in net profits. According to IMS Health, a worldwide leader in health care research, the global market for pharmaceuticals is expected to top $1 trillion in sales by 2014.http://www.drugwatch.com/manufacturer/

But the large amount of cash Big Pharma bestows on government representatives and regulatory bodies is small when compared with the billions it spends each year on direct-to-consumer advertising. In 2012, the industry invested nearly $3.5 billion into marketing drugs on the Internet, TV, radio and other outlets. The United States is one of only two countries in the world whose governments allow prescription drugs to be advertised on TV (the other is New Zealand).

A single manufacturer, Boehringer Ingelheim, spent $464 million advertising its blood thinner Pradaxa in 2011. The following year, the drug passed the $1 billion sales mark. The money in this business appears to be well-spent.

No sane person can object to a company making a profit, it’s part of the American way, but the drug industry’s profits are excessive.  We paysignificantly more than any other country for the exact same drugs. Per capita drug spending in the U.S. is about 40 percent higher than Canada, 75 percent greater than in Japan and nearly triple the amount spent in Denmark.

So you might ask, “What can I do to get the lowest possible price for my  prescriptions?”  Well, there are a few things.  You can shop for the best price and because of the internet that’s become a whole lot easier.  You can look up a specific drug and find the best price at a pharmacy near you.  Here are two resources, I’m sure you can find a lot more https://www.lowestmed.com/Search#/  or http://www.goodrx.com/ All; you have to do is type in the drug you need and your zip code and it will find the price of that drug in pharmacies near you.

Transplant recipients might be interested in the cost of anti-rejection drugs.  The price is hard to stomach but easy to find.  In my zip code 32244 100 Mg Cyclosporine capsules range jn price from $526.00 at Wal Mart to $584 at Target.  If you are a heart pateint and take Carvedilol in my neighborhood it ranges from $4.00 at WalMart to $9.54 at Kmart . Lisinopril also has a wide range.  At the Publix Supermarket pharmacy near me it is FREE…that’s right FREE.  But at CVS it is $12.00.  Those price variations might make it worth a little longer drive to get a better bargain.

You can also get help with coupons which are an obvious choice to save money when grocery or clothes shopping, but they’re often overlooked as a way to cut costs of over-the-counter and prescription drugs.  Manufactures frequently offer one time and repeat coupons that can save consumers hundreds of dollars on their medicines.  “For our family it has been incredibly effective [in saving money] for a number of regular prescriptions,” says Stephanie Nelson, founder of the coupon website CouponMom.com.

The costs of prescription drugs and over-the-counter medications have been steadily rising and patients facing tight budgets are often forced to make hard decisions when it comes to what they can afford.

The savings vary by manufacturer, but according to Nelson, many companies offer discounts at each prescription refill while others offer discount cards that take $20 off co-pays. Others offer one-time coupons to cover the first use of a drug.

Consumer Reports Magazine says that there are other ways to save money, too.  Whichever drugstore or pharmacy you use, choosing generics over brand-name drugs will save you money. Talk to your doctor, who may be able to prescribe lower-cost alternatives in the same class of drug. In addition, follow these tips.

1. Request the lowest price.Our analysis showed that shoppers didn’t always receive the lowest available price when they called the pharmacy. Sometimes they were given a discounted price, and other times they were quoted the list price. Be sure to explain—whether you have insurance or not—that you want the lowest possible price. Our shoppers found that student and senior discounts may also apply, but again, you have to ask.
2. Leave the city.Grocery-store pharmacies and independent drugstores sometimes charge higher prices in urban areas than in rural areas. For example, our shoppers found that for a 30-day supply of generic Actos, an independent pharmacy in the city of Raleigh, N.C., charged $203. A store in a rural area of the state sold it for $37.
3. Get a refill for 90 days, not 30 days.Most pharmacies offer discounts on a three-month supply.
4. Consider paying retail.At Costco, the drugstore websites, and a few independents, the retail prices were lower for certain drugs than many insurance copays.
5. Look for additional discounts.All chain and big-box drugstores offer discount generic-drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply. Other programs require you to join to get the discount. (Restrictions apply and certain programs charge annual fees.)
6. Consumer Reports goes on to say that “although the low costs we found at a few stores could entice you to get your prescriptions filled at multiple pharmacies based only on price, our medical consultants say it’s best to use a single pharmacy. That keeps all of the drugs you take in one system, which can help you avoid dangerous drug interactions.”

Finally, what do you do if you’ve done the shopping, used coupons, followed all of the Consumer Report Tips and are still unable to pay for your prescriptions.  Well, there is some limited assistance. Here are some resources.

1. http://www.medicare.gov/pharmaceutical-assistance-program/

2.http://www2.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm

3. http://healthfinder.gov/rxdrug

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,200 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

Disabled and Nearly Invisible

Bob Bob Aronson

(Yes, we cover disabled permits, disabled parking and disability shopping carts)

This is a blog about what it means to be disabled, who can claim that designation and what the rest of us can do to make life easier for those who fall into that category.

As an old journalist I am a pretty good observer.  I often see things that others do not see because my former profession taught me to look for things that are out of place or just don’t make sense.  Here’s one of them.  There are millions of disabled people in the world, maybe  close ot a billion  — yet they are often not seen or, to be honest, they are ignored.  “Why,” you ask?  Well,  year after year, survey after survey reveals that the average, healthy person is uncomfortable around disabled people. They are afraid of saying or doing the “wrong” thing so instead they do nothing.

Sometimes it is difficult to know who is and who isn’t disabled. Almost without fail the word disabled brings to mind the image of a person in a wheelchair.  Even the blue disabled permits you see hanging from rearview mirrors or embossed on parking signs are based on the wheelchair image and that, of course, reinforces the stereotype.

We have come to expect that if you have a disabled permit you are very likely in a wheelchair and if you are in a wheelchair it is quite likely you are unable to walk. At least that’s the logic that’s applied.  The result is that disabled people who can walk get a lot of “dirty looks.”  You have all seen it happen and probably reacted negatively to the sight of a man or woman who parks her car in a disabled spot, hangs the placard from the mirror and walks into the store without so much as a limp. It is common for people to jump to the conclusion that this person is cheating on the permit hanging from the mirror.   Some are even verbally assaulted for using a disabled parking spot when they don’t need one. about 15 years ago a poll revealed that there were 26 million Americans considered to have a severe disability and only 7 million of them use  wheelchairs, canes, crutches or walkers (U.S. Department of Commerce).  I am one of those healthy looking disabled persons.
At 6’4” and 200 pounds I look fit enough, despite my gray beard, to walk a long way.  Well, I am not in the least bit fit and cannot walk very far because I have Chronic Obstructive Pulmonary Disease (COPD) which means I get out of breath with even minimal exertion.  Sometimes walking from the disabled parking space to the door of the store (a hundred feet or so) will cause me to stop to rest, but there are other disabilities, too. Some require wheelchairs, some don’t.

Upon researching this topic I was surprised to learn from the U.S. Census Bureau that about 56.7 million people — 19 percent of the population had disabilities in 2010.  We will break that down into specific categories later.

I always like to start my blogs with a definition of terms but the term ”Disabled” is very broad which makes it difficult to define. Finally, though, I selected three definitions because they seem to cover every angle of the subject.

The  Americans with Disabilities Act (ADA) defines an individual with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

The Social Security Administration says that to be considered disabled, individuals must have an impairment, either medical, psychological, or psychiatric that keeps them from being able to do substantial gainful activity (SGA). The impairment must have prevented SGA for at least 12 months, or be expected to prevent the individual from doing SGA for at least 12 months.

And, finally — Federal and state statute — the law books.  Federal laws define a person with a disability as “Any person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such impairment; or is regarded as having such an impairment.”  These impairments include walking, talking, hearing, seeing, breathing, learning, performing manual tasks, and caring for oneself.

Who Is Disabled?

For obvious reasons older Americans are most likely to be disabled.  If you are 80 or over you are eight times more likely to be disabled. If you are from 15 to 24 years old the chance of having a severe disability is one in 20.

What are the most common disabilities?

• About 8.1 million people had difficulty seeing, including 2.0 million who were blind or unable to see.
• About 7.6 million people experienced difficulty hearing, including 1.1 million whose difficulty was severe. About 5.6 million used a hearing aid.
• Roughly 30.6 million had difficulty walking or climbing stairs, or used a wheelchair, cane, crutches or walker.
• About 19.9 million people had difficulty lifting and grasping. This includes, for instance, trouble lifting an object like a bag of groceries, or grasping a glass or a pencil.
• Difficulty with at least one activity of daily living was cited by 9.4 million noninstitutionalized adults. These activities included getting around inside the home, bathing, dressing and eating. Of these people, 5 million needed the assistance of others to perform such an activity.
• The final inconvenience suffered by the disabled is that they are also monetarily handicapped. Adults age 21 to 64 with disabilities had median monthly earnings of $1,961 compared with $2,724 for those with no disability.  Those figures are from 2010, the last U.S. Census.

So, why do you need to know all of this?  Because I believe disabled people are almost invisible.  We don’t make much of a fuss about much of anything.  We don’t have huge conventions or demonstrations and we don’t demand very much from anyone.  For the most part we just want to be treated fairly, equally and with respect.

My experience as a disabled person mirrors that of others with the same diagnosis.  Most people just ignore us and they do so because they don’t know what to do.  In the supermarket the other day I was on my mobility scooter slowly going up the aisle to the jams and jellies.  Directly in front of me and stopped on the other side of the aisle was a woman with a regular shopping cart.  She looked up saw me and said, “Oh my God, I’m sorry,” turned her cart around and went the other way.  I have no idea why she did that or what she was sorry about.

Some people are uncomfortable talking with people with disabilities for fear of saying or doing the wrong thing and some people feel sorry for people with disabilities, and assume that they are bitter about their condition.  The fact is that people with disabilities are just like anyone else.  They learn to cope and lead their lives in as productive a manner as possible.

A recent public opinion survey in Great Britain revealed that Two-thirds – 67 per cent – of those surveyed said that they would worry about speaking about disability in front of a disabled person, with many worrying they would say something inappropriate or use an offensive term by mistake —  so what do they do?  They totally avoid contact with disabled persons.
Obviously ignoring people is of no help to them so what do you do?  This list from the Diversity shop struck me as quite helpful.

http://www.diversityshop.com/store/10comvid.html

1. Speak directly rather than through a companion or sign language interpreter who may be present.
2. Offer to shake hands when introduced. People with limited hand use or an artificial limb can usually shake hands and offering the left hand is an acceptable greeting.
3. Always identify yourself and others who may be with you when meeting someone with a visual disability. When conversing in a group, remember to identify the person to whom you are speaking. When dining with a friend who has a visual disability, ask if you can describe what is on his or her plate.
4. If you offer assistance, wait until the offer is accepted. Then listen or ask for instructions.
5. Treat adults as adults. Address people with disabilities by their first names only when extending that same familiarity to all others. Never patronize people in wheelchairs by patting them on the head or shoulder.
6. Do not lean against or hang on someone’s wheelchair. Bear in mind that people with disabilities treat their chairs as extensions of their bodies. And so do people with guide dogs and help dogs. Never distract a work animal from their job without the owner’s permission.
7. Listen attentively when talking with people who have difficulty speaking and wait for them to finish. If necessary, ask short questions that require short answers, or a nod of the head. Never pretend to understand; instead repeat what you have understood and allow the person to respond.
8. Place yourself at eye level when speaking with someone in a wheelchair or on crutches.
9. Tap a person who has a hearing disability on the shoulder or wave your hand to get his or her attention. Look directly at the person and speak clearly, slowly, and expressively to establish if the person can read your lips. If so, try to face the light source and keep hands, cigarettes and food away from your mouth when speaking. If a person is wearing a hearing aid, don’t assume that they have the ability to discriminate your speaking voice. Never shout to a person. Just speak in a normal tone of voice.
10. Don’t be embarrassed if you happen to use common expressions such as “See you later” or “Did you hear about this?” that seems to relate to a person’s disability.

Effective communication can mean the difference between the success and failure of any given project, job or effort.  It is always important to give some extra thought to what you want to communicate and that is particularly true when working with groups of disabled persons.

The State of Illinois Department Of Human Services developed this list of tips on how to best communicate with those who have disabilities.

1. The most important thing to remember when you interact with people with disabilities is that they are people.
2. Their disability is just one of the many characteristics they have. People with disabilities have the same needs we all do: first and foremost among them is to be treated with dignity and respect.
3. When you interact with people with disabilities, focus on their abilities, not their disabilities. People with disabilities are unique individuals who have a wealth of knowledge, skills, talents, interests, and experiences that add tremendous diversity, resourcefulness, and creative energy to our society.
4. Remember, people with disabilities may do things in different ways than people without them however, they can achieve the same outcomes.

General Etiquette Tips

1. Practice the Golden Rule. Treat everyone as you would like to be treated. Think of the person first, not their disability. Don’t shy away from people with disabilities – relax and be yourself
2. Always Ask Before Giving Assistance. Just because a person has a disability, they don’t necessarily need or want your assistance. Never help someone without first asking them.
3. One woman recalls: “When I walked on crutches, I was once knocked down by two little old ladies who were going to ‘help’ me walk on an icy sidewalk. Without asking, they came up, grabbed me, threw me off balance, and down I went!”

4. Think Before You Speak. Avoid using labels when you speak – they are offensive to everyone, including people with disabilities.
5. Avoid Showing Pity or Being Patronizing. People with disabilities aren’t victims. As a person in a wheelchair said, “I am not a wheelchair victim. Wheelchair victims are the people I run into with my footrest at the supermarket.”
6. When you talk to a person with a disability, don’t use pet names, such as “honey”. It is also very disrespectful to pat people with disabilities on the head or talk down to them as though they were children.

Interacting with People with Disabilities

1. When you interact with people with disabilities, talk directly to them, not to their companions, aides, or interpreters. I am always amazed when Robin and I are on an outing and stop at a restaurant where I have to leave my scooter to walk in. Often the Maitre D’ will ask Robin, “Can he walk, in.”  What am I, a potato?  Here are some other ways to interact with people with specific types of disabilities:
2. When you interact with someone who is Deaf or Hard of Hearing, remember that some individuals may be able to hear, some may be able to lip read, while others prefer to use sign language or assistive technology. Ask them how they prefer to communicate.
3. When you interact with someone who is blind or visually impaired, always introduce yourself and let them know when you are leaving. You may offer your arm or elbow as a guide if they request assistance but never push, pull or grab the individual. Don’t pet or distract a guide dog. The dog is responsible for its owner’s safety and is always working – it.
4. When you interact with someone who uses a wheelchair, do not push, lean on, or hold the person’s wheelchair. Try to put yourself at eye level when talking with someone in a wheelchair.
5. When you interact with someone with a cognitive disability, speak to the person in clear, simple sentences. Be patient with them and give them time to communicate with you.
6. When you interact with someone with a speech impairment, allow them as much time as they need to communicate. Be respectful and avoid trying to finish their sentences.

People First language

Always use positive, people first language that empowers rather than marginalizes people with disabilities.

Here are some examples of offensive language and language that should be used:

This next section is a cut and paste from a website.  The format simply won’t adjust to WordPress so I apologize for the poor placement, but I’m sure you will figure it out and get the meaning.  Thank you.

Offensive                                                                                Preferred

Birth defect                                        Person who is disabled since birth, congenital disability

Cerebral palsied                                 Person who has cerebral palsy

Cripple                                                            Person who needs mobility assistance

Deaf and Dumb, Deaf Mute              Person who is deaf and does not speak

Deformed                                           Person who has a physical disability

Emotionally disturbed                                   Person with an emotional disability

Handicapped                                      Disabled person

Hunchbacked                                     Person with a spinal curvature

Insane, deranged, deviant                 Person with a mental illness

Midget, Dwarf                                     Person who is small in stature

Mongoloid                                          Person who has Down Syndrome

Normal                                                Non-disabled, able-bodied

Retarded                                             Person with a cognitive disability

And, finally.  Disabled permits, disabled parking and mobility shopping carts.

First the permits.  Disabled parking permits are reserved for those who have been certified as such by a qualified physician.  Almost all states have the same criteria for issuing these permits and they include:

1. The applicant named is legally blind or is a disabled person with a permanent disability that limits or impairs his/her ability to walk 200 feet without stopping to rest.
2. Inability to walk without the use of or assistance from a brace, cane, crutch, prosthetic device, or other assistive device, or without assistance of another person. If the assistive device significantly restores the person’s ability to walk to the extent that the person can walk without severe limitation, the person is not eligible for the exemption parking permit.
3. The need to permanently use a wheelchair.
4. Restriction by lung disease to the extent that the person’s forced (respiratory) expiratory volume for 1 second, when measured by spirometry, is less than one liter or the person’s arterial oxygen is less than 60 mm/hg on room air at rest.
5. Use of portable oxygen.
6. Restriction by cardiac condition to the extent that the person’s functional limitations are classified in severity as Class III or Class IV according to standards set by the American Heart Association.
7. Severe limitation in a person’s ability to walk due to an arthritic, neurological, or orthopedic condition.
8. Legally Blind (This is the only disability an Optometrist can certify.)

Physicians are put on notice in most states that their responsibility is a great one.  Most applications warn applicants and physicians that the permits are only for those people who are severely mobility impaired. Any physician who signs an application for someone who is not eligible can be fined $1,000 or one year in jail or both. All applications are tracked by computer and the number signed by specific physicians can be reviewed. Any person who applies and is not eligible can be fined the same as a physician.

Anyone who obtains or uses a permit that does not belong to them can be charged with a second degree misdemeanor – $1000 fine or up to 6 months in jail. Improper use of the permit is now twice the fee of a disabled parking violation. This should deter people from loaning their permits to family members.  It does not matter if you are running an errand for the person with a disability. If the person with a disability is not present — the fine is $1000.

Disabled parking is designated in that manner because some people need to get as close to the facility as possible.  There is usually a hefty fine for parking in a disabled spot if you do not have a permit hanging from your rear view mirror.  There is also a hefty fine for using a permit that was not issued to you.

WARNING  (this is the Florida law, but most states say the same thing. “Any person who knowingly makes a false or misleading statement in an application or certification commits a misdemeanor of the first degree, punishable as provided in section 775.082 or 775.083, F.S.  The penalty is up to one year in jail or a fine of $1,000 or both.”

Now that you know about the disabled Parking permits you should also know:

• It is not OK to park in a disabled spot just to use the ATM real quickly.
• It is not ok to park in a disabled spot and leave the disabled person in the car while you run into the store.
• It is not ok to use someone else’ permit
• The laws offer no exceptions for parking in a disabled parking spot so it is not ok to park, run in to drop off your Wife’s lunch and leave again.

And finally, mobility shopping carts.

As far as we can determine there is no law requiring only disabled people ride the shopping carts provided by some stores, it is generally a common courtesy to leave the carts charged so a disabled person can use one when he/she needs it.  It is unlikely that store officials will ask people who ride their carts if they are in fact disabled.  Unfortunately there are many who do ride them for any one of a number of reasons, the least of which is having a disability.  I wish people who weren’t disabled would leave the carts for those of us who are and really can’t get around without one.  Children should be told in no uncertain terms that the carts are for people who have great difficulty walking, they are not to be ridden for the pleasure of the child.

Anyone who rides a supermarket or shopping center cart should return it to its original spot and plug it in so it is ready for the net disabled person who needs to use it.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

People Who Say they Can’t Quit Smoking Are Gutless Liars!

By Bob Aronson…former smoker

if that headline doesn’t get your attention I don’t know what will.

“I can’t quit smoking,” is BS.  You can quit, but you are a pansy, no guts.  You can spread that “Can’t quit” manure elsewhere.  It doesn’t work here because it’s a big lie.

Do I have your attention?

This post is aimed at smokers, whether you are just starting the habit or have smoked for a while and are thinking about quitting.  I am writing this to alert you to smoking related issues not to draw attention to myself or my condition.  I seek no sympathy nor attention.

Yes, this is a posting that encourages you to ignore the temptation to start smoking and/or to quit smoking if you already have the habit. In the interest of full disclosure let me tell you why you should read this. You should do so because I offer hope and straight talk.  No one could possibly have had a greater addiction to cigarettes than I did.  And…I know about addiction, too.  Not only did I quit smoking (1991) I also quit drinking (1982) after years as a practicing alcoholic.   I have not had a drink since.

Let me get right to the point.  Even though I quit smoking almost 25 years ago it is killing me.  When I die I would imagine that my addiction to cigarettes will be the chief cause of my demise because I have emphysema and asthma, Chronic Obstructive Lung Disease (COPD).  Had I not quit smoking when I did I would have been dead long ago.  Recently my pulmonologist told me that If I had continued to smoke,  I would have needed a lung transplant long ago.  For those of you who don’t know me I had a heart transplant in 2007 and smoking may have been a contributor to the heart failure that caused me to need that life-saving surgery.

I know how hard it is to quit smoking and I refuse to accept, “I’ve tried many times and cannot quit.”  That, my friend, is pure unadulterated BS.  You are only fooling yourself with that nonsense.  The fact of the matter is you don’t have the guts to quit.  You can’t handle a little discomfort so you light up another smoke and say, “I can’t quit.”  And again I say, “BS.”  Tough talk?  Damned right it is.  If you think the discomfort of quitting smoking is hard to handle try the discomfort a of lung cancer as an option, or maybe emphysema.

I smoked up to 4 packs a day for 37 years and I quit.  Was it easy?  Of course not!  It hurt, it was painful, I was an SOB to live with, but damnit I quit.  I used every gimmick out there to help me break the habit and finally was rescued by nicotine gum.  I probably quit smoking 3 or 4 dozen times maybe more.  You see, you don’t quit once, fail and say, “I tried, I can’t quit,” because you haven’t tried.  The way to quit smoking is to keep quitting until you quit. You never give up, you quit every day, several times a day until finally you have quit for good.

I always kept my smokes and a lighter in my shirt pocket.  Almost every day when I left home for work I would automatically reach for a cigarette and the lighter so I could get my hit of nicotine.  Finally, I got to the point where every time I reached into that pocket for the cigarettes and lighter I would pull both out and throw them out the window of the car.  I did that every day for weeks.  Later in the day I’d find myself buying another pack and a lighter and the next day I would toss them out the window. “The hell with littering,” I would say, “My life’s at stake here.”

After about a year of all this nonsense I finally had my last cigarette in January of 1991.  You see, I had just watched my father die of emphysema.  At least something good came of his death.  I was able to quit.  I was addicted to nicotine gum for two years after that and lemon drops for another year but I quit, by God, I quit.

You know why it’s so hard?  It is because you are an addict, just like any drunk or junkie.  When you hear someone say, “A cigarette tastes so good after a meal,” that’s just more BS.  The reason it feels good is because it’s been a while since your last cigarette and you are going into withdrawal.  As soon as you light up you stop the withdrawal and feel better.  It is no different than getting a hit of heroin or a good slug of booze.

From the time I was 15 years old in 1954 until 1991 (37 years) when I was 52 years old I was a smoker, a heavy smoker.  Some days when I went to work I would throw 4 packs of cigarettes in my briefcase and finish them before I retired for the night..  That’s 80 cigarettes.

There are approximately 600 ingredients in cigarettes. When burned, they create more than 7,000 chemicals. At least 69 of these chemicals are known to cause cancer, and many are poisonous as well.  Here are just a few of the chemicals in tobacco smoke, and other places they are found:

• Acetone –nail polish remover
• Acetic Acid –  ingredient in hair dye
• Ammonia –household cleaner
• Arsenic – rat poison
• Butane – lighter fluid
• Cadmium –battery acid
• Carbon Monoxide car exhaust fumes
• Formaldehyde – embalming fluid

A final note on this subject.  In 1998 I lost my wife of 35 years to lung cancer. She, too was a smoker and she died a horrible death, no one should have to suffer the way she did and the way thousands of others do every day.  Smoking is a terrible, disgusting and deadly habit.  I don’t care who you are, you have a responsibility to yourself and to those who love you to quit smoking.  You must.  After a while the urges disappear and you can live a normal life again.  You might even find that you’ll take great pride in being able to say, “I used to smoke, but I don’t anymore.”

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Feeling better than ever at age 73

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

We Are Too Fat and It’s Killing Us. Obesity — America’s Number One Health Threat.

By Bob Aronson

Obesity may well be the greatest threat to public health ever, at least that’s the conclusion of a good many national and international health agencies ranging from the American Centers For Disease Control and Prevention (CDC) to the World Health Organization (WHO).

Too many people see obesity as a cosmetic problem and dismiss it as such.  It isn’t.  A bad haircut is a cosmetic problem but a bad haircut never killed anyone.  Obesity can and does with great regularity.  Obesity is not about how you look, it is about slow suicide.

Before we get into the details it is important to define obesity.  According to the medical profession men are obese if fat makes up more than 25% of their body weight. Women are obese at more than 30% body fat.  In order to measure the percentage of body fat health professionals use a formula called the Body Mass Index (BMI).  It is based on height and weight (there is some controversy about the accuracy of BMI in some professional circles but that determination is best made by experts in the field and not by this author.  This link will give you more information http://healthland.time.com/2013/08/26/why-bmi-isnt-the-best-measure-for-weight-or-health/

The obesity epidemic is a fact, though, and will continue to be a problem regardless of how the BMI debate is settled).

• A BMI of 18.5 to 24.9 is normal weight.
• 25,0 ti 29.9 is overweight
• 30.0 to 39.9 is obese
• 40.0 and above is extremely obese

You can determine your BMI in private just by clicking on either of the two links below.

1. If you want a simple BMI calculator click here. http://www.nhlbi.nih.gov/health/educational/lose_wt/BMI/bmicalc.htm
2. If you want a BMI that measures more and is more accurate, click here. http://www.healthstatus.com/calculate/body-fat-percentage-calculator

Studies indicate that nearly one in five US deaths is associated with obesity, which is nearly three times higher than previous estimates.  It is now thought that 34% of American adults are obese. Another 34% are overweight.

The preceding information is disturbing enough but even more upsetting is that fact that 17 percent of American children are obese. Another 15% are overweight.  That means that a third of our children have weight problems and you can bet that they will carry those problems into adulthood.

So – why worry about all of this, why is it important?  It is important because obesity kills. It kills just as sure as a 45 caliber bullet can kill, only it usually takes longer and the death can be painful and far more costly.  Bullets are usually mercifully quick.  Death by obesity is slower, much slower.  It creeps up on you, destroys your organs, debilitates, disables, depresses and costs far more than you can afford and then kills you anyway.  It is a long, hard and painful existence, but it can be avoided.  It’s not easy, but it can be avoided.

I am writing about obesity because it is a clear and present danger to everyone.  According to the National Institutes of Health (NIH) we run the risk of contracting any or all of the following when we ignore warnings about overweight and obesity..

Health Risks of Overweight and Obesity?

http://www.nhlbi.nih.gov/health/health-topics/topics/obe/risks

Being overweight or obese isn’t a cosmetic problem. These conditions greatly raise your risk for other health problems (this list has been edited.  To read all of it in detail click on the link above).

Coronary Heart Disease

As your body mass index rises, so does your risk for coronary heart disease (CHD). CHD is a condition in which a waxy substance called plaque (plak) builds up inside the coronary arteries and reduces blood flow to the heart thereby causing a heart attack or heart failure.

High Blood Pressure

Blood pressure is the force of blood pushing against the walls of the arteries as the heart pumps blood. If this pressure rises and stays high over time, it can damage the body in many ways.  Your chances of having high blood pressure are greater if you’re overweight or obese.

Stroke

Earlier we talked about a buildup of plaque in your arteries. Well, it can rupture, causing a blood clot to form and if that clot is close to the brain it can cause a stroke. The risk of having a stroke rises as BMI increases.

Type 2 Diabetes

Diabetes is a disease in which the body’s blood sugar, level is too high. In type 2 diabetes, the body’s cells don’t use insulin properly. Diabetes is a leading cause of early death, CHD, stroke, kidney disease, and blindness. Most people who have type 2 diabetes are overweight.

Metabolic Syndrome

Metabolic syndrome is the name for a group of risk factors that raises your risk for heart disease and other health problems, such as diabetes and stroke.

A diagnosis of metabolic syndrome is made if you have at least three of the following risk factors:

• A large waistline. This is called “having an apple shape.” Having extra fat in the waist area is a greater risk factor for CHD than having extra fat in other parts of the body, such as on the hips.
• A higher than normal triglyceride level (or you’re on medicine to treat high triglycerides).
• A lower than normal HDL cholesterol level (or you’re on medicine to treat low HDL cholesterol).
• Higher than normal blood pressure (or you’re on medicine to treat high blood pressure).
• Higher than normal fasting blood sugar (or you’re on medicine to treat diabetes).Being overweight or obese raises your risk for colon, breast, endometrial, and gallbladder cancers.Osteoarthritis is a common joint problem of the knees, hips, and lower back. The condition occurs if the tissue that protects the joints wears away. Extra weight can put more pressure and wear on joints, causing pain or broken bones.Sleep apnea is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep.Reproductive Problems
• A person who has sleep apnea may have more fat stored around the neck. This can narrow the airway, making it hard to breathe.
• Sleep Apnea
• Osteoarthritis
• Cancer
• Obesity can cause menstrual issues and infertility in women.

Dementia

• Recent studies show that obesity is linked with brain atrophy. This increases the risk of dementia as people get older.

I think we have pretty well established that obesity can cause irreparable physical harm, but it can cause mental and emotional problems that is just as painful.  For example:

• Obesity makes life more difficult. It is harder to tie your shoes, fit in an airplane seat, or find a mate.
• Obese people are stigmatized by society. Many normal weight people look down on obese people.
• Employers discriminate against obese people in hiring, pay increases, and promotions.
• Obesity is a cause of depression in women.
• Obese children rate their quality of life as being even lower than do children who have cancer.

Space does not allow for us to delve farther into adolescent or child obesity but it is a significant problem and we will tackle it in another separate blog.

So now we know about obesity and its effects.  Now let’s look into how we get that way and what can be done about it.

The problem and the solution to it seem simple.  All you have to do to maintain a healthy weight is to burn up as many calories as you take in. That’s not easy because some people burn calories at a different rate than others. The problem is that few pay any attention to the number or nature of the calories they consume.  Furthermore, even fewer people pay any attention to the trade-off of burning them up.

The secret to maintaining a healthy BMI is to be calorie conscious.  You should know what you are consuming and how much exercise or activity it takes to burn it off.  For example, if you go to a professional football game and eat just one of their hotdogs you will consume about 250 calories.  In order to get rid of 250 calories you would need to walk for about an hour (see calorie/exercise calculator and other calculators here  https://www.fitwatch.com  If this particular link does not satisfy you just Google calorie calculators and you’ll find dozens of free apps for your phone, tablet, PC or Mac).

Obesity does not come on overnight.  No one goes to bed fit and in good shape and awakens as a morbidly obese person.  The process is gradual and can be stopped at any point along the way if you do two things; 1) Eat right and 2)exercise.  That’s all, eat right and exercise.

Most of us live very busy lives and feel as though we don’t have time to cook so “Fast food” becomes a way of life, but there are faster healthy foods that you can prepare for yourself that won’t add inches to your waistline.  Try some of these or google “Healthy nutritious and fast food recipes” and you are bound to find something that appeals to you.  This site, for example, is very helpful. http://www.eatingwell.com/recipes_menus/collections/quick_healthy_dinner_recipes

Nearly everyone I know has some kind of a sweet tooth. Some have it more than others but almost everyone likes a little “Sweet” now and then and a little might be fine but we just don’t seem to be able to handle just a little.  Well, you’d better learn how.

In September 2013, a bombshell report from Credit Suisse’s Research Institute brought into sharp focus the staggering health consequences of sugar on the health of Americans. The group revealed that approximately “30%–40% of healthcare expenditures in the USA go to help address issues that are closely tied to the excess consumption of sugar.”  The figures suggest that our national addiction to sugar runs us an incredible $1 trillion in healthcare costs each year. The Credit Suisse report highlighted several health conditions including coronary heart diseases, type II diabetes and metabolic syndrome, which numerous studies have linked to excessive sugar intake.

According to Medicine Net http://www.medicinenet.com/script/main/art.asp?articlekey=56589         Each American consumes one hundred and fifty-six pounds of added sugar.  That’s 31 five pound bags of sugar according to the U.S. Department of Agriculture (USDA). Imagine it: 31 five-pound bags for each of us.

In the U.S. diet, the major source of “added sugar” — not including naturally occurring sugars, like the fructose in fruit — is soft drinks. They account for 33% of all added sugars consumed, says Kristine Clark, PhD, RD, a spokeswoman for the Sugar Association. Clark is also director of sports nutrition in the athletic department of Penn State University.

Anne Alexander, editorial director of Prevention and author of The Sugar Smart Diet provided this explanation of what sugars can do to your body.

 Glucose

• It seeps through the walls of your small intestine, triggering your pancreas to secrete insulin, a hormone that grabs glucose from your blood and delivers it to your cells to be used as energy.

• But many sweet treats are loaded with so much glucose that it floods your body, lending you a quick and dirty high. Your brain counters by shooting out serotonin, a sleep-regulating hormone. Cue: sugar crash.
• Insulin also blocks production of leptin, the “hunger hormone” that tells your brain that you’re full. The higher your insulin levels, the hungrier you will feel (even if you’ve just eaten a lot). Now in a simulated starvation mode, your brain directs your body to start storing glucose as belly fat.
• Busy-beaver insulin is also surging in your brain, a phenomenon that could eventually lead to Alzheimer’s disease. Out of whack, your brain produces less dopamine, opening the door for cravings and addiction-like neurochemistry.
• Still munching? Your pancreas has pumped out so much insulin that your cells have become resistant to the stuff; all that glucose is left floating in your bloodstream, causing prediabetes or, eventually, full-force diabetes.

Fructose

• It, too, seeps through your small intestine into the bloodstream, which delivers fructose straight to your liver.
• ​Your liver works to metabolize fructose—i.e., turn it into something your body can use. But the organ is easily overwhelmed, especially if you have a raging sweet tooth. Over time, excess fructose can prompt globules of fat to grow throughout the liver, a process called lipogenesis, the precursor to nonalcoholic fatty liver disease.
• ​Too much fructose also lowers HDL, or “good” cholesterol, and spurs the production of triglycerides, a type of fat that can migrate from the liver to the arteries, raising your risk for heart attack or stroke.
• ​Your liver sends an S.O.S. for extra insulin (yep, the multi-tasker also aids liver function). Overwhelmed, your pancreas is now in overdrive, which can result in total-body inflammation that, in turn, puts you at even higher risk for obesity and diabetes Robert Lustig, an endocrinologist from California gained national attention after a lecture he gave titled “Sugar: The Bitter Truth” went viral in 2009.  www.youtube.com/watch?v=dBnniua6-oM

Fruit and Sugar substitutes

There are two questions associated with sugar that must be addressed, one has to do with the safety of sugar substitutes and the 2^nd with fruit.

Stay away from sugar but eat more fruit! Huh?  Fruit is loaded with sugar so how can it possible be good for you?  Here is the definitive answer. EAT FRUIT! And here’s why.  While fruit does contain sugar it is digested and burned far differently than is the sweetener used in soft drinks, donuts, candy bars and cakes.  I could provide you with thousands of words on why fruit is good for you but you don’t need that.  What you need to know is this: it is almost impossible to over eat fructose by eating fruit.  If you need more details and the research behind the facts click on this link http://well.blogs.nytimes.com/2013/07/31/making-the-case-for-eating-fruit/?_r=0 Fruit can also help keep us from overeating according to Dr. David Ludwig, the director of the New Balance Foundation Obesity Prevention Center at Boston Children’s Hospital.  He says, “Unlike processed foods, which are usually digested in the first few feet of our intestines, fiber-rich fruit breaks down more slowly so it travels far longer through the digestive tract, triggering the satiety hormones that tend to cluster further down the small intestines.”

That brings us to the issue of artificial sweeteners.  There’s still a lot we don’t know about them and research is still being done but the scientific community generally believes that they are not harmful.  They urge caution, though, and say that if you must have something sweet, go with the artificial variety preferably Stevia.  But, the jury is still out and its best to avoid all sweeteners if possible.  You can find more details in the report from CNN’s Dr. Sanjay Gupta.  http://www.everydayhealth.com/sanjay-gupta/myths-and-facts-about-sugar-substitutes.aspx

While there’s no medical evidence these sugar substitutes are dangerous, a recent study suggests they don’t guarantee weight loss either. Researchers from the Yale University School of Medicine found that eating foods with artificial sweeteners when we’re hungry or tired increases the likelihood of choosing higher-calorie foods later on.

“We still don’t fully understand the long-term effects of artificial sweeteners,” says Alexandra Kaplan Corwin, a registered dietician in the division of pediatric endocrinology and diabetes at The Children’s Hospital at Montefiore Medical Center in New York City. “Though the [U.S. Food and Drug Administration] has said they’re safe and the National Cancer Institute says they don’t cause cancer, we still don’t really know if there are long-term health consequences.”

Conclusion

 We’ve discussed obesity, it’s causes, the dangers of sugar and the advantages of eating more fruit.  Now the ultimate question, if you are obese, how do you lose that excess weight? Most experts will tell you that almost any program will help you lose weight.  The real trick, though, is losing it and keeping it off. It would be quite easy to list a number of diets and let you choose, but that would not be helpful because everyone’s condition is different.  We suggest that your very first step is to talk to your primary care physicians about the options he or she believes best suit you. Your physician knows your medical history and is far better able to make wise recommendations that the writer of a blog.  What I can say without fear of contradiction is that before you take on any weight loss program you must first assess your total medical condition. If you do not you could be headed for trouble. Your doctor will either make diet recommendations or direct you to someone who can.

Chances are that if you read this blog you are have more than a passing acquaintance with the Internet and will continue to do some research on your own on how to get rid of those excess pounds.  Well, we anticipated that and found one link in particular that might offer significant help. http://www.cdc.gov/healthyweight/index.html  Clicking here will lead you to scores of sites that can help you achieve the weight loss goals you seek. 

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Feeling better than ever at age 76

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

Bob’s NewHeart — The Impossible Dream

As the group I founded, Facebook’s Organ Transplant Initiative (OTI) grows so do the number of questions that we get. There are so many people who are deathly ill and waiting for organ transplants and they all have a multitude of questions. That waiting period can be frightening because because patients really are forced to face their mortality.

My heart transplant was almost 8 years ago so while not an expert I have some experience that might interest both pre and post transplant patients.

Those awaiting organs want to know about “The call” how long I was on the list and whether recovery from the surgery was difficult.

Those who are new recipients are always interested in what lies ahead. I’m hoping this blog answers some of those questions.

Every transplant patient is different, our bodies, minds and conditions are different. My story speaks to my situation. I hope it helps others have a better understanding of what it’s like to be told you are dying and how it feels to get the “Gift of life.”

I wrote the following blog about two years ago. It is my story. I’d like to hear yours and would also appreciate any comments you choose to make.

Bob's NewHeart

“Some men see things as they are and say why.  

I dream things that never were and say, why not”

George Bernard Shaw

This is post number 200 in the Bob’s Newheart Series of blogs on organ donation/transplantation and related issues

On February 17, 2014 I will turn 75.  It is an incredible feat for someone who abused his body as badly as I did.  By my count I have been dead three times. Once from sudden cardiac arrest, once during surgery in a hospital and I suppose once when they took my heart out to give me a new one (maybe that one doesn’t count).  I have to believe that I am only alive today because I was given a mission to do everything in my power to help others who face critical and/or life threatening illnesses.  The social media offer me that opportunity and I have gladly…

View original post 8,480 more words

From Farm to Fork — How Safe Is Our Food?

The very food that we need to help us grow and live, could also cause us to become ill and die.   Food — we cannot live without it, but it can pose great danger.   Let’s look at cold hard reality.  Our food supply, our food storage systems and our cooking and eating habits may be responsible for a great deal of misery.  The Centers for Disease Control (CDC) estimates that contaminated food sickens approximately 76 million Americans, leading to some 325,000 hospitalizations and 5,000 deaths in the U.S. each year.

Food safety is particularly important to anyone with a compromised immune system because we just don’t have the ability to fight infections whether they are bacterial or viral.  Certainly people who have had organ transplants fall into that category.  Transplant recipients must be especially careful.

As I started to research this posting the first question that popped into my mind was, “Which foods are most likely to make me sick. I found this list of the top ten from the Center for Science in the Public Interest as reprinted in the Fiscal Times

1) Leafy Greens

Lettuce and spinach may be on the top of most nutritionists’ lists, but they’re also among the foods most linked to outbreaks of illness. The contaminations often starts at the farm through contact with wild animals or manure.

*Source: The Center for Science in the Public Interest

– See more at: http://www.thefiscaltimes.com/Media/Slideshow/2013/12/02/10-Foods-Most-Likely-Make-You-Sick#sthash.CTYjKR8I.dpuf

2) Eggs

The risk for salmonella makes eggs the second-most popular source of food-based illnesses. Consumers can protect themselves by fully cooking all eggs and eating or storing eggs promptly after cooking.

3) Tuna

If not properly stored immediately after being caught, tuna begins to decay and can release scrombotoxin, which can cause food poisoning.

4) Oysters

Raw or undercooked oysters can breed vibrio bacteria, which can cause mild food poisoning in healthy individuals and life-threatening illness among those with a weakened immune system. Best practices in preparing oysters is to discard any open shells before cooking, and any shells that didn’t open while cooking.

5) Potatoes

Baked potatoes become breeding grounds for botulism when they’re wrapped in foil and left out to cool too long. Unwrap potatoes after baking them, and store them in a cool, dark place before cooking.

6) Cheese

Sticking with pasteurized cheese greatly reduces the risk of bacteria, but some soft cheeses—even those made with pasteurized cheese—are vulnerable to contamination during the cheese-making process.

7) Ice Cream

Everyone may scream for this summer treat, but when it’s made with undercooked eggs the cold stuff can become dangerous. Even store-bought ice cream can breed bacteria when it’s put back in the freezer after unfreezing.

8) Tomatoes

Salmonella can contaminate tomatoes on the farm via the roots, flowers or cracks in the skin. If an infected tomato is eaten raw, it has a high risk of infecting the person who consumers it.

9) Sprouts

The humid settings ideal for cultivating sprouts are also model conditions for salmonella, listeria and E. Coli. The U.S. Department of Health and Human Services recommends that children, the elderly, pregnant women, and those with a weakened immune systems should avoid eating sprouts all together.

10) Berries

Strawberries, blackberries, and blueberries have been linked to a number of food-borne illness outbreaks in recent year. Last summer, a hepatitis A outbreak the sickened 150 people was traced back to frozen organic berries.

The Importance of Temperature

Inadequate food temperature control is the most common factor contributing to food borne illness. Disease causing bacteria grow particularly well in foods high in protein such as meats, poultry, seafood, eggs, dairy products, cooked vegetables such as beans, and cooked cereal grains such as rice. Because of the high potential for rapid bacterial growth in these foods they are known as “potentially hazardous foods.”

Temperature Danger Zone

The temperature range at which bacteria grow best in potentially hazardous foods is between 41F. and 140F. The goal of all temperature controls is to either keep foods entirely out of this “danger zone” or to pass foods through this “danger zone” as quickly as possible.

So now you know which foods may pose the greatest threat to your health, but there are other factors that should concern us as well.  For example:

America’s food safety system has not been fundamentally modernized in more than 100 years.

Twenty states and D.C. did not meet or exceed the national average rate for being able to identify the pathogens responsible for foodborne disease outbreaks in their states.

Ensuring the public can quickly and safely receive medications during a major health emergency is one of the most serious challenges facing public health officials.  Sixteen states have purchased less than half of their share of federally-subsidized antivirals to use during a pandemic flu outbreak.

The main culprits are familiar. They include:

• Salmonella, bacteria that cause over 1.5 million illnesses per year. These commonly reside in uncooked poultry and eggs. Recent outbreaks have been linked to peanut butter, alfalfa sprouts and tomatoes.
• E. coli 0157:H7, a dangerous bacterial strain that can cause kidney failure, turns up disproportionately in ground beef. Lately it’s been linked to spinach and pre-made cookie dough. (For a complete list, see the full report, which details also the geographical distribution of food-borne illnesses in the U.S.) You can read and learn more here http://tinyurl.com/k64har2

There are three types of hazards in a food manufacturing process: physical, chemical and biological. Foreign objects are the most obvious evidence of a contaminated product and are therefore most likely to be reported by production or by consumer complaints. However, they are also less likely than chemical or biological contaminants to affect large numbers of people.

Attributing illness to foods is a challenge for several reasons.  There are thousands of different foods, and we eat many varieties prepared in different ways, even in a single meal.  For the vast majority of foodborne illnesses, we simply don’t know which food is responsible for an illness.

One way to develop a fairly accurate estimate is to use  data collected during investigations of a food illness outbreak.   These investigations provide direct links between foodborne illnesses and which foods are responsible for them.

According to the National Institute of Allergies and Infectious Diseases, there are more than 250 known foodborne diseases. They can be caused by bacteria, viruses, or parasites. Natural and manufactured chemicals in food products also can make people sick. Some diseases are caused by toxins or poisons from the disease-causing microbe or germ, others are caused by your body’s reaction to the germ.

Types of Foodborne Diseases as supplied by the National Institutes of Health (click on each one for details including symptoms and treatment or click this link for the NIH website http://www.niaid.nih.gov/)

Botulism, Campylobacteriosis, E. coli, Hepatitis A, Norovirus Infection, Salmonellosis, Shigellosis, Prevention

So how do you avoid these unpronounceable diseases?  Besides the information provided on the links to each disease, you might also want to make note of the following helpful suggestions

No matter how busy you are, from top to bottom, a clean kitchen is a main line of defense for your family and the prevention of food poisoning.  You simply must eliminate the breeding grounds for dangerous bacteria.

•  Wash your hands often – front and back, between fingers, under fingernails – in warm soapy water for at least 20 seconds (or two choruses of “Happy Birthday”) before and after every step in preparing or eating foods. That includes your kitchen helpers, such as children.
• Clean all work surfaces often to remove food particles and spills. Use hot, soapy water. Keep nonfood items – mail, newspapers, purses – off counters and away from food and utensils. Wash the counter carefully before and after food preparation.
• Wash dishes and cookware in the dishwasher or in hot, soapy water, and always rinse them well. Remember that chipped plates and china can collect bacteria.
• Change towels and dishcloths often and wash them in the hot cycle of your washing machine. Allow them to dry out between each use. If they are damp, they’re the perfect breeding ground for bacteria.
• Throw out dirty sponges or sterilize them by rinsing the sponge and microwaving it for about two minutes while still wet. Be careful, the sponge will be hot.

Pay close attention to the refrigerator and the freezer – shelves, sides and door – where foods are stored. Pack perishables in coolers while you clean or defrost your refrigerator or freezer.

Splatters inside your microwave can also collect bacteria, so keep it clean.

Physical Hazards

We’ve talked a lot about diseases and illnesses but our health is also subject to physical hazards.  You can view a University of Nebraska Slide show on the subject here: http://tinyurl.com/k6k4qow

What is a physical hazard?

We’ve all heard the stories about Rocks, insects and other things showing up in soda and beer cans.  While those instances are rare, they still happen.  Any extraneous object or foreign matter in food which may cause illness or injury to a person consuming the product is a physical hazard. These objects include bone or bone chips, metal flakes or fragments, injection needles, BB’s or shotgun pellets, pieces of product packaging, stones, glass or wood fragments, insects, personal items, or any other foreign matter not normally found in food.

The 8 most common food categories implicated in reported foreign object complaints are bakery products, soft drinks, vegetables, infant’s foods, fruits, cereals, fishery products and chocolate and cocoa products.  Below you will find a list of hazards, their effect and the treatment.  You can find more detailed information by clicking on this link http://tinyurl.com/mbktawq

These materials have been found in food and can cause severe trauma, bleeding, cuts and even death.  In many cases surgery is required to correct the damage caused by; Glass, wood, stones, bullets, BBs, needles, jewelry, metal, .Insects and other contaminated material, building materials, bone, plastic and personal effects

As with any topic it is sometimes difficult to separate fact from fiction.  There are so many rumors, old Wives tales and myths people often think they are doing the right thing when in fact they may be making matters worse.  We can’t dispel all the rumors, but we can address a few.

Food Safety Myths Exposed

http://www.foodsafety.gov/keep/basics/myths/

We all do our best to serve our families food that’s safe and healthy, but some common myths about food safety might surprise you.

MYTH: Food poisoning isn’t that big of a deal. I just have to tough it out for a day or two and then it’s over.

FACT: Many people don’t know it, but some foodborne illnesses can actually lead to long-term health conditions, and 5,000 Americans a year die from foodborne illness. Get the FACTs on long-term effects of food poisoning.

MYTH: It’s OK to thaw meat on the counter. Since it starts out frozen, bacteria isn’t really a problem.

FACT: Actually, bacteria grow surprisingly rapidly at room temperatures, so the counter is never a place you should thaw foods. Instead, thaw foods the right way.

MYTH When cleaning my kitchen, the more bleach I use, the better. More bleach kills more bacteria, so it’s safer for my family.

FACT: There is actually no advantage to using more bleach than needed. To clean kitchen surfaces effectively, use just one teaspoon of liquid, unscented bleach to one quart of water.

MYTH I don’t need to wash fruits or vegetables if I’m going to peel them.

FACT: Because it’s easy to transfer bacteria from the peel or rind you’re cutting to the inside of your fruits and veggies, it’simportant to wash all produce, even if you plan to peel it.

MYTH: To get rid of any bacteria on my meat, poultry, or seafood, I should rinse off the juices with water first.

FACT: Actually, rinsing meat, poultry, or seafood with water can increase your chance of food poisoning by splashing juices (and any bacteria they might contain) onto your sink and counters. The best way to cook meat, poultry, or seafood safely is tomake sure you cook it to the right temperature.

MYTH: The only reason to let food sit after it’s been microwaved is to make sure you don’t burn yourself on food that’s too hot.

FACT: In FACT, letting microwaved food sit for a few minutes (“standing time”) helps your food cook more completely by allowing colder areas of food time to absorb heat from hotter areas of food.

MYTH: Leftovers are safe to eat until they smell bad.

FACT: The kinds of bacteria that cause food poisoning do not affect the look, smell, or taste of food. To be safe, use our Safe Storage Times chart to make sure you know the right time to throw food out.

MYTH: Once food has been cooked, all the bacteria have been killed, so I don’t need to worry once it’s “done.”

FACT: Actually, the possibility of bacterial growth actually increases after cooking, because the drop in temperature allows bacteria to thrive. This is why keeping cooked food warmed to the right temperature is critical for food safety.

MYTH: Marinades are acidic, which kills bacteria—so it’s OK to marinate foods on the counter.

FACT: Even in the presence of acidic marinade, bacteria can grow very rapidly at room temperatures. To marinate foods safely, it’s important to marinate them in the refrigerator.

MYTH: If I really want my produce to be safe, I should wash fruits and veggies with soap or detergent before I use them.

FACT: In FACT, it’s best not to use soaps or detergents on produce, since these products can linger on foods and are not safe for consumption. Using clean running water is actually the

MYTH: Only kids eat raw cookie dough and cake batter. If we just keep kids away from the raw products when adults are baking, there won’t be a problem!

FACT: Just a lick can make you sick!
No one of any age should eat raw cookie dough or cake batter because it could contain germs that cause illness. Whether it’s pre-packaged or homemade, the heat from baking is required to kill germs that might be in the raw ingredients. The finished, baked, product is far safer – and tastes even better! So don’t do it! And remember, kids who eat raw cookie dough and cake batter are at greater risk of getting food poisoning than most adults are.

MYTH: When kids cook it is usually “heat and eat” snacks and foods in the microwave. They don’t have to worry about food safety – the microwaves kill the germs!

FACT: Microwaves aren’t magic!
It’s the heat the microwaves generate that kills the germs! Food cooked in a microwave needs to be heated to a safe internal temperature. Microwaves often heat food unevenly, leaving cold spots in food where germs can survive. Kids can use microwaves properly by carefully following package instructions. Even simple “heat and eat” snacks come with instructions that need to be followed to ensure a safe product. Use a food thermometer if the instructions tell you to!

MYTH: When kids wash their hands, just putting their hands under running water is enough to get the germs off.

FACT: Rubbing hands with water and soap is the best way to go!
Water is just part of what you need for clean hands! Washing hands properly is a great way to reduce the risk of food poisoning. Here’s how: Wet your hands with clean, running water and apply soap. Rub them together to make a lather and scrub them well; be sure to scrub the backs of hands, between fingers, and under nails. Continue rubbing for at least 20 seconds. Sing the “Happy Birthday” song twice to time yourself! Rinse hands well under running water. Dry your hands using a clean towel, paper towel, or an air dryer.

MYTH: My kids only eat pre-packaged fruits and veggies for snacks because those snacks don’t need to be washed before they eat them.

FACT: Read your way to food safety!
Giving your kids healthy snacks is a big plus for them! But just because produce is wrapped, it doesn’t always mean it’s ready to eat as is. Read the label of your product to make sure it is says: “ready-to-eat,” “washed,” or “triple washed.” If it does, you’re good to go! If it doesn’t, wash your hands and then rinse the fruits or vegetables under running tap water. Scrub firm items, such as melons and cucumbers, with a clean produce brush. Dry with a clean cloth towel or paper towel to further reduce germs that may be present.

While federal, state and local agencies provide a valuable service with their contributions to our food safety, the primary responsibility is yours.  Too many of us become too careless with our food preparation and storage procedures and each of us needs to pay far more attention to the cleanliness of the areas in which we prepare food and to the cleanliness of the food itself.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

OPOs — the Quiet Angels

You rarely ever hear about them, they don’t really seek publicity and when they do talk they always give the credit for their life saving activities to others.  The “They” of which I’m speaking are Organ Procurement Organizations (OPOs).  They are the “Middle man” so to speak, they are the ones who make all the arrangements to get transplantable organs to the people who need them.

When the National Organ Transplant Act was signed into law in 1984 it directed that organ allocation would be managed on a national basis through a public-private partnership.  The United Network for Organ Sharing (UNOS) is the private non-profit agency that works under contract with the U.S. Department of Health and Human services to coordinate their national list of people who need transplants with available organs.  UNOS has its headquarters in Richmond, Virginia.

OPOs were also mandated by the 1984 act and there are 58 of them working on the local and regional level.  They are charged with two tasks. 1) increasing the number of registered donors, and 2) coordinating the donation process when actual donors become available.  When they learn of the availability of an organ or organs, OPOs evaluate the potential donors, check the deceased’s state donor registry, discuss donation with family members, contact UNOS, run a match list, and arrange for the recovery and transport of donated organs. They also provide bereavement support for donor families and volunteer opportunities for interested individuals.

OPOs employ a variety of staff including procurement coordinators, requestors, specialists in public relations, communication, and health education, as well as administrative personnel.  All of these people are specially trained for their jobs.

LifeSource is the OPO that serves more than 6 million people in communities across Minnesota, North Dakota, South Dakota and portions of western Wisconsin and I know them well.  As a consultant I worked closely with them for many years.  I can personally vouch for their expertise, compassion and effectiveness because I’ve seen them in action.

 

To be employed at LifeSource is not like employment elsewhere.  The people there don’t go to work every day, they embark on a journey to save lives.  That’s the attitude that permeates the entire organization.  Everything they do, every job in the organization is focused on one thing, saving lives. All you have to do to know their culture is to look into the eyes of any one of their people when they are talking about what they do and you will feel the sincerity and sense of mission.

Nearly three years ago the New York Times did a story on LifeSource. It is a magnificent piece that clearly illustrates what an OPO does and how their work affects each and every one of us. Once you read it, you’ll have a new understanding and appreciation for what these marvelous people do.

Read “After Death, Helping to Prolong Life” by clicking on this link  2012 New York Times article

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor a thttp://www.donatelife.net.  It only takes a few minutes.

Prayer — Does It Work to Help Cure Illness?

“There is a mighty lot of difference
between saying prayers and praying.”

John G. Lake

 

Let me start by saying that this is a “Think” piece.  What you are about to read are the conclusions I drew from the research I had time to conduct.  Another writer given the same amount of time and resources might have a different view.

I am penning this post so that the prayerful, sometimes prayerful, the skeptics and the cynics have a better understanding of the subject and of each other.

It is important to point out from the very beginning that with rare exception most religious organizations recommend prayer as a supplement to medical care.  Some, though, go much further: According to Religious Tolerance dot org   (http://www.religioustolerance.org/medical2.htm) they either:

• Teach that certain medical procedures are not allowed, or
• Recommend that members generally reject medical attention in favor of prayer.

Two of these groups are Christian Science and the Jehovah’s Witnesses.

We at Bob’s Newheart prefer the mainstream approach that allows for and encourages getting medical help when it is needed.  There is more than an adequate amount of scientific evidence to support the claim that medical intervention is more beneficial than prayer alone.

According to the New York Times about 300 children have died in the United States in the last 25 years after medical care was withheld on religious grounds.  http://www.nytimes.com/2009/01/21/us/21faith.html?_r=0

The courts often hear cases of medical treatment for children being withheld due to religious objections.  In the vast majority of those cases they have ruled in favor of treatment and against prayer being used as the only remedy.   We will return to this topic later.

Does prayer work?  That depends on what you mean by “work.”  If you are asking about the curative power of prayer well, there is a mixed bag of evidence on that one,  I was told once that if you torture Google long enough you can get it to c confess to anything  I believe that.  You can probably find just as much proof that prayer works as you can that it doesn’t.  There is an area, though, where we do know that it does offer some benefits to those who are doing the praying.  Not long ago researchers from Baylor University found that people who pray to a loving and protective God are less likely to experience anxiety-related disorders — worry, fear, self-consciousness, social anxiety and obsessive compulsive behavior — compared to people who pray but don’t really expect to receive any comfort or protection from God.

On the other hand, the same Baylor University research found that people who have more insecure attachments to a supreme being react differently.  If they feel rejected or that their prayers have gone unanswered they can suffer severe symptoms of anxiety and/or depression.  So does prayer work?  Yes, but perhaps not in the manner you might suspect.  Prayer and/or meditation can have a profound effect on your state of mind.  You can read more about the psychological effects of prayer here at Spirituality and Health.  http://tinyurl.com/ngntzva.

The real question, though, or the one most people are asking is, “Will prayer cure disease, save dying people, or bring me whatever I’m asking for?  To be even more precise the question might finally be boiled down to, “Do prayers get answered.”

Science and religion are often at odds on a number of topics but perhaps that’s because neither is very tolerant of or patient with the other.  The fact of the matter is that when put to scientific scrutiny some studies have clearly indicated that prayer can be a medical tool.

Psychologists tell us that there are three kinds of prayer, 1) egocentric prayer is when we pray for ourselves, 2) ethnocentric prayer is when you pray for another person and 3) geocentric prayer is when you pray for everyone.

A study of about 150 cardiac patients at the Duke University Medical Center included a sub-group who received ethnocentric prayer had the highest treatment success rate within the entire group. This was a legitimate study, too.  It was double blind which means that neither the researchers nor the patients benefiting from the prayers knew who was on the receiving end.  The results were similar in another legitimate scientific double-blind study that was done at San Francisco General Hospital’s Coronary Care Unit.  The “prayed for patients” showed a greatly diminished need for critical care, maintenance medications and heroic measures.  There were also fewer deaths.  All of that suggests somehow, something intervened.  Just exactly what that variable might be is unclear but there most definitely was a connection.

The great difficulty in researching the topic is that there are so many different points of view and they all claim to be the most accurate source.  I decided to use information from those who most clearly communicated their thoughts to me regardless of religious, philosophical or political designation. So, let me begin.

It seems to me there are five groups of people.

1. Those who strongly believe in the power of prayer and are devout in their religious convictions. They are often unshakeable even when it appears to others that their prayers have been rejected.
2. Those who pray only in emergencies or when they really want or need something.
3. Those who pray, but only because they are afraid not to pray. They hope some good will come of their efforts. I’ve known many who pray because they were taught to do so and don’t know what else to do even though they are doubt the effectiveness of the practice.
4. Those who are ambivalent or skeptical. They tolerate prayer but don’t engage in it themselves
5. Those who are more cynical and for the most part reject prayer and religion as an exercise in futility and a waste of time.

Why do people pray?  When you Google the question, “What is
faith?” you have a choice of 801,000,000 results.  Eight hundred million.  Obviously I did not read but a tiny fraction of them but I did look at a few. The definitions I selected had seemed to best characterize the people I know who appear to be of great faith.  There is a very fine line to walk between religion and faith but I’ll attempt the balancing act anyway. .

What is faith?

One site tells us, “…..faith is such a powerful gift from God that with just a tiny measure of it, the size of a mustard seed, you can move mountains.”

Still another definition is, “Faith is a sacred, deep, emotionally involved kind of trust that a power greater than you can change anything.  Faith requires a trust in your belief that consumes your whole being. “

And finally, “Some argue that faith is a decision. Others understand it to be a gift. Many have never known their life without it, while others can point to a particular moment when faith became a part of their experience.  No matter, faith is simply a strong belief that a greater power exists and is in charge of everything.” Somewhere in one of those three definitions you may find a kernel of the element of your faith or lack of it.

If you have “Faith” you probably pray and that’s a word that also needs defining.  What constitutes prayer?  One definition says, “Prayer includes respect, love, pleading and faith. Through a prayer a devotee expresses his helplessness and endows the task to God. Prayer, it seems, is a very personal way for an individual to communicate with his or her God. In most cases people who pray are asking for something either for themselves or for others.  Some believe they always get answers to their prayers and that they actually talk with God and hear his responses.  Others pray and hope they are heard.  People have different experiences with prayer some good and some bad.

Are Prayers Answered?

The Huffington Post is certainly not highly regarded for their expertise in prayer but some of the writers have interesting thoughts.  For example, in story from May of 2012 with the headline,” Prayer: What Does The Science Say? The post notes that an overwhelming 83 percent of Americans say that God answers prayers, but their reaction is a gut feeling and there’s little or no scientific validation offered.  Two researchers with opposing positions on the issue have written interesting books to explain their views.  If you are interested in learning more on either or both let me refer you to  Tanya Marie Luhrmann, an anthropologist at Stanford and author of the book “When God Talks Back” and Michael Shermer, executive director of the Skeptics Society and author of “The Believing Brain.”

 

One thing is clear.  Religion and prayer appear to be inseparable. If you engage in prayer or some kind of communion with a higher power it likely was heavily influenced by your experience and/or exposure to religion, but the water gets a little murky there because according to the Pew Foundation more than one-quarter of American adults (28%) have left the faith in which they were raised in favor of another religion – or no religion at all. If change in affiliation from one type of Protestantism to another is included, 44% of adults have either switched religious affiliation, moved from being unaffiliated with any religion to being affiliated with a particular faith, or dropped any connection to a specific religious tradition altogether.

When it comes to the effectiveness of prayer, there are as many answers as there are people. Most of the answers, though, are based on anecdotal rather than scientifically based evidence.

There are those who believe deeply that prayer brings results and therefore comfort and there are others who have no faith in faith and care even less for religion whether organized or not.

One can probably assume that many if not a majority of prayers have to do with health and longevity and our health care system has deep faith based roots that are made obvious with every hospital admission. Patients are almost always asked for religious preference so if an emergency arises the institution can satisfy the patient’s needs in that area.

People of faith are willing to accept a negative prayer response more than those without faith by saying, “Well, that’s the will of God.”

at the same time, though, a cynic might ask, “If prayers work, why do so many prayerful, religious people die horrible deaths?  Prayer vigils are organized often for sick people and they die anyway,” say the disbelievers.

I guess the answer depends on who you ask. The atheist would say, “No. Prayer can’t work because there is no God.”  For them it is a cut and dried issue.

The answer from agnostics might be a little more complex.  That particular group is more likely to equivocate because they claim neither faith nor disbelief in God.

One could site any one of a number of biblical passages regarding prayer.  Here are just a few:

John 15:7 If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.

Philippians 4:6 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

Mark 11:24 Therefore I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.

Most of the major religions, as pointed out earlier, believe a combination of prayer and medical science is the answer to most health issues.  Some take a harder line than others.

Shortly after my heart transplant in 2007 I started this blog and a Facebook group, Organ Transplant Initiative (OTI), which now has nearly 4200 members.  Recently I asked members to give me examples of how prayers worked or didn’t work for them.

Jon Claflin (He requested that he be identified) sent these words to me.

“Ever since I was a child, prayer has confused me. Raised a Christian, I was taught that God has a plan and that He knows all. These two concepts run counter to me interfering with this plan by praying and asking God to make an exception or allow for a different outcome. Of course this is impossible as God knows the outcome anyway.

As an adult, my views on the futility of prayer only increased. As a student of logic and skepticism, I realized that prayer is an unfalsifiable concept as no matter what transpires, the believer can claim that prayer worked. If the promotion at work didn’t come through or their aunt died, they can simply claim that this was God’s will. And if their aunt survived or the promotion came through, then (again) prayer did its job.

This is all the personal belief of the individual turning to prayer and I wouldn’t seek to change this, but when prayer is artificially elevated the level of a legitimate healthcare choice, I do take issue. Heart failure is a serious life or death situation and inserting superstition or talking to invisible deities into this predicament as an alternative to medicine is extremely dangerous, and choosing prayer over evidence-based medicine is deadly. Until prayer can stand up to the rigorous double-blinded testing that medical therapies do, I opt for medical intervention over prayer.”

Other members had a different perspective and this letter is pretty typical of the kind of responses I got. She believes her prayers were answered.  Who are we to say she is wrong?

“Almost a year ago now my son had been on PD for 16 months and was feeling sicker by the day. Also, he had developed a hernia most likely FROM PD and we were told he’d have to go on hemodialysis until after he had hernia surgery & had completely healed. I was so heartbroken for him that I went to bed that night desperate – praying & crying till I fell asleep, begging God to just show me what more I could do to help him. I woke up the next morning with the idea to make a Facebook page to find a living kidney donor. I just KNOW that’s what God TOLD me to do. A young man who was a former co-worker of my OTHER son’s emailed me & said he’d be willing to test, and in May it will be the 1 year anniversary of my son’s transplant. His donor has become a member of the family!! He is truly my boy’s miracle!! I love to tell this story!”

That story was told with conviction and with love and while some readers may want to dismiss her contention that God told her what to do, why would they?  To what end?  Why bother?  If she is happy with the outcome it shouldn’t be anyone’s business what she believes.

Of all the responses I got to my Facebook query, no one suggested that prayer alone would solve medical problems.

From what I have been able to gather, a combination of prayer and medical science certainly can’t hurt and it just may be of some help.  A story in the Underground Health Reporter said: “Not only can effects of prayer be an important curative tool in times of crisis, but it can also promote a sustained state of well-being. A fascinating study conducted by researchers from the Virginia Commonwealth University in Richmond analyzed the lives of 1,902 sets of twins.

It turned out that twins committed to spiritual lives tended to have lower rates of:

• Depression
  • Addiction
  • Divorce

The Richmond study indicated that active involvement in a spiritual community is strongly linked to overall stability and health.

This is Your Brain on God

Most extraordinary of all is the way prayer has been shown to produce physical changes in the brain. Barbara Bradley Hagerty put together a 5-part NPR series called, “Is This Your Brain on God?” In the series, Hagerty explores a possible reason that prayer has such restorative and preventative potential. That is, scientists can see noticeable differences between the brains of those who pray or meditate often and those who don’t.

One scientist in particular had published astonishing findings. His name is Andrew Newberg, and he’s a practicing neuroscientist at the University of Pennsylvania and author of How God Changes Your Brain. Newberg has been scanning the brains of people with religious convictions for more than 10 years. He says meditation in particular has a very visible effect on the brain’s frontal lobe. He believes that the neurological effects of prayer and meditation can be long-lasting. Read more: http://undergroundhealthreporter.com/effects-of-prayer-can-lead-to-healing/#ixzz3RGrtNsjB

So that’s my report on prayer.  I came away with this thought.  If I or someone I love has a very serious disease I will do two things.  I likely will say a prayer or two and then find the best medical team money can buy.  Maybe….just maybe the medical team is the answer to   a prayer.

 

All I know is that when I pray, coincidences happen; and when I don’t pray, they don’t happen.”

Dan Hayes

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Thank you donors and donor families

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor a thttp://www.donatelife.net.  It only takes a few minutes.

Hepatitis C — There are Cures for the Disease, But Not the Stigma

By Bob Aronson

 
What it feels like to have Hepatitis C

“I was always exhausted to the point that I could not walk a block without having to stop and sit down to rest. The fatigue I felt was so intense that completing just a simple once over lightly housecleaning took days because I had to stop and rest so often. Nausea was a constant companion and my appetite came and went.  Sometimes I would go all day without eating which seems to add to my fatigue.  And then there’s the pain. The pain in the area around my liver was almost unbearable. Then I started the Interferon treatment and it all got worse“ (The words of a Hepatitis C. Patient).

Hepatitis C – The Stigma

“The stigma that surrounds Hep C is reminiscent of the early 80’s when the AIDS epidemic came to the forefront. The idea that only IV drug users get HCV is incorrect, much like the idea that only gay men can get HIV is incorrect. Many of us got Hep C through transfusions, some who worked in hospitals got it from accidental needle sticks.  I am reluctant to disclose my disease because I’m tired of hearing, “So you were an IV drug user, huh” I wasn’t — yet people seem to want to blame us for the disease we have, some seem to think we deserve it.  I am sick, what difference does it make how I got the disease, not a single one of us asked for it, no one would want to live this way.  I wish people would be more understanding instead of so judgmental. (The words of another HCV patient)

 The quotes above are from hepatitis C Patients.  For privacy purposes I have withheld their names.  As you read on you will find other anonymous quotes.  I can vouch for their veracity,

There is a Cure for Hepatitis C , But the Epidemic is Growing

 Here’s What You Need To Know

 The Hepatitis C Virus (HCV) is a blood disease.  You can only get it if the blood of an infected person somehow gets into your blood and attacks your liver.  It is not airborne — sneezes and coughs don’t spread it, only blood does.  Not only does Hepatitis C have the power to disable or kill its victims, the people who are stricken with it also carry its stigma and in a way are blamed for getting the illness that could take their lives.  We will address the stigma issue more later, along with the facts and myths surrounding the disease.

The hepatitis C virus was discovered in 1989. Prior to that, it was associated with blood transfusions, but was called non-A, non-B hepatitis because the virus could not be identified.  Up until now the most effective treatment for HCV was based on the drug Interferon, which was effective in some patients but carried some heavy duty side effects with it.  While some internet medical sites say “Interferon has manageable side effects,” that’s not the story that patients tell.  There are thousands of reports of debilitating fatigue, weakness (asthenia) so great as to limit one’s ability to walk very far, drowsiness, lack of initiative, irritability and confusion.   Often, especially in patients with a history of depression, the condition worsens to include thoughts of suicide and in a few cases committing the act itself.  While some people tolerated Interferon better than others, few tolerated it well and almost all patients prayed for something, anything that didn’t make you feel worse than the disease itself.

Interferon in conjunction with the toxic chemotherapy drug Ribaviron has been the standard treatment for HCV until recently.  The interferon side effects are bad enough, say patients, but when combined with the drug Ribaviron the reaction can and often does get even worse. Some patients report the reaction to the combination of drugs was so negative it had become life threatening.

Finally by the end of 2014 some highly effective, interferon-free, Hepatitis C oral treatments or “cures” were approved.   Gilead Sciences had two,  Sovaldi and Harvoni and AbbVie’s introduced Veikira Pak. These effective meds come with a high price tag, however.  It is hoped that the competition from several newer and yet unapproved drugs will bring the price down

One drug in particular, Gilead Science’s Harvoni, seems to be getting favor from the medical community and it is indeed a cure.  In clinical trials, Harvoni cured hepatitis C after 3 months of treatment in about 94% of people who took it. Cure rates approached 100% after 6 months in patients whose hep C was harder to treat, because of cirrhosis (source: Gilead Sciences)

Harvoni most certainly is a cure for those who can afford it.  The drug while highly effective, comes with an equally high price tag. That 3 month treatment program mentioned earlier can cost $95,000 and as of this writing many insurance companies are not yet on board.  One source told us, “the protocol for my mom is 24 weeks this treatment cost $ 204,120.00”  There is financial assistance available and links are listed elsewhere in this blog.

Harvoni is well researched and while calling it a “Cure” is accurate it is only recommended for patients with genotype 1a and 1b. Other genotypes still have to use Sovaldi (also a Gilead product) in conjunction with Ribaviron and some genotypes still have to use both Ribaviron and Interferon.

Sovaldi was released in December of 2013 but still had to use Ribaviron for all G types. Harvoni is a combination of Sovaldi and Ledipisvir and eliminated the need for Ribaviron in 1a-1b’s and was released in Oct 2014.

Space doesn’t allow us to take  a detailed look at all the HCV treatments and we can’t do justice to Harvoni the Gilead Sciences cure either.  We applaud the companies that developed these drugs, but no matter how wonderful the cure is, the disease continues because we still don’t have a vaccine that prevents people from getting the disease in the first place.  The cure is only effective with people who have the disease and  by the time it is identified they usually have already suffered incredible damage.  We must keep pushing for a vaccine that will wipe out the disease before it can infect anyone.  Right now there is no vaccine for HCV.  They are working on it, but so far such preventive measures have proven to be illusive and the disease continues to pile up victims. It now kills more Americans than AIDS. If you want more information about the HCV and the various treatments these links will help.

Viekera pak https://www.viekira.com/

Harvoni  http://www.gilead.com/~/media/Files/pdfs/Policy-Perspectives/ExpandingAccesstoHCVTreatments10214.pdf

If you have Hepatitis C and your physician has recommended any of the treatments but you are unable to pay the price of the medicine you should know this.  Harvoni manufacturer, Gilead offers free meds to the underinsured or patients who have been denied coverage by their insurance provider, if they meet financial requirements. There has been a great deal of confusion and misinformation about the “Coupon” offered by Gilead, so here’s the straight story.  The copay coupon is available to anyone who is insured.  It is not based on income and will pay up to 25% of the copay amount. The only restriction on the copay assistance is if the patient is covered by Medicaid or another government program, then they are not eligible. There are no financial requirements connected to the coupon.

People on Medicare with part D ( which they pay for) are eligible for assistance from Gilead if they are denied by Medicare or underinsured.  They are not eligible for the coupon. They also have to sign a form saying they will not try to get reimbursed for any out of pocket expenses. The coupon is for those who have private insurance with a copay.

There are other resources as well and you can explore them by clicking on the links below.

 

http://hepc.liverfoundation.org/resources/what-if-i-need-financial-assistance-to-pay-for-treatment/

http://www.hepmag.com/articles/hepatitis_paps_copays_20506.shtml

http://tinyurl.com/orbec8m

http://tinyurl.com/njbl3jm

Health experts estimate that over 3.2 million Americans have Hepatitis C and that worldwide the number of infected people is close to a quarter of a billion.  Many, if not most, may be financially unable to get the cure.

 “What is Hepatitis C and how do you get it?”

 As noted earlier, Hepatitis C is a blood disease that attacks the liver.  Simply put, in order to contract it the blood of an infected person must find its way into your blood.  Here are the facts that dispel the myths. (http://www.hepmag.com/articles/2512_18750.shtml)   You can get HCV from:

• Injecting drugs with needles that have been used by others.

• Needle-stick injuries and exposure of open wounds or mucous membranes to infected blood.
• Transfusions.  Blood or blood-product transfusion (especially before 1992).

Unlikely sources of infection.

• Piercing and tattoos. It is unlikely you can get HCV from tattoos done in a licensed, commercial tattooing facility. However, transmission of Hepatitis C (and other infectious diseases) is possible when poor infection-control practices are used during tattooing or piercing such as that done in prisons and other unregulated settings. More research is needed to be sure.
• Sexual activity. it is generally believed that HCV cannot be transmitted through semen or other genital fluids, unless blood is present. While the risk of becoming infected with HCV through unprotected sexual intercourse is very low, medical  experts urge everyone to use safe sex practices whether HCV is involved or not.
• Giving Birth. Women who have HCV run less than a 10 percent chance of passing the virus to their babies during pregnancy or delivery,
• Breast Feeding It is also considered unlikely that HCV can be transmitted through breast feeding or breast milk unless the woman’s nipples are bleeding.
• Sharing a drug snorting straw.  Yes, there is a chance, albeit, a very low one of being infected with the hepatitis C virus through sharing drug-snorting paraphernalia.  Hepatitis C is a disease of the liver, but the virus lives in the bloodstream. Snorting drugs, such as cocaine, heroin or methamphetamine, can cause damage to the tiny blood vessels in the nose, potentially resulting in traces of blood being deposited on the tip of the straw or other device. Sharing snorting paraphernalia isn’t a common mode of HCV transmission, but the threat exists.

Hepatitis C is a terrible disease.  Its symptoms often don’t show up for years and when they do it is because significant damage has been done.  Here are a few abbreviated patient’s stories about their disease, how they got it and the cost of the cure.

Patient story @ 1. “Harvoni is extremely expensive. It is I believe $1152.00 per pill. The protocol varies by 8, 12 and 24 weeks, depending on the amount of liver damage and viral load. Do I believe the price is fair? That’s a very hard question to answer. I think that it is necessary to look at the bigger picture.

 I have had HepC since between 1979 and 1985. I was in an auto accident and received several liters of blood and had several surgeries.  I was not diagnosed until 2002 when I was so fatigued that I could barely functionI subsequently did a 48 week course of the horrific drugs, interferon and ribivarin which led to horrific side effects, three times weekly injections of Neupogen and two times weekly injections of Procrit. My white cell count dropped so low that I was hospitalized, transfused and taken off treatment at 40 weeks. It took me 2 1/2 yrs to recover. I progressed from there to cirrhosis, liver cancer, ESLD and two liver transplants in 09. So, in the bigger picture, when adding up the cost of liver disease from HepC and all it’s complications the price seems fair.

 Patient Story number 2.  I had previously treated with interferon/ribavirin for 48 weeks with weekly injections of procrit along with the occasional transfusion. This treatment almost killed me and I have many chronic health issues as a result.

 I think Harvoni is extremely expensive, for those that don’t qualify for the co-pay offered by the manufacturer. I was able to receive that co-pay which was a total of $15 for my 12 week treatment. My husband and I were willing to pay whatever necessary for me to be treated by Harvoni because I have been symptomatic from the Hep c for over 10 years after being infected during a blood transfusion while giving birth to my daughter in the 70’s.

 Patient Story number 3. The price is fair when you compare total cure to a transplant (lets say $96,000 vs $500,000 minimum for a transplant).

The cost is always a factor. I was lucky and appealed to my insurance company after 2 denials. I had to supply some of the research to the reviewing doctors to educate them that even though it wasn’t FDA approved for transplant recipients, it was made specifically for my genotype and it was actually fewer drugs than sovaldi/olisio (they wanted me to take that and I held out for Harvoni)

 I think most of the people who have HepC got it years ago before they had identified non A/nonB as HepC. Mine was from a blood transfusion. I think today the blood supply is safe.

 My message to others is this, find a way to get on one of these cures. They aren’t nearly as bad as the old regimens that were brutal and that many of us have lasting effects from being on them. These are relatively side effect free and it is best to take care of this before your liver becomes ravaged by the disease putting you in line for a transplant. That is a long line and the chances of dying while waiting for a life saving liver are getting larger. So many people die everyday waiting. I’m finally on the road to health with a new liver and noting will stop me now.

The preceding testimony is real, the stories are true.  The names have been withheld to protect privacy, but we’ve only scratched the surface of the misery of Hepatitis C.  The disease is bad enough.  Patients don’t need the additional emotional pain caused by public misperception of the disease which is shrouded in myths that result in blaming the victim for getting the disease.  Even some medical professionals believe that if you have HCV you were probably a drug addict who was infected by using a “dirty needle.”  The truth is that fewer than half of those infected were drug users, but so what?  Do we blame the victim of a shooting who happened to stop at a store in a high crime area for being there?  Do we blame the carpenter who lost his fingers to a table saw for using it?  Do we blame the physician who treats Ebola patients for getting the disease herself?

Blaming the victim is mean spirited and unfair.  The supposition that all HCV patients were drug users is the product of rumor and not supported by facts.  But again, so what?  No one wants to have HCV.  No one purposely sets out to get it.  Just because you are in a position of risk, doesn’t mean you should be blamed for the resulting illness. It’s time we got the facts and showed some compassion and understanding.  Blaming people for their health problems helps no one, whether it’s Cancer, COPD, drug addiction, obesity or diabetes.  The fact is that most 21st century medical conditions are due to some combination of genetics, environment, and personal choice.  So unless you believe that each of us brings on our own misfortune, then it only makes sense to get the facts and set the record straight.

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Feeling better than ever at age 73

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me atbob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor a thttp://www.donatelife.net.  It only takes a few minutes.

So You Need an Organ Transplant. Here’s What You Need To Know.

By Bob Aronson

(Founder of this blog site and 2007 heart transplant recipient)

This blog is longer than most because it offers one-stop access to information that should save you hours of Internet research.  We hope this single click will lead you to the answers you need and deserve. .  

When You First Learn That You Need an Organ Transplant

There is no news that is much more disturbing than being told you are suffering irreversible organ failure and that the only solution is a transplant.  The news becomes even more difficult to bear when you learn that there is a critical shortage of transplantable organs.  Most of us meet that news with stunned silence at first.  The tsunami of thoughts related to organ failure renders our brains incapable of developing a rational response or even asking the right questions.  Usually it is only after leaving the Doctor’s office that the cobwebs begin to clear, and the fear of dying starts to generate questions.  They are a trickle at first and then become a torrent as broad as Niagara falls and as long as Angel Falls.

The questions start with the first news and seem to multiply as you learn about organ donation, about lifestyle while waiting for an organ, getting on the list, the surgery, paying for it, recovery and living with a transplant.  And – because everyone is different everyone has different questions.

As a heart recipient I’ve been through that gauntlet and struggled to find answers by spending endless hours on the internet, asking questions of physicians and others and reviewing my own experience.  Below you will find a few resources to get you started.  This is not a complete list, it doesn’t even come close but it does give you links to some resources that will at least head you in the right direction.

**This blog was developed for U.S. audiences. While there may be some applicability in other countries, each nation has different laws, requirements and approaches to donation/transplantation issues.   Make no decisions until you check with experts in your country. 

Transplantable Organs and Tissue

First it is important to understand which organs and tissues are transplantable.  Here’s the list.  Organs include the heart, kidneys, liver, lungs, pancreas, and small intestines.  Transplantable tissues include blood, blood vessels, bones, bone marrow, cartilage, connective tissues, eyes, heart valves, and skin.

Most organs are recovered from deceased donors, but in the case of kidneys and a part of the liver donation can be made by living donors to specific individuals.

The following resources should either provide you with the information you seek or at least lead you in the proper direction.

If you are a kidney, heart or liver transplant patient one of the very best information resources available is, “The Transplant Experience.”  It was developed by Astellas Pharma US, Inc.  which is a manufacturer of “Prograf,“ an anti-rejection drug.   You will find answers to most of your questions on this site, but there are other very useful links as well that we include in this posting.   http://tinyurl.com/q6heovg

Another excellent source is Web MD.  http://tinyurl.com/3vst3cf

And — still another from the Mayo Clinic this stirring “Nightline” video about the process.  http://tinyurl.com/nqzomf6

Organ Donation Key Myths and Facts

According to the American Transplant Association (ATA) (http://tinyurl.com/m42br82 )  There are over 123,000 people awaiting organ transplants in the United States, but only about 28,000 are performed each year.  That’s because the supply lags far behind the demand.  While over 90% of Americans believe in donating organs only about 40% ever get around to it.  The result is that about 7,000 men, women and children die each year waiting for an organ that never comes.

Why don’t people donate?  There are as many answers as there are people, but some believe that if you are in an accident and brought to an ER the medical people will let you die in order to get your organs.  That is simply not true.   ER teams are not even associated with transplant teams and most hospitals aren’t transplant centers anyway.  The ethics that bind medical professionals demand that they do everything possible to save your life and no thought, none, is given to taking your organs.  The ER people aren’t even the ones who make that decision.

The ATA says there are other myths as well.  For example:

Myth:

If you are rich or a celebrity, you can move up the waiting list more quickly.

Fact:

Severity of illness, time spent waiting, blood type and match potential are the factors that determine your place on the waiting list. A patient’s income, race or social status is never taken into account in the allocation process.

Myth:

After donating an organ or tissue, a closed casket funeral is the only option.

Fact:

Organ procurement organizations treat each donor with the utmost respect and dignity, allowing a donor’s body to be viewed in an open casket funeral.

Myth:

My religion doesn’t support organ and tissue donation.

Fact:

Most major religions support organ and tissue donation. Typically, religions view organ and tissue donation as acts of charity and goodwill. Donor Alliance urges you to discuss organ and tissue donation with your spiritual advisor if you have concerns on this issue.

 Myth:

My family will be charged for donating my organs.

Fact:

Costs associated with recovering and processing organs and tissues for transplant are never passed on to the donor family. The family may be expected to pay for medical expenses incurred before death is declared and for expenses involving funeral arrangements.

Organ Donation Facts

•  On average, 21 people die every day from the lack of available organs for transplant.
• Another name is added to the national transplant waiting list every 12 minutes.
• Seven percent of people on the waiting list—more than 6,500 each year—die before they are able to receive a transplant.
•  One deceased donor can save up to eight lives through organ donation and can save and enhance more than 100 lives through the lifesaving and healing gift of tissue donation.
•  Organ recipients are selected based primarily on medical need, location and compatibility.
•  Over 617,000 transplants have occurred in the U.S. since 1988.
•  Organs that can be donated after death are the heart, liver, kidneys, lungs, pancreas and small intestines. Tissues include corneas, skin, veins, heart valves, tendons, ligaments and bones.
•  The cornea is the most commonly transplanted tissue. More than 40,000 corneal transplants take place each year in the United States.
•  A healthy person can become a ‘living donor’ by donating a kidney, or a part of the liver, lung, intestine, blood or bone marrow.
•  More than 6,000 living donations occur each year. One in four donors is not biologically related to the recipient.
•  The buying and selling of human organs is not allowed for transplants in America, but it is allowed for research purposes.
•  In most countries, it is illegal to buy and sell human organs for transplants, but international black markets for organs are growing in response to the increased demand around the world. Learn more about Transplant Tourism.

Qualifying for a transplant

Transplant eligibility depends on the organ you need.  Individual transplant centers may have different criteria but the links provided here will give you some idea.

Heart Transplant Qualification

University of Maryland http://tinyurl.com/klcjbns

 Kidney Transplant Qualification

Washington University, St. Louis, Mo.  http://tinyurl.com/nefho9x

 Liver Transplant Qualification

American Liver Foundation. http://tinyurl.com/cfnh7ro

Lung Transplant Qualification

Mayo Clinic.  http://tinyurl.com/lkmbwsx

 Pancreas Transplant Qualification

Johns Hopkins.  http://tinyurl.com/qdn9sbo

 Small Intestine transplant qualification

Cleveland Clinic.  http://tinyurl.com/m5ugaul

 Getting on the U.S. National Organ Transplant List.

University of California Davis Health System. . All organ transplants in the U.S. are coordinated by the United Network for Organ Sharing(UNOS) in Richmond, Virginia. It is a blind list with no names attached to patient records to ensure the fairness of organ and tissue allocation. . http://tinyurl.com/lhwywwv

 Living with a transplant

Transplant living.  http://tinyurl.com/k2tcpc2

Paying for the Transplants and Aftercare (Financial Assistance)

(This is a lengthy section that provides a great deal of information. If you are concerned about how to pay for your transplant and follow up care read it very carefully)

Because there is a shortage of organs the odds of getting a transplant are not good, There are a lot of factors that influence whether any one person will get an available organ and one of them is the ability to pay.  Unfortunately our system is heavily weighted toward those who either have insurance or an independent ability to finance the surgery and the aftercare. A transplant and the aftercare and medication for the first year after the surgery can cost as much as a million dollars.  Sometimes even those with the ability to pay need some assistance.

Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

UNOS is the private government contractor that facilities all organ transplants in the United States.  The information in his blog is copied from their website which provides a wealth of information about the entire donation/transplantation process.  It is one of the most comprehensive resources available.  Bob’s Newheart thanks them for compiling this information and for its willingness to share it with you via our blog.

About Anti-rejection Drugs

Almost everyone who receives an organ transplant has to take immunosuppressant drugs. The body recognizes a transplanted organ as a foreign mass. This triggers a response by the body’s immune system to attack it.  These drugs diminish that attack and allow the organ to continue to function, but there are other effects as well.  This lHealthline ink will take you to a comprehensive review of these life-saving drugs..   http://www.healthline.com/health/immunosuppressant-drugs#Overview1

Funding Sources

Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.

Common funding sources to help with the costs of transplants include:

Note: This information is only a brief summary and is not intended to provide complete information. Ask your transplant financial team and your insurance provider or employee benefits officer for the latest information or help.

Private Health Insurance

You or your family may have health insurance coverage through an employer or a personal policy. Although many insurance companies offer optional coverage for transplant costs, the terms and benefits of insurance vary widely. Read your policy carefully and contact your insurance company if you have questions about how much of your costs they will pay, including your lab tests, medications and follow-up care after you leave the hospital.

Some insurance questions to consider:

• Is my transplant center in-network with my insurance company?
• If my transplant center is out-of network, do I have an out-of-network benefit for transplant?
• What deductibles will apply?
• What are my co-payments for doctor visits, hospitalizations and medications?
• Does my plan require prior authorization?
• Who needs to get prior authorization?

Regardless of how much your insurance covers, you are responsible for any costs not paid by your insurance, unless you have made other arrangements. If you are responsible for paying any or all of your insurance premiums, be sure to pay them on time so that you do not lose your coverage.

Transplant center social workers and financial coordinators can also help you with the information you need. They can contact your insurance company to check on your benefits and explain your coverage in more detail.

Experimental and Investigative Procedures

If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your center or insurance company if your  policy will cover the payment. It is important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If you still have questions, contact your insurance company, your employer’s benefits office or your state insurance commissioner.

Tips

• Keep copies of all medical bills, insurance forms and payments (or canceled checks).
• Ask your insurance company about pre-certification or using a specific provider.
• Follow the rules set forth by your insurance company so that your benefits will not be decreased.
• Always keep a log (who you talked to, date and time and questions answered) of your conversations with anyone in the hospital’s billing office or your insurance company.
• Make sure to keep your transplant center informed about your insurance, especially if you have more than one insurance company.
• For more helpful tips, see the Financial Q&A.

COBRA Extended Employer Group Coverage

If you are insured by an employer group health plan and you must leave your job or reduce your work hours, you may qualify for extended coverage through COBRA (Consolidated Omnibus Budget Reconciliation Act of 1985). This federal law requires certain group health plans to extend coverage for 18 to 36 months after benefits end. This requirement is limited to companies employing 20 or more people. You pay the full cost of the premiums for the group health plan. Learn more by contacting your employer’s benefits office or visit the federal Department of Labor Web site >

Health Insurance Marketplace

Also known as the health insurance “exchange,” the marketplace is a set of government-regulated and standardized health care plans in the United States. Learn more at www.healthcare.gov >

Medicare

Medicare is a federal health insurance program available to people who are 65 or older, disabled or have end stage renal disease (ESRD).

Medicare, like most private insurance plans, does not always pay 100% of your medical expenses. In most cases, it pays hospitals and health providers according to a fixed fee schedule, which may be less than the actual cost. You must pay deductibles and other expenses. Medicare currently offers coverage for transplant of:

• kidneys
• kidney-pancreas
• pancreas, either after a kidney transplant or for certain indications

If you already have Medicare due to age or disability, Medicare also covers other transplants:

• heart, in certain circumstances
• lung
• heart-lung
• liver, including transplants necessitated by hepatocellular carcinoma (HCC)
• intestines

To receive full Medicare benefits for a transplant, you must go to a Medicare-approved transplant program. These programs meet Medicare criteria for the number of transplants they perform and the quality of patient outcomes.

If you have questions about Medicare eligibility, benefits, or transplant programs, contact your local Social Security office, or Medicare at 800-633-4227 or www.medicare.gov.

Medicare Prescription Drug Plans

Medicare Part D covers costs for prescription drugs. To get this coverage you must choose and join a Medicare drug plan. For more information call (800) MEDICARE ([800] 633-4227)/ TTY: (877) 486-2048 or visit www.medicare.gov (click on Medicare Basics >Part D).

MediGap Plans

Many people on Medicare also choose to buy a private “MediGap” policy to pay for costs not covered by Medicare. Check with a local insurance agent or go to www.medicare.gov (click on Resource Locator>MediGap).

State Health Insurance Assistance Program

The State Health Insurance Assistance Program (SHIP) is a national program that offers one-on-one counseling and assistance to people with Medicare and their families. Your transplant social worker or financial coordinator can provide information on your states SHIP program, or learn more now >

Medicaid

Medicaid is a federal and state government health insurance program for certain low-income individuals. Each state determines criteria for:

• eligibility
• benefits
• reimbursement rates

Most Medicaid programs only cover transplants performed in their state, unless there are no centers that can transplant that organ. For more information, contact your local human services department or the financial coordinator at your transplant center.

Charitable Organizations

Charitable organizations offer a range of support, from providing information about diseases, organs and transplants, to encouraging research into these diseases and treatments.

Also, although it is very unlikely that one organization can cover all of the costs for an individual patient, some organizations provide limited financial assistance through grants and direct funding. For example, an organization may only be able to help with direct transplant costs, food and lodging or medication costs.

Advocacy Organizations

Advocacy organizations advise transplant patients on financial matters. If you agree to a financial arrangement with an advocacy organization, it is important to make sure that the funds are available in a manner that suits your needs. You may even want legal assistance in reviewing a written agreement before signing. Your bank can also help you review the arrangement.

Every advocacy organization should be able to provide supporting information and background documentation to prove they are legally recognized to help those in need. Brochures and other background information should never serve as substitutes for these documents. Ask advocacy organizations to provide you with copies of the following documents:

• a current federal or state certification as a charitable, non-profit organization
• a current by-laws, constitution and/or articles of incorporation
• a financial statement for the preceding year, preferably one that
• an audit report from an independent organization
• references

Fundraising Campaigns

Even if you have coverage for transplant, fundraising is a good path to take to assist with costs not covered by insurance, such as prescriptions and temporary housing. It is also a great way for your family and friends to be involved with your care.

Asking for help is perfectly okay, and you may find that many of your loved ones will step forward to support your fundraising campaign. If you do decide to raise funds, it is best to do it before your transplant, as the money raised will help you budget for your medical expenses.

Before you begin seeking donations, it may be necessary to check with your city/county governments, legal advisor or transplant team about the many legal and financial laws and guidelines.

If you decide to use public fundraising as a way to cover your expenses, you may want to contact local newspapers, radio or television stations to help support your cause. In addition, try to enlist the support of local merchants and other sponsors to promote or contribute to your events. Your friends, neighbors, religious groups, local chapters of volunteer or service groups and other community groups may also be able to help.

It is also very important to understand that the funds you raise only be used for your transplant-related expenses and donated money sometimes has to be counted as taxable income. In cases in which money must be counted as income, you may lose your Medicaid eligibility.

These organizations can help you plan your fundraising campaign:

Children’s Organ Transplant Association (COTA)

Help HOPE Live  (Formerly the National Transplant Assistance Fund (NTAF)

National Foundation for Transplants

TRICARE (formerly Champus) and Veterans Administration

Government funding for families of active-duty, retired, or deceased military personnel may be available through TRICARE. TRICARE standard may share the cost of most organ transplants and combinations. TRICARE also covers living donor kidney, liver, and lung transplants. Patients must receive pre-authorization from the TRICARE medical director and meet TRICARE selection criteria. Pre-authorization is based on a narrative summary submitted by the attending transplant physician. For more information about TRICARE, contact the health benefits advisor at your nearest military health care facility, call the TRICARE Benefits Service Branch at (303) 676-3526 or learn more now >

 

The National Marrow Donor Program is also a resource for information on where to get financial assistance.  They offer this advice.

Transplant insurance coverage.  These items may not be covered by your insurance.  Check to be sure.

You or someone you know might need an organ/tissue transplant you must show an ability to pay before you will be accepted by most transplant centers.  Most people rely on insurance but insurance policies differ from one company to the next.  Be sure about what your policy covers, talk to your plans benefits manager or to the hospital social worker to get a clear idea of what is covered.

It is very likely that the following items are NOT COVERED by your health insurance company.  This information was generated by the National Marrow Donor Program.  http://tinyurl.com/b8pb4s4 

You may want to ask if the following items are covered by your specific health insurance plan:

• Testing to find a matched unrelated or related donor
• Donor costs
• Transplants for a rare diagnosis
• Travel and lodging expenses to and from the transplant center for patient and/or caregiver
• Food costs while staying near transplant center
• Parking costs
• Prescriptions for post-transplant discharge or outpatient medications
• Office visits coverage
• Home health care
• Psychiatric coverage
• IV injections
• Clinical trials
• Sperm/egg storage
• Insurance premiums when patient is not employed
• Fees for post-transplant home preparation (carpet and drapery cleaning, replacing filters on heaters, air conditioning cleaning)
• Change in cost of living after transplant (different food needs, for example)
• Child-care costs

If your insurance does not cover all of your costs related to transplant, you may be eligible for Financial Assistance for Transplant Patients.

Financial assistance for transplant patients

Your transplant center social worker will help you find financial aid that is available through Be The Match® and other organizations.

Planning for transplant costs

• Insurance and transplant coverage
• Financial assistance for transplant patients

Applying for financial aid programs may include many steps. Your transplant center social worker will help you find financial aid that is available through Be The Match^® and other organizations, and help you complete the applications.

Be The Match financial aid programs

Be The Match financial assistance is available for patients who are searching for a donor on the Be The Match Registry^®, or who have had a bone marrow or cord blood transplant with a donor from the registry.  Financial assistance from these programs can help you pay for the cost of a donor search and for some post-transplant expenses. Talk with your transplant center financial coordinator to see if you are eligible for these programs.

*Funds for financial aid programs are available through the generous contributions to Be The Match.

Transplant costs worksheet can help you calculate the transplant costs not covered by insurance.

Search Assistance Funds

Search Assistance Funds can help pay the costs not covered by insurance for searching Be The Match Registry of unrelated adult donors and cord blood units. If you are eligible, Be The Match will notify the transplant center. This allows your donor search process to begin as quickly as possible.

To be eligible:

• You are searching for an unrelated donor or cord blood unit from the Be The Match Registry.
• Your transplant center has determined you do not have enough insurance coverage to cover the donor search costs.
• You must be a U.S. resident.

Transplant Support Assistance Funds

Transplant Support Assistance Funds help pay for some costs during the first 12 months after transplant that are not covered by your insurance. These funds can be helpful with costs related to:

• Temporary housing, if you and your family or caregiver needs to relocate for the transplant.
• Food for you and your family or caregiver.
• Parking and gas for ground transportation.
• Co-pays for prescriptions and clinic visits.

To be eligible:

• You have had a transplant using an unrelated donor or cord blood unit from the Be The Match Registry.
• You must be within the first 12 months of your transplant.
• You meet financial eligibility criteria.
• You must be a U.S. resident.

ExploreBMT is a resource to connect you and your family with financial support and information from organizations you can trust.

Other financial aid programs

There are several more financial aid programs available to help you with your transplant costs. Ask your transplant center social worker to help you identify and apply for programs that you may be eligible for, including Be The Match financial aid programs.

The importance of Caregivers in Transplantation

One cannot overestimate the importance of having a compassionate, organized and committed caregiver following a transplant.  For a while at least, the patient may be able to do very little for him or herself and will need varying degrees of care.  At first it will be important to make sure the patient gets to Clinic appointments, takes the appropriate medications at the right times, attends rehab sessions and follows dietary recommendations.  Many transplant centers won’t consider the surgery unless such a person is in place and committed to the patient.  This link should help those who agree to perform this most important function  http://tinyurl.com/lnq4vk9

While this may be a lengthy piece it only scratches the surface of resources available to transplant patients and their families.  If you have suggestions for additions, deletions or edits please contact bob@baronson.org the founder of this blog site.

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Thank you donors and donor families

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.  You can register to be a donor at http://www.donatelife.net.  It only takes a few minutes.

The Language of Loss. What Do You Say to Someone Who Has Lost a loved One?

Introduction by

Bob Aronson

It is an unfortunate fact of life that those of us in the transplant community have not only faced death but seen many of our friends pass on while waiting for organs.  Like you, we struggle with what to say.

This post, like many we publish has applications everywhere whether you are a transplant patient or not because we all find ourselves in situations where we are expected to offer words of comfort to grieving friends or family.  Most of us struggle with finding the right words.  Knowing “The right thing to say” doesn’t seem to come naturally.  Guest blogger Dr. Priscilla Diffie-Couch offers excellent advice in this riveting piece about how your words affect someone in grieving.

Priscilla and I are not only cousins by marriage but professional cousins as well.  Both of us had careers in communication.  I cannot speak for her, but in my 50 plus years in that business I learned more than I taught.  I won’t list all my many “Aha” moments because this post is not about me, I will only mention the two that are particularly germane to this topic.

The first is that most of us take communication for granted.  We expect that the audience whether one or many will clearly understand and accept our words.  What we fail to realize is that communication is more than words.  You begin to communicate the moment you walk into a room – before you utter a single word. The way you walk, your facial expression, body language, grooming and attire all contribute to your communication effort.  Communication has as many facets as a well cut precious gem stone.

The second important lesson I learned is that while what you say is very important and you should carefully choose your words, most people will not remember the exact language you used.  What they will remember is how you made them feel.

What Priscilla has written here is brilliant.  It is advice given by someone who is not only a communications expert but who has experienced tragic loss first hand.  She has been on the receiving end of the language of loss and has also offered it.  Please read and re-read what she has written and then share it with anyone you think might be helped by these incredible words of wisdom.

THE LANGUAGE OF LOSS

By Dr. Priscilla Diffie-Couch

(I wrote these words in 1980 but because they are based on timeless communication principles they still apply.  I would not change a word.)

“Your mother was killed in a car wreck.”  More than a year and a half has passed since this devastating tragedy and yet these words still seem intended for someone else, not me.  I cannot totally accept the finality of the pronouncement of these painful words.  Yet they introduced events that have completely reshaped my thinking.

Of the lessons of life and death I have learned in these last eighteen months, the one I have yet to discuss in professional circles is the role our language plays in reinforcing, re-establishing and even reducing relationships in times of grief.

Though one of the two areas of focus in my doctoral training was interpersonal communication, I am now quite sure I have always fallen short in conveying appropriate messages to people who have lost loved ones.  Not too long ago a friend confided that he had not inquired about a neighbor’s critically ill mother.  He feared arousing emotional responses she would not be able to handle, he explained.  I suspect he might admit under further probing that a greater fear was that he might not be able to handle her responses.  Too often I recall my own feelings of inadequacy in similar circumstances.  What if she began to cry?  Became angry?  Smothered me with too many feelings?  Lapsed into silence?  Expected me to understand?  Denied that I could understand?

Such imagined responses are enough to prevent many of us from fully extending our condolences or sharing sincere words of sympathy.  But intense discussions and extended research since my mother’s death persuade me that doing so is always worth risk.

As in any difficult communication situation, guidelines can be helpful.  As you examine these guidelines, remember that they are based on sound general communication principles.  Some will seem self-evident at first glance.  But if you look more closely, you may discover something that will shake your confidence in having done and said “the right things” instinctively.
For example, there is a strong temptation when confronted with difficult communication situations to resort to easy, familiar phrases.  How simple it is to say to someone who has suffered loss, “You’ll get over it in time.”  “Time heals all wounds.”  “Keep your chin up.”  “Life goes on.”  “You’ve got to face it.”  “Death is just a part of life.”  “Don’t cry.”  “She’s happy now.”

Even as I write them, these safe, comfortable phrases cause me to shudder—as they did during my own loss.  I wasn’t quite sure why at the time.  I have come to realize that such clichés can increase rather than assuage anxiety.  Many of them tend to reinforce the sense of loss.  Yet psychologists remind us that it is very natural for us to experience “denial.”  I did.  I was not ready to accept the void.  I filled it continuously with images of my mom—laughing, smiling, thinking, talking, walking, painting, etc., etc.  These clichés asked me to push my mom—my best friend, the central force, the nucleus, the heart of our family—into the recesses of the mind she had so deeply touched and so strongly influenced.

So I resentfully resisted such repeated phrases as “Time is all it will take.”  To do what, I wanted to scream.  To erase my beloved mom from my mind and memory?  To remove her completely from our lives?  To relegate her spirit to some misty distant role, to be called up only in moments of family reminiscing?

Such common clichés carry the unintended message that you have not
suffered any special loss—yours is not the only mother who ever died.  Such reminders can seem cold and cruel.  They no more relieve suffering than any other recitation would—highway death statistics, for example.  As I look back, I am very sure that these clichés failed foremost because they did not provide the personal acknowledgement that something specifically and incomparably tragic had happened in my life.  Clichés cannot capture the uniqueness of my special relationship with a rare person whose spirit I shared in a way peculiar to the two of us.  Clichés cannot capture the particular adjustments required continuously throughout the rest of my life without her.  Clichés ignore the reality that her particular love can never be replaced, that her influence has now been permanently diminished in my life.  Clichés lie.  Life does not go on.  Not as it was before.

I could not then and I cannot now reduce the enormity of this event in my life to the casual unconcern implicit in a cliché.  So consider carefully the implications of those easy, familiar phrases before you say, “You’ll get over it.”  Get over what?  If you mean, “You’re in deep pain now.  I hope it will become easier to bear,” then say that.  Treat the loss as unique in the language you choose, no matter how much effort that takes.

Possibly an even greater misconception guiding people in response to another’s loss is that the less mention made of the deceased the less suffering will be imposed.  The opposite is more likely to occur.  The unstated message in such silence is often interpreted as indifference toward or disregard for the deceased.  Did she really make so little impression on you in life that you haven’t a single kind word for her after her death?

Even if you didn’t know the deceased personally, if you visit, you must be there because you personally know the bereaved.  If so, you can easily sincerely observe, “It’s obvious how close you felt to her.  She must have been very special” or “From all you’ve said, I know she was truly a warm and loving person,” or “I can see so many of the influences you have mentioned in your own life.”  Such verbalized reassurances are desperately-needed reminders that her life was not a waste. They acknowledge not only her worth but also the depth and genuineness of the grief.

A few weeks after my mother’s death, as I was going through her memorabilia, I was surprised to find a lengthy letter I had written her some years before.  In it I had detailed all the truly remarkable qualities of her vibrant sister who’d died unexpectedly, much too young.  My mom was not a pack rat, yet she had kept this letter.  She placed special value on the words I had written because they applied uniquely to her sister.

How cherished are those easily-remembered personal comments about Mom the day of her funeral.  “She was always so happy.”  “She was quite a lady.” “There was no one like LaVerna.”  How touched we all were by a poem composed by a neighbor who lost her own mother not many years before.

The second guideline should now be clear:  don’t be deceived into believing that all-too-common cliché that “silence is golden.”  Don’t be deceived into thinking that the words you didn’t say will never come back to haunt you.  They can.  I am still dismayed by words that were never spoken, by friends who didn’t get in touch, by notes and flowers never sent.

Perhaps you’re thinking now—as I once did—that my clumsy words would just increase the pain already felt by those suffering.  None of us has that kind of power.  I know that now.  The event itself is paramount.  It is the cause of the pain.  Whatever you say—if it is a personalized expression of your caring—will be welcomed, even if it does not visibly alleviate the pain.

In fact, it is often the totally spontaneous reaction that carries the most powerful message.  The day after my mom’s death, my brother walked into the woods behind Mom and Dad’s recently-realized dream home with his close friend, a man near forty.  After a long moment of silence, through tears spilling down his face, this friend blurted out, “I don’t think I can stand this!”  The intensity of such a profoundly-felt disclosure cannot be measured, but it left a marked impression on our family.  It served—in a way that no cliché or continued silence could—as a permanent weld in an already warm relationship.  Certainly, personal comments can evoke a fresh flow of tears, but not because they cause additional pain.  Tears are evidence that the hurt exists and an acknowledgement of your willingness to share it.

Of course, there are risks.  Who among us is wise enough to predict the exact responses our words are likely to evoke?  Sensitive communicators calculate the risks, think before they speak, and stand ever ready to adapt with flexibility.  This all takes more effort than it does to remain silent.  And  rest assured that sincere, carefully-considered words of comfort will never be as negative as total, continued silence.

At this point I would be remiss to ignore the role of nonverbal communication in expressing the deepest of emotions.  A hug, a touch, a meeting of eyes can convey your strongest feelings with unmatched intensity.  But such
expressions—as deeply as they may temporarily touch someone—will not suffice in a sustained relationship any more than the wedding kiss will meet the needs of a lifetime.  In a continuing relationship the words must eventually come.

Even after that condemnation of continued silence, I’d be tempted to opt for it over communication built solely on unacknowledged assumptions.  Assumptions are dangerous in daily communication; they can be disastrous in times of crisis.

Consider some common assumptions expressed shortly after a death:  “I know how you feel.”  “I’m sure you’d rather be alone right now.”  “Come on.  It will do you good to be with the others.”  “Go ahead. Talk about it.  It’ll help.”  “Don’t talk about it right now.  It will only make you feel worse.”  “This is the worst part.  Tomorrow will be better.”  “You should view the body.  It’s the easiest way to accept it.”  “Im sorry I made you cry.  I know you’d rather not discuss it right now.”

I wonder how many of you have been hurt by the kind of communication that followed assumptions somebody drew and then acted upon as if they were fact.  There are still people who assume I would rather not talk about my mother.  That assumption has caused a rift in one relationship I thought was close and has yet to be repaired.  Such breaks in relationships are often caused by confusing assumption with fact.  What is true for you may not be true for others.  Your assumptions are likely to be inaccurate, inadequate, inappropriate or all of these.

While most of us can accept the warning against treating assumption as fact, some of us may feel a bit cocky about really knowing certain people in our lives.  Do we?  Who is it in your life that knows exactly what you are thinking or feeling at every moment?  Your spouse of twenty years?  How many arguments have started with that faulty assumption?

I have been told that this is a confusing concept.  I seem to be advising against ever engaging in assumptions.  That, of course, would be impossible.  We cannot think, reason, or draw conclusions without engaging in assumptions.  What I am cautioning about is acting on those assumptions as if they were fact and then communicating on this basis.  Telling someone how you coped when your mother died may consist largely of factual reporting.  Sharing means of coping can indeed by helpful. Telling someone she should cope in the same way, however, involves assumptions and can lead to complications and cause communication barriers to develop.

I remember sharing a letter with my dad from my cousin about her eventual acceptance of her mother’s death (my dad’s sister).  Nowhere in her letter was any evidence of an assumption that we could find the same kind of acceptance.  She reported what she had felt and experienced and offered it for our consideration.  In that light, it was deeply appreciated.

If you sincerely care about the person in grief, then don’t assume.  Simply ask, “Would you like to be alone right now?”  Though persons in pain do not always know what they want, remember that you are even less certain.  Your approach should be one of discovering or helping them to discover what their needs are and how you might fill them.  One dear friend, though she had lost neither parent at the time, had an uncanny knack for adapting to my needs as we talked of my mother’s death.  She could turn my tears into laughter and then join me when they started up again.

Such responsiveness demanded that my friend play many roles as a communicator, but she never attempted to be a mind-reader.  She never assumed that she knew exactly what I was thinking or how I was feeling.  She seemed to know that none of us—no matter how intuitive we are—can really step inside another’s mind or heart.

By now it should be obvious that artful listening is a must in communicating with someone submerged in sorrow.  Some of what I say here will seem like common sense.  Yet there are a surprising number of people who apparently need constant reminders of the traits of a good listener. Never will you be called upon to exhibit these traits more consistently and compassionately than when communicating with someone who has suffered a painful loss.

Listen with all the empathy you can command.  Listen to the need for reassurance.  Listen to the need to talk about the deceased, about the events that led to the death.  Listen to the need to explore the universe, to make sense of what seems to be senseless. Listen to the need for temporary silence.  Listen to the desire to have the tension broken through laughter, tears, change of subject.  Listen to the anguish behind the anger.  Listen to the need to retrace again and again the “why” that can never be explained.  Listen with your ears, your eyes, your mind, your heart, your soul.

There is no magic formula for executing such delicate communication skills as those involved in fine-tuned listening.  But I can recommend against behaviors that are likely to interfere with effective listening.

Avoid judgmental behaviors and unsolicited advice.  What I am suggesting here may put people with deep religious convictions in a double bind.  One the one hand, they feel compelled to clearly enunciate why true solace in the face of death is available only through one supreme source.  At the same time they are advised not to impose controversial views on those in mental torment if they are to practice effective sensitive listening.  Some common sense guidelines would seem to be:  will what I say produce the desired effect?  Will it produce unnecessary discomfort for those already suffering?

Couple these considerations with the following tested communication concept:  No amount of sincerity will assure acceptance of your beliefs.  Excessive enthusiasm for a cause is often counterproductive.  People who argue too loudly and too long for a position can actually drive opponents further away.  In daily social use the term “sermonizer” has taken on negative connotations.  It suggests a desire to impose standards and opinions on others plus a refusal to listen to alternatives.  A truly effective listener cannot hold unalterable opinions.  The highly sensitive listener projects an attitude of inquiry and genuine desire to learn from others.

It is well to remember that not everyone shares your particular views.  If the bereaved does not even accept the notion of a “God” or an afterlife, then this same person can hardly be expected to find comfort in the notion that God decided the deceased was no longer needed on earth or that it was her time to go or that she is now happy in “heaven.”  Certainly, a religious card a Biblical reference, even a personally-composed prayer can be offered and may provide comfort if it is not accompanied with a sermon.  However well-intentioned, it is not wise to risk adding to a grieving person’s distress.

Suppose you are a very concerned person but one who is a better talker than listener.  Shouldn’t you rely on your natural skills in dealing with someone in grief?  I offer this for consideration:  It takes seconds to see in others what it takes a lifetime to see in oneself.  People who value their ability to talk too often talk about themselves, their feelings, their needs, their interests, their job, their troubles.  There is no such thing as a skillful communicator who talks well but listens poorly.  If there is any chance this describes you, then the kindest thing you can do is send a sympathy card.

I still find it hard to understand why a well-meaning couple, long-time acquaintances of my mom, chose to impose an endless stream of inconsequential incidents from their lives on our family the day Mom died.  They were totally oblivious to our obvious signs of discomfort.  When they finally terminated an unnecessarily long visit, my dad was completely drained and visibly relieved as he closed the door behind them.

Even as I write this, I realize that those who need this message most are least likely to see that it applies to them.  It should be noted that the presence of such ineffective communicators deepens our appreciation of those who are.  What a special place I have in my heart for those who still ask, “How is your dad” and wait expectantly for my emotion laden reply.  How dear are those who are compassionate enough to openly confront the emptiness and void, knowing it does not magically disappear in a few days or months.  How warm I feel toward those rarely empathic listeners whose eyes still moisten in response to my occasional tears.

As you read through these suggestions, you may be thinking, “I’m really a deeply-caring person.  I’ve sincerely tried to say and do the right things, but I still wasn’t very successful.  Somehow, my relationship with that special person has changed.  We are not as close as we were before this death.”

Such bewilderment is not uncommon.  Despite the once open lines of communication, a crisis can cause a distance to develop.  When a soul is shattered—as mine was—by such a destructive blow as my mother’s death, all other relationships are subject to some sort of splintering and must eventually be repaired.

My husband could not have been a more supportive communicator or a more sensitive listener.  He cried with me and followed me with intense empathy through repeated prolonged discussions of Mom, our family, life, death, funerals, religion.  But there were times when I couldn’t sufficiently explain and he couldn’t completely understand, my need to turn to or be with my dad, my sister, my brother.  I couldn’t resist the force pulling me back into my original family-minus-one.  I knew that no one outside that circle could completely comprehend or fully share my loss.  I’m sure my loving husband was confused by my lapse into childhood language the night he called with that inconceivable, never-contemplated news.  “Where is my daddy?  I want my daddy!”  I wailed after my screams had subsided into moans of agony.  I had not called him “Daddy” since I was a child.  But through this means and others I shut my husband out of that fairy-tale family who has struggled out of poverty, built a house together, worked side by side on a dairy farm—a family who lived, laughed, loved together…truly together.

My survival in those early months of mourning was primarily dependent on long tear-filled talks with my sister, my dad, my brother.  We shared what communication experts call a “common frame of reference.”  You can save yourself some unnecessary distress if you examine your expectations during crisis events in the lives of those you love.  You may not be invited to share the same level of disclosure or feelings reserved for close family members.  It may have little to do with your communication behaviors.  You can avoid all the empty clichés; you can set aside all the faulty assumptions; you can show awareness that silence does not suffice; you can practice the most sensitive listening skills.  And you may still end up feeling “shut out.”  But if you deeply care, that is certain to be a temporary condition.  I am fortunate to have an incomparable husband and devoted friends who considered our relationship worth preserving and continued to practice adaptive and perceptive communication skills that brought us so close in the beginning.

Don’t misunderstand.  My family deeply appreciated all expressions of sympathy, however awkward or misguided.  People are universally kind during times of grief.  My focus here, however, has not been how to deal with or receive expressions of comfort.  These guidelines are pointedly directed at all who are ever called upon to offer condolences. 

My primary concern is to remind you—and myself—that this is no easy task.  And though it is a topic rarely addressed, it should never be taken lightly.  You will want to insure that others benefit by the best possible results that can come out of your good intentions.  Don’t stop trying.  Don’t stop caring.  It is not too late to pick up the phone or a pen or appear in person with some special thought you somehow didn’t or couldn’t convey.  No matter how many years have passed since the tragedy occurred, your words—like the miracle of memories—can warm the heart.

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An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

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A message from Bob Aronson, Founder of Bob’s Newheart blogs.

Thank you donors and donor families

Bob’s Newheart was established to support and help everyone, but particularly those who need or have had organ transplants.   Most of our blogs specifically address donation/transplantation issues while others are more general, but they are all related.  Because anti-rejection drugs compromise immune systems, transplant recipients are more susceptible to a variety of diseases.  We provide general health and medical information to help them protect themselves while at the same time, helping others live healthier lives and avoid organ failure.

The Bob’s Newheart mission is three-fold; 1) to provide news and information that promotes healthier living so people won’t need transplants; 2) To help recipients protect their new organs and; 3) to do what we can to ensure that anyone who needs an organ can get one.   About 7,000 Americans die every year while waiting for a life-saving organ.  I am sure you will agree that should not happen.

In the U.S. the great majority of people support organ donation, but only about 40% of us officially become organ donors.  Many have good intentions but just don’t get around to it.

No one likes thinking about their ultimate demise, but we all know there’s no way of predicting how long we will live.  There are just too many intangibles. My transplanted heart came from a 30 year old man.  I’m sure he had no intention of being a donor at that age.  So why leave donation to chance?  If you are not yet a donor, please register at www.donatelife.net it only takes a few seconds. Then, tell your family about your decision so there is no confusion when the time comes to donate.

One organ donor can save or positively affect the lives of up to 60 people.  There is no nobler thing you can do than becoming an organ donor.

How To Live Healthy, Live Long and Stay off the Transplant List

By Bob Aronson

As of today here is the latest data from the United Network For Organ Sharing (UNOS).  There  are 123,961 people on the U.S. transplant waiting list; from January through August of this year there have been 19,426 transplanted organs from 9,512 donors.  Do the math and you will find that most of those nearly 127,000 will NOT get organs anytime soon.  Many, nearly 7,000 will die waiting.  Why?  The answer is simple, only about 40% of Americans become donors even though almost everyone agrees that donation is a good idea.  The fact is, most of us just don’t get around to signing up.  We have been putting it off since the Transplant Act was passed in 1984.  Anyone who thinks donation alone will end the shortage is fooling themselves.  It won’t…EVER!  Sure we have to keep encouraging people to donate…we can’t let up but we have to consider alternatives.  We must!

The key to solving the shortage of transplantable organs is to significantly diminish the demand.

“We have met the enemy and he is us,” has become a trite expression bu1ht that doesn’t make it any less true.  We are our own worst enemies.   The numbers are staggering.  We are killing ourselves in four ways:

1. We drink too much alcohol
2. We smoke too much
3. We eat too much of the wrong food
4. We don’t get anywhere near enough exercise

Let’s look at he facts:

1. Alcohol abuse. 5% of Americans abuse alcohol or are alcohol dependent, The estimated annual medical expenditures associated with alcohol abuse total $26.3 billion.  Organs most commonly affected are the lungs, kidneys, pancreas, heart and liver.

2. 22.5%  of Americans are current smokers, resulting in significant health problems and associated costs.   Medical costs caused by cigarette smoking exceed $75 billion a year.  According to the Centers for Disease Control in Atlanta, Georgia, Smoking harms nearly every organ of the body and causes many diseases.  Cigarette smoking remains the single most-common preventable cause of death in the United States. The adverse health effects from cigarette smoking account for more than 440,000 deaths, or nearly one of every five deaths, each year in the United States.

3. About 40 plus % of adults in the United States are obese.  Often caused by eating too much of the wrong food, a good number of obese people experience some organ failure.  The direct medical costs for obesity have been approximated at $51.6 billion per year. The organs most often affected are the heart, kidneys and pacnreas.

4. Lack of Exercise. A study released by the Centers For Disease Control (CDC) estimatesthat nearly 80 percent of adult Americans do not get the recommended amounts of exercise each week, potentially setting themselves up for years of health problems. Physical inactivity can lead to obesity and Type 2 diabetes, according to the CDC, while exercise can help control weight, and reduce the risk for developing heart disease and some cancers, while providing mental health benefits.

This blog is about meeting the organ shortage by preventing organ failure.  One way to do that is to lead healthier lifestyles.  Alcohol abuse and tobacco use are obvious culprits and we won’t go into detail here.  You should know to severely limit alcohol and quit using tobacco altogether and if not just Google the topics, there are thousands of resources.  So, let’s concentrate on food and exercise.  Let’s start with food.  There are two lists here, 1) the worst foods and 2) the best foods.

Top 30 Worst Foods in America (from Food Matters

Note from Bob’s Newheart.  While Food Matters lists 30 I am only listing ten.  You can click on their link for the rest of the story)

Today’s food marketers have loaded many of their offerings with so much fat, sugar, and sodium that eating any of the foods in this article on a daily basis could destroy all your hard work and best intentions of eating healthy. This list is brought to you by Eat This Not That and Men’s Health. http://foodmatters.tv/articles-1/the-30-worst-foods-in-america-beware

1. Worst Meal in America

Carl’s Jr. Six Dollar Guacamole Bacon Burger with Medium Natural Cut Fries and 32-oz Coke 1,810 calories – 92 g fat (29.5 g saturated, 2 g trans) – 3,450 mg sodium

Of all the gut-growing, heart-threatening, life-shortening burgers in the drive-thru world, there is none whose damage to your general well-being is as potentially catastrophic as this. A bit of perspective is in order: This meal has the caloric equivalent of 9 Krispy Kreme Original Glazed doughnuts, the saturated fat equivalent of 30 strips of bacon, and the salt equivalent of 10 large orders of McDonald’s French fries!

2. Worst Drink

Baskin-Robbins Large Chocolate Oreo Shake. 2,600 calories – 135 g fat (59 g saturated, 2.5 g trans) – 1,700 mg sodium – 263 g sugars.  We didn’t think anything could be worse than Baskin-Robbins’ 2008 bombshell, the Heath Bar Shake. After all, it had more sugar (266 grams) than 20 bowls of Froot Loops, more calories (2,310) than 11 actual Heath Bars, and more ingredients (73) than you’ll find in most chemistry sets. Yet the folks at Baskin-Robbins have shown that when it comes to making America fat, they’re always up to the challenge. The large Chocolate Oreo Shake is soiled with more than a day’s worth of calories and 3 days’ worth of saturated fat. Worst of all, it takes less than 10 minutes to sip through a straw.

3. Worst Ribs

Outback Steakhouse Baby Back Ribs 2,580 calories. Let’s be honest: Ribs are rarely served alone on a plate. When you add a sweet potato and Outback’s Classic Wedge Salad, this meal is a 3,460-calorie blowout. (Consider that it takes only 3,500 calories to add a pound of fat to your body. Better plan for a very, very long “walkabout” when this meal is over!)

4.Worst Pizza

Uno Chicago Grill Classic Deep Dish Individual Pizza. 2,310 calories – 165 g fat (54 g saturated) – 4,920 mg sodium – 120 g carbs. The problem with deep dish pizza (which Uno’s knows a thing or two about, since they invented it back in 1943) is not just the extra empty calories and carbs from the crust, it’s that the thick doughy base provides the structural integrity to house extra heaps of cheese, sauce, and greasy toppings. The result is an individual pizza with more calories than you should eat in a day and more sodium than you would find in 27 small bags of Lays Potato Chips. Oh, did we mention it has nearly 3 days’ worth of saturated fat, too? The key to success at Uno’s lies in their flatbread pizza.

5. Worst Mexican Dish

Chili’s Fajita Quesadillas Beef with Rice and Beans, 4 Flour Tortillas, and Condiments.  2,240 calories – 92 g fat (43.5 g saturated) – 6,390 mg sodium – 253 g carbs.  Since when has it ever been a smart idea to combine 2 already calorie- and sodium-packed dishes into one monstrous meal? This confounding creation delivers nearly a dozen Krispy Kreme original glazed doughnuts worth of calories, the sodium equivalent of 194 saltine crackers, and the saturated fat equivalent of 44 strips of bacon. Check please.

6. Worst Seafood Dish

Romano’s Macaroni Grill Parmesan Crusted Sole. 2,190 calories – 141 g fat (58 g saturated) – 2,980 mg sodium – 145 g carbs.  Fish is normally a safe bet, but this entrée proves that it’s all in the preparation. If you fry said fish in a shell of cheese, be prepared to pay the consequences. Here that means meeting your daily calorie, fat, saturated fat, and sodium intake in one sitting.

7. Worst Chinese Dish

P.F. Chang’s Combo Lo Mein.  1,968 calories – 96 g fat (12 g saturated) – 5,860 mg sodium.  Lo mein is normally looked at as a side dish, a harmless pile of noodles to pad your plate of orange chicken or broccoli beef. This heaping portion (to be fair, Chang’s does suggest diners share an order) comes spiked with chicken, shrimp, beef, and pork, not to mention an Exxon Valdez-size slick of oil. The damage? A day’s worth of calories, 1 ½ days’ worth of fat, and 2 ½ days’ worth of sodium. No meat-based dish beats out the strip.

8. Worst Appetizer

On the Border Firecracker Stuffed Jalapenos with Chili con Queso. 1,950 calories – 134 g fat (36 g saturated) – 6,540 mg sodium. Appetizers are the most problematic area of most chain-restaurant menus. That’s because they’re disproportionately reliant on the type of cheesy, greasy ingredients that catch hungry diners’ eyes when they’re most vulnerable—right when they sit down. Seek out lean protein options like grilled shrimp skewers or ahi tuna when available; if not, simple is best—like chips and salsa.

9. Worst Burger

Chili’s Smokehouse Bacon Triple Cheese Big Mouth Burger with Jalapeno Ranch Dressing. 1,901 calories – 138 g fat (47 g saturated) – 4,201 mg sodium.  Any burger whose name is 21 syllables long is bound to spell trouble for your waistline. This burger packs almost an entire day’s worth of calories and 2 ½ days’ worth of fat. Chili’s burger menu rivals Ruby Tuesday’s for the worst in America, so you’re better off with one of their reasonable Fajita Pitas to silence your hunger.

10. Worst Sandwich

Quizno’s Large Tuna Melt 1,760 calories – 133 g fat (26 g saturated, 1.5 g trans) – 2,120 mg sodium. In almost all other forms, tuna is a nutritional superstar, so how did it end up as the headliner for America’s Worst Sandwich? Blame an absurdly heavy hand with the mayo the tuna is mixed with, along with Quiznos’ larger-than-life portion sizes. Even though they’ve managed to trim this melt down from the original 2,000-plus calorie mark when we first tested it, it still sits squarely at the bottom of the sandwich ladder.

Now you know what to avoid, and we urge you to click on the Food Matters link to read the whole list.  So, if you can’t eat any of the aforementioned items what do you eat?  There’s plenty to choose from.   Health Life lists 100 and you can read them all by clicking on their link. Here are their top ten.

http://www.dwlz.com/HealthyLife/healthy50.html

THE 100 HEALTHIEST FOODS
Fruit	Fat/Calorie Breakdown	Body Benefits
(1) Apples	1 medium apple: 81 calories, 0 g fat	An apple’s 3 g of fiber help you meet your fiber goal of 20 g to 30 g daily.  High-fiber diets can lower heart disease risk.
(2) Apricots	3 apricots: 51 calories, 0 g fat	A good source of beta-carotene (which is converted to vitamin A by the body), providing the equivalent of 35% of the RDA for vitamin A
(3) Bananas	1 medium: 105 calories, 0 g fat	Bananas are a great source of potassium, which plays a key role in heart health and muscle function.  Plus each one has 2 g of fiber.
(4) Blackberries	1 cup: 74 calories, 0 g fat	This fruit boasts a whopping 10 g of fiber in a single cup.
(5) Blueberries	1 cup: 81 calories, 0 g fat	Blueberries help prevent and treat bladder infections by making it hard for bacteria to stick to urinary tract walls.
(6) Cantaloupe	1 cup, cubed: 84 calories, 1 g fat	An antioxidant double whammy, with 68 mg of vitamin C and enough beta-carotene to cover 65% of your daily vitamin A quota.
(7) Cherries	1 cup: 84 calories, 1 g fat	A good source of perillyl alcohol, which helps prevent cancer in animals.  Heart-protective anthocyanins give cherries their color.
(8) Cranberry juice	1 cup: 144 calories, 0 g fat	Fights bladder infections the same way blueberries do.
(9) Grapefruits	1/2 fruit: 39 calories, 0 g fat	A good source of vitamin C and a compound called naringenin, which helps suppress tumors in animals.
(10) Purple grapes and juice	1 cup seedless: 113 calories, 9 g fat	Offer three heart-guarding compounds:  flavonoids, anthocyanins and resveratrol.  (Green grapes are not rich in them)

If you insist on eating meat there are some good choices you can make…we’ll jump ahead on the list to give you a sneak preview.

Beef	3 oz, cooked: 150 to 280 calories, 5 g to 20 g fat	Beef is a good source of both CLA and iron, but since it’s also high in saturated fat, have it no more than three times a week.
Chicken, without skin	3 oz, cooked: 162 calories, 6 g fat	Remove the skin and you’ve got an excellent, low fat source of protein.  And 3 oz provides 38% of the RDA for the B vitamin niacin.
( Lamb	3 oz, cooked, trimmed of fat: 175 calories, 8 g fat	Lamb, like beef, is also a good source of CLA.  Ditto beef’s saturated fat warning and weekly consumption recommendation.
Lean pork	3 oz, cooked, trimmed of fat: 140 calories, 4 g fat	Fat-trimmed pork tenderloin has one-third less fat than even lean beef.  And it boasts 71% of the RDA for thiamine.

If Healthy Life doesn’t offer you enough good food ideas, here are some other excellent resources for you to peruse.

http://tinyurl.com/lcmlalt

http://tinyurl.com/lqg7ce8

http://tinyurl.com/k2zzypk

http://tinyurl.com/m9ojjbx

Exercise

Ok, now lets talk exercise.  Why is it important and what should you be doing to stay fit and healthy.  For more on that subject we turn to the famed Mayo Clinic.  Here’s what they say:

How much should the average adult exercise every day? http://www.mayoclinic.org/healthy-living/fitness/expert-answers/exercise/faq-20057916

• Aerobic activity.Get at least 150 minutes a week of moderate aerobic activity or 75 minutes a week of vigorous aerobic activity. You also can do a combination of moderate and vigorous activity. The guidelines suggest that you spread out this exercise during the course of a week.
• Strength training.Do strength training exercises at least twice a week. No specific amount of time for each strength training session is included in the guidelines.

Moderate aerobic exercise includes such activities as brisk walking, swimming and mowing the lawn. Vigorous aerobic exercise includes such activities as running and aerobic dancing. Strength training can include use of weight machines or activities such as rock climbing or heavy gardening.

As a general goal, aim for at least 30 minutes of physical activity every day. If you want to lose weight or meet specific fitness goals, you may need to exercise more. Want to aim even higher? You can achieve more health benefits, including increased weight loss, if you ramp up your exercise to 300 minutes a week.

Short on long chunks of time? Even brief bouts of activity offer benefits. For instance, if you can’t fit in one 30-minute walk, try three 10-minute walks instead. What’s most important is making regular physical activity part of your lifestyle.

Other exercise links:

http://www.nhs.uk/Livewell/fitness/Pages/physical-activity-guidelines-for-adults.aspx

http://www.nytimes.com/health/guides/specialtopic/physical-activity/recommended-exercise-methods.html

https://www.google.com/url?

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A message from Bob Aronson, Founder of Bob’s Newheart blogs.

Bob’s Newheart was established to support and help everyone, but particularly those who need or have had organ transplants.   Most of our blogs specifically address donation/transplantation issues while others are more general, but they are all related.  Because anti-rejection drugs compromise immune systems, transplant recipients are more susceptible to a variety of diseases.  We provide general health and medical information to help them protect themselves while at the same time, helping others live healthier lives and avoid organ failure.

The Bob’s Newheart mission is three-fold; 1) to provide news and information that promotes healthier living so people won’t need transplants; 2) To help recipients protect their new organs and; 3) to do what we can to ensure that anyone who needs an organ can get one.   About 7,000 Americans die every year while waiting for a life-saving organ.  I am sure you will agree that should not happen.

In the U.S. the great majority of people support organ donation, but only about 40% of us officially become organ donors.  Many have good intentions but just don’t get around to it.

No one likes thinking about their ultimate demise, but we all know there’s no way of predicting how long we will live.  There are just too many intangibles. My transplanted heart came from a 30 year old man.  I’m sure he had no intention of being a donor at that age.  So why leave donation to chance?  If you are not yet a donor, please register at www.donatelife.net it only takes a few seconds. Then, tell your family about your decision so there is no confusion when the time comes to donate.

One organ donor can save or positively affect the lives of up to 60 people.  There is no nobler thing you can do than becoming an organ donor.

A Better Way to Combat Obesity

By Dr. Priscilla Diffie-Couch

Introduction by Bob Aronson

Obesity is an equal opportunity disease.  It is no respecter of age, gender, race or religion.  It is deadly and growing so that it now affects more than a third of U.S. adults (nearly 80 million people).  According to the Obesity Society, 69 percent of American adults are either affected by obesity or having excess weight.  http://www.obesity.org/resources-for/what-is-obesity.htm

The National Institutes of Health (NIH) says the combination of poor diet and physical inactivity cause about 300.000 deaths a year, the second leading cause of preventable death in the U.S.

Obesity puts individuals at risk for more than 30 chronic health conditions including:  type 2 diabetes, high cholesterol, hypertension, gallstones, heart failure, fatty liver disease, sleep apnea, GERD, stress incontinence, heart failure, degenerative joint disease, birth defects, miscarriages, asthma, and numerous cancers.

Priscilla Diffie-Couch E.E.D. has been researching and writing about health issues for over two decades.  Her reporting is factual, objective, helpful and frank. She is a frequent contributor to Bob’s Newheart.

A Better Way to Combat Obesity

By Priscilla Diffie-Couch E.E.D

Obesity is more than an abundance of food and a shortage of exercise.  It is more than the substitution of sugar for fat or the easy access to cheap fast foods.  Few would question the ever-increasing obsession with food or need to get to the root of that problem.  But too few treat obesity as a genuine threat.  Yet what good does it do to make the world safe from terrorism while we watch millions of people being held hostage by food until they eat themselves to death?

What caused Americans to get so fat?  Research is replete with the absolute proof that eating fat does not cause us to get fat   ( www.wnyc.org/story/eating–fat–doesnt–make–us–fat).    In fact, we have learned that the introduction of low-fat food into our diet was one of the greatest health mistakes ever made.  We have only learned lately that, with the exception of transfat, fat is not a culprit in causing disease.  On the contrary, when we remove fat from our diet, we deprive ourselves of vital nutrients that prevent disease, in particular, vitamin D ( medicinenet.com/ vitamin_d_deficiency/related…/index.htm ).

A shocking number of diseases are associated with low levels of vitamin D:  Alzheimer’s, dementia, diabetes, fatty liver, high blood pressure, Chron’s disease, allergy, MS, depression, osteopenia, cancer, rickets, cystic fibrosis, celiac disease and obesity itself.  Reliable recent evidence shows that many Americans are short of vitamin D (health.usnews.com/…/many-americans-fall-short-on-their-vitamin–d).

Making matters worse, obese people do not make as much vitamin D3 in their guts as normal weight people do.  That exacerbates the shortage of vitamin D.  In one study obese subjects had significantly lower basal 25-hydroxyvitamin D concentrations and higher parathyroid hormone concentrations than did age-matched control subjects.  Evaluation of blood vitamin D₃ concentrations 24 hours after whole-body irradiation showed that the incremental increase in vitamin D₃ was 57% lower in obese than in non-obese subjects (ajcn.nutrition.org/content/72/3/690.abstract).

Besides the fact that low levels of vitamin D contribute to obesity and obesity further reduces levels of vitamin D, we are caught in another vicious cycle.  Omitting fat deprives us of the unequalled satiating power of full-fat foods.  That circles us right back into further weight gain.

Another result compounds the problem.  Food without fat loses much of its flavor.  So food manufacturers fill that void with added sugar and

salt.  But neither the presence of sugar or salt is independently responsible for the fattening of America.  Our bodies have always been able to tolerate salt and sugar in controlled amounts.  It is the unregulated unparalleled quantities of sugar in our foods–not ingested fat–that turns to fat in the human body.

Upon closer observation, it is not just the quantity of sugar that causes our bodies to lose essential metabolic control.  It turns out that simple carbohydrates in any food form are treated the same as sugar when we ingest them.  Table sugar and white bread work equally efficiently to impair our body’s ability to use insulin.  And that causes constant hunger and disease and bulging bodies.  Bulging bodies crave food.

So someone came up with the brilliant idea of replacing sugar in food and drink.  Along came the introduction of sugar substitutes, possibly the second biggest health mistake ever made.  Recent research strongly suggests that sweeteners cause blood sugar spikes.  (See the study published in Nature, September 17, 2014 “Artificial Sweeteners Induce Glucose Intolerance by Altering Gut Bacteria.”)  The negative consequences are the same–possibly worse.  Drinks sweetened with sugar substitutes have zero calories.  So we happily consume greater quantities of sugar-free food and drink with abandon, never realizing how much this contributes to our weight problem.

That still does not fully explain why we are getting more and more obese as a nation.  Obviously, easy access to abundant food and drink of any kind makes it harder to control our weight.  The super-sizing of everything we eat is now so common that we feel cheated if we are offered what once was a normal sized hamburger or portion of fries.  The original six ounce soda now seems like a drink intended for a small child.  Just as we have readjusted our view of what is overweight because there are so many more overweight people than ever before, we have readjusted our view of portion size.  That results in eating far more calories than ever before.Is quantity then the real culprit in packing on the pounds?  Without a doubt, it is a major contributor to obesity.  A summary reported in April of this year by Whole Health Source charts the rise in calorie intake and its impact on obesity.  “Calorie Intake and the U.S. Obesity Epidemic” points out that Americans increased their total calorie intake by 363 calories a day between 1960 and 2009.  Surprisingly, during this time obesity has trebled yet we have cut our intake of fat from 45% of total calorie to less than 33%.  What is not so surprising is that we now consume mostly simple carbohydrates.  (www.hsph.harvard.educ/nutritionsource/fats-full-story/).

Substituting simple for complex carbohydrates changes the food equation.  What is almost always missing when we eat the wrong foods in any quantity is fiber.  Fiber is a magic agent that prevents sweetened food and drink from causing a sharp insulin spike (www.sharecare.com/health/type-2…/food-and-blood-sugar–levels).  Fiber is the friendly element in food that causes us to detect texture and tricks our stomachs into feeling fuller on less quantity.  We need from 25 to 35 grams of fiber daily.  Yet it impossible to find a single meal when we eat out that offers more than two or three grams of fiber, if that.  Even when we eat at home, we fill our plates with everything but fiber.

Eating to stay slim requires daily monitoring of what we put in our bodies.  It is not easy.  Yet, Americans have continued to search for some simple formula for fighting the fat that creeps on to our bodies more readily with each passing year.  Diet pills don’t work.  Diet plans are a dismal failure.

It goes without saying that Americans are less active now than ever before in history.  The sad fact is that, the fatter people are, the harder it is to be active.  Slim people tell fat people to walk.  They can’t.  Many rely on riding on special carts to even be able to navigate through the grocery store.  The amount of effort required to lose only a few pounds causes too many of the overweight and obese simply to give up.

So what is the solution to obesity?  No one seems to know.  Individually, however, I feel certain that we could make a discernible dent in the problem by doing something very simple.  Retrain ourselves and our children to abide by the nutrition rules that worked so well back when obesity was a rare burden.  Every meal should consist of single portions on a 10-inch dinner plate (except for salad) consisting of 30% full fat, 30% protein, and 60%  complex carbohydrates, which contain multiple grams of fiber.  Substantial gains in loss of fatness could be achieved if we asked ourselves before every meal or snack, “Where is the fiber?”

Allowing ourselves and our children dessert only if we followed the rules for healthy eating spelled out above would provide a bonus for maintaining a healthy weight.

But most of us know what we should do individually to avoid getting fat. Having that knowledge has yet to solve the obesity problem.  We have been left alone too long.  Sporadic solutions are not the answer.  Companies that have independently created incentive programs that reward people who lose weight find themselves subject to discrimination lawsuits.

I cringe as I write these words but I have come to believe that we have no choice but to get the government of every nation with an obesity problem directly involved.  Independent drug researchers are never going to discover the magic fat-dissolving pill.  National research agencies must be fully funded to seek causes and solutions for the world-wide obesity malady.  New standards for defining obesity must be based on actual medical outcomes.  Validity of using Body Mass Index or waist circumference for predicting negative health effects must be re-examined and adjusted for age.  Meanwhile, steps need to be taken to implement workable plans to gain a foothold in arresting obesity.  I have never been an advocate of total government intervention.  But, when every possible private option has been exhausted, imposing universal programs may be the only answer.

The government must step up to reduce the burden of being fat.  There are at least 300,000 reasons why.  That is the number of deaths per year in the US estimated to be associated with obesity.  More than 78 million Americans can now be classified as obese.  That is more than the combined populations of California, Texas and New York.  If the current trend continues, by 2030 that number will increase to a shocking 45 to 51% of the population.

Obesity is now the second leading preventable cause of death in our country.  It is linked to sixty chronic conditions like diabetes, high blood pressure, stroke, heart disease, osteoporosis, breast cancer and others.  It is now safer to smoke, drink to excess, or be impoverished than it is to be obese.

The fatter we get, the less active we are.  The less active we are, the sicker we get.  The sicker we get, the greater the demand for costly drugs and hospital care and doctor visits. The more we spend on medical care, the more stress we feel.  The more stress we feel, the more we turn to food.  Clearly, the problem of obesity has ballooned into a never-ending cycle.

This cycle is not easily broken.  Sadly, in a routine trip to the grocery store, we can see a disturbing number of people so obese that they could have been found only in “freak” shows fifty years ago.  We are no longer surprised to see a rack of size 5X clothing on display at Wal-Mart.  Ironically, the fatter we get, the fewer of us see ourselves as fat.  By current definition, an ordinary person six foot tall who weighs 221 pounds is classified as obese.  But because one in three Americans is now overweight, our perception of “fatness” has changed.  Fat people look at fatter people with disgust.  Other people are fat.  We just need to lose a few pounds. 

Losing pounds is not easy.  Studies show that most of us underestimate our calorie intake and overestimate our level of activity. Fat people sit on the sidelines while others ride bikes, hit tennis balls and swim.  Fat kids watch TV and sit in front of computers while their slimmer counterparts run and play.  The multi-billion dollar diet industry has failed.  The misguided low-fat diet craze has failed.  The only success story we can point to is the supersizing of America.

What will it take to break this supersizing cycle?  Thirteen years later, we are still aware of the changes in our lives prompted by the attack on 9-11-2001.  If terrorists had killed 300,000 Americans that day—as obesity does each year–it is hard to imagine the extent of government intervention in our lives aimed at protecting our safety and well-being.

What will it take to wake us up?  Obesity now claims more lives than illicit drug use, car and plane wrecks combined.  In 2009 alone, obesity cost our nation $152 billion.  These enormous costs are borne by us all. They show no signs of abating.  Individual efforts to curb obesity have failed.  That leaves little choice but to turn to the government for solutions.

The specific role of government should take the form of incentives, not mandates like those used in national security.  Medical research needs to be funded to provide clear guidance for designing programs that can break the cycle of disease and disorders resulting from being fat.  Government must first focus on finding out why we are fat and then on prevention.  Providing specific incentives associated with being fit not fat must be incorporated into the infrastructure of our lives.  A massive campaign must be mounted to make the public aware of these new programs.

Such government programs should begin early in our public schools.  Required physical education classes should be reinstated from primary through the twelfth grade.  Physical fitness should be given prestigious treatment among honors awarded to students of all ages.  Teachers in every field of study should be rewarded for creating curricula that require students to get up move around the classroom.  School systems should receive monetary incentives for the number of students they graduate that are not fat.  Government recognition of healthy fit kids should once again become a central concern of Health, Education, and Welfare.

Nutrition courses should be required at all grade levels.  Schools should be rewarded for increasing the number of students who stay on campus and eat nutritious meals.  Healthy snack breaks should be a part of daily school ritual at every level so that teachers can verbally reward students who actually eat their fruit.  Tax payer money should not be spent on school lunch programs that compete with fast-food fare.  Advertisements of non-nutritious foods—as has been done with alcoholic beverages and cigarettes–must be banned from television and certainly in the schools.  Deals between schools and the soft drink industry must be ended.

Programs for adults must also be designed to provide incentives for not being fat.  Providing discounts for drugs required because of conditions caused by obesity is counterproductive.  Doing so not only fails to discourage weight gain, but it also ignores what studies show to be the number one medicine to prevent and treat common diseases.  It does not come in a bottle.  It is called exercise.  Exercise, we now know, is superior to Prozac for treating mild to moderate depression.  Exercise can reverse certain kinds of heart disease and do away with the need for medicine to control blood sugar.  Abundant research shows that even light weight-lifting can enable elderly people to get up out of their wheel chairs and walk after only few weeks.   A proper diet and exercise can free many people with high blood pressure from medication.  Something as simple as daily brisk walks can produce far more dramatic results than drugs in how fat and fit we are.

Ways for identifying people eligible for health discounts can be established.  People who get a driver’s license must pass written and driving tests.  Safe drivers and home owners get discounts on insurance.  Similar systems can be set up to reward fit people when they apply for health insurance.  A certificate from a doctor can show the results of blood tests, blood pressure readings and other health measures that indicate fitness.  Scales can easily give readings on site.  Just as cars are given a sticker showing they have passed inspection, centers of fitness and nutrition can be certified to provide evidence of completion of nutrition tests and other requirements that must be met for various levels of discount entitlement.  Discounts for proven health supplements, as opposed to drugs to treat the maladies associated with obesity, can be awarded as part of the fitness incentive program. Obviously, such programs would demand universal fitness standards based on valid current research and updated upon discoveries in medical science.   For example, safe limits for cholesterol need to be reviewed just as blood pressure limits have recently been changed for older folks.

Goals and measurements must be stated in language that confronts the negative consequences of our present behavior.  As a communication specialist, I know that words influence behavior.  We have to stop beating around the verbal bush.  “Fat” and “obese” must be clearly defined and used openly to denote where we are and what we need to change.  We must stop fooling ourselves and our children.  Fat is not fun or funny or beautiful.  Fat is costly and risky.  And too often deadly.

The failure rate in managing our fatness and fitness has remained too high for too long.  We don’t need to spend more tax dollars on helping people buy more drugs or use more health care.  We should not be handing out tickets to help people end up in an early grave.  Exercise is free and eating right can be done without extra cost.  Doing both will save us all billions of health care dollars each year.

Federal intervention sounds like a nasty solution to some.  To the contrary, it can be accomplished by built-in rewards for those of us who successfully assume greater personal responsibility for our health, nutrition, and fitness.  And those of us who are already fit and healthy reap our rewards by not being forced to subsidize those who are not.

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An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

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A message from Bob Aronson.Bob’s Newheart was established to support and help everyone, but particularly those who need or have had organ transplants.  Some of our blogs are specifically related to donation/transplantation issues while others are more general, but they are all related.  Because anti-rejection drugs compromise immune systems, transplant recipients are more susceptible to a variety of diseases.  We provide general health and medical information to help them protect themselves while at the same time, helping others live healthier lives and avoid organ failure.

Bob’s Newheart mission is three-fold; 1) to provide news and information that promotes healthier living so people won’t need transplants; 2) To help recipients protect their new organs and; 3) to do what we can to ensure that anyone who needs an organ can get one.   About 7,000 Americans die every year while waiting for a life-saving organ.  I am sure you will agree that should not happen.

In the U.S. the great majority of people support organ donation, but only about 40% of us officially become organ donors.  Many have good intentions but just don’t get around to it.  It is hard to accept, but no one knows how long they will live.  My transplanted heart came from a 30 year old man.  I’m sure he had no intention of being a donor at that age.  If you are not yet a donor, please register at www.donatelife.net it only takes a few seconds. Then, tell your family so there is no confusion when the time comes to donate.  One organ donor can save or positively affect the lives of up to 60 people.  There is no nobler thing you can do than becoming an organ donor.

Bob Aronson Founder of Bob’s Newheart Established November 3, 2007

The Greatest Public Health Threat is Here Now — Antibiotic Resistant Diseases

By Bob Aronson

Antibiotics and drugs called antimicrobial agents have been used for the last 70 years to treat patients with infectious diseases who might genotherwise have died.  Unfortunately these “Miracle” drugs were used for such a long time and so indiscriminately that the organisms they were designed to kill have mutated and become more resistant to them. In some cases the drugs don’t work at all anymore.

Each year in the United States, at least 2 million people become infected with antibiotic resistant bacteria and at least 23,000 of them die as a result. While 23,000 is a significant number it does not even come close to being in the catastrophic category so there’s not much media attention given to the problem  – until now and this headline.

Is Antibiotic resistance: the greatest public health threat of our time?

This is not the stuff of science fiction.  It is real and it is supported by both the World Health Organization (WHO) and by the U.S. Centers For Disease Control in Atlanta, Georgia (CDC)

The WHO says we are in a “post-antibiotic era”, in which even the most minor bacterial infections could mean death, a statement made true because of antibiotic misuse, overprescribing and poor diagnoses.

A world without antimicrobials would be a world without modern medicine, so why is there not more urgency in addressing the global rise of drug resistance? The New Statesman brought leading health experts together to discuss the problem. http://www.newstatesman.com/sci-tech/2014/07/antibiotic-resistance-greatest-public-health-threat-our-time

Antibiotic-resistant infections can happen anywhere. The CDC says that most of them happen in the general community; however, most deaths related to antibiotic resistance happen in healthcare settings such as hospitals and nursing homes.  http://www.cdc.gov/drugresistance/threat-report-2013/index.html

 The Threat to You

Diseases that either are or are becoming antibiotic resistant http://www.cdc.gov/drugresistance/DiseasesConnectedAR.html

A growing number of disease-causing organisms or pathogens, are resistant to one or more antimicrobial drugs—including the bacteria that cause tuberculosis, the viruses that cause influenza, the parasites that cause malaria, and the fungi that cause yeast infections.  All are becoming resistant to the antimicrobial agents used for treatment.  Curious about other diseases that may not respond to your antibiotics?   Here’s a partial list from the CDC.  The full list can be seen by clicking on the above link.

Acinetobacter is a type of gram-negative bacteria that is a cause of pneumonia or bloodstream infections among critically ill patients. Many of these bacteria have become very resistant to antibiotics.

Anthrax

Anthrax is a serious disease caused by Bacillus anthracis, a bacterium that forms spores. Anthrax most commonly occurs in wild and domestic mammalian species, but it can also occur in humans when they are exposed to infected animals or to tissue from infected animals or when anthrax spores are used as a bioterrorist weapon. Some strains of B. anthracis may be naturally resistant to certain antibiotics and not others. In addition, there may be biologically mutant strains that are engineered to be resistant to various antibiotics.

Carbapenem resistant Enterobacteriaceae

Untreatable and hard-to-treat infections from carbapenem-resistant Enterobacteriaceae (CRE) bacteria are on the rise among patients in medical facilities. CRE have become resistant to all or nearly all the antibiotics we have today. Almost half of hospital patients who get bloodstream infections from CRE bacteria die from the infection.

Gonorrhea

Neisseria gonorrhoeae causes gonorrhea, a sexually transmitted disease that can result in discharge and inflammation at the urethra, cervix, pharynx, or rectum.

Group B streptococcus

Group B Streptococcus (GBS) is a type of bacteria that can cause severe illnesses in people of all ages, ranging from bloodstream infections (sepsis) and pneumonia to meningitis and skin infections.

Methicillin-resistant Staphylococcus aureus (MRSA)

Methicillin-resistant Staphylococcus aureus (MRSA) causes a range of illnesses, from skin and wound infections to pneumonia and bloodstream infections that can cause sepsis and death. Staph bacteria, including MRSA, are one of the most common causes of healthcare-associated infections.

Salmonella, non-typhoidal serotypes

Non-typhoidal Salmonella (serotypes other than Typhi, Paratyphi A, Paratyphi B, and Paratyphi C) usually causes diarrhea (sometimes bloody), fever, and abdominal cramps. Some infections spread to the blood and can have life-threatening complications.

Shigella

Shigella usually causes diarrhea (sometimes bloody), fever, and abdominal pain. Sometimes it causes serious complications such as reactive arthritis. High-risk groups include young children, people with inadequate hand washing and hygiene habits, and men who have sex with men.

Streptococcus pneumoniae

Streptococcus pneumoniae (S. pneumoniae, or pneumococcus) is the leading cause of bacterial pneumonia and meningitis in the United States. It also is a major cause of bloodstream infections and ear and sinus infections.

Tuberculosis

Tuberculosis (TB) is among the most common infectious diseases and a frequent cause of death worldwide. TB is caused by the bacteriaMycobacterium tuberculosis (M. tuberculosis) and is spread most commonly through the air. M. tuberculosis can affect any part of the body, but disease is found most often in the lungs. In most cases, TB is treatable and curable with the available first-line TB drugs; however, in some cases, M. tuberculosis can be resistant to one or more of the drugs used to treat it. Drug-resistant TB is more challenging to treat — it can be complex and requires more time and more expensive drugs that often have more side effects. Extensively Drug-Resistant TB (XDR TB) is resistant to most TB drugs; therefore, patients are left with treatment options that are much less effective. The major factors driving TB drug resistance are incomplete or wrong treatment, short drug supply, and lack of new drugs. In the United States most drug-resistant TB is found among persons born outside of the country.

Typhoid Fever

Salmonella serotype Typhi causes typhoid fever, a potentially life-threatening disease. People with typhoid fever usually have a high fever, abdominal pain, and headache. Typhoid fever can lead to bowel perforation, shock, and death.

Vancomycin-Intermediate/Resistant Staphylococcus aureus(VISA/VRSA)

Staphylococcus aureus is a common type of bacteria that is found on the skin. During medical procedures when patients require catheters or ventilators or undergo surgical procedures, Staphylococcus aureus can enter the body and cause infections. When Staphylococcus aureus becomes resistant to vancomycin, there are few treatment options available because vancomycin-resistant S. aureus bacteria identified to date were also resistant to methicillin and other classes of antibiotics.

Malaria

Malaria is a mosquito-borne disease caused by a parasite. People with malaria often experience fever, chills, and flu-like symptoms. The development of resistance to drugs poses one of the greatest threats to malaria control and has been linked to recent increases in malaria morbidity and mortality. Antimicrobial resistance has been confirmed in only two of the four human malaria parasite species, Plasmodium falciparum and P. vivax.

 WHO: Antibiotic Resistance Now a ‘Major Threat to Public Health’

Antibiotics are powerful tools for fighting illness and disease, but their overuse has helped create bacteria that are outliving the drugs used to treat them.

Antibiotic resistance is a quickly growing, extremely dangerous problem. World health leaders have described antibiotic-resistant bacteria as “nightmare bacteria” that “pose a catastrophic threat” to people in every country in the world. Many more people die from other conditions that were complicated by an antibiotic-resistant infection.

In addition, almost 250,000 people who are hospitalized or require hospitalization get Clostridium difficile each year, an infection usually related to antibiotic use. C. difficile causes deadly diarrhea and kills at least 14,000 people each year. Many C. difficile infections and drug-resistant infections can be prevented.

How Bacteria Become Resistant

When bacteria are exposed to antibiotics, they start learning how to outsmart the drugs. This process occurs in bacteria found in humans, animals, and the environment. Resistant bacteria can multiply and spread easily and quickly, causing severe infections. They can also share genetic information with other bacteria, making the other bacteria resistant as well. Each time bacteria learn to outsmart an antibiotic, treatment options are more limited, and these infections pose a greater risk to human health.

Infections Can Happen to Anyone, Anywhere

Anyone can become infected with antibiotic-resistant bacteria anywhere and anytime. Most infections occur in the community, like skin infections with MRSA and sexually transmitted diseases. However, most deaths related to antibiotic resistance occur from drug-resistant infections picked up in healthcare settings, such as hospitals and nursing homes.

 What you can do to protect yourself against drug-resistant infections

 Bob’s Newheart is providing two answers to this question.  The first from the CDC and the second from a panel of physician experts who were interviewed for the PBS TV show, Frontline.

 CDC Advice

 There are many ways you can help prevent the creation and spread of resistance. First, when you are sick, do not demand antibiotics from your doctor or take antibiotics that were not prescribed to you directly for your specific illness. When taking antibiotics, do not skip doses, and make sure to follow the directions about dose and duration from your doctor.

Second, like all diseases, common safety and hygiene methods can prevent disease and spread. Make sure to:

• Get updated and regular vaccinations against drug-resistant bacteria
• Wash your hands before eating and after using the restroom to avoid putting drug-resistant bacteria into your body
• Wash your hands after handling uncooked food to prevent ingesting drug-resistant bacteria that can live on food
• Cook meat and poultry thoroughly to kill bacteria, including potential drug-resistant bacteria

What healthcare providers can do to protect patients from drug-resistant infections (CDC)

There are many ways to help provide the best care to your patients while protecting them against antibiotic-resistant infections.

• Follow all necessary infection control recommendations, including hand hygiene, standard precautions, and contact precautions.
• Diagnose and treat resistant infections quickly and efficiently. Treatment options change often because resistance is complex. Make sure to follow the latest recommendations to ensure you are prescribing appropriately.
• Only prescribe antibiotics when likely to benefit the patient, and be sure to prescribe the right dose and duration.
• Be sure to clearly label dose, duration, and indication for treatment, and include appropriate laboratory diagnostic tests when placing antibiotic orders. This will help other clinicians caring for the patient to change or stop therapy when appropriate.
• Take an antibiotic time out, reassessing therapy after 48-72 hours. Once additional information is available, including microbiology, radiographic, and clinical information, a decision can be made on whether to continue the same therapy.
• When transferring patients, ensure the other facilities are notified of any infection or known colonization.
• Keep tabs on resistance patterns in your facility and in the area around your facility.
• Finally, encourage prevention methods with your patients. Make sure they understand how to protect themselves with vaccines, treatment, and infection control practices such as hand washing and safe food handling.

From PBS “Frontline”

 Eight Ways to Protect Yourself from Superbugs

http://www.pbs.org/wgbh/pages/frontline/health-science-technology/hunting-the-nightmare-bacteria/eight-ways-to-protect-yourself-from-superbugs/

October 22, 2013, 9:32 pm ET by Sarah Childress

Everyone is at risk of becoming infected by drug-resistant bacteria, especially as some have begun to appear outside of hospitals in the general community. So how worried should you be?

The PBS investigative show, “FRONTLINE” asked three infectious disease doctors these questions: what the risks are, how to protect yourself, and what questions to ask when a loved one is in the hospital.

Dr. Sean Elliott is the medical director of infection prevention at the University of Arizona Health Network

Dr. Brad Spellberg is an infectious diseases specialist at Harbor-UCLA Medical Center

Dr. Wendy Stead is an infectious diseases specialist at Beth Israel Deaconess Medical Center in Boston

Frontline condensed their advice into eight handy tips to help keep bugs at bay.

Of course, none of this substitutes for actual medical advice. For serious concerns, always consult your doctor.

 1. Don’t Panic

Everyone may be at risk, but the chances of catching a drug-resistant bug outside of the hospital are small for most. “For the average healthy person walking down the street?  Those organisms are not much of a threat,” Stead says.

“The first principle is to try to live a healthy lifestyle to reduce the need to be in the hospital” where you are more likely to encounter these bugs, Spellberg says. Keep your home and work space clean. Be aware of the food you eat: Wash fruits and vegetables carefully and cook other food properly to reduce your chance of coming into contact with harmful bacteria.

2. Know What to Look For

How do you know if you have a superbug?

“You don’t.  And your doctor won’t either, at least at first,” Spellberg said. “The infections caused by antibiotic-resistant bacteria do not cause different symptoms than infections caused by antibiotic-susceptible infections.”

While it’s impossible to give broad advice about so many different kinds of bacteria — and if you’re concerned, you should call your doctor first — there are some signs that an illness might be more serious. “In general, fevers, if they’re accompanied by shaking chills, if they’re getting worse instead of better, that would suggest there’s a bacterial process,” Elliott said.

With community-acquired MRSA, many people first notice a skin infection or boil that becomes larger and more painful, Stead says.

But if you do suspect such an infection, don’t rush to the emergency room, where you might be exposed to other bugs or infect others. Call your primary-care doctor first for advice.

3. Wash Your Hands with Soap and Water. Really wash them. Doctors say they cannot recommend this enough.

 “Wash your hands regularly and religiously in the normal times that you would think you should wash them,” Stead says. “Give it a good amount of time” — about 15 seconds — “scrubbing hands thoroughly, not just in and out of the water.”

Turn off the faucet using a paper towel.

Alcohol-based hand-sanitizers are handy too, but remember that one bug, C.Diff, is resistant to that as well. But it does respond to soap and water. So Wash. Your. Hands.

4. Be Careful with the Antibacterial Soap

 The FDA hasn’t determined whether these soaps are more effective than regular soap, and some doctors don’t recommend using them. “You do not need to take ‘antibacterial’ soaps for routine use,” Spellberg says. “There may be specific medical circumstances that warrant special antibacterial cleansers, but these should be prescribed by your physician.”

“A lot of the antibacterial soaps are more drying to the skin than would be a simple soap,” Elliott says. “So the more that we break down our skin barriers the higher the risk of getting superimposed bacterial. The real key is the soap and water and the physical action  — and keeping hands moisturized. “

5. Ask Your Doctors to Wash Their Hands

“It is every patient’s right to have every health-care provider entering the room to have clean hands,” Elliott says. “We’re supposed to do it, we mandate 100 percent hand- hygiene compliance, but the reality is that doesn’t happen,” he says.

Some hospitals even make health-care providers wear buttons encouraging patients to ask them if they’ve washed their hands. Even if they’re buttonless, you should feel free to ask your providers about it.

“Really — we are not offended by that,” Stead says.

6. Get A Flu Shot

“When people get influenza, they actually become at higher risk as they recover for complicating bacterial infections,” Stead says, because people with weakened immune systems are more vulnerable to other bugs.

“Community-acquired MRSA is a big risk in patients who have recently had influenza,” she notes. “They get influenza and they start to get better, and then the staph comes in. … That’s life threatening.  They wouldn’t have been at risk for that if they hadn’t had influenza in the first place.”

7. Ask Whether You Need that Antibiotic

 Doctors sometimes feel pressured by patients or their families to prescribe an antibiotic, even if it’s not necessary. Don’t assume you need one — antibiotics don’t work on viral infections like colds or the flu. If your doctor does recommend one, ask whether you really need it.

“Using antibiotics does kill off non-resistant bacteria in your body and makes you likely to acquire antibiotic-resistant bacteria in their place,” Spellberg says. “If your doctor says that they think your infection is probably caused by bacteria and that you do need an antibiotic, ask, ‘Do I need a broadly active antibiotic, or can I take a narrower antibiotic?’ The broader the antibiotic, the more damage to your normal bacteria can be caused. We want physicians to try to prescribe antibiotics that are as narrow as possible for a given infection.”

8. Advocate for Loved Ones in the Hospital

 One of the ways drug-resistant bacteria spreads in hospital is through tubes inserted in the body, such as catheters. If someone you care about is on such a device, don’t be afraid to ask doctors whether they still need it, and when the tubes can come out.

“Hospitals are much more aggressive about removing things if they’re not needed anymore,” Stead says. “But having patients be aware and try to get things out too is good.”

“Every day that decision needs to be made: Do these things need to stay in or do they need to come out?” Elliott says. The key, he says, is “empowering patients or their advocates to stand up for their health-care needs.”

Conclusion

While physicians and health care workers have a responsibility to provide the best health care, patients also have some responsibility for their own well-being and it boils down to being informed and not being afraid to ask tough questions.

Most of us don’t like challenging physicians, we just assume that will all those many years of education and the raft of framed diplomas on the wall that they must know what they are doing, but the practice of medicine is as much art as it is science.  That means even highly educated medical experts can come to the wrong conclusions, so it is extremely important for patients to expand their knowledge of the conditions to which they are exposed or have contracted, ask tough, knowledgeable questions and then, demand clear unequivocal answers. Doing so could mean the difference between life and death.

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 Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.

Bob’s Newheart was established to support and help everyone, but particularly those who need or have had organ transplants.  Some of our blogs are specifically related to donation/transplantation issues while others are more general, but they are all related.  Because anti-rejection drugs compromise immune systems, transplant recipients are more susceptible to a variety of diseases.  We provide general health and medical information to help them protect themselves while at the same time, helping others live healthier lives and avoid organ failure.

Bob’s Newheart mission is three-fold; 1) to provide news and information that promotes healthier living so people won’t need transplants; 2) To help recipients protect their new organs and; 3) to do what we can to ensure that anyone who needs an organ can get one.   About 7,000 Americans die every year while waiting for a life-saving organ.  I am sure you will agree that should not happen.

In the U.S. the great majority of people support organ donation, but only about 40% of us officially become organ donors.  Many have good intentions but just don’t get around to it.  It is hard to accept, but no one knows how long they will live.  My transplanted heart came from a 30 year old man.  I’m sure he had no intention of being a donor at that age.  If you are not yet a donor, please register at www.donatelife.net it only takes a few seconds. Then, tell your family so there is no confusion when the time comes to donate.  One organ donor can save or positively affect the lives of up to 60 people.  There is no nobler thing you can do than becoming an organ donor.

Bob Aronson

Founder of Bob’s Newheart

Established November 3, 2007

Is Your Doctor Ordering Unnecessary Tests? 7 To Watch For

 Introduction by Bob Aronson

Dr. Priscilla Diffie-Couch, regularly sends out health, fitness and medical tips and ideas to family members and some friends.  She is highly regarded as a resource, and an amazing researcher with a knack for cutting through the medical terminology and making it understandable.  In our family it is not uncommon to hear, “Priscilla says…..”  and that makes it gospel.

Today I received this email from her:

“INAPPROPRIATE TEST ORDERS INUNDATE HEALTH SYSTEM”

From Priscilla Diffie-Couch

 That was the headline in one of my health sources today.  They cited three health tests that are misused frequently:

• Test for healthy vitamin D levels.  The correct test is called 25-dehydroxyvitamin D test.  The incorrect test ordered more often than not is called 1,25-hidroxyvitamin D test.  Note the 1 and the comma in front of the wrong test (designed to detect renal failure) plus the “I” instead of an “E” in the word dehydroxyvitamin.  Of course, you who read my health notes have known the correct test to request for several years now.
• Test for anemia by determining levels of B12.  The older you are, the more questions you need to ask about the lab standards that apply to your B12 test results.
• Ionized calcium tests are overused and do not tell you if you have a shortage of calcium.

Upon reading Priscilla’s email I wondered what other tests might be unnecessary so I did some quick internet research and found plenty.  Here’s my quick intro followed by a report from AARP.

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Physicians are among the most trusted people on earth.  When a Doctor orders a CT scan or an X Ray or even a blood test few of us think to question her.  We know she has completed several years of medical school and for many of us it is unthinkable to question that kind of expertise.

But – question we must because physicians regularly order unnecessary tests and those tests can negatively affect the patient in two ways; 1) it could well be money out of your pocket either in higher medical bills (An MRI, or magnetic resonance imaging scan, can cost $1,000 or more), increased co-pays or more costly insurance and; 2) the tests could be dangerous. Ordinary X-rays are rarely a concern, but super-sharp X-rays called CT scans involve relatively large radiation doses and can raise the risk of cancer.  And So, you might ask, “Why would they order tests they know are unnecessary?  Is it because they are afraid of lawsuits?”  Good question, and lawsuits are part of the answer.  Professional pride is another.  Like us, doctors don’t like being wrong either.

As suggested, the most commonly cited reason is “defensive medicine”: the fear of being sued by patients for not ordering a test. An American Academy of Orthopedic Surgeons study that involved 72 orthopedic surgeons who saw over 2,000 patients reported ordering 20% of their expensive imaging tests “for defensive reasons.”  Included was 57% of bone scans, 53% for ultrasounds, 38% for MRIs, 33% for CT scans and 11% for x-rays.

Those unnecessary and overused tests account cost the American patient upwards of $60 billion a year. That’s a whole lot of hard earned money, but fear of lawsuits alone is not the prime motivator.  The leader is something most people have never heard of. It’s called the M & M conference (Morbidity and Mortality).  That’s where you stand up in front of your peers and “fess up” to your mistakes.  Needless to say, that can be quite embarrassing.  The M & M conference, though, is a double edged sword because while it is unlikely the physician will ever make that mistake again, it is very likely they will order more unnecessary tests because they are good insurance against another M & M visit.

With that background here is a summary of 7 tests that may be unnecessary.  Tests you should ask about when you are scheduled for any of them.  AARP did a fine job of assembling this information along with the dangers the tests present and the exceptions that can be made for having them.

 

7 Medical Tests and Treatments You May Not Really Need

Think twice before getting these procedures 

by: Elizabeth Agnvall, AARP

The American Board of Internal Medicine Foundation (ABIM) asked nine medical societies — from family doctors to allergists and cardiologists — to each identify five commonly used medical tests and treatments that are often unnecessary. A list of 45 overused procedures was presented Wednesday, April 4, 2012, at a news conference at the National Press Club in Washington, D.C.

“We’re changing the culture in medicine,” says Christine K. Cassel, M.D., president of the ABIM, about this new Choosing Wisely campaign, which represents some 375,000 doctors. Consumer Reports also has joined the doctors’ campaign.

Related

• What tests and screenings do you need if you are over 50? Read
• Understanding lab test results. Read
• Clean out your medicine cabinet. Read
  

“Too much testing is being done that isn’t needed, that doesn’t work,” says John Santa, M.D., who directs health ratings for Consumer Reports.

Here are seven of the most popular, most overused tests and treatments for people over age 50 that the AARP Bulletin has selected from the Choosing Wisely campaign. For the complete list go to www.choosingwisely.org.

1. EKG and other heart screening tests for low-risk people without symptoms.

American Academy of Family Physicians

These can be lifesaving for those experiencing chest pain or other symptoms of heart disease. But a 2010 Consumer Reports survey found that 44 percent of people with no signs or symptoms of heart diseasehad an EKG, an exercise stress test or an ultrasound. For several years, cardiology guidelines have discouraged heart screening tests for people who have no symptoms and are not at high risk, and yet their use “is more common than it needs to be,” says James Fasules, M.D., an official with the American College of Cardiology. For those at low risk for heart disease, an EKG or cardiac stress test is far more likely to show a false positive result than find a real problem.

Dangers: False positive tests often lead to more tests and even invasive heart procedures.

Exceptions: If you have diabetes or other conditions that raise your risk, talk to your doctor. Use this calculator to find out your 10-year risk of having a heart attack.

2. Bone scans for osteoporosis for women under 65 and men under 70 with no risk factors.

American Academy of Family Physicians

Bone density decreases and the risk of fractures increases with age, but medical experts say that most women don’t need a bone density test until age 65. Still, many doctors recommend the scan starting at age 50.

Dangers: Bone density (DXA) scans can lead to unneeded medications that can have serious side effects.

Exceptions: Talk to your doctor about a scan before age 65 (70 if you’re a man) if you were or are a smoker; you’ve used steroid medications regularly; have low body weight; or have already had a fracture. ThisFRAX tool can help you calculate your risk.

3. Antibiotics for mild-to-moderate sinus infections.

American Academy of Family Physicians, American Academy of Allergy, Asthma & Immunology

Despite physician awareness campaigns about the overuse of antibiotics for sinus infections, the drugs are prescribed in more than 80 percent of cases, according to the American Academy of Family Physicians. More than 90 percent of sinus infections are caused by viruses — and the drugs only work against bacterial infections. 

Dangers: The widespread overuse of antibiotics is behind the spread of increasingly virulent strains of drug-resistant bacteria.

Exceptions: If symptoms last more than seven days or worsen after initially improving. Some people develop a secondary bacterial infection and then antibiotics may be needed.

4. NSAID painkillers for people with high blood pressure, heart failure and any chronic kidney disease.

American Society of Nephrology

Many people use Advil, Motrin (ibuprofen) or prescriptions such as Celebrex and Voltaren for everything from arthritis to headaches. But these common painkillers can be dangerous, especially for people with high blood pressure or kidney disease. (These medications can raise blood pressure, cause fluid retention and interfere with kidney function.) Tylenol (acetaminophen), tramadol, or short-term use of narcotic painkillers may be safer than NSAIDs, according to the nephrologists.

Dangers: These drugs are linked to stomach bleeding and increased risk of heart and kidney problems.

5.  X-ray, CT scan or MRI for low back pain.

American College of Physicians, American Academy of Family Physicians

About 80 percent of Americans will suffer from back pain. Low back pain is the fifth most common cause for all doctor’s visits. “The vast majority of people with nonspecific low back pain simply get better … within four to six weeks, with or without a physician’s intervention,” says Patrick Alguire, M.D., an official with the American College of Physicians. If older people get an image, experts say the results will almost always show an innocent abnormality that has nothing to do with the back pain.

Dangers: Some tests expose people to unnecessary radiation and can lead to expensive back surgery.

Exceptions: When the doctor suspects serious underlying conditions or if the pain isn’t better in six weeks.

6. Diagnostic tests for suspected allergies.

American Academy of Allergy, Asthma & Immunology

Some 35 million Americans suffer from seasonal allergies. And millions of Americans increasingly blame a food allergy or sensitivity — fromgluten to milk — for their health woes. Some doctors or health providers now perform a blood test, called an immunoglobulin (IgG), for food allergies. But Linda Cox, M.D., president elect of the allergy group, says the test simply doesn’t work. For seasonal allergies, many doctors run abattery of blood and skin tests dubbed IgE, when just a few specific tests would do. By asking patients when and where they have symptoms, doctors can pinpoint what tests they should run.

7. CT scans and other imaging procedures for uncomplicated headaches.

American College of Radiology

Severe headaches can be excruciating and frightening, but unless they are accompanied by other key symptoms it rarely makes sense to get a CT scan or MRI of the brain. Yet “it happens all the time,” says David Seidenwurm, M.D., a neuroradiologist in Sacramento, Calif. Patients get frightened, doctors worry about lawsuits and people “want all the information right away,” he says. “It’s easier to do the scan than to have the conversation.”

Dangers: Radiation exposure raises cancer risks in the population and false-positives lead to more testing and patient anxiety.

Exceptions: Worrisome symptoms — trouble speaking, blurred vision, weakness on one side — or other signs that the headache is caused from something more dangerous, such as a brain tumor.

Remember readers, despite all the diplomas on the wall, the high tech office and the “Dr.” title, the physician works for you, just like your plumber, electrician or carpenter.  If you don’t understand, if you are confused or if you disagree, speak up. It is your health we are dealing with here so be polite and courteous but be firm.  Physicians have been known to make mistakes.  Make sure they don’t happen to you.  Probe a little more and demand understandable answers .  By being a little more assertive you just might get better care.

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 Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Do You Believe In Miracles — Medical Miracles?

 Introduction by Bob Aronson

Since Bob’s Newheart began publishing on WordPress over seven years ago, we have tried to offer encouragement, sound medical information, choices for healthy living,  news of what’s to come and  as much inspiration as possible for those who suffer from debilitating diseases.   As a heart transplant recipient I know what its like to feel desperate and without hope.  I also know there is always hope,  always.

Dr. Priscilla Diffie-Couch and her sister Dawn Anita Plumlee have been contributors to our inspiration series in the past.  Today Dr. Diffie-Couch returns with the amazing story of how she suvived what could have been — what should have been–
a deadly cancer. 

MY PERSONAL MEDICAL MIRACLE

Priscilla Diffie-Couch ED.D.

Friday morning I awake relieved.  My doctor has pronounced my ulcer completely healed.  I return from my errands humming happily and stop to check my message machine.  Why has my doctor’s office tried three times to reach me?  I already know the good news.  Now I have my doctor on the phone and listen to his strange tight voice. 

“We need to repeat your biopsy.  I’m afraid it looks suspicious.”

“Suspicious?”  Characters in murder mysteries look suspicious.  People lurking in dark alleys look suspicious.  My biopsy looks suspicious?

“How suspicious?” I ask cautiously.

“Highly suspicious?”

“You mean, as in malignant?”

“Well…yes.”

“So are we talking cancer in my stomach?”

“Yes.  I’m afraid so.”

“The prognosis if that’s true?”

“Not very good, I’m afraid.”

He’s afraid?  I’m trembling with fear.  We settle the details for another more extensive biopsy.  I call my husband Mickey.  Probably a mix-up, we agree–someone else’s tissue.  My friend Donna, who happens to be a pathologist calls.  Her voice too is strained.  Having reviewed my biopsy, she and her pathologist husband Dee appear after work with two bottles of their best wine.  We toast to a “mistake in the lab.”  And feel for the real owner of the suspicious biopsy tissue because the samples they both examined were literally cluttered with countless cancer cells.

Saturday begins with a long close silent hug.  If the biopsy tissue truly is mine and I have cancer, we need to be informed.  We head for the medical books in the huge used book store.  We go from there to the library.  We read in silence–page after page of gloom and doom. It is a deadly disease.  Statistics point to a 10% survival rate for victims of stomach cancer. Pictures of my grieving family flash through my mind as the tears well up in my eyes.

Another sustained quiet hug when we get home.  I break away suddenly and declare that the statistics are on our side. If ten percent of the people beat this cancer, that will include me, so my chances then become one hundred percent.  That is how we will present the news to family.  That is optimistic but believable, given my general good health and fighting spirit.

Sunday Mickey calls family members.  My son Jeff and his wife Diana arrive shortly to share our outlook of a hundred percent chance of survival.  My sister tells me to get a copy of Bernie Siegel’s Love, Medicine and Miracles, which I vow to do immediately.  Later that evening Mickey and easily win our mixed doubles tennis match.  I begin reading the book my sister suggested.  The seeds for positive thinking are being planted as I do.

On Monday I undergo what is called a D & C for a feminine bleeding problem also related to cancer and set a tentative schedule for full removal of my stomach on Thursday, should these suspicious cancer cells truly be mine.  They are.  Donna and Dee deliver that dreaded news.  They know the grim outlook for stomach cancer.  Shattering silence.  I say something funny.  I must have.  We all burst out laughing.  I can feel a change in the climate.  I can see they are now on board as believers in my chances of survival.

On Tuesday I spell out my situation to my friend Sharon, who recently sold her share in Sound Warehouse for $46 million dollars.  Upon arrival at my doorstep, she declares with authority that she is “here to insure that I have the best medical care that money can buy.”  The doorbell rings again.  Cissy. Nancy.  Charlene.  Margie.  All bearing gifts–elegant gowns.  I may end up without a stomach but I will be the most beautifully dressed patient in the cancer ward.  We laugh at my concern about bleeding all over the operating table since the D & C didn’t arrest my flow.  We women are commonly such vain creatures.  But good friends like these are rare indeed.

The healing process begins the moment the diagnosis is confirmed with a third biopsy.  As I look at Mickey, his shoulders shaking with stifled sobs—a weak moment of looking ahead at life without me—he apologies.  Suddenly my role in this ordeal becomes clear.

When faced with your own mortality, your primary concern becomes protecting those who love you from all possible pain.  It is not a matter of bravery.  It is just a matter of loving that deeply.  Mickey and I share an uncommon love.  We have overcome enormous obstacles and built a history of disproving fatalistic predictions.  I have developed an extraordinary closeness with his family.  My own family fills my life with indescribably intense feelings.  They have known the never-ending anguish of losing Mom to a drunk driver.  They don’t deserve to deal with another untimely death.  I cannot let any of them suffer.  So the smile on my face is not an act.  It is an act of love prompted by a genuinely selfish need to be there with them to share whatever memorable moments await us all.

Donna and Dee have already made certain that I will have the best cancer surgeon in the area.  The chairman of Fina Oil, where Mickey works as a VP, vows to see that I receive VIP treat at the best cancer treatment center available.  I have too many people determined that I will be among the survivors.  I cannot let them down.

I arrange for pictures of all my family to surround me when I come out of surgery.  Sitting up on my knees on the gurney, wondering why I can’t trot down the hall to the OR, I smile at my family’s faces and remind them not to have too much fun for the next five hours.  The last thing I remember is Mickey’s hand holding mine as I am wheeled away.  I am still smiling.

Sometime during those next five hours, I lose my sense of humor.  I am groggy but aware and can hear my plaintive plea:  “Pain.  Pain.  Pain.”  I can faintly make out the images above me—my husband, son, daughter-in-law.  They watch as I am transported to ICU.  The next morning I am sure my scream shatters the glass window when two huge orderlies toss me onto the waiting gurney.  “Don’t—you—touch—me—again—without—a—member—of—my–family—present.”  They step back and are surprised when I pull myself from the gurney to the bed in my room.  My daughter, worlds away from me in lifestyle and philosophy—will stay with me the next ten days.  I watch with wonder as she handpicks the most attentive and caring staff of nurses anyone could hope for and begins to line out the plan for my care.

My gastroenterologist drops by and asks if I mind being a “teaching subject” since mine is such an unusual case.  I eagerly agree, glad to be a part of advancing medical science.  He is joined by my pathologist friend Donna, who announces that my stomach was totally clear of cancer save a tiny millimeter located at the top.  Leaving even a small part of my stomach will be too risky I am told.  “Yours must be the earliest case of stomach cancer ever diagnosed,” she declares.  How could my stomach, so full of cancer five days ago, be almost totally free of it now?  No one tries to explain that but I would later discover other equally rare and miraculous instances of spontaneous remission.  My body was eradicating the cancer by itself.

My cancer surgeon tells me he will construct a pouch from a piece of my large intestine that will serve as my stomach.  (I am eating a small portion of sugar-free Jello as he describes this phenomenal feat.  I smile as I recall a passage from humorist Dave Berry’s delightful book Stay Fit and Healthy Until You Are Dead in which he claims that our skin is the most important of our vital organs, because without it, all the disgusting hideous inner parts of us would fall out onto the sidewalk for all manner of people to trip over.

“Ok, Mother,” my daughter beams brightly at 7:00am (she who has never knowingly arisen before noon any day in her life since she ran away from home).  “Up we go now.  We have our goals for the day.”  First, soap bubbles so thick I have little peep holes for eyes, the triple scrub, a quick shave under the arms, a little talcum powder here and there, and lots of lotion everywhere.  Maneuvering seamlessly around all the wires and tubes, she is making sure every inch of me will be supremely soft and supple.

In and out of my morphine mind, I make a list of questions for her to ask my cancer surgeon, should I be asleep when he drops in.  I can hear him now whistling cheerfully down the hallway.  I emulate his demeanor as I am trying for the perfect-patient-of-the-ward award.  That shouldn’t be difficult since I am surrounded by the most efficient medical staff in America.

I feel for those people who hear the word cancer and drop into a deep and unalterable depression.  With the constant arrival of guests, flowers, gifts and cards, I am not likely to let my spirits sag. I am already writing thank you notes in my mind.  And they seem so inadequate when I think of the how everyone continues to buoy my spirits in so many countless ways.

Flitting around my hospital room, I accidentally pull out the feeding tube that was implanted in my side to insure my nourishment should my new “stomach” fail in some way.  I will be fine, I tell myself.  (I later learn that this little set-back will have a serious impact on my recovery.)

Following the highly regimented eating plan the first few weeks at home is not working.  Revulsion and nausea are my constant companions.  One day, as I step out of the bath tub, I glance up at the bank of mirrors I have so carefully avoided.  I gasp.  Looking back at me is the image of a captive in a concentration camp.  My skin clings to my bones.  My eyes are buried deep in their sockets.  I have gone too long without sufficient nourishment.

I call a friend who listens to my plight and reports that she knows someone who stopped his weight loss with Ensure, a repulsive high-calorie sickeningly sweet shake.  I have no choice.  Slowly, I begin to restore my lost pounds.

This morning I am awakened by my loving husband who has been sleeping elsewhere, partly because of his cold and partly because I have to sleep upright to keep bile from coming into my throat.  “It’s time to get out and see what’s happening in the rest of the world.  We are going to Jeff’s  weightlifting meet.”  I smile.  Life is full.  Life is good.  I’m still in it.

A quarter of a century later, I am still in it.  I beat the odds and way beyond.  In 2005 two doctors from Australia were awarded the Nobel Prize in medicine for their discovery that the bacteria H-Pylori causes almost 90% of gastric ulcers and these can lead to stomach cancer.  The actual date of their discovery was three years before my ulcer appeared in 1988.  But one study shows that it can take as many as seventeen years before American doctors adapt new medical discoveries into their practice.  That means that we must all do diligent research on the nature of and treatment for our own medical conditions.  As late as 1999, still at risk for a new cancer in my intestine, I could not find a gastroenterologist who would test me for H-Pylori.  It was my family doctor, an osteopath, who did so and prescribed the two-week treatment of triple antibiotics that could have saved my stomach in 1989.

I still face challenges associated with having no stomach.  Battling the bile that comes up from my liver makes getting good sleep an elusive dream.  Ballooning up when my colon locks up brings on birthing-like pain.  Staying hydrated to avoid arrhythmia remains a struggle.  But trips to the ER are increasingly rare and sublingual B-12 has replaced those dreaded self-administered shots.  I can now say with conviction that I am an active healthy survivor who has much to be thankful for.  I credit my friends for their devotion and for referring me to the gastroenterologist who was thorough enough to biopsy my healed ulcer.  I credit him and the talented surgeon who constructed a replacement “stomach” that has worked so flawlessly all these years.  When diagnosed with stomach cancer, most people are dead within five years.  So, many call my case a medical miracle.

I remain dubious about a beneficent god who would opt to save me while letting more deserving people die.  I am more open to the possibility that having a positive spirit causes the body to pump out protective agents yet to be identified.  I don’t pretend to be able to explain medical miracles but I am deeply thankful–for the sake of those who care–that one happened to me.

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An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

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 Bob Aronson  has worked as a broadcast journalist, Minnesota Governor’s Communications Director and for 25 years led his own company as an international communication consultant specializing in health care.

In  2007 he had a heart transplant at the Mayo Clinic in Jacksonville, Florida.  He is the Bob of Bob’s Newheart and the author of most of the nearly 250 posts on this site.  He is also the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) support group.

You may comment in the space provided or email your thoughts to him at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

EBOLA — WHAT YOU NEED TO KNOW

By Bob Aronson

Over the years this blog has offered a lot of information on how to take care of your organs.  We believe strongly that the way to solve the shortage of transplantable organs is to 1) encourage donation and 2) do everything possible to reduce the demand.  That means we must continually be on guard  to prevent threats to our health and we depend on public health officials and the news media to provide us with that information.  Ebola is the latest threat and it’s a dandy. It can destroy all of your organs — all of them.

After watching the Ebola story develop in the past few weeks I came to the conclusion that we are getting mixed messages from a number of sources and the mass media doesn’t do a very good job of filtering them, they just hop,  skip and jump from one new development to another with little effort given to finding and tying loose ends.

To date most of the regular TV news stories on the Dallas, Texas Ebola incident lack detail and as a result serve no purpose but to inflame, confuse and cause panic.  Print stories have been better but it has been hard to find many really comprehensive reports.   That’s probably because Ebola is a moving target.  Just as I was about to publish this blog, there were two new developments.

The first new development is that one of the health care workers at the Dallas hospital where the first Ebola patient died, has tested positive for the Ebola Virus.  This is a breaking news story so it won’t be covered in detail here.  The second development today is from President Obama’s National Security advisor Susan Rice who is expressing some dismay at the sorry state of the world response to the Ebola Threat. She is not so subtly sounding the alarm and calling for “All hands on Deck.”

With the exception of some investigative or in-depth network reports, TV news channels have been saying pretty much the same thing.  As the story goes, a man who had recently traveled from Liberia in West Africa to Dallas, Texas checked into an emergency room at Presbyterian hospital there with a temperature of 103 degrees.  He was treated for a stomach virus and sent home.  That’s pretty much what most people know about the Dallas situation and the Ebola virus.  The story, though, is grossly incomplete.  That is not to say the hospital in question should be exonerated of any responsibility, they should not, but nothing is ever as simple as it sounds.

It is important first, to understand what we are dealing with.  Ebola hemorrhagic fever (EHF), caused by the Ebola virus, is a severe viral hemorrhagic disease characterized by initial fever and malaise followed by gastrointestinal symptoms, bleeding, shock, and multi-organ system failure. Over 25 different viruses cause viral hemorrhagic fever. Ebola virus is a member of the virus family Filoviridae, along with Marburg virus.

EHF is difficult to distinguish from a host of other febrile illnesses, at least early in the course of disease. Other viral hemorrhagic fevers need to be excluded, especially Marburg hemorrhagic fever, as well as malaria and typhoid fever.

Patients should be isolated and viral hemorrhagic fever precautions (face shields, surgical masks, double gloves, surgical gowns, and aprons) should be used to prevent transmission. As there is presently no antiviral drug available for EHF, treatment is supportive, following the guidelines for treatment of severe septicemia. Persons who had unprotected contact with someone with EHF should be monitored.  Case fatality rates vary consistently with the specific infecting virus, ranging from zero to over 80%.

I spent 25 years of my life as a communication consultant and specialized in working with health care organizations like clinics, hospitals, research centers, pharmaceutical companies, research labs and more.  I know how important infection/contagion control is in these facilities and how much time, effort and money is spent on programs to ensure patient safety.  That’s why what happened in Dallas with the Ebola patient stands out.  Numerous studies make it very clear that in the great majority of cases in which patient safety is at risk communication is the culprit.

While Ebola may sometimes be difficult to diagnose, every hospital and clinic in this country has check lists on contagious diseases and infections.  They do regular drills, have training sessions and should be well prepared for any eventuality.  What happened in Dallas shouldn’t have happened, but it did.  Now what?

Dr. Anthony Fauci from the National Institutes of Health (NIH) an acknowledged expert on infectious diseases says that while he understands our fears we also need to understand that what is happening in West Africa is because of the weaknesses in their health system.  “West Africa,” he says, “Is not the United States, we won’t have an outbreak. Scientists know how to stop the virus from spreading.”

While I hope he is right, I wish Dr. Fauci had not said that.  Knowing how to do something and actually accomplishing it may be worlds apart.  This isn’t just about the medical profession knowing what to do, it is about all of us knowing what to do and when — and then communicating properly and following the plan.  Nothing, Dr. Fauci, is as easy as it seems. and your overly simplistic assurances could be harmful, lulling us into a false sense of security. I’ll explain more shortly.

An ABC News report tells a story that differs from Dr. Fauci’s view.   The Network account quoted Dr. Ryan Stanton, an emergency room physician in Lexington, Kentucky, and spokesman for the American College of Emergency Physicians as saying, “We’re all a little bit on edge because we’ve never seen it before.  Stuff we’ve seen before, like heart attack and stroke, we recognize as soon as we walk in the door. For Ebola, it’s not going to come as naturally.  It’s not even a needle in a haystack,” he went on. “It’s a needle in a hayfield we’re trying to find.”  That statement kind of casts some doubt on Dr. Fauci’s position.  Add the Susan Rice comments to the mix and Dr. Fauci is sounding far too positive.  If after reading this far you think, “There’s more to the Ebola outbreak than meets the eye,” you’d be right.  There is.

The question on everyone’s mind is, “How could the ER people in Dallas have missed this case?  Well, they did not miss it, it kind of missed them.   We have it on good authority that the Dallas ER nurse properly accounted for the feverish patient’s recent travel in Africa, but that information did not get communicated to the rest of the team. Instead, the patient was treated with antibiotics for a presumed run-of-the-mill stomach virus. So it appears that while the checklist was completed poor team communication prevented its proper execution.

It is entirely possible that the Nurse’ proper reaction was ignored for any number of reasons. 1) It came from a nurse, not a doctor (yes, there is institutional, professional arrogance) 2. The team was busy, tired and careless and chose to ignore the Nurse’ efforts and 3) the Nurse did not communicate with the right people and the communication was unclear, unreadable or could not be heard. I suspect that there might be a dozen more reasons or excuses as well.

I am not qualified to argue medical facts with Dr. Fauci — I don’t even want to and the reason is simple, he is right.  What he said is absolutely correct.  The medical profession does know how to stop Ebola.  What they don’t do very well,  is communicate what they know to those of us who don’t.

After 25  years of working as a communications coach and consultant to the medical profession I can tell you that communication is not one of their strong suits.  I have great respect for physicians and loved working with them but their ability to speak in understandable and memorable terms is not a well developed skill.  Think about your interactions with your doctors and how many times you leave his or her office saying, “I don’t think my questions got answered,” or, “What did he mean when he said,….”

But, let’s go back to the Dallas case.  I do not doubt that the Dallas medical team knew how to deal with Ebola.  The question that is at the core of the issue, though is, “How effective was the communication they used to put the systems in place to accomplish that end?  It is not their medical expertise I doubt, it is their ability to communicate what they know and suspect in an effective and understandable manner.   And — if the patient safety record in American health care institutions is any indication of that prowess then we are in a heap of trouble. This is where the Fauci assurances fall flat.  A 2013 story in Forbes Magazine said: http://www.forbes.com/sites/leahbinder/2013/09/23/stunning-news-on-preventable-deaths-in-hospitals/

“In 1999, Americans learned that 98,000 people were dying every year from preventable errors in hospitals. That came from a widely touted analysis by the Institute of Medicine (IOM) called To Err Is Human. This was the “Silent Spring” of the health care world, grabbing headlines for revealing a serious and deadly problem that required policy and action.

As it turns out, those were the good old days.

According to a new study just out from the prestigious Journal of Patient Safety, four times as many people die from preventable medical errors than we thought.  That could be as many as 440,000 deaths a year.

With these latest revelations, medical errors now claim the spot as the third leading cause of death in the United States, dwarfing auto accidents, diabetes and everything else besides Cancer and heart disease.

These people are not dying from the illnesses that caused them to seek hospital care in the first place. They are dying from mishaps that hospitals could have prevented. What do these errors look like? The sponge left inside the surgical patient, prompting weeks of mysterious, agonizing abdominal pain before the infection overcomes bodily functions. The medication injected into a baby’s IV at a dose calculated for a 200 pound man. The excruciating infection from contaminated equipment used at the bedside. Sadly, over a thousand people a day are dying from these kinds of mistakes.

If you aren’t alarmed enough that our country is burying a population the size of Oakland every year, try this: you are paying for it. Hospitals shift the extra cost of errors onto the patient, the taxpayer and/or the business that buys health benefits for the infected patient. My nonprofit, which provides a calculator of the hidden surcharge Americans pay for hospital errors, finds most companies are paying millions or even billions of extra dollars for the cost of harming their employees.

No Cure,  No Vaccine Because There’s No Money In It

A recurring question in the case of Ebola or diseases like it is, “Why don’t we have a vaccine or a cure?”  Part of the answer to that question is that diseases like Ebola and Marburg fall into the “Orphan disease” category. These are very rare diseases.  The rarity of the diseases provides little incentive for private industry to invest in research and development because the cost per prescription or treatment per patient would be so high few could afford them.  There is some government assistance for research but nowhere near enough.

The Orphan Drug Act of 1983 http://tinyurl.com/3vkffup provides incentives for drug companies to develop treatments for rare diseases. Since the Act was signed into federal law, the U.S. Food and Drug Administration (FDA) has approved more than 200 treatments for rare diseases.

While that number sounds good it is small when put in perspective because there are about 7,000 orphan diseases and some are quite familiar like:

• Cystic fibrosis, which affects the respiratory and digestive systems.
• Huntington disease which affects the brain and nervous system.
• Single genes are also responsible for some rare, inherited types of Examples of these are the BRCA1 and BRCA2 genes, in which certain mutations increase the risk for hereditary breast and ovarian cancers, and the FAP gene, in which mutations increase the risk for hereditary colon cancer.

You can find more information here http://rarediseases.info.nih.gov/about-ordr/pages/31/frequently-asked-questions

As noted the Orphan Drug Act is why there is any activity around Orphan diseases, but it is nowhere near enough because there are so many of them.

Thanks to marketing campaigns aimed at people exposed to asbestos we are all likely familiar with the disease called mesothelioma — perhaps the best-known orphan disease in the nation.

About 3,000 patients are diagnosed with mesothelioma each year, placing it well within the U.S. definition of a rare or orphan disease as one that affects no more than 200,000 patients at a given time.  To further complicate matters there are several different forms of the disease so what might work to control one, likely wouldn’t for another. Patients with mesothelioma live for 1 to 2 years past their diagnosis.
“One of the difficult aspects of mesothelioma is that it often not diagnosed until it is in the later stages, and it is a very aggressive cancer,” says Joe Belluck, a New York mesothelioma lawyer.

The disease is difficult to detect since symptoms come after asbestos fibers have invaded organ linings and often mimic that of a bad cold or virus. It also surfaces decades after exposure to asbestos, so it has historically affected an older population with age-related health

It is a very deadly form of cancer and one that falls into the “Orphan” category. Mesothelioma is listed as an orphan disease on registries like rarediseases.org maintained by the National Organization for Rare Diseases (NORD).

Because it affects fewer than 200,000 people at a given time (due to its high mortality rate), treatments specifically for mesothelioma are eligible for orphan drug funding from the Food and Drug Administration (FDA). Under the Orphan Drug Act, companies involved in developing and testing drugs, biologics, and other treatments specifically to treat rare diseases can get tax credits and other incentives to continue development them including:

• 7 years of exclusive marketing for the drug
• Tax credits to cover half the cost of clinical investigations
• Waiving user fees

As you can see, there is far more to the Ebola story than meets the eye.  It is a complex issue because Ebola is an Orphan disease that attacks in a multitude of ways and is not always easy to identify.  So what can you do?  Be informed. Don’t wait for information, seek it out, you might save your life and the lives of people you love.  Below are some essential facts, but click on the links, too.

Here are some fast facts on Ebola from CNN:  http://tinyurl.com/npqfzt2

CNN Eb0la Fact Sheet

Ebola hemorrhagic fever is a disease caused by one of five different Ebola viruses. Four of the strains can cause severe illness in humans and animals. The fifth, Reston virus, has caused illness in some animals, but not in humans.

The first human outbreaks occurred in 1976, one in northern Zaire (now Democratic Republic of the Congo) in Central Africa: and the other, in southern Sudan (now South Sudan). The virus is named after the Ebola River, where the virus was first recognized in 1976,according to the Centers for Disease Control and Prevention.

Ebola is extremely infectious but not extremely contagious. It is infectious, because an infinitesimally small amount can cause illness. Laboratory experiments on nonhuman primates suggest that even a single virus may be enough to trigger a fatal infection.

Instead, Ebola could be considered moderately contagious, because the virus is not transmitted through the air, well at least not much.  A sneeze could spread it if the droplets  from an infected person come in contact with someone who is not, but that’s a very short distance.  In the most contagious diseases, such as measles or influenza, virus particles are airborne for longer distances and much more time.

Humans can be infected by other humans if they come in contact with body fluids from an infected person or contaminated objects from infected persons. Humans can also be exposed to the virus, for example, by butchering infected animals.

While the exact reservoir of Ebola viruses is still unknown, researchers believe the most likely natural hosts are fruit bats.

Symptoms of Ebola typically include: weakness, fever, aches, diarrhea, vomiting and stomach pain. Additional experiences include rash, red eyes, chest pain, throat soreness, difficulty breathing or swallowing and bleeding (including internal).

Typically, symptoms appear 8-10 days after exposure to the virus, but the incubation period can span two to 21 days.

Unprotected health care workers are susceptible to infection because of their close contact with patients during treatment.

Ebola is not transmissible if someone is asymptomatic or once someone has recovered from it. However, the virus has been found in semen for up to three months.

Deadly human Ebola outbreaks have been confirmed in the following countries: Democratic Republic of the Congo (DRC), Gabon, South Sudan, Ivory Coast, Uganda, Republic of the Congo (ROC), Guinea and Liberia.

According to the World Health Organization, “there is no specific treatment or vaccine,” and the fatality rate can be up to 90%. Patients are given supportive care, which includes providing fluids and electrolytes and food.

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I  hope this report helped to clarify the Ebola issue. If you have comments make them in the space provided or contact me directly at bob@baronson.org.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

One More Last Chance

Introduction by Bob Aronson

Post  by Dawn Anita Plumlee

This post is one of several in the “Inspirational” category.  It is about hope, it is also a love story  and it’s about the pot of gold at the end of a rainbow.  Best of all, it is true, every word of it.  I can vouch for its veracity because I know the author very well.

Bob’s Newheart blogs was launched over seven years ago to help support and motivate critically ill people, their families, caregivers and friends. Many if not most of our posts speak directly to medical and health issues. A good many focus on organ donation/transplantation issues because my 2007 heart transplant is what motivated me to start writing this blog. Today’s entry, while not about medical issues or transplants in particular is true to our original intent because it deals with motivation and inspiration. 

Dawn Anita (Diffie) Plumlee is my wife Robin’s (Diffie) cousin. She is a remarkable woman with a “Can do,” upbeat attitude. Dawn Anita and her husband Jerry are special people. They have overcome incredible odds to get where they are today. Many who might experience setbacks or reversals in life are bitter and resentful. Not so with these two. I know them well and we talk often. They endured incredible life hardships but viewed them as learning experiences and never looked back other than to use their knowledge to help others.

Bob’s Newheart gets a lot of requests for “inspirational posts,” for blogs that give hope to those who feel they have none. I often get notes from people who feel hope is lost, that they cannot recover from whatever hardships have befallen them. I know  about Dawn Anita’s journey, having heard some of it from her and the rest from reading her Amazon book, “One More Last Chance,” and cannot think of a story more likely to inspire and to give hope.  It is in that spirit that we present it today.  

I should point out that she did not write this posting to sell books. That’s not Dawn Anita. Rather, she wrote it because I asked her to submit part of her story so I could include it in the “Inspirational” category of my blogs. While Dawn Anita would not use this forum to promote her book, I can. It’s a darn good read. If you like what you read here you can get more under the same title at Amazon.com.

One more note. Dawn Anita’s sister is Priscilla Diffie-Couch, another of our guest bloggers here on Bob’s Newheart.

By: Dawn Anita Plumlee

If we live long enough, all of us will face hardship in our lives, i.e. finances, death of a loved one, illness. It is up to us to decide how we handle life’s challenges. As I see it, there are two choices. Give up or have the grit and determination it takes to tackle life’s dilemmas. There is always a way if you choose to seek one more last chance. I came to this realization while writing my memoirs which bear the same title. Reaching back into my past was definitely a challenge and not one I was sure I could achieve. Recalling events in my life led me to a better understanding of myself and the way I handled adversity and the many second chances I had.

Dawn Anita and Jerry, the beginning.

I was a naïve 16-year old country girl from Oklahoma when I decided to run away to marry my sweetheart Jerry Plumlee.

I met my first challenge on the 5-day bus trip from Oklahoma to Seattle when I divulged my story about running away to a young military man who boarded the bus late one night. He saw what he thought was an opportunity to take advantage of a young, innocent country girl, only to be met with a right hook to the jaw which landed him in the aisle of the bus.

That incident, along with the very charming man with a smooth easy way of talking who convinced me that he had my best interests at heart when he asked me to come to his apartment in LA during an eight-hour layover, didn’t deter my faith in people. I could have chosen to give up and terminate my journey, but I still held on to the hope that life would be rosy once I reached my destination.

Learning to survive in a mouse infested, run-down shack with stinging scorpions so thick that several were trapped in our bathtub and in the glasses and bowls each morning with wasps swarming the house all day and copper heads under the front porch was indeed a challenge. We survived on 50 cent watermelons for several days because the $80.00 my husband earned didn’t stretch to the end of the month. The real revelation is that when I remember this time in our lives, I remember it as a great experience, and I realize that these events helped us become better equipped to face other dilemmas in life. The ironic thing is, you can survive one dilemma only to find yourself entrapped in another one just as bad or worse.

Traveling from Oklahoma to Idaho in an old pickup that rocked and rolled down the road pulling an enclosed U-haul  trailer with 3 horses inside and trying to calm a two-week old baby was definitely an adventure I will never forget. Having to overcome the fear of an empty gas tank in the middle of nowhere in Wyoming, knowing you have no milk for your baby was indeed a challenge, unaware at the time that this was merely one mishap in a long line of difficulties on the same trip. A flat tire with no spare, having to unload a horse to take the tire to be repaired, not knowing how far it may be and later to have the u-joint on the pickup break in the middle of a treacherous road on a dark and dreary night definitely can test ones character

Relieved that our resourceful brother-in-law came to our rescue and repaired the u-joint, we could not know that just a short time later, we would literally “run into” another dilemma; our brother-in-law hit a cow and smashed in the radiator on the truck. Still, we were not defeated. Our brother-in-law pulled our pickup, horse trailer, horses and all with his car over 100 miles to our destination. This was an unbelievable feat in itself. Arriving at our destination In Idaho, we did not find the paradise we were hoping for. Turmoil filled the household with too many families living under one roof.

Moving out in the middle of the night, we found ourselves stranded in a park in Coeur d-Alene with no money, food or shelter. Leaving me alone in the park with our baby, Jerry assured me that he could enroll in college, get a student loan and find a place for us to live. As I watched Jerry leave, an empty feeling washed over me. My baby is hungry; I have no milk for him and no money to buy any. Then suddenly a thought struck me; I can trade the empty pop bottles lying around in the park for some milk for my baby. I walked into a little store nearby with my baby and the empty bottles in hand, and with a touching display of generosity, the clerk gave me some milk for the bottles.

Thankful but still distraught, it seemed an eternity before Jerry returned and he had indeed accomplished his mission. He enrolled in college, obtained a $200.00 loan and found a place to live where we could keep our horses. Once again, perseverance and determination paid off. Life was good in Idaho with a few bumps along the way. I had a beautiful baby girl, Jerry was in college and I went to work for a flower shop, but Oklahoma was calling us.

It was a struggle when we moved back to Oklahoma, but we eventually found our way. Jerry went to work on the ranch where my dad was the foreman. I went to work for an attorney, and although I loved my job, I had an ever-burning desire to become a country singer. I joined a local band and sang almost every weekend. Many opportunities presented themselves in the music business. I let several chances slip away which would have no doubt led to fame, the most significant of which was a contract with RCA Records. I wanted it so badly, but I couldn’t bear to leave my children and go on tour. I felt sure I could achieve my goal in music when the kids graduated. Little did I know that when we finally took the leap of faith and moved to Nashville, that Music City welcomes a 40-year-old female with a closed mind and a cold heart. I did have several regional hits, won several awards for my singing and songwriting, including “Female Vocalist of the Year” and “Entertainer of the Year” at the Oklahoma Opry, but it seemed that my vision of becoming a country music star would be an elusive dream.

The years passed quickly; our lives were full with our jobs, family and music. Little did we know that life as we knew it was about to come to an end. The company who owned the ranch where Jerry had worked for ten years and Dad had worked for over twenty changed management and fired Dad and Jerry. We had to move out in thirty days. Shattered, we didn’t know how we would survive; where would we live, where would Jerry work. It was so sudden. This upset in our lives was devastating, but it could not begin to compare with the tragedy that would soon tear our lives apart. My mother was killed in a car wreck. Such a waste, a horrible, tragic loss. Mom was only 55. She was our strength; how could we go on without her? We were not prepared to handle a trauma of this magnitude.

Mom and Dad had a rare and beautiful relationship like no other.

Dawn Anita’s Mom and Dad

He needed comfort, someone to lean on, and I was that person. Somehow I pulled myself together because I knew Dad needed me now more than ever. It was difficult for him to cope, and the everyday struggles of life without Mom were insurmountable. At times his actions were not those of the dad I had always known. A neighbor called one morning to report that Dad had spent the night in the pasture in a cow trough. I completely understood when he told me that sometimes he just couldn’t face that empty house. Dad eventually learned how to cope and make the pieces in life fit once again. Evidence that with just a little help and a strong will, you can recover and overcome the toughest of times.

Our life definitely took a sudden turn when Jerry went into the oil business and we decided to move to Dallas. Our world quickly crumbled around us when the oil business went south. We were sitting in a house that didn’t belong to us, obligated for furniture we didn’t need with a responsibility to pay a year’s lease on an office and office furniture. The most devastating part was not our loss, but Dad’s. He had invested a sizeable sum of money in the business and we had no way to recover his money.

We returned to our little ranch house in Oklahoma with sad hearts and empty pocketbooks only to discover that all of our worldly possessions had been stolen. Times like these can definitely test ones spirit. Desperate times call for desperate measures, so we decided to saddle our horses and embark on a journey from Oklahoma to Nashville with only a few dollars, a lot of guts, my old guitar and some cassette tapes with my music. Our goal was to make it to Nashville in time for me to sing at FanFair. We were definitely a sight to behold with all of the gear loaded onto our horses… saddles, saddle-bags, bed rolls, nose bags, horse feed, camping supplies, canteens and slickers. We could not begin to fathom what an adventure we were about to undertake. Our journey took 24 days and it rained 22 days. We had many close calls…a lightning storm, Jerry’s horse jumping out in traffic, close calls on slick bridges, but the memories of the wonderful friends we made along the way helped us forget the saddle sores, the danger and the aching bones.

Total strangers opened their hearts, their homes and their pocketbooks to help us on our journey. The healing rain during that long ride from the state we have always known as home to the city of country music had washed our spirits clean. I knew that there might never be one more last chance for fame and fortune in the tenuous trouble-strewn world of music, but I was certain there would be one more last chance for us to feel whole again.

It has now been 56 years since I first boarded that bus in Tulsa, Oklahoma, as a naïve 16-year old country girl and 22 years since our horseback ride from Oklahoma to Nashville. It seems so long ago, and yet time has passed so quickly. There have been many twists and turns in the road on our journey up the hill, but we have persevered. We have 2 gorgeous children, 7 grandchildren and 4 great-grandchildren. Life is beautiful, but the road hasn’t always been smooth. I lost my dad and many other close friends and relatives.

We’ve had to overcome sickness and have had many personal struggles, but through it all, we have believed and held onto the hope that all will turn out well. As we stroll hand in hand down the other side of the hill, we feel confident that whatever happens, we will remain strong and resilient to the end.”

Another note from Bob Aronson

Dawn Anita’ s story is inspirational because of her spirit.  She just refuses to lose faith and to give in to adversity.  While she may  not have become a huge country music star that’s Nashville’s loss.  Go to her website http://www.freecountryrecords.com/ watch and listen to her perform and you’ll agree.  She is the consummate performer, when she takes the stage and begins to sing, audiences are captivated.  I am proud to call her “Cousin” and friend.  Thank you Dawn Anita and Jerry, you are wonderful examples of the American Spirit.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Follow-up To; How do You Apologize and Why Should You?

By Dr. Priscilla Diffie-Couch

A while back, family member Priscilla Diffie-Couch who holds a doctorate in communication, penned a blog for Bob’s Newheart titled, “How do You Apologize and Why Should You?”  (https://bobsnewheart.wordpress.com/2014/08/18/how-do-you-apologize-and-why-should-you/) It became very popular but in its popularity generated a multitude of questions.  Dr. Diffie-Couch, who is never comfortable with loose ends provided some very thoughtful and effective answers.  Please feel free to share them and the original blog with anyone you choose.

In forwarding her response draft she said, “I am pleased that so many of you read my blog on effective apologies.  Several of your comments and questions have prompted some points of clarity.”

QUESTION

I have repeated my apology so many different times that my friends now treat it as though it is not sincere.

If you find yourself repeating the same apology for the same offense to the same people, you must question whether you have ever included all of the five dimensions of an effective apology:

 

1. RECOGNITION
2. RESPONSIBILITY
3. REMORSE
4. RESTITUTION
5. REPETITION

At the very minimum, you are evidently repeating the offensive behavior that caused the original distress.  People grow tired of hearing repeated promises when a change in your behavior is what they really expect from you.

QUESTION

I try to explain my offensive behavior very carefully before I actually say the words “I’m sorry” when I apologize.  Is that the best approach?

 

No.  You run two risks with this approach.  (1) You will add to the anger and hurt of those you have offended, the longer you put off saying the two words they want to hear:  “I’m sorry.”  (2) You will waste your lengthy explanation because the listener or reader will be so focused on hearing or seeing those two magic words that they will miss much of the rest of your message.

QUESTION

What is the best way to end an apology so that it doesn’t drag on endlessly?

Start by saying you are sorry.  Determine what the hurt party expects.  Make sure you come to a mutual understanding of the exact nature of the offense.  Work to include the five dimensions.  Is it something you said or didn’t say?  Did or didn’t do?  Then end by saying exactly what you intend to do to avoid repeating the offense.

QUESTION

How soon do I have to apologize?                 

Apologize without delay.  Undue delay adds to the offended person’s distress and allows for compounding the problem and even encourages imagined transgressions that never occurred.  Allow yourself enough time to pull your thoughts together and assess the nature of your offensive words or behavior.  It never hurts to take great pains in how you plan to phrase an apology.

 QUESTION

Is it better to apologize in person or in writing?  Can I do so on the phone?

You would think apologies should be done in person.  But that is not always the best or most practical approach.
You can express a simple “I’m sorry” immediately through any medium.  But you need to let the party know you plan to follow up with specifics.  Even when it is practical to apologize in person, a carefully-thought-out written apology can smooth the way for a more comfortable and satisfying personal interaction.  Put yourself in the reader’s place.  Reread your apology many times with a careful eye as to the “tone” of the words you have chosen.

As a person who wears top-of-the-line hearing aids, I can tell you that apologizing on the phone is fraught with potential perils.

QUESTION

Isn’t it better to keep my apology very general so that I can avoid getting into the same issues that caused the hurt feelings?

Absolutely not.  In fact, the offended party will be looking for a direct reference to the exact hurtful deed or word and will wonder if you really understand why you are giving an apology if you fail to recognize the specific nature of your offense.  It is pointless to promise to make obscure and general behavior changes when it is a particular offense that caused the hurt.  Until you address the matters of contention fully, the offended person is unlikely to view your apology as satisfying or sincere.

QUESTION

Regardless of how explicitly I apologize for my offense, the wounded party keeps bringing up some other offense I’ve committed in the same altercation?  Isn’t enough enough?

Unfortunately, it is all too common for people to “gunny sack” a lot of old grievances and then to dump them all at once in a given confrontation.  Ask yourself if you recognize your guilt in each separate issue the offended party raises.  If you do, you are obligated to make amends for each issue as a separate matter.  In healthy relationships, people avoid “gunny sacking.”  Every disagreement should be dealt with independently without delay.

QUESTION

Shouldn’t I just keep my apology very simple if that is my style?

That depends on your goal.  If you seek only satisfy your own personal standards with your apology, you can choose what to include and hope for the best.  However, if your goal is to repair and restore a damaged relationship, then you should heed the approach that works most successfully in a larger world.

QUESTION

Wouldn’t it be better in some cases just to skip the apology, let things go, and move on with your life?
That is what many people do who are left wondering why they have so much trouble maintaining close, trusting relationships.  Those same people excuse offending behavior by saying, “That’s just the way I am.”  If you are one, ask yourself, “When did the death of my growth occur”?  At age three?  Thirty-three?  Sixty-three?

CONCLUSION

Unresolved issues left to smolder can burst into flames in sudden and devastating ways. 

Valued relationships must be nurtured.  That demands taking responsibility for any role you may play in eroding a relationship.  As human beings, we will find ourselves guilty more than once of causing temporary distress in other people’s lives.  Learning how to repair the damage that distress can cause necessarily involves utilizing effective apologies.  That is a part of actively becoming a better person.  That kind of growth is possible and desirable as long as we live.

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An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

 

Got “Low T?” Buyer Beware — the Therapy May Not Be Safe!

By Bob Aronson

Almost everyone is familiar with the commercials and ads that offer relief for men suffering from “Low T.”   Most interpret that to mean “diminished sex drive” and there is no end to the number of claims of treatments and/or cures.  Bottom line?  They are selling sex.  The manufacturers   of “Low T” products, physicians, clinics and therapists are pandering to the male fear of erectile dysfunction and there’s absolutely no guarantee that any of the products will work.  Worse yet, they could kill you.

The ads produced by those who are promoting Testosterone therapy amount to fear mongering at its
worst.  Nothing will destroy a man’s ego faster than an inability to perform in bed and many will go to any extreme to make sure that doesn’t happen.  If you could drill deeply into the male ego you likely would find that the ability to get and hold an erection is extremely important and when that ability is lost even once, many men will feel as though they have lost their manhood and that their life is over. The ads posted here are real.

 

 

 

The “Low T” condition should not be taken lightly, if in fact that is an accurate diagnosis.  Unfortunately the number of physicians and others who offer that diagnosis is far greater than the number who are qualified to do so or who even perform a thorough examination

In 2013, 2.3 million men received a prescription for testosterone, up from 1.3 million in 2010, according to the U.S. Food and Drug Administration (FDA).  About 70 percent of men prescribed testosterone drugs were between the ages of 40 and 64.

According to an FDA analysis, 21 percent of patients prescribed testosterone drugs did not appear to have had their testosterone concentrations tested before or during treatment, something the agency described as “concerning.”

On Tuesday, September 17, 2014 an FDA advisory panel said that Testosterone replacement therapies should be “Reserved for men with specific medical conditions that impair function of the testicles.”  While the FDA is not obligated to follow advisory panel advice, it typically does.  The panel also recommended that companies be required to conduct additional studies to assess the cardiovascular risk of their products for patients with age-related low testosterone.

Symptoms of low testosterone include loss of libido, decreased muscle mass, fatigue and depression.

The panel voted 20-1 in favor of restricting the drugs’ authorization to people with medically related low testosterone, such as a tumor or genetic disorder.

If the FDA acts on the recommendation companies could not market or promote their products for age-related low testosterone, but physicians would still have the right to prescribe products “off label” in any way they choose.  An important lesson for consumers is that just because a physician prescribes it, doesn’t mean it’s right for you.

What is Testosterone?

The Mayo Clinic says this: Testosterone is a hormone produced primarily in the testicles. Testosterone helps maintain men’s:

• Bone density
• Fat distribution
• Muscle strength and mass
• Red blood cell production
• Sex drive
• Sperm production

Hypogonadism is a disease in which the body is unable to produce normal amounts of testosterone due to a problem with the testicles or with the pituitary gland that controls the testicles. Testosterone replacement therapy can improve the signs and symptoms of low testosterone in these men. Doctors may prescribe testosterone as injections, pellets, patches or gels.

What are the Risks of Testosterone Therapy?

Also according to the Mayo Clinic http://www.mayoclinic.org/healthy-living/sexual-health/in-depth/testosterone-therapy/art-20045728?pg=2

Testosterone therapy has various risks. For example, testosterone therapy may:

• Contribute to sleep apnea — a potentially serious sleep disorder in which breathing repeatedly stops and starts
• Increase your risk of a heart attack
• Cause acne or other skin reactions
• Stimulate noncancerous growth of the prostate (benign prostatic hyperplasia) and growth of existing prostate cancer
• Enlarge breasts
• Limit sperm production or cause testicle shrinkage
• Increase the risk of a blood clot forming in a deep vein (deep vein thrombosis), which could break loose, travel through your bloodstream and lodge in your lungs, blocking blood flow (pulmonary embolism)

The American Recall Center  http://www.recallcenter.com is a consumer oriented group with the following vision.  “At the American Recall Center, we aim to give pertinent information on FDA warnings for prescription drugs and medical devices. Through our extensive library of recalls and medical information, and our experienced editorial team, it is our mission to empower those who have been adversely affected.”  In other words, they monitor the health care environment and provide accurate and timely information about drugs, procedures, devices and practices that affect individual Americans.

Recently I was contacted by The American Recall Center http://www.recallcenter.com and alerted to their concerns about Testosterone Therapy and the various actions being taken with regard to the practice.  I looked carefully at what they had to say and also conducted my own brief investigation that resulted in verification of their claims.  What follows is a direct copy from their website.  It is alarming and should be taken very seriously by anyone either undergoing such therapy or considering it.

TESTOSTERONE LAWSUIT

http://www.recallcenter.com/featured-topics/testosterone-replacement-therapy/testosterone-recall/

The treatment of low testosterone (also known as hypogonadism or Low-T) in men has increased significantly since the year 2000. However, with the growth of such testosterone replacement therapy, there has also been an increase in the number of studies that have shown a link to various medical problems, such as the increased risk of heart attacks, strokes and other potentially deadly outcomes. As a result, the FDA has issued several statements on the use of testosterone therapy, and a number of lawsuits have been filed claiming that treatments to combat low testosterone have resulted in harm to the patient or even fatalities.

FDA Investigation and Testosterone Replacement Therapy

Although the FDA has not issued any recalls of testosterone due to the possibly dangerous nature of various treatments, early in 2014 the agency published an alert stating that it was going to begin investigating the potentially adverse outcomes of testosterone supplements. Specifically, the FDA denied any conclusions related to increased probability of heart attacks, strokes or death in men undergoing testosterone replacement therapy. However, the agency said that would analyze data from multiple studies and monitor side effects of testosterone treatments as reported through its MedWatch program. The FDA also advised patients and physicians to understand both the risks and the benefits of drugs and supplements before beginning any treatment.1

In June 2014, the FDA announced that it manufacturers of testosterone would be required to add a warning label to their products indicating the possible formation of blood clots in patients’ veins. The agency stressed that this requirement was unrelated to the separate investigation into the other health problems that may be associated with testosterone use.2

Testosterone Lawsuits and Multidistrict Litigation

As a result of the potentially dangerous consequences of taking various low-testosterone treatments — which are available as topical gels, transdermal patches, buccal systems, subcutaneous pellets and injections — a significant number of lawsuits have been filed against manufacturers of testosterone products.

Because of the large number of cases related to testosterone products, and the even larger number of potential future case that could expand into the thousands, the United States Judicial Panel on Multidistrict Litigation has created MDL No. 2545 to handle actions related to testosterone products. In the original order, the panel noted its hesitancy to encompass an entire industry with a broad range of products under a single MDL. However, the panel members acknowledged that even among different products and across competing companies, many of the claims associated with the testosterone cases have common discovery, and thus are suitable for MDL status.

At the time of the original order on June 6, 2014, forty-five cases across four districts were pending. Since then, additional cases have been added.4

Testosterone Manufacturers Facing Lawsuits

The following table lists companies that have faced lawsuits related to their testosterone treatments, along with the names of some commonly known testosterone products they have developed. Other companies also may have faced litigation for their testosterone products.

COMPANY	TESTOSTERONE PRODUCT(S)
AbbVie Inc./Abbott Laboratories Inc.	AndroGel
Eli Lilly and Co./Lilly USA LLC	Axiron
Endo Pharmaceuticals	Aveed, Delatestryl, Fortesta
Actavis, Inc.	ANDA, LibiGel, Testosterone Enanthate Injection USP, Testosterone Cypionate Injection USP, AndroDerm
Auxilium Pharmaceuticals, Inc.	Testim, Testosterone Gel CIII, Testopel, Striant
Pfizer, Inc./Pharmacia & Upjohn Co.	Depo-Testosteroneh, Depo-Testadiol

Alternatives?

According to Healthline (http://www.healthline.com/health/low-testosterone/natural-boosters#1),  there are some alternatives to Testosterone Therapy and while there’s no guarantee they will work, there is no guarantee the therapy will work either and these alternatives, unlike the therapy, won’t hurt you.

Additionally, following these suggestions can help your general health as well as low testosterone production.  Try them, you have nothing to lose and a better life to gain.

1. Get a Good Night’s Sleep

It doesn’t get more natural than a good night’s sleep. A University of Chicago study showed that lack of sleep can greatly reduce a healthy young man’s testosterone levels. That effect is clear after only one week of shortened sleep. Testosterone levels were particularly low between 2:00 and 10:00 p.m. on sleep-restricted days. Study participants also reported a decreased sense of well-being as their blood testosterone levels dropped.

How much sleep your body needs depends on many factors, but theNational Sleep Foundation suggests that adult males generally need between seven and nine hours per night.

2. Lose That Excess Weight

It is not uncommon for overweight, middle-aged men with prediabetes to also have low testosterone levels. A 2012 study revealed that weight loss among men with prediabetes improved their testosterone levels by almost 50 percent.

These findings don’t mean you have to go on a crash diet. The healthiest way to achieve and maintain a healthy weight is through a sensible diet and regular exercise.

3. Get Enough Zinc

Men with hypogonadism generally have zinc deficiencies. Studiessuggest that zinc plays an important part in regulating serum testosterone levels in healthy men.

According to the Office of Dietary Supplements, adult males should get 11 mg of zinc and females should get 8 mg of zinc each day. Oysters have a lot of zinc. It is also found in red meat and poultry. Other food sources include beans, nuts, crab, lobster, whole grains, and many fortified foods.

4. Go Easy on the Sugar

Zinc isn’t enough to ensure you’re getting the all the nutrition you need. The human body is a complex system that requires a wide variety of vitamins and minerals for smooth operation.

Research published by The Endocrine Society shows that glucose (sugar) decreases testosterone levels in the blood by as much as 25 percent. This was true of study participants whether they had prediabetes, diabetes, or a normal tolerance for glucose.

5. Get Some Good Old-Fashioned Exercise

Studies show an increase in total testosterone levels after exercising, especially after resistance training. Low testosterone levels can affect your sex drive and your mood, but the good news is that exercise improves mood and stimulates brain chemicals that help you feel happier and more confident. Exercise also boosts energy and endurance and helps you sleep better. All that can help with your sex drive and sexual performance, too. Fitness experts recommend 30 minutes of exercise every day.

Avoid Alcohol.  And…a final tip and this one is mine.  If you are concerned about your ability to perform sexually you should know that consuming alcohol will not help.  Alcohol often will present two contradictory effects.  The first effect is that it will diminish your inhibitions and therefore boost your desire for sex.  Unfortunately, the increased desire is usually met with a decreased ability to get an erection.  You get all dressed up with nowhere to go.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Answers to the Most Common Health Questions

                Author unknown but provided to us by Priscilla Diffie-Couch, E.d. D

Dr. Priscilla Diffie-Couch is my wife’s cousin and the health advisor to the entire Diffie family.  Priscilla stays on top of the latest research and provides all of us with updates on a regular basis.  Recently she sent the information you are about to read.  She knows  not where it originated but vouches for it’s accuracy.  I think you will find  these commonly asked questions and the answers most helpful.  

Does olive oil prevent heart disease? 

Short answer: Yes
The health benefits of olive oil come from the presence of polyphenols, antioxidants

That reduce the risk of heart diseases and cancers.
But to get these healthy compounds, consumers should buy good-quality, fresh “extra-virgin” olive oil, which has the highest polyphenol content. Most commercially available olive oils have low levels of polyphenols associated with poor harvesting methods, improper storage, and heavy processing.

Do cough syrups work?
Short answer: No
In 2006, the nation’s chest physicians agreed that the majority of over-the-counter cough medicines don’t actually work.

These colorful syrups typically contain doses of codeine and dextromethorphan that are too small to be effective.
Only cough suppressants that contain older antihistamines seem to relieve coughs.

That includes brompheniramine, an active ingredient in Dimetapp.

Do sugary soft drinks lead to diabetes? 
Short answer: Yes
The majority of health research is stacked against sugar-sweetened soda. A large 2004 study in the Journal of the American Medical Association found that women who drank one or more sugary drinks per day increased their risk of developing type 2 diabetes by 83% compared to those who consumed less than one of these beverages per month.

Do I need sunscreen with more than 30 SPF?
Short answer: No
Sunscreens with an SPF (sun protection factor) of 30 block about 97% of ultraviolet rays,

While sunscreens with an SPF of higher than 30 block 97%-98%.
It’s more important that you choose “broad-spectrum” sunscreen, meaning it protects against both UVB and UVA rays.

Sunbathers also need to apply a generous amount of sunscreen in order to get the full benefit of the SPF.

Is the MSG in Chinese likely to give you a headache?
Short answer: No
A review of 40 years of clinical trials, published in the journal of the American Academy of Nurse Practitioners in 2006,

Found that all previous research “failed to identify a consistent relationship between the consumption of MSG

And the constellation of symptoms that comprise the syndrome,” including headaches and asthma attacks.
The misconception spawned from several poorly-done small studies in the 1960s that seemed to connect MSG with a variety of maladies that people experienced after eating at Chinese restaurants.

Learn more about the MSG myth here »

Do nuts make you fat?
Short answer: No
As much as 75% of a nut is fat. But eating fat doesn’t necessarily make you fat.

The bigger factor leading to weight gain is portion-size.

Luckily, nuts are loaded with healthy fats that keep you full. They’re also a good source of protein and fiber.
One study even found that whole almonds have 20% less calories than previously thought because

A lot of the fat is excreted from the body.

Is walking as effective as running? 
Short answer: Yes
Studies have shown that how long you exercise — and thus how many calories you burn — is more important

Than how hard you exercise. Running is a more efficient form of exercise, but not necessarily better for you.
A six-year study published in the journal Arteriosclerosis, Thrombosis, and Vascular Biology in April found that walking at a moderate pace and running produced similar health benefits, so long as the same amount of energy was expended.

Is drinking fruit juice as good for you as eating fruit?
Short answer: No
Calorie for calorie, whole fruit provides more nutritional benefits than drinking the pure juice of that fruit.

That’s because when you liquefy fruit, stripping away the peel and dumping the pulp, many ingredients like

Fiber, calcium, vitamin C, and other antioxidants are lost.
For comparison, a five-ounce glass of orange juice that contains 69 calories has .3 grams of dietary fiber and 16 milligrams of calcium, whereas an orange with the same number of calories packs 3.1 grams of fiber and 60 milligrams of calcium.

Are all wheat breads better for you than white bread? 
Short answer: No
Not all wheat breads are created equal. Wheat breads that contain all parts of the grain kernel,

Including the nutrient-rich germ and fiber-dense bran, must be labeled “whole grain” or “whole wheat.”
Some wheat breads are just white bread with a little bit of caramel coloring to make the bread appear healthier,

According to Reader’s Digest.

Can a hot tub make me sick?
Short answer: Yes
Hot tubs — especially ones in spas, hotels, and gyms — are perfect breeding grounds for germs.
The water is not hot enough to kill bacteria, but is just the right temperature to make microbes grow even faster.

Even though hot tubs are treated with chlorine, the heat causes the disinfectant to break down faster

than it would in regular pools.
The most common hot tub infection is pseudomonas folliculitis, which causes red, itchy bumps.

A more dangerous side-effect of soaking in a dirty Jacuzzi is a form of pneumonia known as Legionnaire’s disease.

This is what reportedly sickened more than 100 people at the Playboy Mansion back in 2011.

Does coffee cause cancer? 
Short answer: No
Coffee got a bad rap in the 1980s when a study linked drinking coffee to pancreatic cancer.

The preliminary report was later debunked.
More recently, health studies have swung in favor of the caffeinated beverage.

Coffee has been linked to a lower risk of type 2 diabetes, Parkinson’s disease, liver cancer, and even suicide.

Do eggs raise cholesterol levels? 
Short answer: No
Although egg yolks are a major source of cholesterol — a waxy substance that resembles fat — researchers have learned that saturated fat has more of an impact on cholesterol in your blood than eating foods that contain     cholesterol.
“Healthy individuals with normal blood cholesterol levels should now feel free to enjoy foods like eggs in their diet every day,” the lead researcher from a 25-year University of Arizona study on cholesterol concluded.

Can you drink too much water?
Short answer: Yes
It is very rare for someone to die from drinking too much water, but it can happen.
Overhydrating is most common among elite athletes. Drinking an excess of water, called water intoxication, dilutes the concentration of sodium in the blood leading to a condition known as hyponatremia.

The symptoms of hyponatremia can range from nausea and confusion to seizures and even death in severe cases.
To avoid this, drink fluids with electrolytes during extreme exercise events.

Can yogurt ease digestive problems?
Short answer: Yes
Our digestive tract is filled with microorganisms — some good and some bad. Yogurt contains beneficial bacteria, generically called probiotics, that helps maintain a healthy balance.

Probiotics can relieve several gastrointestinal problems, including constipation and diarrhea.
Certain brands of yogurts, like Activa by Dannon, are marketed exclusively to treat tummy issues.

 

Do whitening toothpastes whiten teeth more than regular toothpastes?
Short answer: No
Whitening toothpastes usually contain peroxides and other strong abrasives that might make

your teeth appear whiter by removing stains. Unlike at-home whitening strips and gels that contain bleach,

these toothpastes do not actually change the color of your teeth.

Is it safe to microwave food in plastic containers?
Short answer: Yes
But the plastic container should display the words “microwave safe.” This means that the Food and Drug Administration has tested the container to make sure no chemicals used to make the plastic leech into foods during microwaving.

If chemicals do seep out into food, the amounts are tiny and not dangerous to our health.
As a general guideline, plastic grocery bags as well as most plastic tubs that hold margarine, yogurt, cream cheese,

and condiments are not microwave safe.

Can watching TV ruin your eyesight?
Short answer: No
Watching TV will not destroy your rods and cones as the outdated myth suggests. Before the 1950s,

TVs emitted radiation that could increase an individual’s risk of eye problems after excessive TV viewing.

Modern TVs have special shielding that blocks these harmful emissions.

 

Is red wine better for you than white wine?
Short answer: Yes
Red wine contains much more resveratrol than white wine, an antioxidant found in the skin of grapes

that has been shown to fight off diseases associated with aging.

 Is bottled water better for you than tap water? 
Short answer: No
Bottled water is no safer or purer than tap water, although it is substantially more expensive.
A recent study by Glasgow University in the U.K. found that bottled water is actually

more likely to be contaminated than water from your faucet because it is less well-regulated.
Bottled water and tap water typically come from the same sources — natural springs, lakes, and aquifers.

While public water supplies are tested for contaminants every day, makers of bottled water are only required

to test for specific contaminants every week, month, or year.

Dr. Priscilla Diffie-Couch will be a featured guest blogger from time to time on Bob’s Newheart. Watch for her posts and know that if Priscilla says it, you can depend on its accuracy.

 Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

How do You Apologize and Why Should You?

Introduction by Bob Aronson

This blog has addressed many issues over the years, but we’ve never approached the issue of how our behavior when ill sometimes results in hurt feelings, the loss of friends and even the dissolution of marriages because so few of us know how to say, “I’m sorry,” in an effective and meaningful manner.

Anyone who has suffered a serious, life-threatening illness has at one time or another lost their temper, or become overly emotional and said and did things that are out of character.  Unfortunately we rarely know just how deeply our words and actions can hurt others and worse yet, when and if we apologize we do so ineffectively.  “I’m sorry,” are two words that are extremely difficult for most people to say and when we do use them it is often too late and without sincerity.

I’m a member of Alcoholics Anonymous.  It is a twelve step program and two of the steps are devoted to apologizing.  In AA it’s called  “Making Amends” or apologizing to those you have hurt or harmed in some manner.  Specifically step eight admonishes members to “make a list of all persons we had harmed, and became willing to make amends to them all.”  And –Step Nine says, “Make direct amends to such people wherever possible, except when to do so would injure them or others.”

Having been part of that program for 33 years I should have more than a passing acquaintance with apologizing, but I don’t. I’m not very good at it and I don’t like doing it because like most people I don’t like having to admit that I’ve made mistakes….who does?

The bottom line is that making amends or apologizing is good for one’s mental health and I was made aware of that recently by Dr. Priscilla Diffie-Couch a family member with a Doctorate in Communication.  A brilliant woman, Priscilla has for years served as a healthy living advisor to the Diffie family and her advice is always spot on.  Recently I asked her to pen a guest blog for Bob’s Newheart and she responded with this essay on apologizing.  It’s a subject to which I’ve given almost no thought and am grateful that she brought it to our attention.

I’m hoping we can talk Dr. Diffie-Couch into being a more regular contributor to our efforts.   Thanks Priscilla.

 How do You Apologize and Why Should You?

By Dr. Priscilla Diffie-Couch ED.D.

One of the most fundamental communication skills needed to maintain trusting and close relationships is found in the art of apologizing.  The most common mistake we make is to respond to someone who expresses hurt feelings by saying, “Oh, you misunderstood.  I didn’t mean to hurt you.”  That only serves to insult that person’s intelligence. Few people would say, “I meant to hurt your feelings or offend you.”

Effective Apology—Mending Fences by John Kador is an excellent resource for understanding the skills involved in apologies that actually repair hurt feelings.  His five “R’s” explain why an effective apology is far more than simply sincere and why extracted apologies leave us feeling so unsatisfied:

1. RECOGNITION
2. RESPONSIBILITY
3. REMORSE
4. RESTITUTION
5. REPETITION

By RECOGNITION, he means acknowledging that feelings are not debatable or deniable.  You must treat that person’s declaration of being hurt as valid and true.  Denying the truth of your offense will do nothing toward healing.  Of course, confining your attacks to the issues–not the persons who raised them–will greatly reduce your need to make apologies.

By RESPONSIBILITY, he means acknowledging your real role in this hurt.  You must own the words that you said and accept that they caused hurt.  Responsibility means saying, “I’m sorry.  I see how that was offensive to you.”   You must acknowledge your guilt and convey a willingness to do something about it.  Saying “You misunderstood” not only adds insult to injury, it suggests you think the responsibility for fixing the hurt belongs with the person who is offended.

By REMORSE, he means verbally admitting that you made a mistake in the way you conveyed a message and you feel bad about causing the hurt.  Arguing with someone who has expressed that your words were hurtful exposes that you do not feel contrite; your real goal is to prove you were right.  Excuses are equally offensive.  They only widen the wounds.

By RESTITUTION, he means the willingness to invest whatever time is required to ensure that the hurt party sees that you are sincere, feels better and knows that you care.  Saying “That’s just the way I am” is tantamount to saying, “You are the problem, not me.  You are too sensitive when I express my strong opinions.  You are the one who should change, not me.”  You are not alone in having strong opinions.  It’s how and when you choose to express them that most affects your relationship with others.

When deeds and words collide, words seldom win.  Saying, “I love you” is meaningless unless you are willing to take specific actions that truly reflect that love.  Words have the power to inflict wounds that only deeds can heal.  When you hurt others, the act of making a full apology is the deed required. It is critical in repairing a relationship damaged by hurt.  Expressions of love are poor imposters of apologies.

By REPETITION, he means promising to avoid repeating the offense.  Apologies that fall short are seldom seen as “wholehearted.”  Vows to change help insure acceptance of your apology and increase the hurt party’s desire to take on responsibilities and benefits that come with forgiveness.  But that is another story.

Effective apologies restore and improve relationships and pave the pathway to personal growth.  People who have good relationships live longer and healthier lives.

This summary focuses on only part of what Kador deals with regarding effective apologies.  Maybe you have questions.  I did.

QUESTION:  Do all my apologies have to include all five dimensions?  The short answer is no.  Passing events in our lives like bumping into someone or creating a disturbing noise call for little more than “I’m sorry.”  The focus in this book, however, is repairing and improving relationships.  Achieving that goal demands consideration of each dimension in framing your apology.

QUESTION:  Isn’t it true that some people are overly sensitive and require an unusual number of apologies?  True, but you have little to gain by excusing yourself from giving an apology based on what you see as the recipient’s personality shortcomings.  Life demands dealing with all kinds of personalities.  You cannot change others.  You can control only your own behaviors.  People with the greatest number of satisfying relationships are those who recognize the value of understanding and adaptation.

QUESTION:  I am not a great communicator.  Can’t I just send the injured person flowers or some kind of gift?  No gift can convey the five dimensions that characterize a wholehearted apology.  Gifts can easily be seen as taking the easy way out of situations that are full of needs and complexities.

QUESTION:  But isn’t it possible that whatever I did or whatever I said does not warrant an apology?  That is possible. Your first objective with someone who claims to be offended is to be sure that you have a full understanding of the basis for that claim.  Use the words “Help me understand exactly what I said or did….”  When no specific examples or explanations can be provided, then an extracted apology will do nothing to promote trust.  Instead, say something like this: “I value our relationship, but giving you an empty insincere apology for something so vague will not bring us closer.”

QUESTION:  Are there specifics about what I should or should not include in my apology?  Begin with “I.”  Use active voice.  Example:  “I’m sorry I hurt you,” not “I’m sorry you were hurt.”  Do not include “if’s” or “buts.”  Don’t joke.  Don’t assume.  Ask how someone feels.  Use the person’s name.  Don’t ramble.  Don’t argue.  Listen.  Really listen.  Then apologize.

Learn to apologize effectively.  It’ll do your heart good.

 -0-

An award winning high school speech and English teacher, Priscilla Diffie-Couch went on to get her ED.D. from Oklahoma State University, where she taught speech followed by two years with the faculty of communication at the University of Tulsa.  In her consulting business later in Dallas, she designed and conducted seminars in organizational and group communication.

An avid tennis player, she has spent the last twenty years researching and reporting on health for family and friends.  She has two children, four grandchildren and lives with her husband Mickey in The Woodlands, Texas.

 Bob Aronson  has worked as a broadcast journalist, Minnesota Governor’s Communications Director and for 25 years led his own company as an international communication consultant specializing in health care.

In  2007 he had a heart transplant at the Mayo Clinic in Jacksonville, Florida.  He is the Bob of Bob’s Newheart and the author of most of the nearly 250 posts on this site.  He is also the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) support group.

You may comment in the space provided or email your thoughts to him at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Managing Your Health After an Organ Transplant

A note from Bob Aronson

When you become an organ transplant recipient your life changes.  Not only does the quality of life improve but you have a new awareness of the importance of healthy living.  Transplantable organs are in short supply and those of us who are fortunate enough to get one have a special obligation to take care of it.  It is a gift of life that many never receive and your transplant center will make every effort to help you take care of yourself and your new organ.  Follow their advice, eat healthy, live healthy and by all means, exercise as much as possible.

I have researched and written the great majority of blogs that are published on Bob’s Newheart but not this one.  It was researched and published by the American Society of Transplantation (AST).  I only made some minor editing and formatting changes (the complete post can be found here– http://tinyurl.com/pcteky5).   

This entry is longer than most because it offers critical information that you will need.  It is not only comprehensive in scope,  it is easy to understand and the principles are immediately and easily applicable.  Please take the time to read and thoroughly consider every point.  The information contained here can ensure not only a longer life but one of enhanced quality as well.  And…while this post is meant for transplant recipients, the advice contained here will keep you healthy even if you haven’t had and don’t need an organ transplant.

KEEPING A HEALTHY OUTLOOK ON LIFE

After an organ transplant, there is hope for the future. However, there are a number of health concerns that you will face. For example, there is the chance that your new organ will not always function as well as it should. Transplant recipients also have a higher risk of developing certain conditions such as high blood pressure, high blood lipid levels, diabetes, kidney problems, liver problems, and bone disease. Infection and cancer are also conditions you need to keep in mind. Some conditions can affect any transplant recipient and some conditions are specific to the type of organ transplanted.

CARING FOR YOUR NEW ORGAN

Lab Tests for Measuring Organ Function

It is important to keep all of your scheduled checkups and lab appointments for monitoring organ function. Testing allows your transplant team to monitor the status of your transplant, detect rejection early, and start effective therapy right away.Common tests for checking organ function are listed below:

Liver function tests — Blood tests are used to monitor liver function (e.g. albumin); damage to liver cells (e.g., alanine transaminase [ALT], Aspartate transaminase [AST]) and some with conditions linked to the path by which bile is produced by the liver (e.g., gamma-glutamyl transferase and alkaline phosphatase)

·    Pulmonary function tests — Tests like spirometry show how well you lungs are working

·    Bronchoscopy — A test that uses an instrument (bronchoscope) to view the airways and diagnose lung disease

·    Chest x-ray

·    Upper and lower gastrointestinal (GI) endoscopies — These evaluations can detect abnormalities of your esophagus, stomach, and intestine
·    Hemodynamic monitoring — Sonar-type echos may be used to detect high blood pressure in your heart and lungs or a catheter may be placed           in the heart for periods of six to 12 hours

·    Echocardiogram — Sonar-type echos can show abnormalities in the heart and lungs

·    Electrocardiogram (EKG or ECG) — Asseses the electrical activity within your heart

·    Renal function studies — Your doctor may ask you to collect your urine (usually for 24 hours) to evaluate if your kidneys are working                         properly. Blood tests such as serum creatinine are performed to measure kidney function

·    Biopsy — A biopsy may also be taken to determine if a rejection episode has occurred. This is done by collecting a small piece of tissue from the       organ and examining it under a microscope

OTHER HEALTH ISSUES

Anti-rejection medications increase your risk of developing certain conditions such as infection and cancer. Other side effects of some anti-rejection medications include high blood pressure, diabetes, high blood lipids, kidney disease, heart attack, stroke, and bone disease. Knowing the risks and taking steps now to prevent them is a good way to keep you and your new organ healthy.

HIGH BLOOD PRESSURE

High blood pressure (hypertension) is a common complication in patients who receive a transplant. High blood pressure can damage the arteries and the heart, increasing the risk of a stroke, a heart attack, kidney problems, or heart failure.For many patients, the cause of hypertension is not known. However, people with kidney disease, diabetes, or high blood pressure before the transplant are at higher risk of high blood pressure after the transplant. Other factors that contribute to high blood pressure after a transplant include a diet high in salt, clogged arteries, high blood lipid levels, smoking, obesity, and some anti-rejection medications such as cyclosporine, tacrolimus, and steroids (prednisone).

Recommended Blood Pressure Levels

People with a blood pressure of 140/90 mm Hg or higher are considered hypertensive. While most transplant recipients should have a blood pressure of 130/80 mm Hg, the ideal blood pressure can vary from person to person. The American Heart Association (AHA) guidelines for the target blood pressure in the general population can also be used as guidelines for organ transplant recipients. Normal blood pressure values for children are based on age, sex and height and in general are much lower than in adults.

• Normal Systolic (top) 120 Diastolic (bottom) 80
• Prehypertension Systolic 120-139, Diastolic 80-89
• Stage 1 hypertension Systolic 140-159, Diastolic 90-99
• Stage 2 hypertension Systolic 160 or higher, Diastolic 100 or higher

High blood pressure usually does not cause any symptoms so it is important to have your blood pressure checked by your transplant team at regular follow-up exams. Your transplant team may also want you to monitor your blood pressure closely while at home.

Reducing High Blood Pressure

• Making some lifestyle changes can lower your blood pressure and prevent hypertension
• Sometimes hypertension can be controlled with lifestyle changes such as diet and exercise, but most patients also require medication.
• There are a variety of medications for treating and controlling high blood pressure
• The most commonly prescribed medications include ACE inhibitors, ARBs, calcium channel blockers, beta-blockers, and diuretics. Some of these medications may have interactions with certain anti-rejection medications.

HIGH BLOOD LIPIDS

While lipids (cholesterol and related compounds) in your blood are necessary for good health, too high levels of some lipids can increase your risk of cardiovascular disease, a leading cause of death among transplant recipients. Most transplant recipients develop high blood lipids. Kidney, heart, and liver transplant patients usually display similar elevations in total cholesterol (TC) and low-density lipoprotein (LDL) cholesterol (“bad cholesterol”).Eating the wrong foods, lack of exercise, and being overweight can increase your risk of developing high levels of LDL cholesterol (“bad cholesterol”), high levels of triglycerides, and low levels of HDL cholesterol (“good cholesterol”). Transplant recipients who are obese, smoke cigarettes, or have high blood pressure are more likely to have high cholesterol. Steroids and some of the other anti-rejection medications, such as cyclosporine, sirolimus, and tacrolimus, can also cause high blood lipid levels.

Recommended Blood Lipid Levels

Be sure to ask your doctor what your cholesterol levels should be. In some instances, transplant recipients can follow target levels of blood lipids recommended in the National Cholesterol Education Program (NCEP) guidelines.

Lipid
Low
Optimal
High
LDL Cholesterol

100 mg/dL
160-189 mg/dL
HDL Cholesterol
40 mg/dL

60 mg/dL
Total Cholesterol

240 mg/dL
Reducing High Blood Lipid Levels

Making healthy lifestyle changes can lower your chances of developing heart disease. You can help lower your blood lipid levels with a proper diet and regular exercise. A diet low in cholesterol and saturated fats may also help reduce your risk of coronary artery disease. In addition to making healthy changes to your diet, exercising for a minimum of 20 to 30 minutes 3 to 4 times a week can also reduce your lipid levels and lower your risk of heart attack or stroke. If you smoke, it is important that you STOP! If adjustment of your anti-rejection drugs, diet, and exercise are not successful in reducing lipid levels, your doctor may want you to take cholesterol-lowering medications. T

Here are several medications that work to lower blood lipids. The most commonly prescribed medications are called statins, which include atorvastatin (Lipitor®), simvastatin (Zocor®), pravastatin (Pravachol®), fluvastatin (Lescol®), rosuvastatin (Crestor®), and lovastatin (Mevacor®). If your doctor prescribes a statin, you will need to be monitored for side effects because the risk of side effects is greater when taken with anti-rejection medications. You will also need blood tests to monitor liver and muscle function. Other types of medication that your transplant team might prescribe to treat high blood lipids include bile acid sequestrants, nicotinic acid, fibric acids, and cholesterol absorption inhibitors.

DIABETES

High blood glucose can cause many health problems, including diabetes, heart disease, kidney injury, nerve damage, and eye problems.Post-transplant diabetes (PTDM) is more common in transplant recipients who have a family history of diabetes as well as those who are overweight, are taking steroids, or have hepatitis C. Diabetes after a transplant is also more common among African Americans and some other ethnic groups such as Native Americans. Other risk factors for PTDM include older age of the recipient.

Controlling Blood Sugar Levels

Most transplant recipients with diabetes can follow the American Diabetes Association (ADA) guidelines. Patients with PTDM should establish a healthy (weight-reducing, if necessary) diet with a structured exercise program. A healthy diet is needed to prevent diabetes or to help control your glucose if diabetes does occur. For all transplant recipients, it is best to eat a healthy diet and exercise regularly to avoid weight gain and reduce the risk of developing high blood glucose or diabetes. Your transplant coordinator or dietician can help determine your recommended daily calorie intake. Limiting the amount of fats and sugar in your diet can also help to maintain a healthy level of blood glucose.

Treatment Options for Controlling Diabetes

There are several types of medications available for patients with diabetes. Depending on the level of glucose in your blood, treatment with oral hypoglycemic drugs and/or insulin may be indicated. For many transplant recipients, insulin injections or an insulin pump is an option for controlling blood sugar. Or, you may be given an oral medication to control blood glucose levels. Your transplant team will determine which medication is right for you.

KIDNEY DISEASE

Kidney function is often decreased in transplant recipients. This may be caused by a pre-existing condition such as diabetes, high blood pressure, or injury to the kidney before a transplant. Or it may be caused by medications used to prevent rejection after a transplant.The best way to help prevent kidney disease is to keep your blood pressure and blood glucose under control and to maintain a healthy weight. In addition, regular checkups with blood and urine tests will give your doctor important information for detecting early changes in kidney function and allowing appropriate steps to be taken.

BLOOD VESSELS DISEASE

Transplant recipients have a higher risk of developing blood vessel disease. Some anti-rejection medications increase the risk of high lipid levels, which can clog arteries and restrict the flow of blood to the heart and brain. Deposits — called atherosclerotic plaque — can completely or partially block blood vessels resulting in a myocardial infarction (heart attack) or acute coronary syndromes.Likewise, a stroke can occur if an artery that supplies blood to the brain becomes blocked. Partial blockage may temporarily reduce the blood supply to the brain. A complete loss of blood supply to the brain results in a stroke.

BONE DISEASE

Bone disease is a problem for many organ transplant recipients. Organ failure before your transplant may cause bones to become thin and brittle (osteoporosis). Other causes of osteoporosis include use of some anti-rejection drugs (corticosteroids), overactive parathyroid gland, cigarette smoking, and not enough calcium in your diet.

Preventing Bone Disease

There are some basic things you can do to help prevent or treat bone disease.

Exercise regularly, including weight lifting or strength training — be sure to discuss weight limits with your transplant team before beginning an exercise program
Eat foods that are high in calcium, including low-fat yogurt, cheese, and milk
Choose foods and juices with calcium added
Get plenty of dietary protein (unless restricted by your doctor)
Take calcium supplements if directed by your doctor
Take vitamin D only as directed by your doctor
Stop smoking
Your doctor or transplant dietician will tell you if you need to take calcium or vitamin D supplements. Your doctor may also want you to take medications that prevent bone thinning, including bisphosphonates such as alendronate (Fosamax®), etidronate (Didrocal®), and risedronate (Actonel®) or calcitonin.

STAYING FIT

Diet – Things are shaping up

The recommended diet for transplant patients consists of 30% fats, 50% carbohydrates and 20% protein.

Your transplant dietician will give you specific instructions about your recommended daily allowance of specific nutrients. Some tips for following a healthy diet include:

Eat high-fiber foods such as raw fruits and vegetables
Increase your calcium intake by eating low-fat dairy products and green leafy vegetables or by taking calcium supplements (if directed by your doctor)
Eat less salt, processed foods, and snacks
Use herbs and spices to add flavor instead of salt
Drink plenty of water (unless you are told to limit fluids)
Eat as little fat and oil as possible
Eat high-protein foods such as lean meat, chicken (without the skin), fish, eggs, nuts (unsalted), and beans
Select healthier condiments such as mustard, low-fat mayonnaise, and low-fat salad dressing
Instead of frying, try baking, broiling, grilling, boiling, or steaming foods
Instead of using oil to cook, use nonstick, fat-free spray
Exercise

Exercise is a great way to help increase your energy and strength after a transplant. A regular exercise routine will also help you maintain your ideal weight, prevent high blood pressure and high lipid levels, and keep your bones strong. It also helps relieve stress and overcome feelings of depression.Soon after your transplant, you’ll want to start slow with a low-impact activity such as walking. With time, you can increase your workout with more demanding activities such as bicycling, jogging, swimming, or whatever exercise you enjoy. Training with dumbbells, cuff weights, or weights will increase strength and help prevent bone loss, but check with your transplant team first to determine how much weight is safe for you to lift. Stretching exercises are also important for muscle tone and flexibility. Be sure to check with your doctor before beginning or changing your exercise routine.

STOP Smoking

Smoking also contributes to already high risk of cardiovascular, particularly in patients with diabetes and may be detrimental to kidney function. Transplant recipients who smoke should to STOP smoking as soon as possible.

Dental Care

Routine dental care is important both before and following transplantation as oral infections can cause significant medical problems and even death. According to the American Heart Association (AHA), pre-treatment with antibiotics is not needed for routine dental care unless the patient has an underlying heart condition that increases the risk of developing a heart infection. These include patients with heart transplants with graft valvulopathy (or a previous history of endocarditis, prosthetic valves, and certain forms of congenital heart diseases.)Gingival overgrowth (hypertrophy) is a dental issue that can arise in transplant patients especially those using cyclosporine. This occurrence of gingival overgrowth can be reduced by practicing good oral hygiene.

ROUTINE FOLLOW-UP EXAMS

All people should have regular exams to help prevent illness.

As we get older, there are some specific tests that should be done on a regular basis

Self-Monitoring

In addition to the tests that your transplant team will perform at regular follow-up visits, you will need to do some self-testing at home. Here are some things you will need to monitor:

Weight – Weigh yourself at the same time each day, preferably in the morning. If you gain 2 pounds in a day or more than 5 pounds total, call your transplant team.
Temperature – You should take your temperature daily, especially when you feel like you have a fever. Call your transplant team if your temperature is too high.
Blood pressure – Check your blood pressure as often as your transplant team recommends.
Pulse – You should check your pulse daily. A normal heart rate when not exercising should be 60 to 100 beats per minute. (If you have had a heart transplant, your resting heart rate may be as high as 110 to 120 beats per minute.)
Blood sugar – If you have high blood sugar or diabetes, you will need to monitor your blood sugar using a glucometer.
Do not take any pain medication (for example, Tylenol®, Motrin®, or Advil®), cold remedy, antacid, herbal medication, or any over-the-counter medication unless your transplant team tells you to.

PREGNANCY: BENEFITS AND RISKS

For female transplant recipients of child-bearing age, fertility is usually restored immediately after a transplant.

There have been thousands of births among women with transplanted organs.

Although pregnancy is now an expected part of the benefits afforded to women by organ transplantation, there are also a number of considerations. Getting pregnant is generally not recommended within the first year after a transplant because the doses of anti-rejection medications are highest; there is a greater risk of rejection; and many other medications are prescribed that are toxic to the developing fetus. Female transplant recipients of child-bearing age should continue using birth control until the doctor says that it is okay to get pregnant. Male transplant recipients may also be concerned about their ability to have children. Men may have fertility problems related to some transplant medications, but many men have been able to father healthy children after a transplant. If you are interested in, or thinking about, becoming pregnant you must talk to your transplant team first. Pregnancy should be planned when organ function and anti-rejection therapy are stable and there are no signs of rejection, high blood pressure, or infection.

High Risk Pregnancy

According to National Transplantation Pregnancy Registry (NTPR) over 70% of births to female transplant recipients are live births and most have favorable outcomes for child and mother. Although this success is encouraging, these pregnancies are still considered high risk. There are risks of complications during pregnancy for the transplant recipient as well as risk of infection and exposure to anti-rejection drugs for the fetus.For example, there is a greater risk of high blood pressure during pregnancy in the woman who has received a transplant. The risk of infection is higher for all transplant recipients, and urinary tract infections are the most common infections during pregnancy.

Other infections that may cause concern during pregnancy include herpes, hepatitis, toxoplasmosis, and cytomegalovirus. Other risks include preeclampsia and preterm delivery. The fetus is also at risk for infections such as cytomegalovirus and herpes simplex virus related to the suppression of the mother’s immune system by anti-rejection drugs. A common question is whether the baby born to a woman with a transplanted organ will be normal. We know that some babies are born premature to mothers with transplants and that they have low birth weights. It is not known whether there are long-term effects on the baby’s development. You should inform your baby’s pediatrician that your baby was exposed to anti-rejection drugs in the womb.

There is a higher risk of birth defects with some anti-rejection drugs especially mycophenolate mofetil and azathioprine. The levels of anti-rejection drugs in the mother’s blood must be monitored closely. Monitoring of blood levels is particularly important in the third trimester, when fetal metabolism may increase the clearance of anti-rejection drugs from the blood. Ask your transplant team whether or not you should breast-feed. It is not known whether breast-feeding while on certain anti-rejection medications can harm the baby.

A major concern for transplant recipients is whether pregnancy will lead to organ rejection or decreased function of the transplanted organ. In general, pregnancy does not affect organ function or patient survival as long your organ is working very well. But, it is very important to discuss with your transplant team whether or not a pregnancy will be too risky. Because pregnancy is considered high risk for transplant recipients, your transplant team may recommend and work with an obstetrician who specializes in high-risk pregnancies.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org.  And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one persBon to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Sugar Could Be Killing us Physically and Financially

 By Bob Aronson

 In September 2013, a bombshell report from Credit Suisse’s Research Institute brought into sharp focus the staggering health consequences of sugar on the health of Americans. The group revealed that approximately “30%–40% of healthcare expenditures in the USA go to help address issues that are closely tied to the excess consumption of sugar.”  The figures suggest that our national addiction to sugar runs us an incredible $1 trillion in healthcare costs each year. The Credit Suisse report highlighted several health conditions including coronary heart diseases, type II diabetes and metabolic syndrome, which numerous studies have linked to excessive sugar intake.

This blog is not meant to be a condemnation of sugar.  It is a condemnation of our addiction to it.  We all love a sweet taste and frankly, we deserve it from time to time.  Often,there is no better reward, but we have to learn to limit our intake.  Like so many things in life it is the abuse of any substance that can cause us to suffer.  Sugar is particularly tough because it is unavoidable.  It is in almost everything and often is a naturally occurring substance.  We would all be a lot healthier if we would just read food labels and limit our excesses.  Having established this little disclaimer, we can now discuss sugar and its potential and real dangers.

 Women’s Health Magazine says that the typical American now swallows the equivalent of 22 sugar cubes every 24 hours. That means the average woman eats 70 pounds—nearly half her weight—of straight sugar every year. Women’s Health Magazine. http://www.womenshealthmag.com/health/dangers-of-sugar

In a major story on sugar Women’s Health goes on to say: When eaten in such vast quantities, sugar can wreak havoc on the body. Over time, that havoc can lead to diabetes and obesity, and also Alzheimer’s disease and breast, endometrial, and colon cancers. One new study found that normal-weight people who loaded up on sugar doubled their risk of dying from heart disease. Other research pinpoints excess sugar as a major cause of nonalcoholic fatty liver disease, which can lead to liver failure.

The magazine characterized the use of sugar this way, “The instant something sweet touches your tongue, your taste buds direct-message your brain: deee-lish. Your noggin’s reward system ignites, unleashing dopamine. Meanwhile, the sugar you swallowed lands in your stomach, where it’s diluted by digestive juices and shuttled into your small intestine. Enzymes begin breaking down every bit of it into two types of molecules: glucose and fructose. Most added sugar comes from sugar cane or sugar beets and is equal parts glucose and fructose; lab-concocted high-fructose corn syrup, however, often has more processed fructose than glucose. Eaten repeatedly, these molecules can hit your body…hard.

Anne Alexander, editorial director of Prevention and author of The Sugar Smart Diet provided this explanation of what sugars can do to your body.

 Glucose

• It seeps through the walls of your small intestine, triggering your pancreas to secrete insulin, a hormone that grabs glucose from your blood and delivers it to your cells to be used as energy.

• But many sweet treats are loaded with so much glucose that it floods your body, lending you a quick and dirty high. Your brain counters by shooting out serotonin, a sleep-regulating hormone. Cue: sugar crash.
• Insulin also blocks production of leptin, the “hunger hormone” that tells your brain that you’re full. The higher your insulin levels, the hungrier you will feel (even if you’ve just eaten a lot). Now in a simulated starvation mode, your brain directs your body to start storing glucose as belly fat.
• Busy-beaver insulin is also surging in your brain, a phenomenon that could eventually lead to Alzheimer’s disease. Out of whack, your brain produces less dopamine, opening the door for cravings and addiction-like neurochemistry.
• Still munching? Your pancreas has pumped out so much insulin that your cells have become resistant to the stuff; all that glucose is left floating in your bloodstream, causing prediabetes or, eventually, full-force diabetes.

Fructose

• It, too, seeps through your small intestine into the bloodstream, which delivers fructose straight to your liver.
• ​Your liver works to metabolize fructose—i.e., turn it into something your body can use. But the organ is easily overwhelmed, especially if you have a raging sweet tooth. Over time, excess fructose can prompt globules of fat to grow throughout the liver, a process called lipogenesis, the precursor to nonalcoholic fatty liver disease.
• ​Too much fructose also lowers HDL, or “good” cholesterol, and spurs the production of triglycerides, a type of fat that can migrate from the liver to the arteries, raising your risk for heart attack or stroke.
• ​Your liver sends an S.O.S. for extra insulin (yep, the multi-tasker also aids liver function). Overwhelmed, your pancreas is now in overdrive, which can result in total-body inflammation that, in turn, puts you at even higher risk for obesity and diabetes

Robert Lustig, an endocrinologist from California gained national attention after a lecture he gave titled “Sugar: The Bitter Truth” went viral in 2009.  www.youtube.com/watch?v=dBnniua6-oM

Lustig’s research looked at the connection between sugar consumption and the poor health of Americans came to a conclusion that startled many.  The Doctor has published twelve articles in peer-reviewed journals identifying sugar as a major factor in the epidemic of degenerative disease that now afflicts our country.  Lustig’s data clearly show that excessive sugar consumption is a key player in the development of some cancers along with obesity, type II diabetes, hypertension, and heart disease. As a result he has concluded that 75% of all diseases in America are brought on by our lifestyle and are entirely preventable.

While most in the medical profession seem to accept Lustig’s assessment of sugar at least one MD David Katz the director of the Yale Prevention Center, disagrees.  http://www.huffingtonpost.com/david-katz-md/sugar-health-evil-toxic_b_850032.html  Katz says, among other things, “So those most motivated to get the sugar they need wind up getting the most sugar. They, in turn, benefit from this by having more of the needed food energy — and thus are more likely to survive. In particular, they are more likely to survive into adulthood, and to procreate. And thus they become our ancestors, who pass traits along to us.”

Lest you think I am making a mountain of a molehill allow some of the body of evidence that sugar can cause health problems.   The claims about the ill health effects of sugar are not just those leveled by Dr. Lustig, they are backed by a solid body of research.  Here are just a few of the research headlines.

• Consumption of Sugar-Sweetened Drinks Linked to Heart Disease
• How Fructose Causes Obesity and Diabetes
• Fructose intake connected with an increased risk of cardiovascular illness and diabetes in teenagers
• Fructose consumption increases the risk of heart disease.
• The Negative Impact of Sugary Drinks on Children.
• Sugar and High Blood Pressure
• Sugar Consumption Associated with Fatty Liver Disease and Diabetes
• The Adverse Impact of Dietary Sugars on Cardiovascular Health
• Rats Fed High Fructose Corn Syrup Exhibit Impaired Brain Function
• High Fructose Corn Syrup Intake Linked with Mineral Imbalance and Osteoporosis.
• Diet of Sugar and Fructose Impairs Brain Function

 To be healthy and avoid sugar or at least limit your intake you simply must read labels.  Unfortunately those who seek to force sugar into our systems have found many ways of complying with the law and telling us there’s sugar in their food but they do it in a manner that sounds less menacing.  

SWEET SYNONYMS
Watch for these sneaky ingredients when reading food labels. Some sound scientific, some almost healthy—but in the end, they all mean “sugar.”

Agave Nectar
Barbados Sugar
Barley Malt Syrup
Beet Sugar
Blackstrap Molasses
Cane Crystals
Cane Juice Crystals
Castor Sugar
Corn Sweetener
Corn Syrup
Corn Syrup Solids
Crystalline Fructose
Date Sugar
Demerara Sugar
Dextrose
Evaporated Cane Juice
Florida Crystals
Fructose
Fruit Juice
Fruit Juice Concentrate
Galactose
Glucose
Glucose Solids
Golden Sugar
Golden Syrup
Granulated Sugar
Grape Juice Concentrate
Grape Sugar
High-Fructose Corn Syrup
Honey
Icing Sugar
Invert Sugar
Lactose
Malt Syrup
Maltodextrin
Maltose
Mannitol
Maple Syrup
Molasses
Muscovado Syrup
Organic Raw Sugar
Powdered Sugar
Raw Sugar
Refiners’ Syrup
Rice Syrup
Sorbitol
Sorghum Syrup
Sucrose
Table Sugar
Treacle
Turbinado Sugar
Yellow Sugar

PICK YOUR POISON
Ultimately, added sugar is added sugar—it all affects you roughly the same way, regardless of where it comes from. Below you will find a short list of the most active and dangerous evil doers. .

High-Fructose Corn Syrup (HFCS)

Derived from corn starch, syrupy HFCS might be the scariest sweet. Much of it contains mercury, a by-product of chemical processing. But another danger is its high artificial fructose content, not to mention that it can be 75 times sweeter than white sugar. (Listen up, agave eaters: The processed nectar can be up to 85 percent fructose and possibly more damaging to your liver than HFCS!)

Honey (http://tinyurl.com/ogge3r6

Often touted as far healthier than refined sugar, these do contain fewer chemicals and a better glucose-fructose balance (plus a few helpful antioxidants). However, says Anne Alexander, author of The Sugar Smartdiet even if the unique flavors of maple syrup and raw honey may lead people to use less, these sweeteners can still spike the body.

Natural Sugar

Sweet news! Unless it’s all you eat, it’s hard to go overboard on truly natural sugars that come directly from fruits and some veggies. Here’s the trick: You have to actually eat the produce. Fruit juices, even those without added sweeteners, will still sugar-bomb your bloodstream. The key is in the fiber, which slows sugar’s absorption in your body, preventing an insulin spike. Any fruit is fair game. “Ones with the most natural sugar have the most fiber,” says Robert Lustig, M.D.

So what’s the bottom line?  Should we avoid sugar completely?  Is that even possible?  Are sugar substitutes a healthy alternative?

First, you probably cannot avoid sugar completely and still eat because it appears naturally in so much of our daily diet.  Additionally, sugar is added to almost every product on the supermarket shelves so the best you can do is severely limit the amount you consume.  Here’s what the Mayo Clinic says. http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/in-depth/added-sugar/art-20045328

How to reduce added sugar in your diet

To reduce the added sugar in your diet, try these tips:

• Drink water or other calorie-free drinks instead of sugary, nondiet sodas or sports drinks. That goes for blended coffee drinks, too.
• When you drink fruit juice, make sure it’s 100 percent fruit juice — not juice drinks that have added sugar. Better yet, eat the fruit rather than juice.
• Choose breakfast cereals carefully. Although healthy breakfast cereals can contain added sugar to make them more appealing to children, plan to skip the non-nutritious, sugary and frosted cereals.
• Opt for reduced-sugar varieties of syrups, jams, jellies and preserves. Use other condiments sparingly. Salad dressings and ketchup have added sugar.
• Choose fresh fruit for dessert instead of cakes, cookies, pies, ice cream and other sweets.
• Buy canned fruit packed in water or juice, not syrup.
• Snack on vegetables, fruits, low-fat cheese, whole-grain crackers and low-fat, low-calorie yogurt instead of candy, pastries and cookies.

The final analysis

By limiting the amount of added sugar in your diet, you can cut calories without compromising on nutrition. In fact, cutting back on foods with added sugar and solid fats may make it easier to get the nutrients you need without exceeding your calorie goal.

Mayo concludes it’s summary on sugary by saying, “Take this easy first step: Next time you’re tempted to reach for a soda or other sugary drink, grab a glass of ice-cold water instead.”

Artificial sweeteners

“So if I am supposed to avoid sugar, but I like sweets what are my alternatives?”  Well, there’s a lot of controversy surrounding this topic so we’ll turn to Web MD for an answer. http://www.webmd.com/food-recipes/features/best-sugar-substitutes

Thanks to the newest sugar substitutes, it’s becoming easier (and healthier) to bake your cake and eat it too!

There are so many alternative sweeteners available now that they seem to be elbowing sugar right off the supermarket shelf. But what’s so wrong with sugar? At just 15 calories per teaspoon, “nothing–in moderation,” says Lona Sandon, R.D., an assistant professor of clinical nutrition at the University of Texas Southwestern Medical Center in Dallas. “The naturally occurring sugar in an apple is fine, but if we can reduce some of the added sugar in our diet, we can remove some of the empty calories.” Less than 25 percent of your daily calories should come from the added sugar in foods like cookies, cereal, and ketchup, she says. To satisfy your sweet tooth–especially if you’re counting calories, limiting carbs, or dealing with diabetes–try these options:

SWEETLEAF AND TRUVIA

What they are: These sugar alternatives are the latest made from stevia, an herb found in Central and South America that is up to 40 times sweeter than sugar but has zero calories and won’t cause a jump in your blood sugar. Stevia was slow to catch on because of its bitter, licorice-like aftertaste, but makers of Truvia and SweetLeaf have solved this problem by using the sweetest parts of the plant in their products.

Where to find them: In grocery stores and natural-food stores throughout the country and online at sweetleaf.com and truvia.com.

 How to use them: Both work well in coffee and tea or sprinkled over fruit, cereal, or yogurt. You can’t substitute stevia-based products for sugar in baked goods, though, because these products are sweeter than sugar and don’t offer the same color and texture. Makers of SweetLeaf promise to come out with a baking formulation soon.

Health Rx: “Truvia’s one of the most promising alternatives out there,” says nutritionist Jonny Bowden, Ph.D., author of The Healthiest Meals on Earth . “Right now, it looks safe. It tastes just like sugar and has almost no glycemic index, which means it won’t spike your blood sugar.”

WHEY LOW

What it is: Three naturally occurring sugars–fructose, the sugar in fruit; sucrose, or table sugar; and lactose, the sugar in milk–are blended to create this sweetener. While individually the sugars are fully caloric, when blended in Whey Low they interact in such a way that they aren’t completely absorbed into the body. As a result, at four calories per teaspoon, Whey Low has one quarter of the calories and less than one third of the glycemic index of sugar, so you’re less likely to crash after consuming it. It’s available in varieties similar to granular sugar, brown sugar, maple sugar, and confectioners’ sugar.

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

 

Vitamin Supplements — May Not Be Necessary and They Could Harm You

By Bob Aronson

The National Institutes of Health (NIH) says Americans have been taking multivitamin/mineral (MVM) supplements since the early 1940s, when the first such products became available. MVMs are still popular dietary supplements and, according to estimates, more than one-third of all Americans take them. MVMs account for almost one-fifth of all purchases of dietary supplements.

“You have to get your vitamins.”  I’ve heard that phrase since I was a child, but why?  What are Vitamins and are vitamin pills or supplements the same as the vitamins found naturally in what we eat and in sunshine?  Vitamins are not all the same.  There can be a huge difference between those that are naturally contained in our food and the sometimes “smelly” things that come in a bottle from your Pharmacy.

Over the past several years there have been a number of news reports about vitamins. Some experts support their use, some say the supplements are worthless and others say they can actually cause harm.  What’s true?  All of the above!  We’ll try to shed some light on the subject so let’s start with their importance to our health.

Vitamin deficiencies lead to a wide range of problems spanning from anorexia to obesity, organ malfunction, confusion, depression and fatigue.  We need vitamins.  The question that must be answered is; how do you know which ones?  We’ll provide an answer.

Tough question when you consider the fact that the NIH says, “No standard or regulatory definition is available for an MVM supplement—such as what nutrients it must contain and at what levels. Therefore, the term can refer to products of widely varied compositions and characteristics. These products go by various names, including multis, multiples, and MVMs. Manufacturers determine the types and levels of vitamins, minerals, and other ingredients in their MVMs. As a result, many types of MVMs are available in the marketplace.”

It is entirely possible that there are no standards because the vitamin industry is huge and can afford heavy lobbying to ensure that they remain free of government regulation.  The NIH says that sales of all dietary supplements in the United States totaled an estimated $30.0 billion in 2011. This amount included $12.4 billion for all vitamin- and mineral-containing supplements, of which $5.2 billion was for MVMs.  If the government set standards, every single manufacturer would have to reformulate their products to meet them.  Doing so would be costly so there is no wonder that the industry would rather not rock their very profitable boat.

Whether your vitamins are hurting you is another story. What people are not aware of is that all vitamins are not created equal, and most are actually synthetic and the synthetic vitamins are rarely like the real thing.

The type of vitamins that benefit us most is murky but there are some.  However, a healthy diet should provide most of the nutrients our bodies need.  Sometimes, though, supplements can help. The problem is, which ones?  How do you know what to buy?

For the most part, medical science has made it clear that most vitamin supplements are either useless or cause harm and we’ll elaborate on those claims shortly.  First, though, you ought to know what’s good for you and what seems to work for some conditions.

This article in Smithsonian.com lists five supplements that can be helpful. http://www.smithsonianmag.com/science-nature/five-vitamins-and-supplements-are-actually-worth-taking-180949735/#VsZOfYrBAkvtVYvY.99

Of all the “classic” vitamins—the vital organic compounds discovered between 1913 and 1941 and termed vitamin A, B, C, etc.—vitamin D is by far the most beneficial to take in supplement form. Researchers found that adults who took vitamin D supplements daily lived longer than those who didn’t.

Other research has found that in kids, taking vitamin D supplements can reduce the chance of catching the flu, and that in older adults, it can improve bone health and reduce the incidence of fractures.

Probiotics

A mounting pile of research is showing how crucial the trillions of bacterial cells that live inside us are in regulating our health, and how harmful it can be to suddenly wipe them out with an antibiotic. Thus, it shouldn’t come as a huge surprise that if you do go through a course of antibiotics, taking a probiotic (either a supplement or a food naturally rich in bacteria, such as yogurt) to replace the bacteria colonies in your gut is a good idea.

In 2012, a meta-analysis of 82 randomized controlled trials found that use of probiotics significantly reduced the incidence of diarrhea after a course of antibiotics.

All the same, probiotics aren’t a digestive cure-all: they haven’t been found to be effective in treating irritable bowel syndrome, among other chronic ailments. Like most other supplements that are actually effective, they’re useful in very specific circumstances, but it’s not necessary to continually take them on a daily basis.

Zinc

Vitamin C might not do anything to prevent or treat the common cold, but the other widely-used cold supplement, zinc, is actually worth taking. A mineral that’s involved in many different aspects of your cellular metabolism, zinc appears to interfere with the replication of rhinoviruses, the microbes that cause the common cold.

This has been borne out in a number of studies

Niacin

Also known as vitamin B3, niacin is talked up as a cure for all sorts of conditions (including high cholesterol, Alzheimer’s, diabetes and headaches) but in most of these cases, a prescription-strength dose of niacin has been needed to show a clear result.

At over-the-counter strength, niacin supplements have only been proven to be effective in helping one group of people: those who have heart disease. A 2010 review found that taking the supplement daily reduced the chance of a stroke or heart attack in people with heart disease, thereby reducing their overall risk of death due to a cardiac

​Garlic

Garlic, of course, is a pungent herb. It also turns out to be an effective treatment for high blood pressure when taken as a concentrated supplement.

A 2008 meta-analysis of 11 randomized controlled trials (in which similar groups of participants were given either a garlic supplement or placebo, and the results were compared) found that, on the whole, taking garlic daily reduced blood pressure, with the most significant results coming in adults who had high blood pressure at the start of the trials.

On the other hand, there have also been claims that garlic supplements can prevent cancer, but the evidence is mixed.

Vitamin Supplements are unnecessary and may cause harm.

In December of last year, the Annals of Internal Medicine reported that, “Not only are the pills mostly unnecessary, but they could actually do harm those taking them. We believe that the case is closed—supplementing the diet of well-nourished adults with (most) mineral or vitamin supplements has no clear benefit and might even be harmful.  These vitamins should not be used for chronic disease prevention. Enough is enough.”  http://www.cbsnews.com/news/multivitamin-researchers-say-case-is-closed-supplements-dont-boost-health/

Based on three studies examining multivitamins’ links to cancer prevention, heart health, and cognitive function, the research is a blow to the multi-billion dollar industry that produces them and to the millions of Americans who religiously shell out their dollars for false hope.

The doubts about vitamin supplements are not new.  In his 2013 book Do You Believe in Magic, Dr. Paul Offit pointed to a handful of major studies over the past five years that showed vitamins have made people less healthy. “In 2008, a review of all existing studies involving more than 230,000 people who did or did not receive supplemental antioxidants found that vitamins increased the risk of cancer and heart disease.”

Last year, researchers published new findings from the Women’s Health Initiative, a long-term study of more than 160,000 midlife women. The data showed that multivitamin-takers are no healthier than those who don’t pop the pills, at least when it comes to the big diseases—cancer, heart disease, stroke. “Even women with poor diets weren’t helped by taking a multivitamin,” says study author Marian Neuhouser, PhD, in the cancer prevention program at the Fred Hutchinson Cancer Research Center, in Seattle.

That said, there is one group that probably ought to keep taking a multi-vitamin: women of reproductive age. The supplement is insurance in case of pregnancy. A woman who gets adequate amounts of the B vitamin folate is much less likely to have a baby with a birth defect affecting the spinal cord.

The problem is that many vitamin and mineral supplements are manufactured synthetically. Some estimates place the amount at 90 percent and higher and while they are made to mimic natural vitamins they are not the same. Natural vitamins come directly from plants and animals, they are not produced in a lab and — most synthetic vitamins lack co-factors associated with naturally-occurring vitamins because they have been “isolated.”

Isolated vitamins can’t always be used by the body, and are either stored or excreted. Most synthetic vitamins don’t have the necessary trace minerals either and must use the body’s own mineral reserves which can then cause mineral deficiencies.

Most synthetic supplements contain chemicals that do not occur in nature. The history of the human race is such that our bodies have grown accustomed to consuming the food we grow and gather naturally, from the earth, not food that is synthesized in a lab.

Web MD offers this assessment.

What Vitamin and Mineral Supplements Can and Can’t Do

http://www.webmd.com/vitamins-and-supplements/nutrition-vitamins-11/help-vitamin-supplement 

 By Kathleen M. Zelman, MPH, RD, LD

Reviewed By Elizabeth Ward, MS, RD

Experts say there is definitely a place for vitamin or mineral supplements in our diets, but their primary function is to fill in small nutrient gaps.  They are “supplements” intended to add to your diet, not take the place of real food or a healthy meal plan.

 WebMD takes a closer look at what vitamin and mineral supplements can and cannot do for your health.

Food First, Then Supplements

Vitamins and other dietary supplements are not intended to be a food substitute. They cannot replace all of the nutrients and benefits of whole foods. 

 “They can plug nutrition gaps in your diet, but it is short-sighted to think your vitamin or mineral is the ticket to good health — the big power is on the plate, not in a pill,” explains Roberta Anding, MS, RD, a spokesperson for the American Dietetic Association and director of sports nutrition at Texas Children’s Hospital in Houston. 

 It is always better to get your nutrients from food, agrees registered dietitian Karen Ansel.  “Food contains thousands of phytochemicals, fiber, and more that work together to promote good health that cannot be duplicated with a pill or a cocktail of supplements.”

 What Can Vitamin and Mineral Supplements Do for Your Health?

 When the food on the plate falls short and doesn’t include essential nutrients like calcium, potassium, vitamin D, and vitamin B12, some of the nutrients many Americans don’t get enough of, a supplement can help take up the nutritional slack. Vitamin and mineral supplements can help prevent deficiencies that can contribute to chronic conditions.

 Numerous studies have shown the health benefits and effectiveness of supplementing missing nutrients in the diet.  A National Institutes of Health (NIH) study found increased bone density and reduced fractures in postmenopausal women who took calcium and vitamin D.

  Beyond filling in gaps, other studies have demonstrated that supplemental vitamins and minerals can be advantageous. However, the exact benefits are still unclear as researchers continue to unravel the potential health benefits of vitamins and supplements. 

 Web MD offers these tips to guide your vitamin and mineral selection:

• Think nutritious food first, and then supplement the gaps.  Start by filling your grocery cart with a variety of nourishing, nutrient-rich foods.  Use the federal government’s My Plate nutrition guide to help make sure your meals and snacks include all the parts of a healthy meal.
•  Take stock of your diet habits. Evaluate what is missing in your diet. Are there entire food groups you avoid? Is iceberg lettuce the only vegetable you eat? If so, learn about the key nutrients in the missing food groups, and choose a supplement to help meet those needs. As an example, it makes sense for anyone who does not or is not able to get the recommended three servings of dairy every day to take a calcium and vitamin D supplement for these shortfall nutrients.
• When in doubt, a daily multivitamin is a safer bet than a cocktail of individual supplements that can exceed the safe upper limits of the recommended intake for any nutrient.  Choose a multivitamin that provides 100% or less of the Daily Value (DV) as a backup to plug the small nutrient holes in your diet.
•  Are you a fast food junkie?  If your diet pretty much consists of sweetened and other low-nutrient drinks, fries, and burgers, then supplements are not the answer.  A healthy diet makeover is in order. Consult a registered dietitian.
•  Respect the limits. Supplements can fill in where your diet leaves off, but they can also build up and potentially cause toxicities if you take more than 100% of the DV.
•  Most adults and children don’t get enough calcium, vitamin D, or potassium according to the 2010 Dietary Guidelines.  Potassium-rich foods, including fruits, vegetables, dairy, and meat are the best ways to fill in potassium gaps. Choose an individual or a multivitamin supplement that contains these calcium and vitamin D as a safeguard.
•  The best way to judge any supplement or medication is by reviewing clinical trials. There aren’t a lot of them done on vitamins, but those that have been conducted are quite revealing.  The NIH concluded that most supplements not only don’t work as intended, they actually make things worse. They examined the efficacy of 13 vitamins and 15 essential minerals as reported in long-term, randomized clinical trials and there were some positive results like:
• A combination of calcium and vitamin D was shown to increase bone mineral density and reduce fracture risk in postmenopausal women.
• There was some evidence that selenium reduces risk of certain cancers.
• Vitamin E maydecrease cardiovascular deaths in women and prostate cancer deaths in male smokers.
• Vitamin D showed some cardiovascular benefit.

Those few positives are overwhelmed by the negative findings.

• Trials of niacin (B3), folate, riboflavin (B2), and vitamins B6 and B12 showed no positive effect on chronic disease occurrence in the general population
• There was no evidence to recommend beta-carotene and some evidence that it may cause harm in smokers.
• High-dose vitamin E supplementation increased the risk of death from all causes.

So what’s the bottom line?  Our research indicates that most medical authorities pretty much dismiss the usefulness of most vitamin supplements. Most revealing, though, and also dangerous is the fact that there are no standards for vitamin supplements.  The companies that make them can each have their own formulations and there is no approval process so the consumer may be at great risk.  Buyer beware.  Don’t believe the advertising.  If you are determined to take these supplements, though, google them and look for clinical trials.  If there are none, don’t buy.  If there are, read them carefully.  For the most part the best advice is, save your money because most of us don’t have a clue as to what we are buying.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant
Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Chiropractic Manipulation — What is it and Does It Work?

By Bob Aronson

When I was growing up in Chisholm, Minnesota my dad swore that a chiropractor did more for his aching back than anyone else.  Dad was a meat cutter (he despised the term “Butcher” because he butchered nothing) and carried quarters of beef from the truck into his supermarket meat cooler.  Those things are heavy, bulky and very hard to handle and as a result he suffered back problems all his life.  Sometimes he could barely get out of bed he hurt so badly.  When that happened he would call Dr. Cole who, like all doctors then, made house calls.

My mom had an old fashioned, very heavy, super sturdy all wood ironing board set up in the living room and that’s what Doc Cole would use as a treatment bed.  Dad would lie face down on that old ironing board and Doc Cole would begin doing whatever manipulation Chiropractors do.  I don’t remember a time when it didn’t work.  Dad always felt better and was back at work the next day, but the pain always returned.  That’s the sum total of my experience with Chiropractors.  I have never been to see one or been in the care of a Chiropractor nor do I know anyone who has.

Here is the definition of the treatment as provided by the American Chiropractic Association (ACA).   Chiropractic is a health care profession that focuses on disorders of the musculoskeletal system and the nervous system, and the effects of these disorders on general health.  Chiropractic care is used most often to treat neuromusculoskeletal complaints, including but not limited to back pain, neck pain, pain in the joints of the arms or legs, and headaches.

Doctors of Chiropractic – often referred to as chiropractors or chiropractic physicians – practice a drug-free, hands-on approach to health care that includes patient examination, diagnosis and treatment. Chiropractors have broad diagnostic skills and are also trained to recommend therapeutic and rehabilitative exercises, as well as to provide nutritional, dietary and lifestyle counseling (there is much more to the definition. You can read it here http://www.acatoday.org/level2_css.cfm?T1ID=13&T2ID=61

There is no shortage of definitions of the practice so “Cherry Picking” a few can be misleading but from what I can find, traditional medical science is becoming more accepting of the practice in recent years, but still seems to stop short of an endorsement.  Here is the definition of Chiropractic according to Medicine Net dot com. http://www.medterms.com/script/main/art.asp?articlekey=2706

Chiropractic: A system of diagnosis and treatment based on the concept that the nervous system coordinates all of the body’s functions, and that disease results from a lack of normal nerve function. Chiropractic employs manipulation and adjustment of body structures, such as the spinal column, so that pressure on nerves coming from the spinal cord due to displacement (subluxation) of a vertebral body may be relieved. Practitioners believe that misalignment and nerve pressure can cause problems not only in the local area, but also at some distance from it. Chiropractic treatment appears to be effective for muscle spasms of the back and neck, tension headaches, and some sorts of leg pain. It may or may not be useful for other ailments.

Not all chiropractors are alike in their practice. The International Chiropractors Association believes that patients should be treated by spinal manipulation alone while the American Chiropractors Association advocate a multidisciplinary approach that combines spinal adjustment with other modalities such as physical therapy, psychological counseling, and dietary measures. For some years the American Medical Association (AMA) opposed chiropractic because of what it termed a “rigid adherence to an irrational, unscientific approach to disease.” However, Congress amended the Medicare Act in 1972 to include benefits for chiropractic services and in 1978 the AMA modified its position on chiropractic.

So, now that we have defined terms the question is, “When should I choose a chiropractor to treat a condition, and which conditions can they successfully treat?”  The answer to that question depends entirely on who you talk to.  Even Chiropractors differ with one another on exactly what conditions they can and can’t treat.

Preston H. Long is a licensed Arizona Chiropractor who practiced for almost 30 years.  Be warned, his assessment of the Chiropractic profession is quite negative.

Long has testified at about 200 trials, performed more than 10,000 chiropractic case evaluations, and served as a consultant to several law enforcement agencies. He is also an associate professor at Bryan University, where he teaches in the master’s program in applied health informatics.  What follows is just a half dozen bullet points from a blog he wrote titled, “20 Things Most Chiropractors Won’t Tell You.”(I Bob Aronson selected only the first six points and edited them for brevity) you can read the entire unedited version here http://edzardernst.com/2013/10/twenty-things-most-chiropractors-wont-tell-you/

Have you ever consulted a chiropractor? Are you thinking about seeing one? Do you care whether your tax and health-care dollars are spent on worthless treatment? If your answer to any of these questions is yes, there are certain things you should know.

 1. Chiropractic theory and practice are not based on the body of knowledge related to health, disease, and health care that has been widely accepted by the scientific community.

Most chiropractors believe that spinal problems, which they call “subluxations,” cause ill health and that fixing them by “adjusting” the spine will promote and restore health. The extent of this belief varies from chiropractor to chiropractor. Some believe that subluxations are the primary cause of ill health; others consider them an underlying cause. Only a small percentage (including me) reject these notions and align their beliefs and practices with those of the science-based medical community. The ramifications and consequences of subluxation theory will be discussed in detail throughout this book.

 2. Many chiropractors promise too much.

The most common forms of treatment administered by chiropractors are spinal manipulation and passive physiotherapy measures such as heat, ultrasound, massage, and electrical muscle stimulation. These modalities can be useful in managing certain problems of muscles and bones, but they have little, if any, use against the vast majority of diseases. But chiropractors who believe that “subluxations” cause ill health claim that spinal adjustments promote general health and enable patients to recover from a wide range of diseases. Some have a hand out that improperly relates “subluxations” to a wide range of ailments that spinal adjustments supposedly can help. Some charts of this type have listed more than 100 diseases and conditions, including allergies, appendicitis, anemia, crossed eyes, deafness, gallbladder problems, hernias, and pneumonia.

3. Our education is vastly inferior to that of medical doctors.

I rarely encountered sick patients in my school clinic. Most of my “patients” were friends, students, and an occasional person who presented to the student clinic for inexpensive chiropractic care. Most had nothing really wrong with them. In order to graduate, chiropractic college students are required to treat a minimum number of people. To reach their number, some resort to paying people (including prostitutes) to visit them at the college’s clinic.

4. Our legitimate scope is actually very narrow.

Appropriate chiropractic treatment is relevant only to a narrow range of ailments, nearly all related to musculoskeletal problems. But some chiropractors assert that they can influence the course of nearly everything. Some even offer adjustments to farm animals and family pets.

 5. Very little of what chiropractors do has been studied.

Although chiropractic has been around since 1895,  little of what we do meets the scientific standard through solid research. Chiropractic apologists try to sound scientific to counter their detractors, but very little research actually supports what chiropractors do.

6. Unless your diagnosis is obvious, it’s best to get diagnosed elsewhere.

During my work as an independent examiner, I have encountered many patients whose chiropractor missed readily apparent diagnoses and rendered inappropriate treatment for long periods of time. Chiropractors lack the depth of training available to medical doctors. For that reason, except for minor injuries, it is usually better to seek medical diagnosis first.

Obviously the previous report is pretty damning but the author’s views are not universally shared.  The problem with finding positive reports about the Chiropractic profession is that there are very few traditional double blind placebo studies.  Double blind studies are the “Gold Standard” in medicine.  Most of the supporting evidence for Chiropractic medicine is of the testimonial variety otherwise known as “Anecdotal” evidence. Often you will see ads that suggest 9 out of 10 who tried something got relief and while that sounds good, it is anecdotal, not double blind and that’s why Chiropractors are suspect in the eyes of the medical profession, even though Medical Doctors will on occasion for specific ailments send their patients to Chiropractors.

Here’s an evaluation of the top ten Chiropractic studies of 2013…it is not positive because, the author says, the studies were not really studies. http://www.sciencebasedmedicine.org/top-10-chiropractic-studies-of-2013/

The Medical Profession Does Recognize that Chiropractic Manipulation Can Help.

So, what about the good side of the profession? Where’s the evidence that Chiropractic manipulation of the spine actually has lasting benefits?

I searched for a long time and the best non anecdotal defense I could find for the Chiropractic profession was in Web MD. You can read all of it here, but note that the endorsement is strictly for back pain. http://www.webmd.com/pain-management/guide/chiropractic-pain-relief

Among people seeking back pain relief alternatives, most choose chiropractic treatment. About 22 million Americans visit chiropractors annually. Of these, 7.7 million, or 35%, are seeking relief from back pain from various causes, including accidents, sports injuries, and muscle strains. Other complaints include pain in the neck, arms, and legs, and headaches.

Learn The Truth About Back Pain Causes and Treatments

What Is Chiropractic?                                       ,

Chiropractors use hands-on spinal manipulation and other alternative treatments, the theory being that proper alignment of the body’s musculoskeletal structure, particularly the spine, will enable the body to heal itself without surgery or medication. Manipulation is used to restore mobility to joints restricted by tissue injury caused by a traumatic event, such as falling, or repetitive stress, such as sitting without proper back support.

Chiropractic is primarily used as a pain relief alternative for muscles, joints, bones, and connective tissue, such as cartilage, ligaments, and tendons. It is sometimes used in conjunction with conventional medical treatment.

The initials “DC” identify a chiropractor, whose education typically includes an undergraduate degree plus four years of chiropractic college.

What Does Chiropractic for Back Pain Involve?

A chiropractor first takes a medical history, performs a physical examination, and may use lab tests or diagnostic imaging to determine if treatment is appropriate for your back pain.

The treatment plan may involve one or more manual adjustments in which the doctor manipulates the joints, using a controlled, sudden force to improve range and quality of motion. Many chiropractors also incorporate nutritional counseling and exercise/rehabilitation into the treatment plan. The goals of chiropractic care include the restoration of function and prevention of injury in addition to back pain relief.

What Are the Benefits and Risks of Chiropractic Care?

Spinal manipulation and chiropractic care is generally considered a safe, effective treatment for acute low back pain, the type of sudden injury that results from moving furniture or getting tackled. Acute back pain, which is more common than chronic pain, lasts no more than six weeks and typically gets better on its own.

Research has also shown chiropractic to be helpful in treating neck pain and headaches. In addition, osteoarthritis and fibromyalgia may respond to the moderate pressure used both by chiropractors and practitioners of deep tissue massage.

Studies have not confirmed the effectiveness of prolotherapy or sclerotherapy for pain relief, used by some chiropractors, osteopaths, and medical doctors, to treat chronic back pain, the type of pain that may come on suddenly or gradually and lasts more than three months. The therapy involves injections such as sugar water or anesthetic in hopes of strengthening the ligaments in the back.

People who have osteoporosis, spinal cord compression, or inflammatory arthritis, or who take blood-thinning medications should not undergo spinal manipulation. In addition, patients with a history of cancer should first obtain clearance from their medical doctor before undergoing spinal manipulation.

All treatment is based on an accurate diagnosis of your back pain. The chiropractor should be well informed regarding your medical history, including ongoing medical conditions, current medications, traumatic/surgical history, and lifestyle factors. Although rare, there have been cases in which treatment worsened a herniated or slipped disc, or neck manipulation resulted in stroke or spinal cord injury. To be safe, always inform your primary health care provider whenever you use chiropractic or other pain relief alternatives.

On my OTI Facebook group I asked for individual experiences with chiropractors and got very few, most were positive but general in nature offering few details.

Other Non-Traditional Remedies

There are other non-traditional remedies for back pain that we have not mentioned here.  Below you will find several that were listed in “About dot com. “ For the full list of 15 options click on this link. http://altmedicine.about.com/od/chronicpain/a/back_pain.htm

 Acupuncture

A 2008 study published in Spine found “strong evidence that acupuncture can be a useful supplement to other forms of conventional therapy” for low back pain. After analyzing 23 clinical trials with a total of 6,359 patients, the study authors also found “moderate evidence that acupuncture is more effective than no treatment” in relief of back pain. The authors note that more research is needed before acupuncture can be recommended over conventional therapies for back pain.

 

Just how does acupuncture work? According totraditional Chinese medicine, pain results from blocked energy along energy pathways of the body, which are unblocked when acupuncture needles are inserted along these invisible pathways. Acupuncture may release natural pain-relieving opioids, send signals to the sympathetic nervous system, and release neurochemicals and hormones.

 See Also: Using Acupuncture to Help Relieve Chronic Pain | Sciatica – Causes, Symptoms, and Natural Treatments | What is Trigger Point Therapy?

Massage Therapy

In a 2009 research review published in Spine, researchers reviewed 13 clinical trials on the use of massage in treatment of back pain. The study authors concluded that massage “might be beneficial for patients with subacute and chronic nonspecific low back pain, especially when combined with exercises and education.” Noting that more research is needed to confirm this conclusion, the authors call for further studies that might help determine whether massage is a cost-effective treatment for low back pain.

Massage therapy may also alleviate anxiety and depression associated with chronic pain. It is the most popular natural therapy for low back pain during pregnancy.

The Alexander Technique

Alexander Technique is a type of therapy that teaches people to improve their posture and eliminate bad habits such as slouching, which can lead to pain, muscle tension, and decreased mobility.

 There is strong scientific support for the effectiveness of Alexander Technique lessons in treatment of chronic back pain, according to a research review published in the International Journal of Clinical Practice in 2012. The review included one well-designed, well-conducted clinical trial demonstrating that Alexander Technique lessons led to significant long-term reductions in back pain and incapacity caused by chronic back pain. These results were broadly supported by a smaller, earlier clinical trial testing the use of Alexander Technique lessons in treatment of chronic back pain.

You can learn Alexander technique in private sessions or group classes. A typical session lasts about 45 minutes. During that time, the instructor notes the way you carry yourself and coaches you with verbal instruction and gentle touch.

Hypnotherapy

Also referred to as “hypnosis,” hypnotherapy is a mind-body technique that involves entering a trance-like state of deep relaxation and concentration. When undergoing hypnotherapy, patients are thought to be more open to suggestion. As such, hypnotherapy is often used to effect change in behaviors thought to contribute to health problems (including chronic pain).

Preliminary research suggests that hypnotherapy may be of some use in treatment of low back pain. For instance, a pilot study published in the International Journal of Clinical and Experimental Hypnosis found that a four-session hypnosis program (combined with a psychological education program) significantly reduced pain intensity and led to improvements in mood among patients with chronic low back pain.

 Balneotherapy

One of the oldest therapies for pain relief, balneotherapy is a form of hydrotherapy that involves bathing in mineral water or warm water.

For a 2006 report published in Rheumatology, investigators analyzed the available research on the use of balneotherapy in treatment of low back pain. Looking at five clinical trial, the report’s authors found “encouraging evidence” suggesting that balneotherapy may be effective for treating patients with low back pain. Noting that supporting data are scarce, the authors call for larger-scale trials on balneotherapy and low back pain.

Dead Sea salts and other sulfur-containing bath salts can be found in spas, health food stores, and online. However, people with heart conditions should not use balneotherapy unless under the supervision of their primary care provider.

Meditation

An ancient mind-body practice, meditation has been found to increase pain tolerance and promote management of chronic pain in a number of small studies. In addition, a number of preliminary studies have focused specifically on the use of meditation in management of low back pain. A 2008 study published in Pain, for example, found that an eight-week meditation program led to an improvement of pain acceptance and physical function in patients with chronic low back pain. The study included 37 older adults, with members meditating an average of 4.3 days a week for an average of 31.6 minutes a day.

 Although it’s not known how meditation might help relieve pain, it’s thought that the practice’s ability to induce physical and mental relaxation may help keep chronic stress from aggravating chronic pain conditions.

One of the most commonly practiced and well-studied forms of meditation is mindfulness meditation.

Tai Chi

Tai chi is an ancient martial art that involves slow, graceful movements and incorporates meditation and deep breathing. Thought to reduce stress, tai chi has been found to benefit people with chronic pain in a number of small studies.

 Although research on the use of tai chi in treatment of back pain is somewhat limited, there’s some evidence that practicing tai chi may help alleviate back pain to some degree. The available science includes a 2011 study published in Arthritis Care & Research, which found that a 10-week tai chi program reduced pain and improved functioning in people with long-term low back pain symptoms. The study involved 160 adults with chronic low back pain, half of whom participated in 40-minute-long tai chi sessions 18 times over the 10-week period.

 Music Therapy

Music therapy is a low-cost natural therapy that may reduce some of the stress of chronic pain in conjunction with other treatment. Studies find that it may reduce the disability, anxiety, and depression associated with chronic pain.

 A 2005 study published in Annals of Physical and Rehabilitation Medicine evaluated the influence of music therapy in hospitalized patients with chronic back pain. Researchers randomized 65 patients to receive, on alternate months, physical therapy plus four music therapy sessions or physical therapy alone and found that music significantly reduced disability, anxiety, and depression

 Conclusion

It is difficult at best to arrive at a conclusion about the effectiveness of Chiropractic manipulation for two reasons. 1) there are very few real scientific studies and 2) The members of the profession don’t even seem to agree on just when and on which conditions Chiropractors can offer lasting relief.  I can only conclude with this thought.  At one time Chiropractors were ridiculed by the medical profession and not covered by health insurance.  Now, that has changed and the profession seems to be enjoying a degree of legitimacy It has never before had.

If you will take anecdotal evidence as scientific proof then Chiropractors are very effective.  If you prefer to make a decision based on scientific studies…well, the jury may still be out.

The bottom line is quite simple.  If you have been to a Chiropractor and the visit or visits have resulted in relief from what ails you, then keep going.  You are the best judge of what’s right for you.

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Clinical Depression. You Can Defeat Your Demons!

By Bob Aronson

Depression, what is it? Why can’t you just snap out of it? Many people including family and friends who have not experienced depression have great difficulty understanding it much like people who are not addicts can’t understand addiction. In both cases we often hear advice like, “Snap out of it, you’ve got things pretty good. There’s no reason to be depressed.” Or, “You made the choice to start drinking or using drugs so choose to stop.” Oh, if it were that simple.

Here’s a cold slap in the face to bring us into reality. Depression is a mental illness, like the common cold is a physical illness. There has long been a stigma associated with mental illness held over from the days of Insane Asylums and “Crazy” people. That stigma is rapidly disappearing because so many people suffer from depression which is often a chemical imbalance that is quite treatable. Your mental health is every bit as important as your physical health and one can affect the other.

Here are some shocking statistics from the National Institutes of Mental Health (NIMH).

Major Depressive Disorder

• Major Depressive Disorder is the leading cause of disability in the U.S. for ages 15-44.³
• Major depressive disorder affects approximately 14.8 million American adults, or about 6.7 percent of the U.S. population age 18 and older in a given year.^1, 2
• While major depressive disorder can develop at any age, the median age at onset is 32.⁵
• Major depressive disorder is more prevalent in women than in men

Major or clinical depression is an awful feeling. It is a gnawing at the pit of your stomach, in your gut that makes you feel hopeless, helpless and alone. It is as though someone locked up your ability to reason, your sense of humor and your will to live in a windowless, dark, solitary confinement jail cell from which there is no escape. It is a constant feeling of impending doom combined with a profound sadness and even fear. It can steal your energy, memory, concentration, sex drive, interest in activities you used to love and…it can even destroy your will to live. Depression may not be as common as the common cold but it is much more common than ever before. Nearly 20 percent of Americans suffer from it at one time or another.

Logic says that you should be able to “Will” yourself out of this mood, but will power alone cannot give you the boost you need to get your life’s engine started again. Mental illness is not unlike physical illness. You cannot use will power to eliminate depression any more than you could use it to stop cancer. No one wants to be depressed, no one,. Think about it. If will power would work as an anti-depressant there would be no depression because again, no one wants to feel like what I described.

Let’s get to the medical description and symptoms as offered by the Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/clinical-depression/faq-20057770

“To be diagnosed with clinical depression, you must have five or more of the following symptoms over a two-week period, most of the day, nearly every day. At least one of the symptoms must be either a depressed mood or a loss of interest or pleasure. Signs and symptoms may include:
• Depressed mood, such as feeling sad, empty or tearful (in children and teens, depressed mood can appear as constant irritability)
• Significantly reduced interest or feeling no pleasure in all or most activities
• Significant weight loss when not dieting, weight gain, or decrease or increase in appetite (in children, failure to gain weight as expected)
• Insomnia or increased desire to sleep
• Either restlessness or slowed behavior that can be observed by others
• Fatigue or loss of energy
• Feelings of worthlessness, or excessive or inappropriate guilt
• Trouble making decisions, or trouble thinking or concentrating
• Recurrent thoughts of death or suicide, or a suicide attempt
Your symptoms must be severe enough to cause noticeable problems in relationships with others or in day-to-day activities, such as work, school or social activities. Symptoms may be based on your own feelings or on the observations of someone else.
Clinical depression can affect people of any age, including children. However, clinical depression symptoms, even if severe, usually improve with psychological counseling, antidepressant medications or a combination of the two.”

The National Institutes of Health (NIH) has this to say about depression.

What causes depression?

Several factors, or a combination of factors, may contribute to depression.
• Genes—people with a family history of depression may be more likely to develop it than those whose families do not have the illness.
• Brain chemistry—people with depression have different brain chemistry than those without the illness.
• Stress—loss of a loved one, a difficult relationship, or any stressful situation may trigger depression.
Depression affects different people in different ways.
• Women experience depression more often than men. Biological, life cycle, and hormonal factors that are unique to women may be linked to women’s higher depression rate. Women with depression typically have symptoms of sadness, worthlessness, and guilt.
• Men with depression are more likely to be very tired, irritable, and sometimes even angry. They may lose interest in work or activities they once enjoyed, and have sleep problems.
• Older adults with depression may have less obvious symptoms, or they may be less likely to admit to feelings of sadness or grief. They also are more likely to have medical conditions like heart disease or stroke, which may cause or contribute to depression. Certain medications also can have side effects that contribute to depression.
• Children with depression may pretend to be sick, refuse to go to school, cling to a parent, or worry that a parent may die. Older children or teens may get into trouble at school and be irritable. Because these signs can also be part of normal mood swings associated with certain childhood stages, it may be difficult to accurately diagnose a young person with depression.

Ok we’ve defined the malady and we know how clinicians determine if patients have it so the next logical question is, “What can you do about it.” Well, the answer is simple, but it will take a major commitment on your part to make the answer work for you, we can start by identifying some hazards, potholes on the road to good mental health.

Depression: Ten Traps to Avoid

Dr. Stephen Ilardi, author of “The Depression Cure,” has identified several things that can make depression worse. First, know this. Depression is a serious medical condition and should be treated by a doctor or licensed therapist. Having said that, here”s what Dr. Ilardi suggests.

Trap 1: Being a Couch Potato

When you’re feeling down, it’s tempting to hole up in your bed or on the couch. Yet exercise – Even moderate activity like brisk walking – has been shown to be at least as effective against depression as antidepressant medication. It works by boosting the activity of the “feel-good” neurochemicals dopamine and serotonin.
For an “antidepressant dose” of exercise, try at least 40 minutes of brisk walking or other aerobic activity three times a week.

Trap 2: Not Eating “Brain Food”

Omega-3 fats are key building blocks of brain tissue. But the body can’t make omega-3s; they have to come from our diets. Unfortunately, most Americans don’t consume nearly enough Omega-3s, and a deficiency leaves the brain vulnerable to depression. Omega-3s are found in wild game, cold-water fish and other seafood, but the most convenient source is a fish oil supplement. Ask your doctor about taking a daily dose of 1,000 mg of EPA, the most anti-inflammatory form of omega-3.

Trap 3: Avoiding Sunlight

Sunlight exposure is a natural mood booster. It triggers the brain’s production of serotonin, decreasing anxiety and giving a sense of well-being. Sunlight also helps reset the body clock each day, keeping sleep and other biological rhythms in sync.

During the short, cold, cloudy days of winter, an artificial light box can substitute effectively for missing sunlight. In fact, 30 minutes in front of a bright light box each day can help drive away the winter blues.

Trap 4: Not Getting Enough Vitamin D

Most people know vitamin D is needed to build strong bones. But it’s also essential for brain health. Unfortunately, more than 80 percent of Americans are vitamin D deficient. From March through October, midday sunlight exposure stimulates vitamin D production in the skin – experts advise five to 15 minutes of daily exposure (without sunscreen). For the rest of the year, ask your doctor about taking a vitamin D supplement.

Trap 5: Having Poor Sleep Habits

Chronic sleep deprivation is a major trigger of clinical depression, and many Americans fail to get the recommended seven to eight hours a night. How can you get better sleep?

Use the bed only for sleep and sex – not for watching TV, reading, or using a laptop. Turn in for bed and get up at the same time each day. Avoid caffeine and other stimulants after midday. Finally, turn off all overhead lights

Trap 6: Avoiding Friends and Family

When life becomes stressful, people often cut themselves off from others. That’s exactly the wrong thing to do, as research has shown that contact with supportive friends and family members can dramatically cut the risk of depression. Proximity to those who care about us actually changes our brain chemistry, slamming the brakes on the brain’s runaway stress circuits.

Trap 7: Mulling Things Over

When we’re depressed or anxious, we’re prone to dwelling at length on negative thoughts – rehashing themes of rejection, loss, failure, and threat, often for hours on end. Such rumination on negative thoughts is a major trigger for depression – and taking steps to avoid rumination has proven to be highly effective against depression.

How can you avoid rumination? Redirect attention away from your thoughts and toward interaction with others, or shift your focus to an absorbing activity. Alternatively, spend 10 minutes writing down the troubling thoughts, as a prelude to walking away from them.

Trap 8: Running with the Wrong Crowd

Scientists have discovered that moods are highly contagious: we “catch” them from the people around us, the result of specialized mirror neurons in the brain. If you’re feeling blue, spending time with upbeat, optimistic people might help you “light up” your brain’s positive emotion circuits.

Trap 9: Eating Sugar and Simple Carbs

Researchers now know that a depressed brain is an inflamed brain. And what we eat largely determines our level of inflammation. Sugar and simple carbs are highly inflammatory: they’re best consumed sparingly, if at all.

In contrast, colorful fruits and veggies are chockablock with natural antioxidants. Eating them can protect the body’s omega-3s, providing yet another nice antidepressant boost.

Trap 10: Failing to Get Help

Depression can be a life-threatening illness, and it’s not one you should try to “tough out” or battle on your own. People experiencing depression can benefit from the guidance of a trained behavior therapist to help them put into action depression-fighting strategies like exercise, sunlight exposure, omega-3 supplementation, anti-ruminative activity, enhanced social connection, and healthy sleep habits.

So you think you’ve avoided all the traps, but you are still depressed, now what? According to the National Alliance on Mental Illness (NAMI) here are the options. (http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/Depression/Depression_Treatment,_Services_and_Supports.htm)

Treating Major Depression

Although depression can be a devastating illness, it often responds to treatment. The key is to get a specific evaluation and a treatment plan. Today, there are a variety of treatment options available for depression. There are three well-established types of treatment: medications, psychotherapy and electroconvulsive therapy (ECT). A new treatment called transcranial magnetic stimulation (rTMS), has recently been cleared by the FDA for individuals who have not done well on one trial of an antidepressant. For some people who have a seasonal component to their depression, light therapy may be useful. In addition, many people like to manage their illness through alternative therapies or holistic approaches, such as acupuncture, meditation, and nutrition. These treatments may be used alone or in combination. However, depression does not always respond to medication. Treatment resistant depression (TRD) may require a more extensive treatment regimen involving a combination of therapies.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.