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What Happens to You When Obamacare is Repealed


cartoonDonald 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 38 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 because there is no replacement bill on which to report. We will cover that as thoroughly as possible when it happens.

We should remember, too, that President Trump has promised not only to replace the ACA, but to do so almost simultaneously with the repealing of the bill. Recently House Speaker Ryan made the same promise. We should hold them to that.

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 If ACA is repealed you will get far less coverage, but I’ll bet the insurance companies don’t reduce their rates by a single dime.

If ACA is repealed everyone will feel it, even the very wealthy.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 “Tweaking” Medicare and Medicaid. It remains to be seen what that means for Transplant Patients, but this congress is in a cutting mood, so it is unlikely their “Tweaking” will result in anything beneficial to us. 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.

Ever since the Affordable Care Act (ACA) passed in 2010, Republicans have vowed to repeal acait. 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, and there’s little reason to believe they won’t be, 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. 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.

conditionsIf 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 thatyoung-healthy-adults 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 medicaidNews, 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 fordonut-hole 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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bobBob 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

amtrakk-engineThe 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 nothidonate-lifeng 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. claire-selfieI 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.

PAUL OBITUARY PHOTO

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 ecg light blue on darker bluethe 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 amtrak-2of 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 meclair-and-paul-hug 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-kens-wife

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

kens-wife-at-xmas

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.

more-searching

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

she-finally-hears-his-heart

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 2Bob 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

cartoonOver 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 placefailure 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?

trash-canBefore 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.

governor-caseyHere’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?

hospital-billI 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 medicare-logois 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.

dialysisThis 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 human-organs-for-salein 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-satelDr. 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.

health-insurance-cincinnatiOne 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.

iranThe 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 2Bob 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.

cartoon-2Everyone, 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 thecartoon-3 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.

death-cartoonYou 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 greedgreed 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.

lobbyistsBig 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 ceo-payhealthcare 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 20th 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 2Bob 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

cartoonThe 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 heartbarnard 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.

procrastinatorThe 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 donate-lifesitting. 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.”

urgencySo 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 organmyths-and-facts 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 andbob 2 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.


mothers-love

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-selfie

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

claire-and-her-bosys-high-quality

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

framed-picture-of-pete

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-very-thin

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 peteremaining 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 paul-on-life-supportProcurement 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 Man in dark night, face lit by blank white LCD laptop display lightus 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. 

thaank-youIt 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 shedonor-certificateagreed 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 depositphotos_27524217-lovely-retired-elderly-couple-havingtotally 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.

bob 2*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

gloomy gus

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.

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

human brain

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 yourantidepressants 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.

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 Therapyelectroconvulsive 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

feet off table cartoonHuman 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 understanding cartoonrelationship 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.

build a bridgeNo 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 bridging differencesseems,” “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 Getting-To-Know-Yourself-Checklistdeep 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 Verbal-and-non-verbal-communication-during-job-interviewsinterpret 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.

Presentation1Most 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 relationships 2we 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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P 2015 photo priscillaAn 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 bob 2Communications 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

sobriety for opener

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, uncontrollablejust say no 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.

alcoholism definitionI 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.

facts abot deathI’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.
drunk in trashAlcoholism 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 moshiding a bottlet 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.

liquor sign
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 sobriety quotevowed 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:

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.

bobBob 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


 

 

husband_inside_the_car_lady

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 Medicare 2and 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.

bob on scooter bahamasScooter or wheelchair? That’s probably not awheelchair 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.

who paysLet’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 images (1)(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 pointimages (2)
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.

downloadRecently 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 toload em up 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 flagstands 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.

wheelchair facing stepsFinally, 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 mqdefaultthe 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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bobBob 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. 

 

crazy people

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, cramcowboy asleep in chairped 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, Dawn anitaI 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, abp croppednd 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 Wedbloodworknesday 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 emergencyright 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 5doc tells anita.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 finallyunites of blood 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.”

 

cancer centerWalking 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 mac lunghighly 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 mantibioticsedication 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 slow hemoglobinleepless 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


heart full of love

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 earthquakecoaster 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 if something happensabout 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 man down in dark rampwouldn’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 emergency entrancewhen 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 cekgarefully 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 racing ambulancehospital 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. united hospitalI 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, gechogramulp” 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 ejection fraction 2much 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 Mayo jaxhometown 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 medical staff waitingthe 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.

Tben caseyhe 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 patricia nealthat 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 mayo receptionICUthought. “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.cardiac icu 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. cup of iceMore,” 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 Rasputenincredible, 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. deprressionWhen 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.

facebook wordpress
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 sRobin and dogshows 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 trobin's boothent 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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bobBob 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


cartoon
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 world's biggest a holebecause 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.

big pharmaBefore 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 andcosts 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. MedicareAnother 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
lobbyistsSince 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.

generic drugs1Then, 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 advairthere 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 Optionaffording 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 savecouponmoney 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.

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bob half of bob and jay photoBob 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.

'The patient in the next bed is highly infectious. Thank God for these curtains.'

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 airplane crashlargest 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 beingcanada-hospital-deaths 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 Rconsumer reportseports 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 superbugsmore 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). patient deaths 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 certificathospital acquired infectionses 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 glovedchanging 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.

  • progress reportA 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 hgoogleospital 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 aronsonBob 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

gloomy gusHaving 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 not okcaused 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?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

anxiety symptomsPatients 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

time to healResearchers 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 antidepressantdepression meds 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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All the views

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

cartoonThe 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

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 diseases

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

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.

liver disease stagesThe 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: transplant(http://www.barnesjewish.org/conditions-leading-to-liver-transplant)

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.recovery

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 rejectionlife 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.costs

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 2Bob 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

cartoonI 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 iscartoon two 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. cancerrBut 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 bigbig pharma 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

campaign contributionsSince 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, theadvertising 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 pharmacieshave 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 couponavailable 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

  1. http://healthfinder.gov/rxdrug

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bob 2Bob 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)

Tdisabled cartoonhis 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.

permit tag 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.

statute imageThe 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!”
  1. Think Before You Speak. Avoid using labels when you speak – they are offensive to everyone, including people with disabilities.
  2. 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.”
  3. 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. communicatingWhen 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:

language

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.permits and licenses

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.go to jail

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.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.

bobaronsonBob 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

smoking cartoon

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.”

-0-

New heart, new life, new man

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.


evolution of obesityBy 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.  bad haircutA 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.bmi index
  • 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 Pressureblood pressure cuff

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 Apneasleep 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 ing caloriescalculator 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.sugar

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 fructosei.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 2nd 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 farfiber filled fruit 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.  TStevia and other sweetenershey 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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New heart, new life, new man

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

heart transplant cartoon

“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?


Food safety cartoonThe 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 take proactive measurescompromised 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 Greensleafy 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

tunaIf 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) Cheesecheese

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

utsThe 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

thermometerInadequate 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:

  • lmonellaSalmonella, 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.

foodborne diseaseTypes 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 dishesWash 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 insectAmericans 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.

poultryMYTH: 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

cookie doughMYTH: 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.

How to wash handsFACT: 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 minus Jay full shotBob 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


faith quoteYou 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 coordinatorsrequestors, 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

 

tweety cartoonLet 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 recommendscience religion 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.

baylor universityOn 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 duke universityethnocentric 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.

man prayingWhy 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 Godfaith 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?

huffington post
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 obvioublood transfusions 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, askholy bible 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.

confusedEver 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?

God“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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All the views

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

 hep C ribbon
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

stop the judgment“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

hep c and liver 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 Cure cartoonHCV 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 Harvonicured 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.

 financial aid resources

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:

  • blood transfusionInjecting 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 2I 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 stigma postershrouded 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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New heart, new life, new man

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

cartoonThere 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 Give thanks givee lifeinformation 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.
  • organ donoars save livesSeven 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 qualifyingcenters 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.

the waiting listUniversity 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

financial aidMost 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.

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