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What Happens If and When Obamacare is Repealed


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

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

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 If ACA is repealed you will get far less coverage, but you can be sure the insurance companies don’t reduce their rates by a single dime.

If ACA is repealed everyone will feel it, even the very wealthy.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

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

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

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

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

  • The ACA helps seniors in the donut hole until it is closed. Copayments required for brand-name and generic drugs are being phased down to the standard 25 percent by 2020. Brand-name drugs discounts from manufacturers increase each year in the coverage gap. Copayments for generic drugs are reduced by seven percentage points each year until the coverage gap is eliminated.
  • In 2016, seniors receive a 55 percent discount on brand-name prescription drugs and a 42 percent discount on generic drugs, which is applied at the pharmacy. Below are the amounts that beneficiaries will pay for their medications until the donut hole is closed in 2020.
    • 2016: 45 percent for brand-names and 58 percent for generics
    • 2017: 40 percent for brand-names and 51 percent for generics
    • 2018: 35 percent for brand-names and 44 percent for generics
    • 2019: 30 percent for brand-names and 37 percent for generics
    • 2020: 25 percent for brand-names and 25 percent for generics

Ever since the Affordable Care Act (ACA) passed in 2010, Republicans have vowed to repeal 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 you will be affected in many ways, now and in the future. I’d like to keep this blog relatively short so I will only address four issues here, but they are big ones.

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

Effect Number One. Pre-existing Conditions

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

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. 

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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

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.

THE PRICE WE PAY FOR THE HIGH COST OF ANTI-REJECTION DRUGS


dialysis scam cartoonIntroduction by Bob Aronson

Blog by James Myers

 James Myers lives in Indiana and is a member of Facebook’s Organ Transplant Initiative (OTI).  He suffers from End Stage Renal Disease (ESRD) or Kidney failure.  Jim is on dialysis and has been active locally and nationally in the effort to end the 36 month limit on Medicare coverage of anti-rejection drugs.  He is one of the 100,000 kidney patients on the national transplant wjames myersaiting list. Jim is a frequent thoughtful and valuable contributor to the discussions on OTI and we thank him profusely for writing the following blog. 

 

 

ARE DIALYSIS PATIENTS NOT SEEKING KIDNEY TRANSPLANTS BECAUSE ANTI-REJECTION DRUGS COST TOO MUCH?

 By James Myers

I guess the best place to start a blog about kidney disease is to explain what the kidneys do.  This graphic pretty much explains it.What do kidney's do graphic

Everyone is born with two kidneys, but we can survive with one if necessary.  Sometimes called “The Silent Epidemic” Kidney disease affects millions and threatens even more.   600,000 American citizens suffer from ESRD (End Stage Renal Disease) and kidney failure which leaves you with 3 choices: (1) dialysis; (2) a kidney transplant or (3) death. Kidney transplant recipients must take immunosuppressive drugs for the life of their transplant, or they risk losing their new organ. Medicare pays for the transplant and immunosuppressive drugs for 36

medicare logo 2months post-transplant unless beneficiary is Medicare-aged (65) or Medicare-disabled.   The Medicare (ESRD) program pays for dialysis or transplantation for over 600,000 kidney disease patients every year, regardless of age, and has saved millions of lives in the four decades since its enactment. After a transplant, recipients must take immunosuppressive drugs every day for the  rest of his or her life.   Failure to do so significantly increases the risk of organ rejection and therefore, death.   If you are covered by Medicare due to either age or disability and have a transplant your anti-rejection drugs are covered for life.kidney transplant  If you are not covered due to age or disability Medicare will still pay for your kidney transplant, but will only cover anti-rejection drugs for 36 months, then you are on your own.  this policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis which costs more and even more ironically, if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will pay for another transplant and/or dialysis at costs that are many times that of the annual expense of immunosuppressant drugs.  This political slight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Here are some startling facts that make you wonder woman wired for carewhy congress refuses to make a common sense change.   When Medicare coverage ends after 36 months many transplant recipients have difficulty finding other coverage for their immunosuppressive drugs. 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 mmunosuppressive  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 again become taxpayers.

Currently, there is a bill pending in the U.S. senate (S. 323), “The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act,” would extend Medicare Part B coverage for kidney transplant recipients for the purpose of immunosuppressive drugs only. All other Medicare coverage would end 3U.s. senate6 months after the transplant. Beneficiaries would be responsible for the appropriate portion of the Part B premium, as well as applicable deductible and coinsurance requirements. For patients who have another form of health insurance, Medicare would be the secondary payer. The bill also requires that group health plans currently providing coverage of immunosuppressive drugs for kidney transplant recipients maintain this coverage.

There is a corresponding bill in the U.S. House of Representatives (H.R. 1428): Comprehensive Immunosuppressive Drug Coverage for Kidney pay for the good news cartoonTransplant Patients Act.   The Senate version of the bill has been passed out of committee.

Last week, I read a blog I found to be disturbing. Coupled with that, I received a note from one of my friends. The note and the blog indicated that people who were unable to age/disability qualify for Medicare were refusing transplants due to the high costs of the anti-rejection medications. According to Cameron Field and Kidney Buzz, of the 275,000 people who are on dialysis in the United States, only 93,000 chose to be listed on the US Kidney Transplant Waiting List. Two thirds of dialysis patients are not listed, while only one third had chosen to list.

Does the prospect of Medicare coverage for only 36 months and then the average monthly cost of approximately $2100/ month cause people to decline the transplant option? Of course, there may be others reasons to decline; it requires a surgery, the risk of infection, the risk of rejection even if you take the meds, the necessary follow up, and pain, but sources are now saying that it may be possible that up to 34% of dialysis patients are declining transplants due to the cost of anti-rejection meds.  They know they will die without the transplant but they have no choice.

The Dialysis Patient Citizens conducted a survey last year on this issue. 29% said they had other medical conditions. 26% said they were too old. 7% said they were overweight. 6% said their doctors didn’t recommend it. 5% said they were satisfied with dialysis. However, 6% cited financial reasons generally, 4% said they couldn’t afford the surgery, and 2.5% said they couldn’t afford the medications. 17% cited personal reasons. Who knows how many in that 17% didn’t want to disclose financial hardship. So according to the DPC’s data, between 13% and 30% aren’t on the list due to financial reasons.   Of the 13,000 transplants performed last year, 6,000 were from living donors, but there are some barriers to living donation that must be overcome, as well.

Nearly everyone knows that while we are born with two kidney’s we can live with just one, so many people choose to donate the second kidney tliving organ donorso a dying patient,.  While the recipients insurance pays the medical costs the donor is often left footing the bill for lost wages while hospitalized and travel to and from the transplant center.   Some states,but not all will provide reimbursement in the form of tax deductions, but nice as they are, they don’t put cash in the pocket of the donor.  The feds have a few grants available but they are grossly underfunded and so many have to foot the bill themselves.  That knowledge may prevent many from offering to be donors. The DPC estimates that cost to reimburse lost wages is about $6,000 for one surgery. When you look at in in terms of Medicare paying for the transplant surgery ($100,000) and for the cost of anti-rejection drugs ($24,000 a year), travel and lost wages for the donor would be a minimal expense and if available would likely increase the number of living donors.

So where do we stand?  If 30% of the people taking dialysis refuse to be listed due to the costs of transplant autoimmune medications, then we are talking about approximately 100,000 people who cannot afford a life-saving transplant.

Everyone on dialysis knows that life expectancy while on that machine is, on average, from 3-5 years. Life expectancy for a transplant, from a living donor is on average, 12 to 20 years, while a deceased donor kidney is somewhat less, 8 to 12 years. If you receive a kidney transplant before you are required to begin dialysis then you will live 10 to 15 years longer than if you stayed on dialysis.  So, even though a kidney transplant involves major surgery and requires some risk, in comparison it offers you a longer life.   Most patients who have been on dialysis before their transplant see an amazing difference in their quality of life.

There are two closely related issues here that can be resolved.by one simple action.  The Congress must pass and the President must sign the bill that would provide lifetime coverage of anti-rejection drugs.  It is the only logical, financially responsible and humane solution to a problem that has already caused untold misery and death.

If you find the current law absurd and a waste of money and want to see it changed to save lives and taxpayer dollars then you can help by writing to your congressional representative or U.S. Senator ttake actionoday.  The sample letter below can be used as a guide, but we encourage you to use your own words.

Sample language

Dear ­­­­­____; I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients (for the house, refer to file H.R. 1428.  For the senate refer to file S 323), the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends about $90,000 annually on a dialysis patient and about $25,000 per year for a kidney transplant recipient, after the year of the transplant).

The current bill would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it.

On behalf of thousands of transplant patients, I respectfully request your support of this legislation. Sincerely,

Your name

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource.  You can find your elected representatives and others here http://www.usa.gov/Contact/Elected.shtml or you can use the following links as well

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link. http://www.house.gov/representatives/find/

 

bob minus Jay full shotBob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 4,000 member Organ Transplant Initiative (OTI) and the author of most of these donation/transplantation blogs. You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Brain Death, Organ Donation and Family Disagreement –How Is It Handled?


artichoke heart cartoon

A note from Bob Aronson

This account of the organ donation process was published by the American Medical Association in 2005.  While some of the information is dated the process described here is for the most part still followed in most states by medical professionals and Organ Procurement Organizations (OPOs).

This story is a very graphic description of the difficulties that organ transplant representatives can face when a patient is declared brain dead and is found to have a donor card in their wallet.  The biggest change since this account was published is that most states have passed laws that allow OPOs to proceed with organ recovery with or without family consent if the donor is registered as such.  It is also true, though, that many OPOs still ask families to honor their loved one’s wishes and although rare, some families object.

I have worked very closely with OPOs in the past and can testify first hand to the great amount of preparation and training their people experience in order to handle situations just like the one described here.  The OPO people who contact families when a loved one is dying or declared brain dead are very special people endowed with natural compassion and empathy.  I am in awe of these professionals who daily are called upon to explain to grieving families how their gift of life can help so many 0thers.

This is our last blog of 2013.  It is fitting that we close the year honoring OPOs and the many wonderful people who work so hard to save lives and bring comfort to grieving families.

On behalf of Bob’s Newheart and Organ Transplant Initiative on Facebook we say thank you OPOs you are doing God’s work and we appreciate your professionalism and compassion.  Personally I offer my most sincere gratitude from the bottom of my donor’s heart.

Family Disagreement Over Organ Donation

American Medical Association

Virtual Mentor. September 2005, Volume 7, Number 9.

Clinical Cases

Commentary by Douglas W. Hanto, MD, PhD, Thomas G. Peters, MD, and by Richard J. Howard, MD, PhD, and Danielle Cornell, BSN

The sound of Sam’s pager suddenly awakens him. A third-year medical student, Sam is in the midst of his trauma surgery rotation. He rushes to the trauma department and learns that his next patient, Justin Lewis, is a 20-year-old male who was in a major automobile accident. Tested en route to the hospital, Justin had a Glasgowcoma scale score of 3. As Justin is brought to the trauma room, the paramedics tell the attending physician, Dr. Hardy, what they know about the accident. According to the EMTs, Justin fell out of a car that was traveling 70 miles per hour and landed on this head. After an extensive emergency room workup, Justin is declared brain dead. Prior to disconnecting him from the ventilator, the ER staff discovers that he has an organ donor card in his wallet. Familiar with the organ donation procedures, Sam calls the organ procurement agency while Dr. Hardy tells Justin’s family the news.

famiy disagreementAn hour later, Mr. Sterling, a representative from the organ procurement organization arrives at the hospital and introduces himself to the family. Justin’s father tells Mr. Sterling that his son definitely wanted to donate his organs, but Justin’s mother interjects. She is adamantly opposed to anyone’s taking organs out of her son.

Meanwhile, Sam asks Dr. Hardy what the plan for the patient is. Dr. Hardy says that Justin will remain on mechanical ventilation until a final decision is made regarding donation of his organs.

Commentary 1

by Douglas W. Hanto MD, PhD

When the death of a patient is imminent or has occurred, as in the case of Justin, all hospitals that receive Medicare and Medicaid dollars are required by the Conpatient on life supportditions of Participation published by the Centers for Medicare and Medicaid Services to have protocols in place for notifying the local federally designated organ procurement organization (OPO). This notification is mandatory whether the patient has a signed organ donor card or not. In Justin’s case, even if the ER staff hadorgan donor card not found an organ donor card in his wallet, Sam would have been correct in calling the OPO. The OPO determines the medical suitability of the potential donor and usually sends a trained organ donation coordinator to the hospital to review the patient’s records, speak to the family, clarify health-related information, and request permission for organ donation. Some OPOs have specially trained family counselors who request permission for donation from the family. If the family gives permission, the donation coordinator assumes the medical management of the donor, and all medical costs from the time of declared brain death are billed to the OPO, not to the patient’s insurance or family.

The refusal of families to grant permission is a major impediment to organ donation. Several factors have been shown to improve family consent rates. First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death. In this case, Justin’s mother may simply need more time to adjust and accept the death of her son. Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family. Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures arefollowed [1].

Even when a patient has a signed organ donation card, the OPO oftenseeks family permission to proceed with donation. The Uniform Anatomical Gift Act (1968, revised 1987) established that a signed organ donation card is sufficient to proceed with donation, and it has been confirmed recently that such documents function legally as advance directives. In the UnitedStates, however, it is customary for the OPO to request permission from the next-of-kin due to fear of litigation.

Recently, several states have passed legislation establishing “first-person consent” whereby the family cannot override an individual’s documented desire to be an organ donor. Some states have established first-person consent registries for people interested in being deceased organ donors. This is based on the strong belief that the donor’s wishes should be adhered to. It is not dissimilar to a last will and testament that disposes of our personal property and assets after we die. Each year more states are passing first-person consent laws that are strongly supported by the OPOs and the transplant community.

Had Justin died in a state with first-person consent laws, the OPO would have informed the family of his pre-existing declaration to be an organ donor and would not have sought the family’s permission. First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families whomade a decision themselves and declined to donate the organs subsequently regretted their decision [2].

In a case such as this one, where the mother and father disagree about organ donation, the donation coordinator would ask the mother why she was opposed to donation and would try to address her specific concerns. The coordinator would emphasize that her son had expressed a desire to donate and that his gift could save and improve the lives of several seriously ill patients. The coordinator would also try to dispel any myths about organ donation that Justin’s mother might have heard. It is important for her to understand that her son’s body will not be disfigured and that donation will not affect funeral arrangements or viewing of the body. Often times a hospital social worker or pastoral care representative can be called to counsel the family and resolve their disagreement. One of these individuals might have been able to help Justin’s mother agree to donation.

Because of the continued shortage of organs for transplantation, it has been argued that we should go beyond first-person consent and adopt the principle of “presumed consent.” Presumed consent has been legislated by many European countries with a resulting increase in organ donation rates [3]. Presumed consent is an “opt-out” policy in which everyone is considered an organ donor unless he or she registers opposition. This process contrasts with our current, “opt-in” system, in which the individual or next-of-kin must give explicit consent for organ donation. Individual choice is not removed in either case, but persons opting out have the additional responsibility of documenting their decisions. A recent analysis showed that the opt-out countries had a much higher organ donation rate than opt-in countries [4]. And in an online experiment, responders’ decisions about organ donation were dramatically influenced by whether the question was presented as an opt-in or opt-out choice; rates for donation doubled when the default position was opting out and documentation was needed to opt in; that is, to donate.

Once permission has been obtained, the donor is managed medically to maintain optimal organ function [5]. All organs are evaluated for their suitability for transplantation, the donor is screened for infectious diseases (eg, hepatitis, HIV), and blood and tissue types are obtained. The donor information is then entered into the national computer database maintained by UNOS (United Network for Organ Sharing) where it is matched with wait-listed patients. The computer produces a list of the potential recipients for each of the organs ranked by priority as determined by national organ allocation policies. At that point, the donor coordinator calls the transplant centers where prospective recipients are listed to ensure a recipient will be available and waiting for the organ. The organs are then removed in the hospital operating room, often by several surgical teams from different transplant centers in a manner that is respectful of the decedent and his or her family. The young patient in this case could potentially donate his heart, both lungs, liver, pancreas, both kidneys, and small intestine for transplantation,thereby benefiting as many as 8 recipients. He could help many more patients by being a tissue donor (corneas, skin, bone, blood vessels) as well. Many times families report great satisfaction after organ and tissue donation from knowing that so much good can result from so much pain.


References

  1. Gortmaker SL, Beasley CL, Sheehy E, et al. Improving the request process to increase family consent for organ donation. J Transpl Coord. 1998;8:210-217.
  2. DeJong W, Franz HG, Wolfe SM, et al. Requesting organ donation: an interview study of donor and nondonor families. Am J Crit Care. 1998;7:13-23.
  3. Gundle K. Presumed consent: an international comparison and possibilities for change in the United States. Camb Q Healthc Ethics. 2005;14:113-118.
  4. Johnson EJ, Goldstein DG. Defaults and donation decisions. Transplantation. 2004;78:1713-1716.
  5. Wood KE, Becker BN, McCartney JG, D’Alessandro AM, Coursin DB. Care of the potential organ donor. N Engl J Med. 2004;351:2730-2739.

Douglas W. Hanto, MD, PhD, is the Lewis Thomas Professor of Surgery at Harvard Medical School and chief of the Division of Transplantation at Beth Israel Deaconess Medical Center in Boston, Massachusetts.

Commentary 2

by Thomas G. Peters, MD

Patient-centered ethical dilemmas often arise in a trauma surgery rotation. For the medical student, a sudden and perplexing ethical dilemma may actually open the door to solving certain clinical problems and issues of family interaction.

In this case, there is no question that the patient, a 20-year-old man who sustained a massive head injury, is dead. With cardiorespiratory function being sustained artificially, the emergency room and trauma surgery staff have appropriately assessed the patient, tested and ruled out any possibility of survival, and determined the hopelessness of the patient care situation. With such a dire determination, however, comes new promise: helping others by way of organ donation. The student is a witness not only to the consequences of severe trauma, but also to the process of consent for organ donation.

The case narrative indicates that the patient, Justin, carried what we presume is a recognized legal organ donor card. Such a document is generally believed to be sufficient to go forward with organ donation. Some states including Florida, Pennsylvania, and Texas, have determined that the organ donor card is an end-of-life document that is afforded as much standing as a will or advance health care directive. Therefore, the issue of consent and legality of organ donation should not be a dilemma considering that a 20-year-old man is past the age of majority—18—in most states.

A dilemma does arise, however, because Justin and his father favor organ donation, but his mother does not. She is adamantly opposed to anyone removing organs from her son, and the story appears to end with the attending physician noting that mechanical ventilation and other support measures will be carried on until an agreement is reached regarding organ donation.

The best-known way to prevent the conflict between the mother and the father is for families to discuss organ donation before any tragedy occurs. Consent disagreements almost never arise when a family has talked about the idea of postmortem organ donation and the intentions of family members are fully understood by all.

It appears, however, that no such discussion took place between Justin and his parents, so the medical staff faces a dilemma: whether or not to maintain mechanical and artificial support, which use critical hospital resources, while the family is further counseled regarding organ donation. In fact, most acute care units have experienced similar circumstances, and giving time to grieving families in the final hours of life, whether organ donation is to occur or not, is not unusual. So, support might be continued for several hours during which resolution of the family conflict would become an important and, perhaps, intense matter.

The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all. This professional should be able to apply techniques of personal communication to persuade the mother that the wishes of her deceased son should be honored.

In the majority of such situations, the procurement coordinator begins by facilitating an empathic discussion among all concerned persons with the aim of reaching a consensus on what the decedent really may have wanted. The presence of an organ donor card itself, while sufficient to preclude the need for family consent to organ removal, does not always silence the objections or satisfy the concerns of those who would prefer that organ donation not occur. Thus, the mother who is objecting might be given time to explore the reasons for her opposition to organ donation before being confronted about her son’s wishes. The astute organ procurement coordinator will use techniques of active listening to engage the reluctant—or opposing—person and to allow full expression of his or her thoughts and feelings. It is never enjoyable to talk about recovering organs from a young person who has died unexpectedly. The waves of emotion that must overcome parents are best managed by those trained to listen and respond appropriately in such difficult family circumstances.

Over a period of several hours, the effective procurement coordinator will have established a relationship with the mother and permitted her to work through the early stages of grief and to have her questions regarding organ donation and transplantation answered. It is highly likely that the mother will ultimately come to the understanding that her son’s wishes should be honored, even if she opposes organ donation.

It is, of course, possible that the organ procurement specialist is not as talented as one would wish, or that the mother remains adamantly opposed to organ removal no matter what. In such a case, the organ procurement team is beset with a difficult decision: whether or not to go forward with organ recovery since the signed donor card is suitable consent, and, thus, leave the family in conflict. The family would be left in conflict if organs are not recovered anyway, since the father favors organ donation. In the circumstance of unsuccessful counseling, the organ procurement agency would need to examine the procedures and experiences that have allowed for the best outcome of potential donor families and others. In many such situations, organ recovery is accomplished even when objections persist. While the family dilemma goes on, lives of other critically ill persons will be saved by organs recovered from the dead trauma victim.

Thomas G. Peters, MD, is a professor of surgery and chief of the Transplant Service at the University of Florida Health Sciences Center in Jacksonville. In 1988, Dr. Peters organized and directed the Jacksonville Transplant Center at Methodist Medical Center and served as chairman of the Department of Surgery at Methodist Medical Center for 10 years. He was co-chief of surgery at the University of Florida and Shands Jacksonville from 1989 until 2001.

Commentary 3
by Richard J. Howard, MD, and Danielle Cornell, BSN

The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation. In addition to dealing with an unexpected injury or intracerebral accident, the family must come to terms with the fact that their loved one is dead. They may have a difficult time accepting this since the patient has a heartbeat, a measurable blood pressure, produces urine, and has good skin color and other indications that suggest life. Many individuals (even physicians) do not understand the concept of brain death. And now someone the family has not seen before comes in from something called an organ procurement organization and asks permission to remove the organs of their son or mother or sister for transplantation. The stresses associated with the initial injury, the death, and now the request for organs cannot be underestimated and can be difficult for anyone who has not gone through this process to fully appreciate.

Yet organ donation can salvage a great deal of good from a tragic circumstance. Knowing that their loved one can save and improve the lives of other individuals through organ and tissue donation can be a source of great solace and comfort. The organ donation can become a living memory of and tribute to their relative.

In the example cited here a 20-year-old man, Justin Lewis, died in an automobile accident, and testing showed he was a suitable potential organ and tissue donor. In this particular case, it was discovered that he had signed an organ donor card. The Uniform Anatomical Gift Act (UAGA) of 1968 clearly indicates that a donor card signed in the presence of 2 witnesses is legally binding. The act was adopted by all states within 3 years. Many organ procurement organizations (OPOs), however, do not take advantage of this provision because they are concerned about their relations with the family as well as about potential legal disputes and adverse publicity that could result in a decline in organ donation should they act upon the donor’s consent—even though such worries have not proved to be an issue in most places.

States have responded to this concern, and legislation authorizing the donors intent, called “first-person consent,” has now been enacted in 42 states. These laws acknowledge that a documented donation decision (donor card, drivers’ license, donor registry, etc) that has not been revoked by the donor prior to death, is legally binding and does not require the consent of any other person upon death. Despite this legislation, many OPOs are still reluctant to pursue first-person consent. Fifteen years following the enactment of the UAGA, OPOs in only 4 states reported they were actively practicing first-person consent organ donation recoveries.

In the case of this 20-year-old designated donor, our organ procurement organization, would have modified its approach to the family. The staff would have notified the parents that their son had clearly showed his intent to be a donor by so designating on his driver’s license and that we planned to honor his wishes. Even if both parents disagree with organ donation, the signed organ donor card is sufficient permission for the OPO to recover organs for transplantation. We have had only a few differences of opinion with the donors’ legal next of kin in honoring first-person consent.

The case of Justin Lewis would not be unmanageable for an OPO that is actively pursuing first-person consent cases. The OPO staff must discuss organ donation and what it entails with the family and answer their questions in a supportive, non-confrontational, non-threatening manner. We have found that much of the objection to organ donation is due to lack of accurate information. For instance, some individuals believe that if organ or tissue donation occurs, there can be no viewing of the body afterwards. Some will agree to organ donation once they realize that a viewing can still take place and that no incisions will be made on the head or neck.

Parental or next-of-kin refusal often has less to do with the concept of organ donation than with control or authority for decision making for their injured and now dead relative. Building a relationship with the family by asking questions about what type of person their relative was can assist in establishing communication related to the patient; the importance of this relationship cannot be overstated. Having a sympathetic OPO coordinator or designated requester who is willing to take time with the family, hear their concerns, and answer questions frequently means the difference between obtaining permission and being met with refusal. Asking the parents if they understood what the physician told them about brain death also provides an opportunity for educating and trust-building.

Even if the OPO staff or other designated requestors aren’t negotiating with family members to obtain consent, they should still speak to the next-of-kin in a quiet room that is softly lit and has enough chairs so that no person is left standing. The number of people in the room should be limited to 1 or 2 family members. The more people who are in the room, the more likely someone will object to donation. It is important for the requestor staff to state that the adult decedent willingly made a choice to give the “gift of life” upon his or her death, and that the purpose of the meeting is to answer any questions they may have about the procedure and to ask some questions about the medical history of the donor.

Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families, and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.

When an OPO makes the choice to recover organs from a designated donor against the family’s wishes, an ethical balancing act may ensue. Some would argue that the wishes of the surviving family members should be given primary consideration; that procuring organs from a deceased patient in opposition to the family’s desire will add to their grief, especially in the case of parents. But others will dispute that the surviving family members deserve primary consideration, arguing that the patient’s wishes to be an organ donor upon death must be honored. Is it ethical for the OPO to walk away from a patient and not honor the documented decision he or she made while alive? Is it defensible to decide not to attempt to place and procure organs for transplant because the family doesn’t agree with the decision the adult patient made during life? Finally, is it right to ignore the patient’s request because he can no longer speak for himself?

Would we deny living patients’ the right to decline blood products, to see their religious representative, or to decline cardiopulmonary resuscitation? The answer, simply, is no. People who make the decision to become donors during their lives have a right to have that decision carried out upon their death. It is not ethical for an OPO to refuse to recover organs only because the donor can no longer speak for himself or herself. We believe the wishes of someone who signs a donor card should be respected even if the family disagrees. And yet we realize there may be unique circumstances where pursuing first- person consent might not be in the best interest of the family or of the transplantation community. Every potential donor situation has unique aspects. While some OPOs err on the side of the designated donor, there is no 1 formula that will always guarantee a good outcome.

There are also times when a disagreement about donation cannot be resolved among family members (and where the donor has not indicated his wishes while alive). If a resolution is not attainable despite the best efforts of the OPO coordinator, it may be appropriate for the OPO to withdraw and make no further efforts to get those who object to donation to change their minds. In these situations the family usually comes to a consensus and refuses permission for donation. If, for example, the family stated that the patient, in the presence of his mother, girlfriend, or other family member, verbally revoked his decision to become a donor, the OPO would have to withdraw all attempts of obtaining consent for donation.

Richard J. Howard, MD, PhD, is the Robert H. and Kathleen M. Axline Professor of Surgery and head of the Division of Transplantation at the University of Florida. Dr. Howard is also the past president of the American Association of Transplant Surgeons and is a member of the Board of Directors of UNOS (United Network for Organ Sharing).

Danielle Cornell, BSN, is the executive director of LifeQuest Organ Recovery Services, the organ procurement organization (OPO) that serves northern Florida.

The people and events in this case are fictional. Resemblance to real events or to names of people, living or dead, is entirely coincidental. The viewpoints expressed on this site are those of the authors and do not necessarily reflect the views and policies of the AMA.

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bob minus Jay full shotBob Aronson is a 2007 heart transplant recipient and the author of most of the more than 200 Bob’s Newheart blogs.  On occasion we publish guest blogs and welcome submissions.  We cannot guarantee that your submission will be used and it will not be returned.  We reserve the right to edit guest blogs but will always give full credit to the author or source. 

Today’s post is the last one of 2013.  Bob’s Newheart blogs are read in 142 countries and average 5,000 readers per month, mostly from the United States with English speaking countries rounding out the top ten.

Blogs may be reproduced without permission provided attribution is given.

We send our best wishes and hopes that all of our readers, followers and friends have a happy, peaceful and safe holiday season. 

Kidney Disease — What You Need To Know


kidney cartoon 2

Blog by Bob Aronson

My last blog was about kidney disease and so is this one.  “Steering Toward Hope” told about Johnny Racine the Canadian father of 16 year old twin boys and how they turned their 2007 Ford Mustang into an 800 horsepower fire breathing showpiece named “The Kidney Hope Car.”  Racine, his boys and the rest of the “Steering” team will travel the width of Canada to promote organ donation and to raise money for kidney research.

This post will take a different but complimentary approach.  The law of supply and demand applies to human organs as it does to many other commodities.  While we must work harder than ever to increase the supply we must concurrently do everything we can to reduce the demand.  It is the only way we will ever arrive at anything even close to resembling a balance of the two. 

The following paragraphs will examine kidney disease from several angles — from listening to how patients describe their illness to prevention, treatment and what the future holds.

Before I get into the real life, real people part of this blog, let me first lay out the facts about Chronic Kidney Disease (CKD).  It is a major health problem that affects more than 26 million Americans.  It is the ninth-leading cause of death in the U.S.   While the numbers are different elsewhere every country is having the same experience.  Whether you are from Singapore, New Zealand, Canada or Peru you will find that kidney disease is on the rise and there are not enough organs for the number of people who need transplants.

Of the 26 million Americans with kidney disease, about half a million face kidney failure, the condition that requires dialysis. Dialysis, though, is not a cure and in many cases is a stop gap effort while the patient awaits an organ transplant — but transplants are hard to get. 

At this writing in November of 2013 there are almost 100,000 people on the list awaiting kidney transplants but 5-6,000 of them die while waiting because the supply of organs not only does not meet demand it is falling farther and farther behind.  Unlike other transplants though, one can also get a kidney from a living donor but there aren’t enough of them either in fact the number of living kidney donors has fallen steadily for the past several years, to 13,040 in 2012, despite the growing need.  Regardless of the source the average wait time for a Kidney Transplant in the U.S. is 1,121 days. 

I’m hoping this blog will help people understand two things. 1) how to prevent kidney disease and 2) what to expect if you get it.  But first, I think it is important to discuss what causes CKD.

Causes of Kidney Disease

The two main causes of chronic kidney disease are diabetes and high blood pressure, which are responsible for up to two-thirds of the cases. Diabetes happens when your blood sugar is too high, causing damage to many organs in your body, including the kidneys and heart, as well as blood vessels, nerves and eyes. High blood pressure, or hypertension, occurs when the pressure of your blood against the walls of your blood vessels increases. If uncontrolled, or poorly controlled, high blood pressure can be a leading cause of heart attacks, strokes and chronic kidney disease. Also, chronic kidney disease can cause high blood pressure.

Other conditions that affect the kidneys are:

  • Glomerulonephritis, a group of diseases that cause inflammation and damage to the kidney’s filtering units.
  •  Inherited diseases, such as polycystic kidney disease, which causes large cysts in the kidneys that damage the surrounding tissue
  • Repeated urinary infections.
  • Pregnancy problems. Sometimes a narrowing of the womb can occur that prevents normal outflow of urine causing it instead to flow back up to the kidney causing infections and kidney damage.
  •  Lupus and other immune system diseases
  • Obstructions caused by kidney stones, tumors or, in men, an enlarged prostate gland.

High risk groups include those with diabetes, hypertension and family history of kidney failure.  African Americans, Hispanics, Pacific Islanders, American Indians and senior citizens are at increased risk.

Before we get into the details of kidney disease and what to do if you have it, let us first discuss how to avoid it.  While there is no sure fire way to prevent kidney problems there are many very effective steps you can take because lifestyle can be a great contributor to the development of all diseases.

Avoiding Kidney Disease

national kidney foundation logoThe National Kidney Foundation has the following guidelines to reduce the risk of developing kidney disease:

  • Reduce sodium intake: Americans consume too much sodium (salt)
  • Limit red meat: Diets high in protein – especially those with animal protein – may harm the kidneys. Red meat is also high in saturated fat.
  • Avoid soda: Sugar-sweetened drinks, like sodas, are high in calories and contain no nutritious value. Additionally, colas have phosphorus additives which can damage kidneys.
  • Give up processed foods: Potato chips, crackers, cheese spreads, instant potato mix, and deli meats are all examples of processed foods that are high in phosphorus additives and sodium – both of which can have a damaging effect on the kidneys.
  • Reduce sugar intake: Consuming too much sugar can result in diabetes or obesity – both linked to kidney disease.
  • Sit less and stand more: Recent research has linked sitting for 8 hours or more a day with developing kidney disease.
  • Exercise and lose weight: Diabetes is responsible for 44 percent of all new cases of kidney failure. Obesity and Type 2 diabetes are on the rise and can often be treated and reversed.
  • Manage high blood pressure: Both considered silent killers, many people don’t realize high blood pressure and kidney disease are linked. Controlling blood pressure levels can prevent kidney damage and failure.
  • Avoid long term use of kidney-toxic drugs: Over-the-counter (OTC) pain medications, nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen brand names (Motrin, Advil, and Nuprin).
  • Get tested: Ask your doctor for an annual urine test to check for protein in the urine, one of the earliest signs of kidney disease, and a blood test for creatinine

But…there’s a whole lot more to preventing kidney disease.  The Correct Diet Can Help Avoid Kidney Disease  http://www.medicalnewstoday.com/articles/259203.php (See this link for the full story.)

Bad diet choices and habits like smoking and obesity are linked to ajkd logoan increased risk for kidney disease, suggests a new study published in the American Journal of Kidney Disease.

A group of investigators, led by Alex Chang, MD, of Johns Hopkins University, discovered that people with regular kidneys whose diet quality was bad – high in processed and red meats, sodium, and sugar-sweetened beverages, and low in fruit, nuts, legumes, whole grains, and low-fat dairy – were more likely to develop kidney disease.

Just one percent of people without unhealthy diet or lifestyle choices developed protein in their urine – an early sign of kidney damage. On the other hand, 13% of participants who had at least three unhealthy factors such as obesity, smoking, and poor diet developed protein in their urine.

Obese people, i.e. those with a body mass index (BMI) of at least 30, were twice as likely to develop kidney disease, the authors reported. A poor diet independently influenced risk for chronic kidney disease after adjusting for weight and other influential factors.

In total, those who ended up with kidney disease were more likely…

  • to be African American
  • to have high blood pressure
  • to have diabetes
  • to have a family history of kidney disease
  • have a higher intake of soft drinks, fast food, and red meat compared to those who did not have kidney disease.

How it Feels to Have Kidney Disease

Now let’s get to the disease itself. The medical profession can describe it in terms no one can understand but I prefer to hear from patients.  What does it feel like to have kidney disease, how does your body change?  That’s a tough question to answer because so many people have no symptoms or symptoms that are so mild they don’t notice them but we did find some clear, understandable and frightening explanations.

We are going to look at symptoms of kidney failure from two perspectives. First the little tell-tale signs that something might be amiss and secondly the more specific complaints as told by patients.  Fist the little signs that indicate you might have kidney disease but don’t diagnose yourself.  See your physician.  You might have kidney disease if you:

  • feel more tired and have less energy
  • have trouble concentrating
  • have a poor appetite
  • have trouble sleeping
  • have muscle cramping at night
  • have swollen feet and ankles
  • have puffiness around your eyes, especially in the morning
  • have dry, itchy skin
  • Need to urinate more often, especially at night

Now let’s look at more serious conditions. If you are feeling anything like any of the following people you probably should see your doctor as soon as possible.

  • “I feel like I have the flu and am cold most of the time and. When I take my temperature, it is normal. I feel sort of dizzy, have a loss of appetite, food doesn’t have any taste, I have shortness of breath, no energy, and am nauseous.  It’s pretty miserable.”
  • “When I first got sick I really thought it was a normal cold. I had a fever, was sneezing, runny nose etc. Then it got worse to where I was throwing up, had blood coming out in spits, vomit, urine, etc. Then it became really hard to breath and I couldn’t lay down anymore as it would cause me to suffocate. I ended up in the hospital where they told me both my kidneys failed and liquid was pushed up to my lungs which was causing me to suffocate. I don’t want to scare anyone but please learn from my mistake of not going to the hospital for about 3 weeks after I first got the cold like symptoms. Get a check up even if you think it is a cold!”
  • “My kidney failure was discovered by accident through routine blood work at the time of my yearly physical. The first red flag was a high potassium level on two different blood draws over a two month period of time. I had observed several symptoms too,  The first symptom strangely was an “itchy back,” another one was an “ill feeling” — not being very hungry – sweating — breathlessness — a rapid heart rate — and discomfort (pain) in the location of the left kidney. These “symptoms” did not appear all at once or I would have seen a doctor. I now know that all of these are symptoms of chronic kidney failure. It is vital to be informed and educated.” 
  •  “I was diagnosed about three years ago with stage 3 kidney failure. I had no signs that I was aware of as I also have congestive heart failure.  Now, I itch alll over my body, perspire excessively and have extreme pain in my back, neck,shoulders and legs, as well as increased ankle swelling.”
  • “I did not realize I had quit urinating until my husband and I went on a long road trip. I didn’t feel the need to stop to urinate at all. I paid no attention at the time but now I remember that I was very nauseous, vomiting, and had horrible leg cramps. On the third day I went to the ER and was admitted to the ICU. After five dialysis treatments I started to recover.   I now measure my output just to be sure.”

For the sake of education let’s assume you have been diagnosed with kidney disease. What are your options?  There really are only two.  1) you can choose to allow your medical team to treat it with medication and ultimately dialysis.  2) a kidney transplant but you must qualify and only a medical team at a transplant center can determine if you are a candidate for a transplant.

If Dialysis is Ordered

Chronic kidney disease continually gets worse and eventually leads to end-stage renal disease, also known as kidney failure.

\Your doctor might recommend you begin dialysis treatments once you reach the point where you have only 10 to 15 percent of kidney function left.

With kidney failure, the toxins and excess fluid that your kidneys should be releasing begin to build up in your body. People suffering from kidney failure begin dialysis to help their bodies remove these wastes, salts and fluid.

Two kinds of Dialysis

  1. Hemodialysis and
  2. Peritoneal dialysis.

Hemodialysis is typically performed at dialysis centers or hospitals but some clinics offer smaller devices for home use.

Hemodialysis, patients generally have an access point  in their arm to which the dialysis machine is connected.  On average It takes aobut four hours for the blood that is drawn from your body to be cleansed and returned.

Peritoneal dialysis is more likely to be done at home after you have a catheter placed in your stomach (a minor surgery).

There are two kinds of Peritoneal dialysis, 1) continuous ambulatory and 2) continuous cycling

Continuous cycling peritoneal dialysis is usually done at night. Before retiring you attach the dialysis machine tube to your catheter which pumps a solution into your stomach.  It stays there for a few hours so your stomach can act as a filter allowing waste and other fluids to pass through it into the solution.

Continuous ambulatory peritoneal dialysis is much different because you don’t need a  machine. You simply run dialysis solution into your abdomen through the catheter and after 4k to 6 hours drain it into a bag.  A physician can tell you how often during the day you need to do this

Risk Factors

There are several.  They include anemia, bone disease, high blood pressure and depression. Some patients on hemodialysis might have also have problems with low blood pressure.

Patients undergoing peritoneal dialysis are at risk of developing peritonitis which is an infection in the stomach lining. Your doctor will likely prescribe antibiotics to treat the problem.

 Got questions?  Many answers can be found here.

http://www.nwkidney.org/dialysis/startingOut/basic/faqs.html

 A Kidney Transplant

If it has been determined that a Kidney transplant is your only option this information may prove to be invaluable. 

KidneyBuzz.com encourages patients to stay as healthy as possible by managing stress, eating well, and staying active. It is important for patients to remain as well as possible during this time, so they are ready for kidney transplant surgery as soon as a donor organ becomes available. For patients who have a living organ donor, scheduling transplant surgery can take into account the health status of the recipient as well as other factors.

Manage your stress. Many patients constantly worry about their treatments, blood work results, future surgeries, etc. Education and support groups both online such as KidneyBuzz.com, and offline provide patients with tools and support to manage their stress and cope with the challenges associated with their condition. Recommended Reading: Will You be Ready when Your Time Comes for a Kidney Transplant? (this link and links below from KidneyBuzz)

There are other strategies that you can employ to expedite obtaining a Kidney Transplant including listing at more than one transplant center (Multi-Listing). Research has consistently shown that patients who are strategically Multiple Listed will greatly increase their chances of receiving a Kidney Transplant faster.   Nevertheless, only a mere 4.7% of individuals with CKD utilize the Multiple Listing technique.

KidneyBuzz Recommended Reading: “Ins-and -Outs” of Increasing your Chances of Getting a Kidney Faster

There are also website resources available that assist people with CKD to find Kidney Transplant Centers with the lowest average wait times that are the closest to where they live. These free user friendly website tools can be particularly helpful to people who are on a Kidney Transplant Waiting List in a high wait time area because it can significantly increase their access to  Kidney Transplant Centers options with far lower wait times. You can email KidneyBuzz.com at contact@kidneybuzz.com for more information and direct links to discussed sites.

Once you have determined the treatment track you will take the next logobig question most people have is, “How do I pay for the it?”  Well, if you have regular health insurance that might cover it.  If not the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) http://kidney.niddk.nih.gov/kudiseases/pubs/financialhelp/ offer this information”

In 1972, Congress passed legislation making people of any age with permanent kidney failure eligible for Medicare, a program that helps people age 65 or older and people with disabilities pay for medical care, usually up to 80 percent. The remaining 20 percent can still pose a significant financial burden on patients. Fortunately, other public and private resources can help. Anyone with permanent kidney failure who does not have adequate insurance coverage should seek the help of a certified or licensed social worker. Every dialysis and transplant center has a social worker who can help people with kidney failure locate and apply for financial assistance. Social workers who specialize in helping kidney patients are called nephrology social workers.

Patients can also enlist the assistance of the State Health Insurance Assistance Program (SHIP). The SHIP is a national program that provides free counseling and assistance to Medicare beneficiaries on a wide range of Medicare and supplemental insurance matters. Patients can find a state program by visiting shipnpr.shiptalk.org/shipprofile.aspx click to view disclaimer page.

Medicarecms logo

To qualify for Medicare on the basis of kidney failure, a person must require regular dialysis or have had a Medicare-covered kidney transplant and must have paid into Social Security through an employer-or be the child or spouse of someone who has or have worked under the Railroad Retirement Board, or as a government employee-or be the child or spouse of someone who has or already be receiving Social Security, Railroad Retirement, or Office of Personnel Management benefits.

The Original Medicare Plan has two parts: Part A is hospital insurance, and Part B is medical insurance. Part B covers most outpatient services, including kidney dialysis, doctors’ services, outpatient hospital services, and many other health services and supplies. While Part A has no premiums, most Part B services require premiums, deductibles, and coinsurance.

Some people who are not eligible for Medicare because they have not worked at a job that pays into Social Security may still be eligible to buy Medicare coverage by paying premiums for Part A.

For more information check with the NKUDIC (link posted above)

935503_10201217871274032_357839664_nJay Robare is a friend and a member of my Facebook group Organ Transplant Initiative.  He is the talent behind the design of the OTI logo.  Jay is legally blind and has been on the kidney transplant list for about four years.  He wrote this about two years ago when he lived in Fort Lauderdale, Florida.  He is now a resident of Philadelphia, Pennsylvania.  Here’s Jay’s story….he’s still waiting.

The Jay Robare Story

Waiting for a Kidney

By the time that I was approved for Medicare, I had gone through all my savings and my limited insurance coverage. I had to quit working because my endurance was gone and because I was not working, I could not afford my apartment anymore and I had to start living with others that helped me out. I lost all my furniture and most of my art equipment.

I finally got disability insurance and was qualified for Medicare but not Medicaid since I was making too much money from disability; I got enough to pay rent and had some money for paper products, which costs a lot. I have to dry my hands on paper towels to stay sterile.

I was blessed with $200 in food stamps last year but that has been decreased too; I am out of food by the third week of the month. I keep asking for rides to the various food banks but people are too busy. I am not the only one going through this; most people just can’t understand the magnitude of what we are going through in our lives and in our bodies. I know everyone is having problems for I hear that all the time but when I got sick and started working to get on the waiting list, all my doctors and nurses treated me like I was given a special gift which it is…the gift of life but many people would rather worry about their financial or relationship problem that they will outlive. We won’t outlive our problems, they are literally killing us.

****Editors note.  (When Jay lived in fort Lauderdale he was on Peritoneal Dialyisis…he is no longer but I included it because patient should know about it.)

I didn’t even talk about having to do dialysis every night. The type of dialysis that I do is called Peritoneal Dialysis where I store 2,500 milliliters of sugar saline solution for 2 and a half hour cycles 4 times which is all carbohydrates. I have gained 30 Lbs and I look very well fed; my fried Dirk said I looked like I had a beer belly…my last beer was a Heineken last Christmas. One nice thing about PD instead of hemo dialysis is that I have no liquid restraints. On hemo, I could only have 60 Oz a day or I would risk cramping and THAT was a bitch. Cramps formed in muscles that I thought I never had and the pain was so bad it made me yell out for Jesus…made my tech laugh at me.

Speaking of techs, I had clowns that would not listen to me and do the treatment their own way ending up hurting me. For you on Hemo, THIS IS YOUR TREATMENT AND YOUR BODY, don’t take any crap from these people; make sure that your nurse knows and the director knows that you do not want this person touching you again. Another thing that I like about PD is that it is robbing my body of potassium and this lets me eat things that hemo would never let me eat like bananas, mashed potatoes, spinach, hummus, vegetables and fruits. I do have to take something called a binder every time that I eat something. This medicine absorbs all the phosphorus in the food. The binder can be nasty at times, it is very dry and tastes like I am eating chalk. The chalk does a good job but sometimes it is difficult to take. The meds are a chewable but I think they are coming out with a powder soon.

Another med that I have to take because of PD and a bad parathyroid, caused by ESKD is a drug called Zemplar and Sensipar. Both keep my calcium land my PTH levels down. The only problem is that Sensipar has made me nauseous for the last 4 years; I have been throwing up every time I took this drug for 7-8 months. I guess my body has had enough. The doctors, dietitians and I have been playing games for years. I have finally decided to have a perthyroidectomy. After this surgery, I will need to start taking calcium supplements, including eating more pizza and lasagna…LOL I

I get extremely tired sometimes during the day from either walking to the bus stop and going to Publix to get some noodles or walking from the bus stop to my Davita dialysis clinic to get labs done every Monday or Tuesday; I need to send a vile of blood to my transplant hospital every week so they can keep an eye on my health and changes in my DNA.

*** Editors Note (Jay is now living in Philadelphia and is on hemodialysis which limits his liquid intake.  He is desperately trying to find a living donor.  This journey has been very hard on Jay yet somehow he manages to keep his spirits up.

The Kidney Transplant

kidneysEveryone has two kidneys, each the size of a fist and they have a very important job to do. They filter waste and remove extra water from your blood to make urine.  But…there’s more.  Your kidneys also control your blood pressure and make hormones that your body needs to stay healthy. 

During a kidney transplant

Kidney transplants are performed with general anesthesia, so you’re not aware during the procedure. The surgical team monitors your heart rate, blood pressure and blood oxygen level throughout the procedure.

During the surgery:

  • The surgeon makes an incision and places the new kidnKidney transplantey in your lower abdomen. Unless your own kidneys are causing complications such as high blood pressure or infection, they are left in place.
  • The blood vessels of the new kidney are attached to blood vessels in the lower part of your abdomen, just above one of your legs.
  • The new kidney’s ureter — the tube that links the kidney to the bladder — is connected to your bladder.

Kidney transplant surgery usually lasts about three to four hours.

After a kidney transplant

After your kidney transplant, you can expect to:

  1. Spend several days to a week in the hospital. Doctors and nurses monitor your condition in the hospital’s transplant recovery area to watch for signs of complications. Your new kidney will make urine like your own kidneys did when they were healthy. Often this starts immediately. In other cases it takes several days. Expect soreness or pain around the incision site while you’re healing.
  2. Have frequent checkups as you continue recovering. After you leave the hospital, close monitoring is necessary for a few weeks. Your transplant team will develop a checkup schedule for you. During this time, if you live in another town, you may need to make arrangements to stay close to the transplant center.
  3. Take medications the rest of your life. You’ll take a number of medications after your kidney transplant. Drugs called immunosuppressants help keep your immune system from attacking your new kidney. Additional drugs help reduce the risk of other complications, such as infection, after your transplant.]

http://www.mayoclinic.org/kidney-transplant/kidney-transplant-procedure.html

The Future

What does the future hold?  It is easy to speculate about what the future holds and absolutely impossible to be accurate.  We just don’t know.  Is there promise? Yes! There are many promising developments taking place in laboratories around the world every day.  We won’t go in to all of them because if history is any indicator most of those experiments will fail.  There are some, though, that hold some promise at least for now…like this one.

Intravenous Kidney Cell Transplant Experiments Raise Hope for Future Human Kidney Failure Treatments

May 31, 2012 — Indiana University School of Medicine scientists have successfully transplanted primary kidney cells intravenously to treat renal failure in rats, pointing the way to a possible future alternative to kidney transplants and expensive dialysis treatments in humans.

The researchers, Katherine J. Kelly, M.D., associate professor of medicine, and Jesus Dominguez, M.D., professor of medicine, genetically modified the cells in the laboratory to produce a protein — called SAA — that plays an important role in renal cell growth, embryonic kidney development and kidney regeneration after an injury. Modified cells found their way to the appropriate locations of the damaged kidneys, resulting in regeneration of tissue and improved function in the kidney.

The researchers’ work has been accepted for publication in the American Journal of Physiology — Renal Physiology, which published an advance online version of the paper on May 16.  You can read more here http://www.sciencedaily.com/releases/2012/05/120531135645.htm

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Bob_Aronson at Mayo Jax tight shot 2008-01-30DJH--02Bob Aronson is a heart transplant recipient.  He got his new heart on August 21,2007 at the Mayo Clinic in Jacksonville, Florida where he now lives with wife Robin and their two dogs Reilly, a soft coated Wheaten, and Ziggy a Mini Schnauzer.

For some 25 years before his transplant Bob was an international communications consultant and owner of the Aronson Partnership which became the  Aronson Communications Group after the surgery.  Today he is semi retired and also assists his artist wife Robin with her Jinglers Jewelry art show business.

Prior to starting his consulting firm in the 1980s he served as the Communications Director for a Minnesota Governor;  was the first Anchor of Morning Edition on the Minnesota Public Radio Network; worked as a journalist at several Midwest broadcast facilities and from 1965 to 1974 was one of the first radio talk show hosts in the country.   

Aronson founded Bob’s Newheart and Facebook’s Organ Transplant Initiative (OTI) on November 3, 2007.  OTI is a 3,000 member transplant patient, recipient, caregiver and donor/donor family support and education group. 

Readers are welcome to Join OTI with the only requirement being that you support our mission which can be found in the “About” section of OTI.  We seek to grow our membership because by so doing will have more influence with decision makers as we pursue those issues which would most benefit our members.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

Thank you for reading our Bob’s Newheart blogs and please leave a comment or contact Bob directly at bob@baronson.org.  We intend to continue to expand the number of issues we cover and the availability of information to the public.  You’ll find scores of other posts on Bob’s Newheart, just check the index for topics, click and read.

If you are an organ donor we thank you.  If not you can become one by going to www.donatelife.net it only takes a few minutes.  Then, tell your family what you have done so there is no confusion later.

 

Thanksgiving in October. An Inspirational Organ Donation Story


pacemaker-cartoon.1.cartoon31_8775 By

Bob Aronson

With Chuck Price

We all know that life ends.  Most of us pretty much ignore that reality.  Thinking about one’s demise is not pleasant and many think that death is in the distant future anyway so why even consider it.  I have long believed that one of the reasons organ donation rates are so low (only 40 percent of Americans are registered donors) is that to be a donor one has to address one’s own death and people don’t like doing that.  It seems, too, that the younger you are the more invincible you feel

People on the national organ transplant list, though, are forced to think about death regardless of age because they have been told they are dying. You can’t get on the list unless it has been determined that only an organ transplant can save your life.

chuck prior to surgery 244-year-old Chuck Price was one of those people.  A mere six months ago he was very near death. Desperate to live and fighting with every fiber of his being he knew his chances of spending much more time with his wife and sons was diminishing rapidly. Price’ lungs were shutting down due to a disease you probably never heard of, Alpha 1 Anti Trypsin Deficiency. Only a double lung transplant could save his life and they are rare. This genetic (inherited) condition is passed from parents to their children.  Alpha-1 may result in serious lung disease in adults and/or liver disease at any age and Chuck Price was unable to escape it.  He has no memory of ever breathing like a normal person. He can only remember a constant struggle for air that has been both debilitating and discouraging.

There’s a lot more to this story but I’m going to stop here for just a few moments and tell you the Chuck Price story in an upside down fashion because that’s the way I learned about this inspirational, incredible and compassionate man.

It all began for me after Chuck got a double lung transplant and thenOTI logo about three weeks ago became a member of my 3,000 member Facebook group, Organ Transplant Initiative (OTI).  One of his first posts caught the attention of a lot of other members.  It came from the heart and it was powerful and moving.  His message was aimed at everyone and no one but it had special meaning for transplant patients, recipients and donors.  Here’s what Chuck wrote on his I-phone, then posted on OTI as he reflected on being able to breathe and live again.

Cuck Price prior to surgery“About 20 weeks ago I was sitting at UVA (University of Virgina) with 12-14% lung function, trying to keep a smile for the sake of my family, but believing that it was another dry run.

20 weeks + 15 minutes ago the flurry around me accelerated to a fervor that turned me to tears, as I feared I would die and never see my wife and kids again

20 weeks + 45 minutes ago I was rushed to a shower, signing reams of paperwork, getting IV and ports installed and told we were “live”, and I cried harder, my wife and I thought and prayed for the angel who was giving me a shot, and for their family.

I tried to picture my boys and burn them into my memory, as I feared it may be my last thought…I signed the last document, a confirmation, to donate my own organs should the worse come to bear.

20 weeks + 90 minutes ago, I was wheeled away adjusting my view tosurgical suite see my wife  for as long as the hall, would allow. I was wheeled into a room, filled with what seemed like futuristic machines and devices, and being attached to such.

My last words to no one and to everyone, “I’ve got 2 boys who don’t know how to be men yet people, and God let someone here be a Cowboy fan.”

20 weeks + 2 hours ago someone injected me with something that calmed me and made me very warm, a mask was placed over my face and I pictured my boys…the light faded to black…

just out of surgery 320 WEEKS LATER, I’m a different man, my lung function is above 100 % in all categories, I’m prepping for my first 5k, I’ve returned to work, started a donate life/alpha 1 awareness foundation…and I’m here to teach my boys to be proper men.

20 WEEKS LATER, thank you God, Thank You my Donor angel, for everything I’m able to experience. Thank you for the good and even the bad days, thank you for the recovery, thank you for the strength when I lack it. Just thank you.”

Then articulating his feelings further he added these heartfelt words as advice to other transplant recipients:

“When you get the call (saying there’s an organ available for you), put it in God’s hands and never waste the chance to thank your donor and donors everywhere. Be humble because no matter what pain you went through to get there, you deserve this no more than others waiting.  You are very lucky to receive such an inexpressible gift. When you heal give back…you’re not an inspiration, you’re not special, you’re not a chosen saint, you’re the recipient of a life-saving organ from another human being.  It is the most precious, special gift anyone of us could imagine….and… YOU OWE!

From myself and all like myself…THANK YOU!”

When I read the post I knew I had to have “The rest of the story,” as newsman Paul Harvey used to say.  I needed to know what brought him to the point where he tapped out that inspiring note on his I-phone so I contacted Chuck and found that he is taking full advantage of his new life.

His youthful exuberance is exciting and contagious.  He sounds like a man who has a thousand things to do but only ten minutes to complete them.  Ideas flow from him like oil from a new gusher and all of it, all of it is based on gratitude aimed at his unknown donor.

I will relate more about Chuck’s plans his feelings and his gratitude but I think it is important to add some perspective here before we do.  First, if you are not an organ donor and want to be just click on this link http://www.donatelife.net and you can register right now.  It only takes seconds.

There are about 120,000 people on the U.S. organ transplant list and only about 28,000 transplants are done each year.  At any given time there are about 1,500 people on the Lung transplant waiting list.  The wait time for lungs is from four to five months.  Unfortunately only one in 5 donors has lungs suitable for transplant. That means that a lot of people die waiting.

For those unfamiliar with the organ transplant process, you can only be added to the waiting list if an organ transplant center committee certifies you as being in the end stage of a disease and that there is nothing more conventional medicine can do to save or prolong your life. In other words you have been told that you are dying.  That news is not only depressing it is irritating and frustrating.  In Chuck Price’ case it was doubly frustrating because he is a “can-do” kind of guy and with Alpha 1 there was nothing he could do — but wait.

As his time on the list lengthened, Chuck believed he might be one of the unlucky ones for whom there was no life-saving organ.  The thought that he would leave behind his lovely wife Lisa and his two sons, 13-year-old Chase and 20-year-old Skyler tore his heart out.  At 44 Chuck had hoped to have a long life ahead of him but now, struggling for air with each breath his time was dwindling to days, maybe hours — and he knew it.

Not being able to breathe is terrifying.  I have Chronic Obstructive Pulmonary Disease (COPD) and while nowhere near as serious as what Chuck experienced I know what it is like to struggle for every breath.  Any amount of exertion can cause breathing to become even more labored and with that difficulty often comes panic…which makes it even worse.  Add difficult breathing to knowing that you are dying and you can imagine Chuck’s state of mind.

If you want to get a hint as to what Chuck and those like him experience with a disease like Alpha 1 take a standard drinking straw between your lips, block your nose and breathe through the straw.  drimped drinking strawNow crimp the straw…and try to breathe.  That’s what Chuck felt like 24 hours a day for almost all of his 44 years.

As a heart transplant recipient I and others with new organs can identify with the emotional roller coaster ride Chuck was on.  Knowing you are dying and that chances of getting a transplant are very slim leaves you with a burning sensation in your chest and gut not unlike acid reflux only there is no quick Pepto Bismol or Zantac relief for it.  The burning never goes away and just when you think it has reached its zenith it gets worse.

The sinking feeling burns through your heart and into your soul leaving you with a smoldering desperation that cannot be defined or explained.  There simply are no words to describe the emotional agony.   It is not so much the fear of dying, although that’s certainly part of it but rather a deep concern for the well-being of loved ones once you are gone.  You desperately want to show a brave face but your insides are mush and you want to scream at the top of your lungs that this just isn’t fair.  When you hug your wife or kids you don’t want to let go.  You almost feel as though dying is an abdication of responsibility to your family and you are wracked with guilt and remorse and even anger…sometimes rage.

Not only did Chuck have a family to which he felt obligated but he was the owner and President of American Weld Worx, an industrial service contractor that serves mining and heavy industrial manufacturing businesses.  So on top of his family concerns were those of his business, his employees and customers.  Chuck was carrying an immense emotional load.

As of six months ago all of that changed because of a generous anonymous stranger.  Chuck Price got his new lungs then.  He still worries about his business and his family, but now that he can breathe he can act on his concerns and fix them.  He is no longer helpless and that makes him very happy indeed.

Price has lots of goals and apparently the energy he’ll need to make them real.  One of his plans has him forming a foundation that will help transplant patients and he talks about it with an excitement that causes excitement.

“I named our foundation Chuckies Second Wind because I can breathe again but I should have named it Chuckies First wind because I have absolutely no memory of ever breathing like this.  I would like to say I breathe like a normal person, but that wouldn’t be true, our Lord and my Donor Angel saw fit to take me from a lung function of 12-14% to well above 100% in all measurable categories.  My Pulmonologist says my lung function is that of a 22-year-old competitive swimmer.  I can’t help but be giddy with happiness, and give daily thanks for the “second wind” I’ve been given.  None of this was possible without the selfless gift, given by my Donor Angel.”

Price’s plans for the foundation are simple.

“My overall goal is to help others receive the same gift that I received regardless of financial standing, I hope the Affordable Care Act (Obamacare) makes that dream come true but that remains to be seen.  Short term  I hope to stimulate people to become donors and reduce the gap between supply and demand. 

Additionally I plan to set up two scholarships.  “The Donor Angel scholarship will be the original and when I discover the name of my donor we will have a second one named after him or her.  I know I’m sounding like an over-achiever here but I think Robert Browning best captured my philosophy, “Ah, but a man’s reach should exceed his grasp, Or what’s a heaven for?”

One might read what I have written and what Chuck Price said and ask, “Is this real, is he really that grateful?”  The answer is, “Yes He is that grateful.”  I asked him what if felt like to take that first breath with new lungs.  Word for word, here’s his response.  Again, Chuck Price’ own words:

“I was on a ventilator and frightened because I had never been on one before.  Waking up to find out one in your mouth and lungs and that you can’t speak is scary.  I had to communicate with family by handwritten notes. 

About 40 minutes after awakening they told me I was over breathing and the vent would have to come out.  That scared me, too.  I just knew I was going to die when it was removed and I wrote a note to my wife and my dad begging them to prevent the procedure. Of course the doctors knew best and it was withdrawn – and I didn’t die and then—-I took my first breath, the first real breath in my entire life.  Wow!  I streamed tears, I can’t remember ever taking a breath like that so I took another and filled my new lungs to the hilt.  Nothing in life had ever felt that good.  I could find no words so I just grasped my wife’s hand and cried. 

An hour after those absolutely delicious breaths they also removed the oxygen and the saturation meter they put on your finger showed it was 98-99 % which amazed everyone — the docs included.  I was in a chair and walking very soon after.”

You’ve heard the commercials on TV that pitch some amazing deal and then add, “But wait, there’s more!”  Well, there’s more to the Chuck Price story.  Not only is he rebuilding his company, establishing a foundation and setting up two scholarships he plans on running a 5K. And, remember this.  It’s only about six months since his double lung transplant.  Price talked about the 5K race.

foot race“The 5k is called the Apple Trample 5k, it’s a yearly event in a much larger event, The Apple Harvest Festival held in Martinsburg WV.  We will not only be competing but will have a booth during the race signing up as many Organ donors as humanly possible.  We will also be raising awareness for both organ awareness and Alpha 1 Anti Trypsin Deficiency.”

Thee you have it, the Chuck Price story.  If his enthusiasm doesn’t affect you then it is quite likely you are a Vulcan, you know, the pointy eared people who are totally devoid of emotion as represented by Spock on Star Trek.

God bless and keep you Chuck.  You’ve got your work cut out for you and with your attitude we know you will accomplish everything you set out to do and more.  If not, Robert Browning will be very disappointed.

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Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative 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.

Please view our new music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed. 

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just email me bob@baronson.org and ask for a copy of “Life, Pass it on.“  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. 

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Post Transplant Depression. You Don’t Have To Feel That Way!


depression cartoon

By Bob Aronson

The very first thing you should know is that depression is common after an organ transplant – very common and no one is immune.  You should also know that there is help available.  You don’t have to feel that way!   I know because I suffer from it.  As of this writing I am six years post transplant and my depression is under control because I found help but it still rears its ugly head from time to time.

For two years following my 2007 heart transplant I wallowed in emotional pain, I felt useless, worthless, without value, guilty and empty.  I looked at myself as one might look at a car you’ve owned for many years.  It was useful and desirable once but now it is old and things keep going wrong and need fixing.   To keep it running just costs too much and sad as it is we are probably better off without it.  It is costing more than it is worth.   That’s pretty much how I felt about myself.

Depression, I think, is compounded by the patient’s inner battle between the armies of logical thought and those of emotion.  Your logical mind asks, “How can you be depressed when you just got a new heart that saved your life?”   But, your emotions say, “I don’t know but I feel awful and sometimes I wish I was dead.”  That is a horrible battle to have to fight alone…but you don’t have to, there’s help and you can win.

For a quarter of a century 228642_8263187420_1503_nI had been a communications consultant with a stable of highly respected internationally known clients many of which were based in Minnesota where I lived.  I needed a heart transplant and discovered that I stood a better chance of getting one if I moved to Jacksonville, Florida.  I learned that the Mayo Clinic there had an excellent record of obtaining and transplanting organs and data indicated I stood a better chance of getting a heart there than in Minnesota.  Furthermore, Jacksonville was my wife Robin’s home town and her son, parents and extended family lived there.  It made sense to move…but it also meant giving up a lion’s share of my business.

To shorten a long story we moved to Jacksonville and I got my new heart after only a 13 day wait but recovery took longer than expected.  There were complications…many of them. I got pneumonia, suffered two torn rotator cuffs which resulted in an extended period of excruciating pain and I became very, very depressed.  I could hardly function day to day never mind think of working again.  But, because I could not work I felt guilty and my depression got worse.

I sat in a dark corner of our family room every day watching the TV’s flickering light change the shadows in the room.  The set was on but rarely was I involved in what was playing…my mind was somewhere else.  I felt totally and utterly useless and guilty that I had taken an organ but couldn’t do anything to show that I was worthy of it. I felt that way for two years.  Each day I went through the motions of living, trying to be useful, trying to help my wife with her fledgling business but feeling totally inadequate and unnecessary.

You’ve seen the Roadrunner TV cartoon I’m sure where the poor coyote just can’t win against his fleet footed foe.  wiley hanging from a limbOften the canine victim is seen hanging by one hand from a branch on the side of a mountain…then the branch gives way and he falls the 5,000 feet  to the ground below which flattens him.  I felt like Wylie, like I was hanging from that branch waiting to fall and sometimes I wished the branch would break.

Two things kept me from giving up,  Robin’s constant encouragement and this blog along with my Facebook Group Organ Transplant Initiative (OTI).  Both were started two months after my transplant at the urging of my friends at Mayo.  These social media activities weren’t meant to be anti depressants but they turned out to be just that.   Thank God for both of them.

Then, one day, it occurred to me that maybe, just maybe I could get help and for the first time I mentioned depression as a problem to my Mayo Clinic transplant coordinator.  With virtually no delay I was seen by a physician who determined that anti depressants might help.  There were several false starts before we found one that worked but we did

At about the same time Robin asked me if I could make some wood fixtures for her art show booth; shelving, pedestals and other display items.  I soon found I loved woodwork and a new hobby was born, one that ensured my not returning to that dark corner in which I used to reside.

As I did the research for this blog I found a good deal of information about depression,  most of it clinical in nature and not real helpful.  From personal experience I know that fighting depression isn’t easy.  I know that it can last a long time, it can take even more time to find the right solution and sometime the solutions have a short life and the depression returns which forces you to find another solution.   It is a never ending battle but oh so worth it.

In a document titled “Issues for Today’s transplant Patients….A guide” published by the National Kidney Foundation (NKF) http://www.kidney.org/transplantation/transAction/pdf/UnderstandingDepression.pdf   there is an excellent section on post transplant depression, “Understanding Depression” I won’t re-print all of it but here’s some of it.

NKF LOGL

Depression is extremely common in the United States, and it can have a unique impact on transplant recipients. Practically every transplant recipient has likely felt—or fought off—depression at some time or another.

 Living with a new organ has daily challenges. These include medical bills and getting used to a new body. Some transplant recipients may also feel they are burdening their loved ones with constant doctors’ visits and a general need for extra help. All of this comes on top of the trials and tribulations that arise for everyone, transplant recipient or not.

It’s normal to have a range of feelings after a transplant.  We at the NKF believe that depression is one of the biggest issues people face, and something a lot of health care workers ignore.  Research shows that, in any given year, almost 10 percent of theU.S. population is depressed. That’s 19 million adults, with and without transplants.  And in people with chronic illness, the incidence of depression is much higher . Some research suggests that up to 25 percent of people with illnesses become depressed at some point in their lives. So, if you are a transplant recipient and you feel depressed, you are definitely not alone. 

Depression is different. It’s not just a bad mood, which is something everybody feels. Being depressed means that people feel at least five symptoms of depression for two weeks or longer. A bad mood should only last a couple of days. Depression is also more intense than a bad mood, even how the body feels.

 Nine symptoms of depression:

  1. Feeling depressed for most of the day, almost every day
  2. Lack of enjoyment of activities you once enjoyed, such as going to work or visiting friends.
  3. Weight changes (gaining or losing).
  4. Sleep problems (too much or too little).
  5. Feeling restless.
  6. Lacking energy, feeling easily fatigued.
  7. Feeling worthless or guilty.
  8. Trouble concentrating.
  9. Frequent thoughts of suicide.

 Remember that people have to have at least five of these nine symptoms for at least two weeks before doctors will diagnose depression. This is to make sure that people who have bad days here and there are not misdiagnosed.

The stress of having a transplant can trigger depression.  Having a transplant is a life-altering experience. The range of emotions people feel as a result of the procedure can definitely trigger depression in those who are susceptible to it.   It can be incredibly difficult for people to accept that one of the organs they were born with no longer works. For many, organ failure can feel like a profound loss. Some really grieve over it, which is totally under-standable. Unfortunately, this grief can also lead to depression.

 Having a transplant can create another loss, by changing recipients’ lives in an irreversible way. They may grieve that they can no longer lead the same life as before, now having to rely on doctors and medications to stay well. That can be hard to accept.

 Some recipients may also find it hard to accept that they are more dependent on their families. They may feel like their illness disrupts their families’ lives, and they are dependent on them emotionally and sometimes financially.

For recipients who are used to being the sole providers for their families, that can be really tough.  Financially, many transplant recipients also worry about their futures and how to afford the medicines they’ll need for the rest of their lives.  People with kidney transplants often worry about their health insurance,   knowing that they lose Medicare after three years.   

 Ok, all of that explanation makes a lot of sense but if you are depressed what can you do about it?  There’s much that can be done and you can start by talking to your transplant coordinator.  You can be sure they’ll have some resources for you to investigate or they can arrange for you for appointments.

While treatments abound there are two that are most common.  They are talk therapy and medication.  The most common type of therapy cognitive behavior therapy,  or CBT.  A highly skilled therapist can help you correct the negative thought patterns behind your depression. For instance, if people are constantly feeling hopeless, or that there’s no point in living, There is also a behavioral aspect to cognitive behavior therapy.  It focuses on how helping you avoid behaviors that cause or invite depression…behaviors like staying in bed all day or avoiding activities that had been enjoyable.  This kind of therapy can be done in a one on one or group setting, whichever makes you more comfortable and is most effective.

Another form of therapy is medication.  Sometimes both therapies are applied simultaneously but experts in depression can advise you best on when that is appropriate.

In my case it was medication that worked.  But it took time, there were months of trial and error.  It usually takes four to six weeks for an anti depression medication to work.  Sometimes it did but only for a short while and on other occasions there was no effect at all and we’d have to start all over again.  Different people react differently to the same medication.  What may work for your neighbor may not work for you at all but withy patience and the aid of a professional it is likely you will find the right one.

A word of caution: AVOID ST. JOHN’S WORT

st. John's wort

A lot of people use herbal medicines to treat a variety of conditions. One very popular herbal medicine is St. John’s Wort which has achieved some popularity in treating depression.  Transplant patients should avoid using it because medical evidence clearly indicates that St. John’s Wort interferes with other drugs like Cyclosporin, which people take to prevent transplant rejection.  There is documented evidence that some transplant recipients have lost their organs after taking St. John’s Wort.

Still another way to address depression is activity, a hobby, a business, a project.  The combination of medication and activity is what got me out of depression and keeps me there.  I rarely sit still and when I do it’s because I’m exhausted from all the activity.   I will be writing more about activities but woodwork, music, art, nature studies or astronomy can be of immense help in chasing away your demons.  There’s one for you…you just have to find it.

One way of beating depression is…not to get it.  Not long ago CBS TV news did an interesting story on the subject called, “Depression: Ten Traps to Avoid”  You can watch it on this link…or read it below.

http://www.cbsnews.com/2300-204_162-10004447.html

Clinical depression is a devastating illness, and profound sadness is just the beginning. Depression can rob people of their energy, memory, concentration, sex drive, interest in usual activities – and in severe cases, even the will to live. Seventy million Americans will be afflicted at some point.

Dr. Stephen Ilardi, author of “The Depression Cure,” has identified several things that can make depression worse.

Depression is a serious medical condition and should be treated by a doctor or licensed therapist.

Trap 1: Being a Couch Potato

couch potato

When you’re feeling down, it’s tempting to hole up in your bed or on the couch. Yet exercise –

Even moderate activity like brisk walking – has been shown to be at least as effective against depression as antidepressant medication. It works by boosting the activity of the “feel-good” neurochemicals dopamine and serotonin.

For an “antidepressant dose” of exercise, try at least 40 minutes of brisk walking or other aerobic activity three times a week.

Trap 2: Not Eating “Brain Food”

junk food

Omega-3 fats are key building blocks of brain tissue. But the body can’t make omega-3s; they have to come from our diets. Unfortunately, most Americans don’t consume nearly enough Omega-3s, and a deficiency leaves the brain vulnerable to depression. Omega-3s are found in wild game, cold-water fish and other seafood, but the most convenient source is a fish oil supplement. Ask your doctor about taking a daily dose of 1,000 mg of EPA, the most anti-inflammatory form of omega-3.

Trap 3: Avoiding Sunlight

alone in the dark

Sunlight exposure is a natural mood booster. It triggers the brain’s production of serotonin, decreasing anxiety and giving a sense of well-being. Sunlight also helps reset the body clock each day, keeping sleep and other biological rhythms in sync.

During the short, cold, cloudy days of winter, an artificial light box can substitute effectively for missing sunlight. In fact, 30 minutes in front of a bright light box each day can help drive away the winter blues.

Trap 4: Not Getting Enough Vitamin D

vitamin D from the sun

Most people know vitamin D is needed to build strong bones. But it’s also essential for brain health. Unfortunately, more than 80 percent of Americans are vitamin D deficient. From March through October, midday sunlight exposure stimulates vitamin D production in the skin – experts advise five to 15 minutes of daily exposure (without sunscreen). For the rest of the year, ask your doctor about taking a vitamin D supplement.

Trap 5: Having Poor Sleep Habits

bad sleep habit

Chronic sleep deprivation is a major trigger of clinical depression, and many Americans fail to get the recommended seven to eight hours a night. How can you get better sleep?

Use the bed only for sleep and sex – not for watching TV, reading, or using a laptop. Turn in for bed and get up at the same time each day. Avoid caffeine and other stimulants after midday. Finally, turn off all overhead lights

Trap 6: Avoiding Friends and Family

depressed person

When life becomes stressful, people often cut themselves off from others. That’s exactly the wrong thing to do, as research has shown that contact with supportive friends and family members can dramatically cut the risk of depression. Proximity to those who care about us actually changes our brain chemistry, slamming the brakes on the brain’s runaway stress circuits.

Trap 7: Mulling Things Over

mulling

When we’re depressed or anxious, we’re prone to dwelling at length on negative thoughts – rehashing themes of rejection, loss, failure, and threat, often for hours on end. Such rumination on negative thoughts is a major trigger for depression – and taking steps to avoid rumination has proven to be highly effective against depression.

How can you avoid rumination? Redirect attention away from your thoughts and toward interaction with others, or shift your focus to an absorbing activity. Alternatively, spend 10 minutes writing down the troubling thoughts, as a prelude to walking away from them.

Trap 8: Running with the Wrong Crowd

bad person

Scientists have discovered that moods are highly contagious: we “catch” them from the people around us, the result of specialized mirror neurons in the brain. If you’re feeling blue, spending time with upbeat, optimistic people might help you “light up” your brain’s positive emotion circuits.

Trap 9: Eating Sugar and Simple Carbs

sugar donuts

Researchers now know that a depressed brain is an inflamed brain. And what we eat largely determines our level of inflammation. Sugar and simple carbs are highly inflammatory: they’re best consumed sparingly, if at all.

In contrast, colorful fruits and veggies are chockablock with natural antioxidants. fruit and veggie plateEating them can protect the body’s omega-3s, providing yet another nice antidepressant boost.

Trap 10: Failing to Get Help

hopelessness

Depression can be a life-threatening illness, and it’s not one you should try to “tough out” or battle on your own. People experiencing depression can benefit from the guidance of a trained behavior therapist to help them put into action depression-fighting strategies like exercise, sunlight exposure, omega-3 supplementation, anti-ruminative activity, enhanced social connection, and healthy sleep habits.

We hope this blog has helped.  If you feel depressed or even if you are not sure talk to your transplant coordinator or any mental health professional. There is help. You don’t have to feel the way you do.

                                                                    

Bob informal 3

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 3,000 member Organ Transplant Initiative 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.

Please view our music video “Dawn Anita The Gift of Life” on YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs.  This video is free to anyone who wants to use it and no permission is needed.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. JAgain, write to me and ask for “Life Pass It On.”  I will email it to you immediately.  This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound.  If you decide to use the show I will  also send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and I will send the show and book ASAP.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative  (OTI).  The more members we get the greater our clout with decision makers.

En Espanol

Bob Aronson de Newheart de Bob es un centro receptor de trasplante 2007, el fundador de la Iniciativa de Facebook cerca de 3.000 miembros de trasplantes de órganos y el autor de la mayoría de estos blogs de donación / trasplante.

Usted puede dejar un comentario en el espacio proporcionado o por correo electrónico a sus pensamientos a mí en bob@baronson.org. Y – por favor difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si se convence a una persona para ser un donante de órganos y tejidos puede salvar o positivamente afectará a más de 60 vidas. Algunas de esas vidas puede haber gente que conoces y amas.

Por favor, vea nuestro video musical “Dawn Anita The Gift of Life” en YouTube https://www.youtube.com/watch?v=eYFFJoHJwHs. Este video es libre para cualquier persona que quiera usarlo y no se necesita permiso.

Si quieres correr la voz personal sobre la donación de órganos, tenemos otra presentación de PowerPoint para su uso gratuito y sin permiso. JAgain, escribir a mí y pedir “Life Pass It On.” Voy a enviar por correo electrónico a usted inmediatamente Esto no es un espectáculo independiente,. Necesita un presentador, pero es producido profesionalmente y objetivamente sonido Si usted decide utilizar el archivo. demuestro que también le enviará una copia gratuita de mi libro electrónico, Cómo obtener un Standing” O “que le ayudará con habilidades de presentación. Sólo escribo bob@baronson.org y enviaré el programa y el libro lo antes posible.

Además … hay más información sobre este sitio de blogs de otros temas de donación / trasplante. Además, nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos (OTI). Cuantos más miembros que tienen la mayor influencia en nuestra toma de decisiones.

Save Lives Now — Extend Kidney Anti-Rejection Drug Coverage


(At the end of this blog you will find a sample letter and links to your congressional and senate representatives.)

 

If someone told you that your government was willing to spend about $650,000 to save from $17,000 to $30,000 a year would you be surprised? 

Well I’m the someone, and I’m telling you that what I have described is absolutely true.  When your congress passed the End Stage Renal Disease (ESRD) law in 1972 then expanded Medicare to cover kidney transplants they bowed to pressure from the dialysis industry and limited anti-rejection medicine coverage to 36 months post-kidney transplant which resulted in the incredible expense I just described.

We can change that by putting some pressure on our elected officials to support a bill that ends this insanity.  I’ll give details in a bit, but first some medical information.

The human immune system is a marvelous mechanism that immediately attacks any foreign body it detects with its full force and fury.

A transplanted organ is a foreign object so the immune system makes every attempt to destroy it, not knowing that destroying the organ will kill the human. 

Enter anti-rejection drugs.  These powerful, expensive drugs suppress the immune system so that a transplanted organ can not only survive but will extend the life of the recipient.  The downside is that transplant patients are more susceptible to diseases because of their suppressed immune system.  Without anti-rejection drugs, though, the immune system will win and the person will die.

The U.S. Congress knew that when they expanded Medicare coverage for kidney transplants.  The law saved a lot of lives but it contains one very strange element.  It only allows Medicare to pay for anti-rejection drugs for 36 months.  After that the recipient is on the hook for from $17,000 to around $30,000 a year these very special drugs. Many patients have found that at the end of the 36 month period they simply couldn’t afford the expense and either cut back on the medication or quit taking it and went into rejection

Strangely, if the patient seeks medical help to stop the rejection, Medicare will leap back into action to rescue the patient that congressionally mandated policies put at risk and they will pay for hospitalization to stabilize the person and dialysis to keep them alive until they can get another Medicare paid transplant.  So let’s do some math, ignoring the cost of the initial transplant and the anti-rejection drugs (about $300,000).

Stabilize patient in hospital (estimate)………………….$50,000

Dialysis during 3-5 year wait for kidney…$216,000 to $360,000

Second transplant ………………………………………..$262,000

One patient gets two transplants meaning it’s entirely possible that another patient won’t get one.  Cost…incalculable.

Total: About $600,000 spent to save the $17,000 to $30,000 cost of the initial anti-rejection drugs.

The last time this issue came before congress was in 2009 and  opposition to expanding anti-rejection coverage came from a group calling itself the  Kidney Care Partners coalition which said “the kidney care community strongly objects” to the proposed changes. Oddly one of the organizations opposing this move was The National Kidney Foundation which was joined by dialysis providers, drug companies and nephrologists.

To pay for the expanded coverage, House Democrats had proposed setting a flat fee for dialysis treatments and related medications that some providers say would not cover costs. The Congressional Budget Office has calculated that the package would save the government $100 million over the next 10 years.

Dialysis providers argue that the bundled-payment mechanism may force some clinics to close. “We believe that the amendment as proposed, while helping one group of patients, would potentially put another very vulnerable group of patients at risk,” said the letter from Kidney Care Partners, which was signed by its chairman, Kent J. Thiry, the chief executive of DaVita, a large commercial dialysis provider.

The group instead proposed to pay for expanded drug coverage by delaying when Medicare would start covering kidney patients who also have private insurance.

The National Kidney Foundation, the largest advocacy group for renal patients, says it signed on to the letter because it shares the group’s concerns about bundling of payments. But Ellie Schlam, the foundation’s spokeswoman, said its support for extending coverage for anti-rejection drugs would ultimately outweigh its opposition to

The American Society of Transplantation supports the provision.  Currently there are over 100,000 Americans on the Kidney transplant waiting list a

What You Can Do

Recently Transplant living, which is a service of UNOS http://www.transplantliving.org/  recently published this information.

Support Anti-Rejection Drug Coverage Bill

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, currently in the U.S. Senate and House of Representatives, will extend Medicare coverage of anti-rejection drugs for the rest of the patient’s life. This will help patients to keep their kidney transplants, shorten the transplant waiting list, and lower Medicare costs.

Call for action

Please consider contacting your Senators and House Member. To determine your Senators and House Member, go to http://www.congress.org and input your zip code under Get Involved.

Sample language

Dear Representative :

I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients. H.R. 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011,” was introduced by Representatives Burgess and Kind to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends more than $77,000 annually on a dialysis patient and about $19,100 per year for a kidney transplant recipient, after the year of the transplant).

H.R. 2969 would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it. On behalf of thousands of transplant recipients, I respectfully request your support of this legislation.

Sincerely,

 

In order to help you write to your representative in congress Bob’s Newheart has provided the following resource. 

To find your U.S. Senator’s address click on this link http://www.senate.gov/general/contact_information/senators_cfm.cfm

To find your congressional representative click on this link.

http://www.house.gov/representatives/find/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 Espanol

Bob Aronson Newheart de Bob es un receptor de trasplante cardiaco 2007, el fundador de Facebook, casi 2.500 Iniciativa miembro de Trasplante de Órganos y el autor de la mayoría de los blogs de donación / trasplante.

Puede comentar en el espacio proporcionado o por correo electrónico sus pensamientos a mí en bob@baronson.org. Y – por favor, difundir la palabra acerca de la necesidad inmediata de más donantes de órganos. No hay nada que puedas hacer lo que es de mayor importancia. Si usted convence a una persona de ser donante de órganos y tejidos puede salvar o afectar positivamente a más de 60 vidas. Algunas de esas vidas pueden ser personas que conoces y amas.

Por favor vea nuestro video “Gracias desde el fondo de mi corazón Donante” en http://www.organti.org Este video fue producido para promover la donación de órganos por lo que es libre y no se necesita permiso para su uso.

Si quieres correr la voz acerca de la donación de órganos personalmente, tenemos otra presentación de PowerPoint para su uso libre y sin permiso. Sólo tienes que ir a http://www.organti.org y haga clic en “Life Pass It On” en el lado izquierdo de la pantalla y luego sólo tienes que seguir las instrucciones. Esto no es un espectáculo independiente, sino que necesita un presentador pero es profesionalmente producida y sonido hechos. Si usted decide usar el programa le enviaré una copia gratuita de mi libro electrónico, “Cómo obtener un pie” O “que le ayudará con habilidades de presentación. Sólo tiene que escribir a bob@baronson.org y por lo general usted recibirá una copia del mismo día.

Además … hay más información sobre este sitio de blogs sobre otros donación / trasplante temas. Además nos encantaría que te unas a nuestro grupo de Facebook, la Iniciativa de Trasplante de Órganos Cuantos más miembros que obtenemos mayor será nuestra influencia con los tomadores de decisiones.

                               

Between Your Heart and Mine


The song, “Between Your Heart and Mine” was written and produced by Gregory Todd a Nashville,Tennessee country musician.  He wrote the song as a tribute to a friend who had a transplant.  I wrote to Mr. Todd yesterday to let him know about this blog and when he responded he said, among other things, “Incidentally, my friend Alan, the inspiration behind the song, has been doing incredibly well after 20 months of carrying the heart of his donor. He has recently been cleared to take his first flight- and it’s to go see his 10 year old daughter perform in the Cheerleading Championships in Orlando. How great is that??”  The song shows up in many places on the internet and you can hear more of Mr. Todd’s work by going to his website http://www.gregorytodd.com/Home_Page_DVPA.php

“Between Your Heart and Mine” is a touching song and the story that many of us who have had transplants have already lived.  Please take the time to listen to it…close your eyes, listen, remember and give thanks.  This Christmas is special for those who have had transplants and who are getting them right now, but there are thousands of others still waiting.  Please say a little prayer for them while you enjoy Mr. Todd’s wonderful song. You can click on the link above to listen to the song.  The lyrics are below.

Merry Christmas and happy holidays to everyone.

Between Your Heart and Mine

As the doctors took their places
I could see my kids and wife
Blowing kisses for good luck, not goodbye

Seven months with just one question
Then you answered with your life
You had one foot crossing heaven
I was one small breath behind

But you saved me when you gave me
The miracle I needed to survive
Now we both can go on
Between your heart and mine

Between your heart and mine
I’ll live a life worth living
I’ll take what I’ve been given
And pass it down the line

I’ll cherish every moment
Then breathe it in and hold in for the rest of my life
Between your heart and mine

I heard what happened late that night
Drinker driving through the light
He drove your hopes and dreams right to the ground

Just seventeen, you went too soon
But on my life I swear to you
Each morning when I wake up, I’ll make sure you’re smiling down

Cause you saved me when you gave me
The miracle I needed now it’s beating deep inside
So we both can go on
Between your heart and mine

I’ve been praying for your family
Hoping one day comes around
When I can let them know their boy is safe and sound
Between your heart and mine

And that I’ll live a life worth living
I’ll take what I’ve been given and pass it down the line
I’ll cherish every moment
Then breathe it in and hold it for the rest of my life
I’ll keep this feeling for the rest of my life
Between your heart and mine

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

A DAY IN THE LIFE OF A LIVER TRANSPLANT TEAM


Most of us have little contact with our transplant teams.  We meet the surgeon and perhaps a coordinator but very few others and once the transplant surgery is over, we are generally turned over to other specialists to follow our recovery.

Transplant teams are in the life saving business and while it is a hectic life it can be intensely rewarding.  You might have wondered exactly what a transplant team does.  Well, there’s not enough space or time here to go into great detail but I found this account of one day in the life of a transplant team fascinating.  I hope you do, too.

A DAY IN THE LIFE OF A LIVER TRANSPLANT TEAM

BY MARY ANN LITTELL

http://www.umdnj.edu/umcweb/marketing_and_communications/publications/umdnj_magazine/spring-2012/034.html

At age 57, Morristown resident Dagoberto Alvarado looked much older, a result of the devastating illness he’d been battling. It left him pale and weak, vomiting and losing weight. In February he was diagnosed with advanced cirrhosis. His physician advised him to go straight to the liver transplant center at University Hospital (UH): “They will save your life.”

At UH, Alvarado was evaluated and put on the liver transplant list. On March 10, he received a new liver in a grueling 12-hour operation. The next morning, his wife was amazed to find him sitting up in his hospital bed, eating a light breakfast. “I couldn’t believe the transformation in my husband — in less than a day,” she said.

“There are only two liver transplant programs in New Jersey. We are the first and the largest,” says Baburao Koneru, MD, chief of liver transplant and hepatobiliary surgery at UH and professor of surgery at New Jersey Medical School (NJMS). He launched the program in 1989 and that year, 15 transplants were performed. Since then, Koneru and his team have transplanted more than 1,000 livers, currently averaging 45 to 50 transplants a year. One-quarter of these patients have liver cancer. Other major reasons for liver transplantation include hepatitis C, alcoholic cirrhosis, primary sclerosing cholangitis, autoimmune hepatitis, primary biliary cirrhosis, Wilson’s disease and other serious disorders. The team also performs approximately 150 major liver operations annually.

The program is organized around a multidisciplinary team that includes surgeons, hepatologists, physician assistants, social workers, a psychiatrist with expertise in transplant issues, and financial coordinators to help navigate the maze of payment and reimbursement. Nurse coordinators (pre- and post-op) serve as the liaison between the transplant team and patients, overseeing the logistics of surgery and recovery.

A typical day with the medical/surgical team includes much more than surgery. This group is all about sharing knowledge and technical skills with residents, fellows, medical students, nurses, physical therapists, nutritionists, pharmacists and other hospital colleagues, on rounds and at weekly meetings and conferences. “There are many key players,” says Koneru. “Teamwork is what makes this program so successful.”

8:00 am

The day begins early with a radiology conference where the team evaluates the X-rays of many patients, identifying those who might benefit from a clinical trial or liver transplant. Patients are referred to the UH program from throughout the state. “We’re known for our excellent outcomes,” says Koneru.

9:45 am

Above left: Samanta and Koneru on rounds, which are attended by residents, medical students, social workers, nurses, pharmacists, physical therapists, dietitians and others. Above right: Koneru discusses patient histories with Michelle Wilkins, MD (left), NJMS’09, an intern at Robert Wood Johnson Medical School; and UH hepatology fellow Eleazer Yousefzaden, MD.

11:45

The team checks on Dagoberto Alvarado, now three days post-transplant. Dramatically improved, he’ll soon be heading home. Patients can wait for months on the transplant list — or in the case of Alvarado, be fortunate enough to secure a liver within a few weeks. “He might not have made it otherwise,” says his wife. The length of time a patient spends on the waiting list depends on many factors, among them the severity of their illness and the availability of donated organs.

1:30 pm

NJMS students may take clinical electives in a variety of specialty areas, including hepatology. This offers opportunities for collaborative learning from those in other health professions. It’s also a chance for students to ‘try out’ a specialty and experience first-hand what it’s like to be an active member of a medical team. Left: Cynthia Quainoo, MD, transplant hepatology fellow, discusses patient management with Samanta.

2:05 pm

Above Left: Patient Jamie Feireria was admitted to UH with cirrhosis of the liver and a severe rash (a common complication of liver disease). “I gained 30 pounds in one month,” she says. The physicians order tests to find out why. Above Right: Arun Samanta, MD, is professor of medicine at NJMS and chief of hepatology and transplant medicine at UH. The UH liver unit accommodates patients who are potential transplant candidates; those who are listed for transplant and await a donor organ; and those with severe liver disease — for example, acute liver failure, metabolic liver disease, advanced liver disease complicated with acute kidney failure, or drug-induced liver injury — who require care but do not need a transplant.

2:35 pm

Patient Alita Cruz has hepatitis C and has been on the transplant list for four weeks. She was admitted to UH when a liver became available, but unfortunately, the organ wasn’t in transplantable condition. Her wait for a donor liver continues.
FRONT ROW, LEFT TO RIGHT : GEORGE MAZPULE, MD, SURGICAL RESIDENT; BABURAO KONERU,MD; ARUN SAMANTA, MD.

MIDDLE ROW: ELISABETE DASILVA, PHYSICIAN ASSISTANT; EDITH MENCHAVEZ, RN, NURSE COORDINATOR; MARIA DEALMEIDA, FINANCIAL COORDINATOR; VALERIE BROOKS, SECRETARY; HELEN EDUJARDIN, PROGRAM ADMINISTRATOR; MALIHA AHMAD, MD, ASSISTANT PROFESSOR OF MEDICINE; CONNIE MUNOZ, PATIENT NAVIGATOR/REFERRALS COORDINATOR; ESTHER CALADO-ALIGMAYO, RN, NURSE COORDINATOR; THOMAS LYNCH, MD, SURGICAL RESIDENT; MARLENE ANDRADE, MEDICAL ASSISTANT; FELMA IZAR, FINANCIAL COORDINATOR; ADITI PATEL, PHYSICIAN ASSISTANT; DOROTHY O’HARE, RN, NURSE COORDINATOR; MAUREEN HESTER, RN, NURSE COORDINATOR ;ELOISA LAUDATO-HUFALAR, RN, NURSE COORDINATOR; IONA MONTEIRO, MD, ASSOCIATE PROFESSOR OF PEDIATRIC GASTROENTEROLOGY.

BACK ROW: GEOFFREY KOIZUMI, DATA SYSTEMS MANAGER; JACQUELINE O’BRYANT-TRAVIS, PROGRAM ASSISTANT; FONDA STEWART, MEDICAL ASSISTANT; LATONIA BALDWIN, MEDICAL ASSISTANT ;CARLO OPONT, PHYSICIAN ASSISTANT; ADRIAN FISHER, MD, ASSOCIATE PROFESSOR/TRANSPLANT SURGEON; AND DORIAN WILSON, MD, ASSOCIATE PROFESSOR/TRANSPLANT SURGEON.

3:20 pm

Transplanting an organ is not unlike staging a large, complex opera. There is so much drama — some of it life and death. The starring players — physicians, patients, nurses and myriad support staff — often face obstacles and conflict. There’s the quest for a ‘holy grail’— in this case, a healthy liver.

The group of people pictured above makes it happen at University Hospital. “Most patients are referred by their physicians, but some people find us by themselves,” says UH nurse coordinator Maureen Hester. “When they come here, they’re frightened. They expect to go on the transplant list right away, but it doesn’t work that way.”

Patients are first examined to determine whether they are transplant candidates. The workup includes evaluation by transplant hepatologists and surgeons, cardiologists, social workers and dietitians. A psychiatric workup includes support for patients and evaluation for drug and alcohol abuse – both primary factors in hepatitis C infection. Transplant candidates with alcohol or drug-related illness must agree to give up these substances completely. Their names will not go on the waiting list until they complete six months of sobriety.

Those who are accepted into the program go on a national waiting list until a liver becomes available. Statistical formulas are used to predict which patients’ are in the greatest need of a new liver and they are placed higher on the list. Patients’ placement on the list changes as their health status changes.

The wait for a liver can be days, weeks, or months. It’s part of the drama. When the call finally comes that a liver is available, the patient and the team are ready. And in the best-case scenario, there is a happy ending,

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Are Elected Officials in Bed with the Dialysis Industry?


People who are diagnosed as needing organ transplants are end-stage patients.  That means medical science has run out of alternatives to extend life and a transplant is the last and most beneficial approach.  Transplants are not cures but they can offer a considerable extension of life provided the patient adheres to the program and has on-going, expert medical care.

At least twice very day a transplant recipient must take the daily dose of anti-rejection drugs.  They are effective but expensive.  They can run as high as $1,500 a month and if you quit taking them you can and likely will die.  If you are of retirement age or disabled your Kidney transplant is covered by Medicare and most of the cost of the drugs as well.  If you are under 65 and not disabled and diagnosed with End Stage Renal Disease (ESRD) your kidney transplant will still be covered by Medicare but your anti-rejection drugs will only be covered for 36 months and then you are on your own (detailed explanation below).

If after 36 months you go into rejection because you can’t afford the meds, Medicare will pay for dialysis and even pay for another transplant but not for the drugs which would prevent needing either.  The drugs would be a fraction of the cost of the two alternatives that are covered.  At best that is just plain dumb!

Someone said a long time ago that, “If you like either sausage or the law, you should watch neither being made.”  Well, that certainly applies to this issue.  Another of my favorite expressions which also applies here is, “No one’s life, liberty or property are safe when the legislature is in session.”  These two expressions apply perfectly to the anti-rejection medicine silliness.

The entire situation and what to do about it is explained below.

The Current State Of Access to Post transplant Care

By

Christine S. Rizk, JD, and Sanjiv N. Singh, MD, JD

http://virtualmentor.ama-assn.org/2012/03/pfor3-1203.html

Virtual Mentor. March 2012, Volume 14, Number 3: 250-255. American Medical Association

This article provides historical perspective on the evolution of coverage for kidney transplant patients and attempts to identify what initiatives would most effectively and efficiently improve their survival.

As of January 24, 2012, in the United States, there were 112,767 waitlist candidates on the various national transplant registries [2]. Of those candidates, 90,563 were waiting for kidneys, but in 2011 only 13,430 kidney transplants were performed [3]. The need for kidneys far outweighs the availability of suitable donor organs, and some postulate that the Patient Protection and Affordable Care Act of 2010 (ACA) may worsen the shortage by eliminating barriers to insurance coverage based on preexisting conditions, lifetime coverage caps, and required periods of pretransplant dialysis [4].

Even more critical from a clinical, economic, and moral perspective is the fact that the additional end-stage renal disease (ESRD) patients now expected to receive transplants by 2014 will be most vulnerable in the posttransplant phase of care. Coverage for pre transplant dialysis and maintenance drugs for ESRD, but not post transplant care, receives strong support in Washington from large dialysis and pharmaceutical companies, which derive significant profits from dialysis, ESRD drugs, and dialysis-related services [5]. For ESRD patients, dialysis is covered by Medicare for life [6].

For posttransplant care, however, Medicare coverage is limited, providing only 80 percent of the cost of immunosuppressive medications for 36 months after transplantation (for those whose Medicare entitlement is based on ESRD) and no coverage thereafter. Despite the fact that effective and long-term immunosuppression is essential for survival of transplant patients [7], the vast majority are left to fund 20 percent of the cost for the first 3 years of immunosuppressive drugs ($13,000 to $15,000 total cost per year per patient) [8], and, for patients under 65 who are not disabled, all of the cost of immunosuppressive drugs thereafter [9].

Not surprisingly, this system leads to noncompliance. Many patients cope with the financial burden by “spreading out” their anti-rejection drugs, taking them less often or not at all [10, 11]. A recent meta-analysis reports that “about 22.6 of 100 adult transplant patients per year fail to take anti-rejection drugs” [12]. If allograft failure occurs due to nonadherence or a patient is considered unable to pay for posttransplant costs, with few exceptions, she is typically not relisted [13, 14]. According to a study focusing on medication nonadherence among transplant patients, nonadherence was more prevalent among kidney recipients than among recipients of other organs and more prevalent in the United States than in Europe [12].

Legislative History

Congress has continually struggled with the tension between supporting low-income patients and controlling the costs of government-funded health care. The legislative history of renal-transplant drug coverage highlights this struggle.

The Social Security Act Amendments of 1965, which created Medicare and Medicaid, initiated medical insurance for seniors, families with dependent children, the blind, and the disabled [15]. At the SSA’s inception, Medicare provided for prescription drugs that were administered in the physician’s office but did not provide coverage for outpatient prescription drugs [14].

In 1972, on the eve of President Richard Nixon’s reelection, after much debate and political pressure to expand health care insurance, amendments were passed that provided increased coverage in specific areas. They specifically designated chronic kidney disease patients “disabled” for the purpose of receiving Medicare coverage but only after at least 3 months of dialysis and only for 12 months after transplantation [16].

Undoubtedly, these amendments were the original and now obviously outdated roots of the notion that posttransplant care benefits should be time-limited. At the time, such a notion was defensible. Dialysis was then a cost-effective and, more importantly, still superior way to extend lives, while kidney transplantation was a risky medical procedure on the frontier of available therapies. In the decades that would follow, however, renal transplantation outpaced dialysis in mortality reduction and overall clinical outcomes [17]. Meanwhile, the number of eligible patients who used dialysis far exceeded expectations, and the ESRD entitlement became quite costly [14].

In the last 3 decades, the dialysis entitlement has remained largely intact while posttransplant entitlements have waxed and waned in small stutters.

  • As a response to the increased costs of dialysis, Congress passed an amendment in 1978 extending Medicare posttransplant coverage from 1 year to 3 years; however, this amendment did not cover the cost of outpatient immunosuppressive medications [14].
  • In 1984, Congress passed the National Organ Transplant Act of 1984 to ban the sale of organs [18]; extended coverage for immunosuppressive drugs was considered but ultimately left out of the bill, mostly due to funding concerns and political bargaining [14].
  • Posttransplant drug coverage gained some traction in the Omnibus Budget Reconciliation Act of 1987 which included Medicare coverage of 80 percent of a kidney transplant recipient’s immunosuppressive drug costs (including outpatient immunosuppressive prescription drugs) for 1 year after transplant [14, 19]. This was eventually extended, in 1997, to cover 36 months of immunosuppressive drug costs [9].
  • In 2000, Congress extended Medicare coverage of immunosuppressive drug costs to the life of the patient, but only for those who are disabled or over 65. This often leaves those patients most at risk for nonadherence and noncompliance—i.e., younger kidney recipients under 65—uninsured after 3 years [14].

Despite decades of legislative history and clinical data revealing the obvious gaps in posttransplant care entitlements, extending the duration of coverage for immunosuppressive-drug costs was not included in the ACA. In a provocative piece published in 2010 in the Clinical Journal of the American Society of Nephrology, Cohen and colleagues assert that “in response to pressure from the corporate dialysis community and their kidney coalition, several members of Congress acted to prevent the patient immunosuppressive provision from being included in the final health care reform package. Some of these opposing voices on Capitol Hill have been generously supported by the large dialysis providers for years” [5].

It is theoretically possible that the ACA’s insurance exchanges will include lifetime coverage for immunosuppressive drugs. These exchanges will not be implemented until 2014, however. Moreover, it is not clear exactly what type of coverage will be offered and whether such lifetime coverage will be offered in the lower-priced options, where it is most needed [9].

Cost Savings for the Federal Government

Continuing the current limitations on coverage of posttransplant medications is actually costing the health care system more money in the long term. Studies have shown that it is less costly to continue covering the cost of immunosuppressive drugs for kidney transplant patients after 36 months than it is to cover the costs of resuming dialysis for the same population. For example, a University of Maryland study concluded that it was more cost-effective to continue covering immunosuppressive drugs than it was to pay for dialysis, finding that “the breakeven point was 2.7 years for all of the cases [it] analyzed and for 30 percent of all patients who did not need to be readmitted to the hospital during the year after their transplant, the breakeven point was only 1.7 years” [10]. A study conducted by the Institute of Medicine (IOM) also concluded that lifetime coverage of immunosuppressive drugs would lead to cost savings because it would reduce nonadherence and thereby improve kidney allograft survival, reducing long-term reliance on dialysis [12].

Current Legislation

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplants Patients Act of 2011, currently pending in committee in both the House and the Senate, would extend coverage of immunosuppressive drugs for kidney transplant patients for the lifetime of the kidney [20, 21]. The bill is bicameral, bipartisan, and supported by the transplant community [22]. As noted by Cohen et al, however, similar attempts have failed in the past, most recently with the proposed Durbin amendment to the ACA [5]. Similar attempts by Congress in 2003 and 2007 to extend lifetime immunosuppressive coverage also failed in the wake of funding concerns and political jockeying [14].

Conclusion

Extending immunosuppressive drug coverage for the lifetime of kidney patients is a cost-effective way for the federal government to increase the value of health care by improving clinical outcomes for those with ESRD while avoiding the costs of resuming dialysis and allograft failure. Low-income kidney transplant patients currently suffer heavy financial burdens and are denied access to transplant relisting because of their inability to pay for critical drugs. There is a clinical, economic, and moral imperative to, at long last, bridge this coverage gap—a gap that lies at the core of effective transplant care and detracts from the movement for comprehensive coverage begun by the Affordable Care Act.

Transplant Living http://tinyurl.com/brwj3je  suggests you contact your Senators and Congressional Representatives to urge their support of the measure that would extend anti-rejection medication coverage from 36 months to lifetime.

Sample language

Dear Representative :

I am contacting you to request that you cosponsor important legislation for chronic kidney disease patients. H.R. 2969, the “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2011,” was introduced by Representatives Burgess and Kind to help kidney transplant recipients obtain the life-saving immunosuppressive medications that are necessary to maintain the viability of their new kidney.

Individuals with chronic kidney failure require kidney dialysis or a transplant to survive, and are eligible for Medicare regardless of age or other disability. There is no time limit on Medicare coverage for dialysis patients. However, transplant recipients who are not aged or disabled retain Medicare eligibility only for 36 months following their transplant. After their Medicare ends, they often face the challenge of obtaining group health insurance or other coverage, greatly increasing the risk of organ rejection if they cannot afford their required medications. If the transplanted kidney fails, they return to dialysis or receive another transplant, both of which are more costly (Medicare spends more than $77,000 annually on a dialysis patient and about $19,100 per year for a kidney transplant recipient, after the year of the transplant).

H.R. 2969 would extend Medicare Part B eligibility, and only for immunosuppressive medications. Coverage for any other health needs would end 36 months after the transplant, as under current law. The legislation also requires group health plans to maintain coverage of immunosuppressive drugs if they presently include such a benefit in their coverage. Lifetime immunosuppressive coverage will improve long term transplant outcomes, enable more kidney patients who lack adequate insurance to consider transplantation, and reduce the number of kidney patients who require another transplant. Nobody should lose a transplant because they are not able to pay for the drugs to maintain it. On behalf of thousands of transplant recipients, I respectfully request your support of this legislation.

Sincerely,

 

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Post-Transplant Depression — What It Is and What To Do.


This is a compilation of information from various sources.  It does not constitute medical advice.  Please consult your physician about your condition and base your treatment decision on his or her advice, not on what you read here.

Post-transplant depression is real.  There are no statistics of which I am aware that indicate the percentage of organ recipients that suffer from the malady but there are enough reports of the problem to suggest it is no small number.

The extent to which your emotional health is affected by a transplant depends on a complex interplay of your health status and personality, genetic factors, social support, financial situation, and other concerns.

For most people, emotions about their experience change and evolve over time. Typically, feelings of sadness or anxiety are transient. For some, however, these feelings may persist and interfere with daily life.

According to the Mayo Clinic Depression is more than just a bout of the blues.  It isn’t a weakness, nor is it something that you can simply “snap out” of. Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure. http://www.mayoclinic.com/health/depression/DS00175

Depression is a complex disease and sometimes it is difficult if not impossible to find a reason for the problem.  One that I hear most often is guilt.  Some recipients feel guilt because, they say, someone had to die in order for them to live. Others feel guilt because they are doing well while other transplant recipients may not be so fortunate.  Those feelings sometimes proves to be a very heavy burden for many transplant recipients but it may be only one potential cause of their feelings. There are some other factors that may contribute to post transplant depression as well:

  • Anger or depression, because they don’t feel better as soon as they expected.
  • Frustration, because of chronic or lingering fatigue that keeps them from things they want to do or accomplish.
  • Mood changes caused by the drugs that must be taken following a transplant.
  • Dissatisfaction with old plans and goals. Identifying new priorities and making lifestyle changes may feel good, but can also be stressful.
  • Fear that the old illness might return and affect the new organ

Symptoms of depression include:

  • Persistent sad, anxious, or “empty” feelings
  • Feelings of hopelessness or pessimism
  • Feelings of guilt, worthlessness, or helplessness
  • Irritability, restlessness
  • Loss of interest in activities or hobbies once pleasurable, including sex
  • Fatigue and decreased energy
  • Difficulty concentrating, remembering details, and making decisions
  • Insomnia, early-morning wakefulness, or excessive sleeping
  • Overeating, or appetite loss
  • Thoughts of suicide, suicide attempts
  • Aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment.

Despite the feelings of gloom and doom, though, there is reason to be optimistic because most people with depression will eventually  feel better with medication, psychological counseling or other treatment.

Still another reason for post-transplant depression is Post Traumatic Stress Disorder (PTSD).  Post-traumatic stress disorder is a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.  Obviously getting an organ transplant falls into that definition. http://health.nytimes.com/health/guides/disease/post-traumatic-stress-disorder/overview.html

Symptoms of PTSD fall into three main categories:

1. “Reliving” the event, which upsets day-to-day activity

  • Flashback episodes, where you re-live the event so it seems to be happening again and again
  • Repeated traumatic memories of the event
  • Frequent nightmares of the event
  • Strong, uncomfortable reactions to reminders of the situation

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feeling detached
  • Being unable to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Hiding your moods
  • Avoiding places, people, thoughts or things that remind you of the trauma
  • Feeling as though you have no future

3. Arousal

  • Difficulty concentrating
  • Startling easily
  • An exaggerated response to things that startle you
  • Feeling more aware of negative things
  • Irritability and angry outbursts
  • Difficulty falling or staying asleep

If you have severe depression, a doctor, loved one or guardian may need to guide your care until you’re well enough to participate in decision making. You may need a hospital stay, or you may need to participate in an outpatient treatment program until your symptoms improve. http://www.mayoclinic.com/health/depression/DS00175/DSECTION=treatments-and-drugs

Here’s a closer look at your depression treatment options.

Medications
A number of antidepressant medications are available to treat depression. There are several different types of antidepressants. Antidepressants are generally categorized by how they affect the naturally occurring chemicals in your brain to change your mood. You can view the entire section on medications by following the above link to the Mayo clinic.

Types of antidepressants include:

  • Selective serotonin reuptake inhibitors (SSRIs). These medications are safer and generally cause fewer bothersome side effects than do other types of antidepressants. SSRIs include fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), citalopram (Celexa) and escitalopram (Lexapro). The most common side effects include decreased sexual desire and delayed orgasm.
  • Serotonin and norepinephrine reuptake inhibitors (SNRIs). These medications include duloxetine (Cymbalta), venlafaxine (Effexor XR) and desvenlafaxine (Pristiq). Side effects are similar to those caused by SSRIs.
  • Norepinephrine and dopamine reuptake inhibitors (NDRIs). Bupropion (Wellbutrin) falls into this category. It’s one of the few antidepressants that doesn’t cause sexual side effects.
  • Atypical antidepressants. These medications are called atypical because they don’t fit neatly into another antidepressant category. They include trazodone (Oleptro) and mirtazapine (Remeron). Both of these antidepressants are sedating and are usually taken in the evening. In some cases, one of these medications is added to other antidepressants to help with sleep. The newest medication in this class of drugs is vilazodone (Viibryd).
  • Tricyclic antidepressants. These antidepressants have been used for years and are generally as effective as newer medications. But because they tend to have more numerous and more-severe side effects, a tricyclic antidepressant generally isn’t prescribed unless you’ve tried an SSRI first without an improvement in your depression.
  • Monoamine oxidase inhibitors (MAOIs). MAOIs — such as tranylcypromine (Parnate) and phenelzine (Nardil) — are usually prescribed as a last resort, when other medications haven’t worked. That’s because MAOIs can have serious harmful side effects. They require a strict diet because of dangerous (or even deadly) interactions with foods, such as certain cheeses, pickles and wines, and some medications including decongestants. Selegiline (Emsam) is a newer MAOI that you stick on your skin as a patch rather than swallowing. It may cause fewer side effects than other MAOIs.
  • Other medication strategies. Your doctor may suggest other medications to treat your depression. These may include stimulants, mood-stabilizing medications, anti-anxiety medications or antipsychotic medications. In some cases, your doctor may recommend combining two or more antidepressants or other medications for better effect. This strategy is known as augmentation.

Finding the right medication
everyone’s different, so finding the right medication or medications for you will likely take some trial and error. This requires patience, as some medications need eight weeks or longer to take full effect and for side effects to ease as your body adjusts. If you have bothersome side effects, don’t stop taking an antidepressant without talking to your doctor first.

Antidepressants and pregnancy
If you’re pregnant or breast-feeding, some antidepressants may pose an increased health risk to your unborn child or nursing child. Talk to your doctor if you become pregnant or are planning on becoming pregnant.

Antidepressants and increased suicide risk
Although most antidepressants are generally safe, be careful when taking them. The Food and Drug Administration (FDA) now requires that all antidepressant medications carry black box warnings. These are the strictest warnings that the FDA can issue for prescription medications.

The antidepressant warnings note that in some cases, children, adolescents and young adults under 25 may have an increase in suicidal thoughts or behavior when taking antidepressants, especially in the first few weeks after starting an antidepressant or when the dose is changed. Because of this risk, people in these age groups must be closely monitored by loved ones, caregivers and health care providers while taking antidepressants. If you — or someone you know — have suicidal thoughts when taking an antidepressant, immediately contact your doctor or get emergency help.

Psychotherapy
Psychological counseling is another key depression treatment. Psychotherapy is a general term for a way of treating depression by talking about your condition and related issues with a mental health provider.

Through these talk sessions, you learn about the causes of depression so that you can better understand it. You also learn how to identify and make changes in unhealthy behavior or thoughts, explore relationships and experiences, find better ways to cope and solve problems, and set realistic goals for your life.

Hospitalization and residential treatment programs
In some people, depression is so severe that a hospital stay is needed. Inpatient hospitalization may be necessary if you aren’t able to care for yourself properly or when you’re in immediate danger of harming yourself or someone else. Getting psychiatric treatment at a hospital can help keep you calm and safe until your mood improves.

In this blog we have attempted to give you an overview of depression and its causes along with known effective treatment options.  Please remember, this is only a blog, it is not medical advice and we strongly suggest that you take no action based on what you read here.  See a qualified physician, ask a lot of questions and then make a decision.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

“His” Heart, My Life, My Story


I wrote this account of my life since receiving a heart transplant in hopes that others will benefit from my experiences.  Most of you who will have transplants will have a far easier time of it than I did.  You must remember that I was 68 years old when I had mine and that alone can make a huge difference in recovery time and other factors as well.  If any of you have any questions after reading this please contact me personally at bob@baronson.org.

Being a transplant recipient is an amazing experience.  I simply cannot describe what the feeling is like knowing that one of the parts you were born has been discarded and replaced with one belonging to someone else who in all likelihood died…except for the organ that is keeping you alive.

I don’t know who my donor was.  I only know he was about 30 years old when he died and he was from South Carolina.  I have written to my donor family but not heard from them so I assume they prefer to remain anonymous and I understand and accept that.

Everyone who has ever had a transplant has had a unique experience that nothing else in life can match.  Each day I am struck by the awareness that the heart I was born with, that kept me alive for 68 years no longer beats within my chest.  It died.  I didn’t.  Wow!

Often when I lie in bed I feel the rhythmic thumping that kept someone else alive for 30 years is now doing the same for me.  “His” heart is my life.  “His” heart pumps my blood, in my body to my brain and allows me to think, to live, love and enjoy life. “His” heart, not mine.

My donor has given me a lot but his greatest gift is allowing me the extra time to be with my wonderful wife Robin.

In 1995 after collapsing in a parking ramp am rushed to a hospital, I was diagnosed with dilated idiopathic cardiomyopathy and was told that someday I might need a heart transplant.  As the owner of a communications consulting business I was very active and travelled a great deal both domestically and internationally, but slowly my health began to deteriorate.  Always the optimist I adjusted and slowed down a little but not so anyone would really notice.

Then in 1996 my wife was diagnosed with lung cancer and I ignored my condition while we dealt with hers which included many chemotherapy and radiation sessions.  After a long and courageous battle with that terrible disease she succumbed in November of 1998.  We had been married for 35 years.  It was a devastating time and at age 59 I felt lost, alone and without hope as I began to feel the effects of my own condition.

About a year later I met Robin Diffie and as we got to know each other I felt my life just might come back together after all, but my version of the sword of Damocles, cardiomyopathy, continued its swing through my life as my heart function continued to fall with a resultant decrease in my ability to function.

In 2000 Robin and I were married in Eagan, Minnesota but by then the condition which would later require a heart transplant was becoming debilitating, when I travelled I began to ask for wheelchair service in airports and Robin began traveling with me to make sure I got one and to act as my “pusher.”

Cardiomyopathy kind of sneaks up on you and kicks your butt softly at first but then harder and harder.  The effect of the disease is measured by ones “Ejection Fraction” (EF).  A normal heart will pump out about 60% of the blood it contains every time it beats.  As the disease progresses the EF keeps going down and the heart enlarges in order to store the blood that doesn’t’ get ejected.  My heart was getting very large and by 2006 my EF was around 10% and decreasing.  Clearly I was dying and too sick to work.  Sometimes I could barely walk a few feet without having to stop to rest.  My heart was just barely pumping enough blood to keep me alive.  Reluctantly I made the decision to retire.

It was then that we decided to move to Jacksonville, Florida and we did so for two reasons.  1) Moving there offered the greatest likelihood of getting a heart.  My research indicated that the Mayo Clinic in Jacksonville had a wonderful record in organ procurement and transplantation.  2) It was an easy decision because Jacksonville is Robin’s home town and her entire family is there.  I still question Robin’s sanity in marrying a dying man but no matter I am grateful for whatever bug struck her and caused the instability.

After undergoing the battery of tests that are required to qualify for a transplant, I was finally approved and placed on the national list on August 8th of 2007.  I had resigned myself to either a very long wait or, I thought, no heart at all because of my age.  It had already been twelve very long years since I was diagnosed with a fatal heart disease.  I thought that at age 68 it was unlikely that I would get a heart and if I did it wouldn’t be anytime soon — but I got lucky.

Only 13 days after being listed I got the call from Mayo Clinic Transplant Cardiologist Dr. Jeffrey Hosenpud that he “might” have a heart for me.  He did.  I got one and August 21st 2007 goes down in history as my “other” birthday.

My recovery from the transplant was difficult to say the least.  It took four years before I finally felt good again.  I quit smoking in 1991 but the 37 year habit had already taken its toll, I had Chronic Obstructive Pulmonary Disease (COPD).  That’s a disease of the lungs that can best be described as feeling as though you are breathing through a straw…try that some time.  COPD is bad enough but when you get pneumonia on top of it you have another life threatening situation.  Well, I got pneumonia shortly after my surgery and was hospitalized again but the recovery was very slow and touch and go before I slowly regained my strength.  I now know that another bout with pneumonia could kill me so I try to be pretty careful about what I expose myself to.

I no sooner recovered from the pneumonia virus than I was stricken with indescribable absolutely excruciating pain….pain so severe that sometimes I would just sit and cry. Part of the pain, I’m told, was the result of the way I was positioned during my surgery.  Apparently your left arm is in a strange position in order to allow the surgeon unobstructed access to the chest cavity, but a transplant takes a long time and it seems that my arm needed different medical attention than was delivered.

The pain in my left arm right down to my wrist and fingers was awful but then just when I thought it couldn’t get worse, it did.  The pain spread to both shoulders, my neck and lower back for and went on for months.  Torn rotator cuffs were part of the reason but much of the pain came from unknown causes, perhaps it was the way I was sleeping or  maybe the lack of proper exercise and maybe because of an old auto accident.  We’ll never know the exact cause but it was finally resolved with a combination of physical therapy and Oxycontin the potent, addictive pain killer, and addictive it was.

I’ve been a recovering alcoholic since 1982.  I understand addiction and I understood quite well that I had become dependent on the narcotic.  I no longer really needed it for the pain for which it was prescribed, I needed it for the pain caused by the withdrawal you experience between “hits.”  When you are taking pain killers there’s a simple question you must ask yourself every time you reach for a pill.  “Am I taking this because I need it for pain or am I taking it because I want it?”  If you are truthful with yourself and the answer is the latter, you have a problem.  I had a problem.  By addict standards I wasn’t taking much Oxycontin, only about 30-40 milligrams a day, but it was enough for me to know I needed the drug, needed it not to get high…I needed it to feel normal.  That’s what happens to every drunk and junkie…they ultimately drink, shoot or take pills just to try to feel normal.  Often the first high you have, is the last one.

Having been through chemical dependency treatment in 1982 I knew what I had to do but I also knew I couldn’t do it cold turkey.  I found a highly reputable pain clinic that specialized in addiction and started going there.  They immediately took me off of Oxycontin and put me on Suboxone another addictive drug but one that is used to slowly help people through the painful withdrawal that comes with quitting.  It took several months but it worked and I was Oxycontin free but, sorry, the story doesn’t end there.

You’d think that after having survived cardiomyopathy, getting a heart transplant, beating terrible pain and withdrawing from an addictive drug I would finally feel better.  Unfortunately the light at the end of my tunnel was an oncoming train that hit me hard and almost had me down for the count because for no explainable reason I fell into a deep, dark depression that lasted for a couple of years.

Each day I would awaken, head to my favorite recliner in a corner of the den and sit there in the dark drinking coffee and watching TV.  I was nearly a zombie.  Some days I wouldn’t even shower and I didn’t want to see or talk to anyone.  That was my life day after day, week after week for a couple of years.   Depression is one of those diseases where you don’t know how bad off you are until you are no longer bad off.  The only thing that gave me any hope each day was maintaining my presence on the Facebook group I started, Organ Transplant Initiative and my blog on WordPress, Bob’s Newheart.  While I knew I needed professional help I was so depressed I didn’t’ care if I got it so I kept putting it off.  Finally with Robin’s gentle prodding I went back to Mayo and began treatment but you don’t beat depression overnight or even in a few months.  Sometimes it takes a considerable amount of trial and error before the right treatment is found.  That came right around my four year post surgery mark but not until i had lost 75 pounds from lack of appetite.  i was left weak but finally energized and optimistic again.

Through all of that Robin, the lunatic who married a dying man, was steady as a rock. She had her hands full running two businesses and our home plus being my caregiver.  I’ll never know how she did it and kept her wits about her but she never flinched.  She is the most amazing, compassionate and competent human being I have ever encountered.  She is an unflappable optimist who doesn’t have a selfish bone in her body.  I don’t know why I was so blessed to find this woman but  as the man said, “Somebody up there likes me.”

That takes us to today…five plus years later and I feel wonderful but most importantly I get to spend time with Robin.  If a physician could have written a prescription for love, happiness and contentment it would simply have said, “Robin.”  It is only because of my donor that I am getting to spend time with this wonderful, gracious, smart, talented, funny and super woman.  The heart of a stranger has allowed us to really get to know each other.  There is no greater gift my donor could have given me and yes, that’s selfish but in this case I think selfish is OK.

Like many recipients my life has changed in other ways as well.  Because of a transplant I’m a different person.  I hope I’m a better person.  I know I appreciate life a great deal more than I ever did before, but it is not only my life I appreciate, it is everyone’s life.  When you experience death or near death, “life” takes on a whole new meaning.  My reaction to being a transplant recipient is that I owe my donor big time.  While I can’t do anything for him directly I can honor his memory by doing everything in my power to help others live.  That’s why I am such an outspoken donation/transplantation activist.

While science generally rejects the notion, some recipients feel they have taken on some of the characteristics of their donor.  I can’t say what my donor’s characteristics were because I didn’t know him but my life has changed as a result of having his heart.  He may well be the influence behind some of the changes I have experienced which include:

  • I am much less selfish than I was before and spend as much time as I can trying to help others.
  • I am much less concerned with material things than I used to be.  “Appearances” aren’t important anymore.  I don’t have to have a new car, wear the best clothes or get recognition.  I simply don’t care about those things.
  • I am far more passionate about causes I believe in like fairness, equality and justice.  I particularly feel a need to help the economically disadvantaged, the disabled, the sick, the elderly and, of course — children who suffer so many indignities of which they should not even be aware, never mind being forced to experience them.
  • I am more of a peacemaker.  In the past I was a warrior, a bulldozer who when advocating for a cause would show my commitment by rolling over those who disagreed and sometimes belittling them in the process.  Now I believe in finding common ground and forming friendships despite serious disagreements.
  • I am much less self-centered than I used to be.  I have come to accept who I am and as a result can concentrate on the needs of others.
  • I have always enjoyed learning but it has almost become an obsession since my transplant.  My thirst for knowledge about a wide variety of things knows no bounds.  I can’t get enough information about the wonders around us like the sun and the stars and the miracles, medical and otherwise that we experience every day.
  • Working with my hands has always been enjoyable for me but since my transplant I have become addicted to woodwork.  I’m not the Michelangelo of woodworking, hell I’m not even a Barney Fife but I am determined to get better at it.  Unfortunately it is my friends and family who must suffer receiving my woodworking “gifts” and then acting as though they like them.

Being a transplant recipient is an amazing experience.  It is one of which I am always aware and I mean always that I have someone else’ heart.  There is no time in my waking hours that I am not aware that I am alive because a generous stranger give me his heart.  I owe him and his family more than I could ever repay no matter what efforts I make for the rest of my life.

If you, the reader, are an organ donor, let me thank you on behalf of the unknown lives you may save as a result of your selfless action.  If you are not an organ donor, please consider it carefully.  You can save or enhance the lives of up to 60 people just by signing up and you can do that so easily.  Just go to www.donatelife.net and follow the directions.  Then, tell your family what you’ve done so there is no chance that anyone will object when the time comes to fulfill your commitment.

Earlier in this story I mentioned my Facebook Group and Blog. Let me take just a moment to explain how they came to be.  Just a couple of months after my transplant I got a call from Mayo asking if I’d be interested in starting a Facebook Organ donation group and in writing a blog.  I knew what neither were but decided I needed something to do during my recuperation and said, “Yes.”  With Mayo’s help I got started immediately.

That was the beginning or Facebook’s Organ Transplant Initiative group (OTI) and Bob’s Newheart blog on WordPress www.bobsnewheart.wordpress.com .  OTI now has almost 2,500 members and I’ve posted 140 blogs on donation/transplantation issues that have been read by over 100,000 people in at least 20 countries.  I believe that I was given my new heart to do this and it has become my new passion.

None of this would be possible without all you wonderful people who helped to make OTI a success and who read my “Stuff” on WordPress.  By offering your kind words, thoughts and deeds you are doing a great service to those who suffer while waiting for organs and those who are recovering from receiving them, never mind the caregivers and others who are so critical to the donation/transplantation process.  Words cannot express my fondness for all of you and my gratitude for your involvement.  All I can say is, thank you from the bottom of my donor’s heart.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

-0-

After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — What You Need to Know


More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C is one of several hepatitis viruses and is generally considered to be among the most serious of these viruses. Hepatitis C is passed through contact with contaminated blood. http://www.mayoclinic.com/health/hepatitis-c/DS00097

According to the U.S. Centers For Disease Control (CDC) http://www.cdc.gov/hepatitis/c/cfaq.htm Hepatitis C is most commonly spread through the use of infected needles. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants. Now we know that people can become infected with the Hepatitis C virus during such activities as

  • Sharing needles, syringes, or other equipment to inject drugs
  • Needlestick injuries in health care settings
  • Being born to a mother who has Hepatitis C

Less commonly, a person can also get Hepatitis C virus infection through

  • Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
  • Having sexual contact with a person infected with the Hepatitis C virus

***Note, the Executive Director at HCVets.com, Tricia Lupole, indicates that the CDC information may be incorrect. She made this comment on our Facebook page.

“HCV by sex is a risk if both partners experience trauma and exchange blood…. the only cells found is seminal fluids are dead cells…. confirmed by many microbiologist. http://www.ncbi.nlm.nih.gov/pubmed/15128350 There are 100s of studies that show this is the case but it is junk science that reins control of the message to control the funding. Lots of plans to make HCV the fall guy for bad behavior.“

In a second post she went on to say, “Yes, the CDC has quoted the same statement for about 15-20 years now. The study I posted is based on the CDC National Survey. Another sad point, last I checked. Even though we all know better the CDC says that there is not enough evidence to show tattoos are a risk factor.

AMA does not want to regulate tattoo parlors as medical procedures because they are responsible for guidance/ prevention. (The task has been given to OSHA).

Today Ms. Lupole issued this statement:

The Centers for Disease Control federal funding has decreased in recent decades, while there’s been increased demands for vaccination programs; resulting in limited resources for at-risk adults and other mandated priorities. The categorical nature of federal funding for HIV, STD, and viral hepatitis prevention limits the shifting of funds across program lines. In response to these funding woes, the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention’s (NCHHSTP) captured HCV disease and redesign public health services to fit HIV programs, instead of critical public health needs. It’s important to note that HCV disease was previously integrated into federal research that included its viral family called Flaviviridae, whose members are Yellow Fever and Dengue viruses and transmit disease through mosquitoes. The HCV genome is almost identical to Dengue virus.


NCHHSTP’s Federal mandate is an integration of existing programs with new programs, like Viral Hepatitis, developed to mirror HIV/AIDS management model based on specific risks and disease pathology. STD and Substance Abuse programs associated with the spread of HIV/AIDS received increased attention and funding, blurring the other components of these programs.

Needless to say, NCHHSTP has meet with resistance from advocates and congressional leaders, because of this effort by public health agencies to narrowly define HCV’s pathology.


Today, NCHHSTP spends half the federal resources acquired for HCV to vaccinate patients with both Hepatitis A & B vaccines. The majority of remaining resources are directed at drug and STD intervention and prevention. The STD division must qualify for its share of funding by defining HCV a sexually transmitted disease.


Despite scientific proof that HCV is not an STD, NCHHSTP promotes HCV as an STD based on a handful of studies that bring about scientific uncertainty, working against broader public health threats. Research excluded several methods by which the virus transmits to insure standard elements comply with CDC corporate agreement requirements. Thus… junk science.
Such actions suggests this poor public health response to the HCV Disease epidemic, may be the direct result of a system in disarray – seemingly captured by special interest with legal and political agendas that have negatively influenced the response. The integration approach has created disparities in access to health care and created “social labels” that have fostered discrimination, responsible for the reduction in quality of life.

The enduring legacy of “junk science” and indifference of governments, nonprofits, advocates, political parties or economic elites, have grave and global consequences given the propensity for viral transmission in provider settings as seen in current headlines.

FY 2012 Hepatitis C transmission and prevention: latest news. Massive increase of hepatitis C incidence in HIV-positive gay men in Switzerland 30 August 2012 …http://www.aidsmap.com/Hepatitis-C-transmission-and-prevention/cat/1628/

• FY 2008- No evidence of a HCV epidemic in HIV negative gay men
Dr Turner et al. Data from attendees at a London GUM clinic suggest that there is no increase in HCV infections amongst HIV negative gay men.

• FY 2007- Injection Behavior, Not Sexual Contact, Accounts for Couples’ HCV Risk NEW YORK (Reuters Health) – Injection behavior, rather than sexual contact, accounts for the clustering of HCV virus (HCV) infection in heterosexual couples, according to a report in the June 1st issue of The Journal of Infectious Diseases.

• FY 2004 No Evidence of Sexual Transmission of HCV among Monogamous Couples: Results of a 10-Year Prospective Study The risk of sexual transmission of HCV virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years.

Either way, CDC or not…. junk science remains junk science. Wish the outcry would focus on piercing jewelry or the reuse of razors and personal care items verses a national message about a method that is least as likely as not. This battle over CDC junk science, goes way back and is in memory of many who passed HCV on to family members, while sacrificing pleasures of the mind, body, and soul. As you can imagine, sexual transmission is a constant worry for some. Their partner may catch/transmit this deadly virus through sex, protection or not….. yet… turn right around and share razors and other items as such.  Especially the economically depressed populations.”

Most recently, though, we’ve identified another way people may become infected and through no fault of their own. Recently in a New Hampshire hospital an employee who was a drug addict and who also had Hepatitis C was found to be injecting himself with filled syringes meant for patients, refilling the syringes with a harmless liquid non-pain killer and then replacing the needles and syringes on the tray to be used again. Below is one of the original stories on this 2012 incident.

‘Serial infector’ accused of spreading hepatitis at NH hospital

U.S. Attorney’s Office | ASSOCIATED PRESS

CONCORD, N.H. — Authorities in at least six states are investigating whether a traveling hospital technician accused of infecting 30 people with hepatitis C in New Hampshire also exposed earlier patients to the liver-destroying disease.

David Kwiatkowski, a former technician at Exeter Hospital, was arrested Thursday morning at a Massachusetts hospital where he was receiving treatment. Once he is well enough to be released, he will be transferred to New Hampshire to face federal drug charges, said U.S. Attorney John Kacavas, who called Kwiatkowski, 33, a “serial infector” who worked in at least half a dozen states.

Authorities believe Kwiatkowski stole drugs from a hospital operating room in another state, but they declined to name any of the other states, saying only that they are not clustered in one part of the country. They would not say in what hospital Kwiatkowski was being treated at so he couldn’t be contacted for comment.

This story brought new attention to hospital policies on infection control, narcotics control and patient safety and has had ripple effects across the nation if not around the world.

So…the next question is, how serious is hepatitis C? Chronic Hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 15,000 people die every year from Hepatitis C related liver disease.

What are the long-term effects of Hepatitis C?

Of every 100 people infected with the Hepatitis C virus, about

  • 75–85 people will develop chronic Hepatitis C virus infection; of those,
    • 60–70 people will go on to develop chronic liver disease
    • 5–20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1–5 people will die from cirrhosis or liver cancer

The CDC strongly suggests that all baby boomers born since 1945 should get tested for Hepatitis C. http://tinyurl.com/8tg28x6Baby boomers account for 2 million of the 3.2 million Americans infected with the blood-borne liver-destroying virus. CDC officials believe the new measure could lead 800,000 more boomers to get treatment and could save more than 120,000 lives.

“The CDC views hepatitis C as an unrecognized health crisis for the country, and we believe the time is now for a bold response,” said Dr. John W. Ward, the CDC’s hepatitis chief.

Several developments drove the CDC’s push for wider testing, he said. Recent data has shown that from 1999 and 2007, there was a 50 percent increase in the number of Americans dying from hepatitis C-related diseases. Also, two drugs hit the market last year that promise to cure many more people than was previously possible.

What are the Symptoms of Hepatitis C?

Here’s what WEBMD says. http://www.webmd.com/hepatitis/hepc-guide/hepatitis-c-symptoms

Most people who are infected with hepatitis C-even people who have been infected for a while-usually don’t have symptoms.

If symptoms do develop, they may include:

  • Fatigue.
  • Joint pain.
  • Belly pain.
  • Itchy skin.
  • Sore muscles.
  • Dark urine.
  • Jaundice, a condition in which the skin and the whites of the eyes look yellow.

A hepatitis C infection can cause damage to your liver (cirrhosis). If you develop cirrhosis, you may have:

  • Redness on the palms of your hands caused by expanded small blood vessels.
  • Clusters of blood vessels just below the skin that look like tiny red spiders and usually appear on your chest, shoulders, and face.
  • Swelling of your belly, legs, and feet.
  • Shrinking of the muscles.
  • Bleeding from enlarged veins in your digestive tract, which is called variceal bleeding.
  • Damage to your brain and nervous system, which is called encephalopathy. This damage can cause symptoms such as confusion and memory and concentration problems.

What Treatment is Available?

So if you have Hepatitis C, then what? There are a number of options and there might even be a cure before too long. Standard state of the art treatment today for Hepatitis C is with Peginterferon and Ribavirin which achieves a “sustained response” up to 54% of people, which means that the virus has been eliminated from their blood after stopping treatment. People with hepatitis C types 2 and 3 have sustained response rates of about 80%; people with type 1 have rates of up to 50%.

While hepatitis C treatment has come a long way, there are still drawbacks. For a person who’s newly diagnosed, a 54% cure rate may not sound great. After all, it means that about one out of two people won’t respond to treatment.

Also, hepatitis C treatment is less effective in some populations. For reasons that no one understands yet, African-Americans are less likely to benefit from treatment. And the treatments may not be safe for people with other medical conditions — such as kidney failure, heart disease, or pregnancy. Interferon can also be expensive; according to the American Academy of Family Physicians, it can cost $6,000 per year. http://www.medicinenet.com/script/main/art.asp?articlekey=52451

It is important to note again, that while liver transplants can be very helpful to Hepatitis C patients, the procedure is not a cure but rather a delaying action and an effective one. There is some evidence that a transplant from a living donor to a patient who has been receiving the Interferon treatment could represent a cure. http://www.youtube.com/watch?v=3kOElXz0vVg

A Possible Medicinal Cure

Gilead Science is performing multiple studies to test an experimental drug, but the trial that is possibly the most intriguing looks at a combination therapy that rolls two medicines into a single pill. Gilead hopes to advance tests of its lead hepatitis drug GS-7977 in a combination with another company medicine, GS-5885.

Bristol Myers Squibb had a promising drug but clinical trials resulted in some negative results so the company has sent the project back to the drawing board. http://www.nytimes.com/2012/08/24/business/bristol-myers-ends-work-on-hepatitis-c-drug.html?_r=2&

Finally, Gilead Sciences, mentioned earlier, has a drug that combined with another from Bristol Myers Squibb could be a cure, at least clinical trials seem to offer that indication but the two companies, according to Hepatitis C activist Margaret Dudley can’t seem to cooperate. She is circulating a petition to get the “cure” on the market. http://hepc-cured.com/

October is National Liver Awareness month. We hope you have found these blogs helpful and offer these links for further information.

http://www.liverfoundation.org/

http://www.nlfindia.com/index.asp

http://www.mayoclinic.com/health/liver-problems/DS01133

http://tinyurl.com/92bjlup U.S. Government Link

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Hepatitis C — No One is Immune Everyone is Affected


More people in the United States now die from Hepatitis C each year than from AIDS  according to a new report from the Centers for Disease Control and Prevention.   More than 3.2 million Americans are currently infected with Hepatitis C and the really bad news is that most people who have it don’t’ know it.

In coming days I will publish more information and heart wrenching stories about Hep C and the patients it affects, the lives it wrecks and what it costs our society in both human lives and dollars…it is astounding.

Hep C is a disease of the liver that society likes to keep in the shadows because of some of the ways in which it is contracted, but we cannot begin to deal with a disease if it is kept secret and treated as though it was sinful and dirty.  It isn’t.  The people aren’t and they need our help and our compassion.

Hepatitis C can be treated and there are some exciting possibilities on the horizon but now there is no available cure,  not even a liver transplant is a cure because Hepatitis C is systemic.

To get us started on the road to understanding please view this video.  It says more in a few minutes than anything I can write at this moment.  Please share the video with others and then watch this space for more.  I fully intend to say a lot more on the subject of this disease that affects so many of my friends.

Thank you  http://www.youtube.com/watch?v=J4TCo-qVoKk

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Cystic Fibrosis — The Victims are Heroes


CF is Cystic Fibrosis. Most of us know nothing about it even though we are familiar with the term. CF is a devastating disease causing constant discomfort and requiring intense and frequent treatment.

A CF patient must start every day with an extended and sometimes agonizing period of therapy. Often that therapy has to be repeated several times during the day. I’ve known several CF patients and to me they are special because of the heroic efforts they must put forward every day just to be able to approach normal functioning. Most diseases are difficult to manage but CF patients need to get physical in order to function. They are amazing people.

CF is one of those diseases in which a Lung Transplant is sometimes necessary and quite helpful but the procedure does not cure the disease. We’ll discuss that option more later.

I don’t have CF but I do have Asthma and Chronic Obstructive Pulmonary Disease (COPD) so I can at least relate to the part of CF that causes difficult breathing.  The Clinical description of CF sounds bad enough but until you’ve experienced what it’s like to struggle for air it Is difficult if not impossible to understand.  One CF patient said, “It feels like you’re breathing through a small straw all the time.”

Difficult breathing alone is a terrible affliction but CF is much more than difficult breathing, it affects almost the entire body.   This definition from Medicine Net seems to sum up the disease in graphic, therefore understandable terms (http://www.medicinenet.com/cystic_fibrosis/article.htm).

“Cystic fibrosis mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs. Mucus is a substance made by the lining of some body tissues. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. However, if you have cystic fibrosis, your mucus becomes thick and sticky.

The mucus builds up in your lungs and blocks your airways—the tubes that carry air in and out of your lungs. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs.

The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can’t reach your small intestine.

These enzymes help break down the food that you eat. Without them, your intestines can’t fully absorb fats and proteins. This can cause vitamin deficiency and malnutrition because nutrients leave your body unused. It also can cause bulky stools, intestinal gas, a swollen belly from severe constipation, and pain or discomfort.

Cystic fibrosis also causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. This can upset the balance of minerals in your blood and cause a number of health problems. Examples include dehydration (a condition in which your body doesn’t have enough fluids), increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and, rarely, death.” The Clinical description of CF sounds bad enough but until you’ve experienced what it’s like to struggle for air it Is difficult if not impossible to understand.

The Cystic Fibrosis Foundation (www.cff.org/home/) Says this about the disease.

“Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide.   An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races”.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.”

The sad fact of life for the approximately 30,000 Americans who suffer from cystic fibrosis (CF) is that they must get their chests pounded at least twice a day.

Chest pounding, also known as chest percussion, loosens the thick mucus that forms in the lungs of CF patients, allowing them to cough or sneeze up mucus and consequently breathe more easily. Chest pounding is a primary therapy for treating the disease.

To achieve chest percussion, CF patients today have two main choices: they can have a respiratory therapist perform the chest-pounding or they can purchase a CF “vest.” The vest, once the patient puts it on, uses air waves to shake the whole upper body, helping to loosen mucus in the lungs.

In this video a young woman not only demonstrates the vest but has some fun with it.  http://www.youtube.com/watch?v=NEBM7ediRic&feature=related

Symptoms of Cystic Fibrosis

From the Mayo Clinic

http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=symptoms

Respiratory signs and symptoms
The thick and sticky mucus associated with cystic fibrosis clogs the tubes that carry air in and out of your lungs. This can cause:

  • A persistent cough that produces thick spit (sputum) and mucus
  • Wheezing
  • Breathlessness
  • A decreased ability to exercise
  • Repeated lung infections
  • Inflamed nasal passages or a stuffy nose

Digestive signs and symptoms
The thick mucus can also block tubes that carry digestive enzymes from your pancreas to your small intestine. Without these digestive enzymes, your intestines can’t fully absorb the nutrients in the food you eat. The result is often:

  • Foul-smelling, greasy stools
  • Poor weight gain and growth
  • Intestinal blockage, particularly in newborns (meconium ileus)
  • Severe constipation

Frequent straining while passing stool can cause part of the rectum — the end of the large intestine — to protrude outside the anus (rectal prolapse). When this occurs in children, it may be a sign of cystic fibrosis. Parents should consult a physician knowledgeable about cystic fibrosis. Rectal prolapse in children may require surgery.

Currently, there is no cure for cystic fibrosis. However, specialized medical care, aggressive drug treatments and therapies, along with proper CF nutrition, can lengthen and improve the quality of life for those with CF.

Each day most people with CF:

  • Take pancreatic enzyme supplement capsules with every meal and      most snacks (even babies who are breastfeeding may need to take enzymes).
  • Take multi-vitamins.
  • Do some form of airway clearance at least once and sometimes up to four      or more times a day.
  • Take aerosolized      medicines—liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer.

Because CF is a complex disease that affects so many parts of the body, proper care requires specialized knowledge. The best place to receive that care is at one of the more than 110 nationwide CF Foundation-accredited care centers

Lung transplants

While lung transplants are an option for CF patients, the procedure will not cure the disease, because the defective gene that causes it is in all of the cells in the body, not just in the lungs. At this time, scientists are not able to “fix” genes permanently but they are working on it. . While a transplant does give a person with CF a new set of lungs, the rest of the cells in the body still have CF and may already be damaged by the disease. Further, organ rejection is always possible and drugs that help prevent organ rejection can cause other health problems.

Cost and available help

As is the case with most chronic diseases treating CF can become very expensive but there are programs that exist to help patients with these challenges.  Many people with CF use Cystic Fibrosis Services, Inc., a specialty pharmacy that is a subsidiary of the Cystic Fibrosis Foundation. It provides access to CF drugs, offers patient assistance programs and works to help resolve complex insurance issues. CF Services is a participating provider with more than 5,000 insurance plans and nearly 40 state and federally funded programs. Visit www.cfservicespharmacy.com or call (800) 541-4959.

In 2008, the CF Foundation launched the Cystic Fibrosis Patient Assistance Program (CFPAF) as a nonprofit subsidiary. The CFPAF helps people with CF (who qualify) who need FDA-approved medication or paired drug-delivery devices for the nebulized treatment of CF-related pulmonary disease, or an FDA-approved medication for the treatment of pancreatic insufficiency related to CF. Case managers at the CFPAF help people with CF with ways to reduce out-of-pocket costs for CF drugs. All funds distributed by the CFPAF are provided by grants from drug manufacturers. Visit http://www.cfpaf.org or call (888) 315-4154.

CF drug companies often offer a range of patient assistance programs — from giving out samples of new CF products, to providing free nutritional supplements, to accepting voucher payments for CF drugs. Find out more information in the Foundation’s archived Web cast entitled, ” Patient Advocacy: Issues and Answers for CF.”

Suggested resources

Cystic Fibrosis is a terrible disease and while progress is being made in treating it, lifespans for its victims are still relatively short.   If you’d like to help fund research or offer assistance in other ways contact the Cystic Fibrosis Foundation http://www.cff.org/GetInvolved/ManyWaysToGive/MakeADonation/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Bristol Myers /Gilead Science — Profits Ahead of Life


I have a good news, bad news story to report today.  It is about a combination of life saving drugs that may never see the light of day because the two companies that make them can’t or won’t cooperate with one another.  One woman, Margaret Dudley of San Antonio Texas is doing something about it.  More about her, later.

This is about a combination of drugs from Bristol Myers Squib and Gilead Science that could be a cure for Hepatitis C which affects nearly 200 million people worldwide.  It is a viral infection that can lead to liver failure and death.  End-stage liver disease (cirrhosis) due to chronic hepatitis C has become the leading indication for liver transplantation in the United States.

First the good news, this really could be a cure.   A combination of Gilead’s GS-7977 and Daclatasvir from Bristol Myers Squib shows great promise as a cure according to some limited studies.  These drugs are pretty effective on their own but apparently when combined they could be a cure…yes cure.  I know, cure is pretty strong language in the medical world but it is the medical world that is using the term.

Now the bad news.  The two companies are not cooperating with one another, they can’t seem to agree on anything other than to disagree and in the meantime people are getting sicker and dying.  This is the classic battle over which company will make the most money when the two drugs are combined.

Here’s an Excerpt-The Street

Gilead, Bristol Put Profits Ahead of Best Care for Hep C Patients

“The new Hep C therapy at issue here combines Bristol’s Daclatasvir with Gilead’s GS-7977. Each is a single pill administered once a day. The results from this new therapy are nothing short of spectacular — an early cure rate of 100% for genotype 1 patients and 91% of genotype 2/3 patients, according to data from a mid-stage study announced Thursday at the European Association for the Study of Liver Disease (EASL) meeting.

A 100% cure rate for genotype 1 patients! Obviously, results can’t get better than that.

You’d think there’d be a rush to move the combination regimen of Daclatasvir and GS-7977 into a larger, confirmatory phase III trial, but you’d be mistaken. Amazingly, this most promising new treatment for hepatitis C patients may actually be discontinued because Bristol and Gilead can’t work together.

Good luck understanding why Bristol and Gilead can’t come together to help Hep C patients. The companies can’t even agree on the fact that the two companies are not agreeing”.

This is an incredibly important story and one that needs wide circulation in hopes of forcing these two companies to cooperate for the sake of saving lives instead of who can provide the greatest return on investment.  As mentioned earlier, Hep C affects about 200 million people worldwide.

Typically, to become infected with hepatitis C virus, the blood of an infected person enters the body of someone who is not infected. The most common way involves sharing needles or other equipment used to inject drugs. This kind of Hepatitis C infection is in the news now because an infected healthcare worker at a hospital in New Hampshire used needles on himself then left them for others to use.  Thousands may have been infected as a result and that investigation continues.

It is also possible, but less likely to become infected with shared use of personal care items such as toothbrushes and razors. Infection is also possible through sexual contact. Hepatitis C is not spread by casual contact, kissing, coughing, sneezing, sharing utensils, or breastfeeding.

Other people with greater risk of infection include:

  • People with tattoos or body piercing done with non-sterile equipment.
  • People who received an organ transplant or blood transfusion before July 1992.
  • People with clotting problems who took blood products prior to 1987.
  • People receiving hemodialysis or who have a history of hemodialysis for kidney failure.
  • People with HIV infection.

Since July 1992, all blood and organ donations in the U.S. are screened for the hepatitis C virus. According to the CDC, the number of hepatitis C infections declined by 90% from 1994 to 2006, partially as a result of this.

A diagnosis of hepatitis C infection doesn’t necessarily mean you need treatment. If you have only slight liver abnormalities, you may not need treatment, because your risk of future liver problems is very low. Your doctor may recommend follow-up blood tests to monitor for liver problems.

Hep C symptoms may include:

  • Fatigue
  • Upset stomach and diminished appetite
  • Joint and muscle pain

Also, patients may experience symptoms related to liver cirrhosis, such as:

  • Jaundice, which is a yellowing of the skin and eyes
  • Urine being a dark yellow color
  • An increased tendency to bleed or bruise

Treatment of chronic hepatitis C varies depending on the individual. A person with chronic hepatitis C may not need or benefit from treatment. Some people may not be able to tolerate treatment because of side effects.

Currently, the FDA has approved the following treatments for hepatitis C:

  • Pegylated interferon alfa-2a
  • Pegylated interferon alfa-2b
  • Ribavirin
  • Standard interferon alfa
  • Incivek
  • Victrelis

Common side effects of interferons include fatigue, muscle pain, headache, nausea, vomiting, weight loss, and depression, and changes to your blood cell counts. Side effects of ribavirin include anemia, skin rash, fatigue, and nose/sinus congestion so a new treatment with minimal side effects and greater effectiveness would be cheered wildly.

Liver transplant
if your liver has been severely damaged, a liver transplant may be an option. During a liver transplant, the surgeon removes your damaged liver and replaces it with a healthy liver. Most transplanted livers come from deceased donors, though a small number come from living donors who donate a portion of their livers.

For people with hepatitis C infection, a liver transplant is not a cure. Treatment with antiviral medications usually continues after a liver transplant, since hepatitis C infection is likely to recur in the new liver.

Now to our hero 61 year old Margaret Dudley of San Antonio, Texas.  Margaret thinks this situation is intolerable and she has launched a petition drive to encourage the two companies to work together to save lives.

Last fall, she was tested for hepatitis C she believes she contracted from some earlier tattoos.  “I had no idea,” Dudley said. “I had no reason to think it would come back positive, but it did.”

Then she found out about Bristol Myers Squib and Gilead.  “That’s basically what me and millions of others have been waiting for,” Dudley commented.  We’re asking these companies put best patient health before profits.”

She has several thousand on her online petition so far and says public pressure may spark the pharmaceutical companies to keep going with clinical trials.  Dudley’s goal is to gather 100,000 signatures by July 28, 2012, which is World Hepatitis Day.  We encourage you to sign the petition.  Just go to: http://tinyurl.com/cow2uwt  We just can’t let profitability trump human life.

Some of the information in this blog was drawn from the following sources.

http://www.hcvadvocate.org/hcsp/articles/Shaw-Stiffel-1.html

http://tinyurl.com/d55az86

http://www.webmd.com/hepatitis/hepc-guide/chronic-hepatitis-c

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative 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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

 

Yes, Brain Death Means You Are Really Dead!


Are brain dead patients really dead?  That’s the question many people are asking because of stories circulated by irresponsible journalists, TV shows and movies who seek sensational plots and people who just refuse to acknowledge the facts.

The simple answer to this question is, “Absolutely.  If you’ve been declared brain dead by a qualified team of experts in a hospital setting then you are dead.  The New York Organ Donor Network put it best, “There are more tests to establish death done on potential organ donors than there are on people who are not donors.”

There have been several stories circulated about how “Brain Dead” people have recovered and gone on to live normal lives. I have spent the last month looking into these stories and have determined that while one or two are unexplainable primarily because families won’t release medical information all the rest were simply not true.

I have interviewed two world famous neurologists who have written extensively about brain death and who were part of the process that developed the rules for making that determination. The protocols for determining brain death are more rigorous than for proclaiming death under normal circumstances. Every single neurologist, physician or other medical expert I’ve talked with has said the same thing, “No one recovers from brain death!” New protocols were established in 2010 to make the testing even more rigorous and they require the physician who is declaring brain death to fill out a check list to be sure every step has been completed. Again, this process is more rigorous than what is used to declare death under normal conditions.

Here’s the checklist that must be followed in order to declare brain death:
Cause of Brain Death:
________________________________________________________________
Date of Exam: ____________________________
Time of Exam: ____________________________
A. Absence of Confounding Factors: RESULTS
1. Systolic blood pressure > 90 mmHg ______________________
2. Core temperature > 36˚C ______________________
3. Negative for drug intoxication or poisoning _______________________
4. Toxicology results ______________________
5. Negative for neuromuscular blocking agents ______________________
B. Cranial Nerve Reflexes and Responses:
1. No spontaneous muscular movements ______________________
2. Pupils lightfixed
_______________________
3. Absent corneal reflexes ______________________
4. Unresponsiveness to intensely painful ______________________
stimuli, e.g. supraorbital pressure
5. Absent response to upper and lower ______________________
airway stimulations, e.g. pharyngeal and
endotracheal suctioning
6. Absent ocular response to head turning ______________________
(no eye movement)
7. Absent ocular response to irrigation of the ears ______________________
with 100 mls. of ice water (no eye movement)
8. Apnea PaCo2>60 mmHg ______________________
a. PaCo2 at end of apnea test
b. PaO2 at end of apnea test
C. Medical Record Documentation of the above Examination
D. Comments
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
________________________________
Certification of Death
Having considered the above findings, we hereby certify the death of:
_____________________________________________________________________________
Physician Signature Printed Name Date/Time


There will always be naysayers and people who “know of people who recovered” but I am satisfied after considerable research that when brain death is declared it is final.

Brain death is never declared by anyone with any connection to organ recovery and transplantation. The transplant team is not even aware of the patient until after brain death has been declared. The physician who declares brain death is independent of the recovery and transplantation team. Physicians who attend to patients on a regular basis are sworn to and legally committed to do everything possible to save your life. They are not part of the transplant team either and in many cases the hospitals where people are declared brain dead don’t even have transplant teams because they are not transplant centers.

To add to theevidence I have offered is this information from Stacey Gelowitz  Renal Transplant Coordinator at Alberta Health Services Edmonton, Canada Area Hospital & Health Care.  While she is in Canada the American and Canadian processes for declaring brain death are virtually identical.  Here’s what she wrote:

“At our center, we define neurological death by two criteria: irreversible loss of the capability for consciousness AND irreversible loss of all brainstem functions (including breathing). The protocol we follow for adult NDD is as follows:
Done twice by 2 physicians independently, who are not associated with transplantation
(1) Deep unresponsive coma with known cause
(2) Absence of confounding factors (eg. alcohol, tricyclic antidepressants)
(3) Temp > 34 degrees C
(4) No brainstem reflexes
a. No motor responses except spinal reflexes
b. No cough
c. No gag
d. No corneal responses bilaterally
e. No vestibulo-ocular responses bilaterally
f. No oculocephalic reflex (Doll’s eyes test; contraindicated in spinal injury)
g. No pupillary response to light bilaterally (pupils 6mm)
h. Apnea test, pH < 7.28 and PaCO2 > 20mmHg above pre-apnea test level
(5) If pt doesn’t meet all above criteria, do ancillary tests to show absence of intracranial blood flow:
a. Radionuclide cerebral blood flow study
b. Cerebral angiography
It can be hard for families to comprehend that their loved one is dead because the heart continues to beat spontaneously and the person is supported by machines so they look asleep. Important to note is that…
* No brain function remains (in contrast to coma/vegetative state).

* Heart continues to beat because of mechanical support stabilizing body, e.g. ventilators. Remember: Sinus rhythm is controlled by cells within the heart (SA/AV nodes), so as long as the heart is being perfused adequately (getting O2 via blood), it is happy to continue beating. Medulla oblongata in brain controls rate and strength of beat, but not basic rhythm).

* Blood still flowing to body organs (heart, lungs, liver, kidneys, pancreas) allowing transplantation if donor family consents, the organs are functioning adequately, and the potential donor has no serious health concerns

It is VERY IMPORTANT that the donor does not have any factors that confound the diagnosis of brain death. I think it is in these circumstances that brain death is (very rarely) wrongly diagnosed. A great website that you can refer to that touches on these ideas: http://www.braindeath.org/clinical.htm. It goes through different confounding factors and why physiologically in their presence brain death cannot be declared.

I have not seen any reports where pts recover from ‘brain death’ and it was not due to one of these confounding factors. We have gotten much better as a medical community at recognizing the suppressive effects of this list and know now not to declare brain death in the their presence. I think where patients extremely rarely slip through that can lead to wrong diagnosis of brain death is in the following two circumstances: (1) pts are on an unknown substance that is not tested for on toxicology panels and suppresses brain stem reflexes. Or, (2) a pt receives a drug in hospital (eg sedative to stop seizures or allow intubation) and the pt metabolizes the drug extremely slowly. The latter example (slow drug metabolism) is more applicable to children/babies rather than adults, but can happen in both (here is a case study from our center describing just that: http://www.ncbi.nlm.nih.gov/pubmed/19818943). As a result, the time in which brain death is declared was extended.

People need to understand that these instances are incredibly rare. If there is any doubt that one of these confounding factors is contributing to a wrong diagnosis of brain death, another tox screen or temp etc can be done to rule out such factors. Take a look at the cases people are presenting on reversible brain death. I would bet that all fall under what is discussed above. That said, some people will still stick to their guns and not believe you no matter how much info is provided, and that’s okay too”

If anyone needs more information that I have provided here I suggest you contact a neurologist at your nearest transplant center and ask him or her.  If you still doubt the process then perhaps you should not be a donor.

 Bob Aronson is a 2007 heart transplant recipient, the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of most of these donation/transplantation blogs on Bob’s Newheart.

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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Cheney Got a New Heart — Ethicists Need One


I am an average American male, human being.  I’m not a genius not gifted just a man of normal intelligence who likes to think and read and research and write about about what I’ve found.  Some things really stump me, though.   I’m terrible at math, I love physics but don’t have a clue about how any of it works, and even after spending a good many years as a professional broadcaster I still don’t completely understand how the sound and picture got from me to your radio or TV.  What mystifies me most, though, is the thought process of people who call themselves ethicists.  The word is even hard to say, you kind of feel as though you have developed a lisp.

Just so we are all on the same page here, it is important to define our terms.  First the Dictionary.com definition of ethics  http://dictionary.reference.com/browse/ethics

eth·ics

   [eth-iks] Show IPA

plural noun

1. ( used with a singular or plural verb ) a system of moral principles: the ethics of a culture.

2. (the rules of conduct recognized in respect to a particular class of human actions or a particular group, culture, etc.: medical ethics; Christian ethics.

3. moral principles, as of an individual: His ethics forbade betrayal of a confidence.

4.( usually used with a singular verb ) that branch of philosophy dealing with values relating to human conduct, with respect to the rightness and wrongness of certain actions and to the goodness and badness of the motives and ends of such actions.

Art Caplan of the University of Pennsylvania, the man who questioned whether the Vice President was too old to get a transplant, is a “Bioethicist.” The same Dictionary gives this definition.

bi·o·eth·ics

   [bahy-oh-eth-iks] Show IPA

noun ( used with a singular verb )

a field of study concerned with the ethics  and philosophical implications of certain biological and medical procedures, technologies, and treatments, as organ transplants, genetic engineering, and care of the terminally ill.

Having established who and what we are talking about let us return to the continuing saga of the Cheney heart transplant.  The ethicists are rallying behind their colleague Art Caplan.  One said, “The ethical issues are not that he (VP Cheney) got a transplant, but who didn’t?”

What an absurd argument!  That could be said about anyone who got a transplant.  if a 40 year old got a new liver, do we ask, “Who didn’t get the liver he just received?” I may not know much about ethics but I do have a clue about logic and somehow logic has been lost in the arguments forwarded by these learned people.  I wonder how well any of them would do on “Are you smarter than a 5th grader.”  Probably not real well being as that takes knowledge not philosophizing.

At the risk of sounding like a reactionary I have to say that some of these ethicists are the ones who got us in this donation shortage in the first place.  For years the ethicists have been telling us that the only ethical way to obtain organs is through the “Altruistic” system which is what we have now — people voluntarily becoming donors.   This method has been in effect since 1984.  The problem is that it doesn’t provide anywhere near enough donors to satisfy the need, therefore from 6000 to 7000 people die each year while waiting for organs.

The ethicists have met many times to consider alternatives to altruistic donation and each time after a great deal of philosophizing, consternation and speculation have found that the alternatives are, you’ve got it, “unethical.”

Now I’m no rocket scientist and don’t have a PHD or a fancy title like “Bioethicist” but I do have common sense.  It seems to me that if you are really concerned about ethics you would have to expand your thinking to a bigger picture.  These ethicists appear to have quit thinking about the problem when they reached their myopic conclusion.  They conveniently ignore the fact that people are still dying and will continue to die because they refuse to allow change.  Doesn’t that deserve some of their “ethical” brainpower, philosophizing and speculation, too?   It is amazing to me how strangely silent these “holier than thou” ethicists are about not questioning the ethics of allowing people to die.

There may be an explanation for their actions though and that explanation was found way back in 1931,long before transplants were considered possible.  You see, even then the medical community was having problems with ethicists who considered themselves to be “Experts.”  http://tinyurl.com/7c8fnho

Harold J. Laski writing in the London’s Fabian Society, manuscript in February of 1931, presented a challenge to the expertise of an “expert” in decision-making with the following:
:
“But it is one thing to urge the need for expert consultation at every stage in making policy; it is another thing, and a very different thing, to insist that the expert’s judgment must be final. For special knowledge and the highly trained mind produce their own limitations which, in the realm of statesmanship, are of decisive importance.

Expertise, it may be argued, sacrifices the insight of common sense to intensity of experience. It breeds an inability to accept new views from the very depth of its preoccupation with its own conclusions. It too often fails to see round its subject. It sees its results out of perspective by making them the centre of relevance to which all other results must be related. Too often, also, it lacks humility; and these breeds in its possessors a failure in proportion which makes them fail to see the obvious which is before their very noses.

It has, also, a certain caste-spirit about it, so that experts tend to neglect all evidence which does not come from those who belong to their own ranks. Above all, perhaps, and this most urgently where human problems are concerned, the expert fails to see that every judgment he makes, not purely factual to nature, brings with it a scheme of values which has no special validity about it. He tends to confuse the importance of his facts with the importance of what he proposes to do about them.”

I have no idea who Mr. or Dr. Laski was but his profound insight into the psyche of ethicists is a perfect reflection of my thoughts only articulated far more effectively.

I suppose there’s a role for ethicists to play in our society but at this point in my life (73 years worth) I don’t need a so-called ethicist to explain the difference between right and wrong to me.  I’ve not studied the great philosophers to the extent they have but living as long as I have and having had a heart transplant has pretty much instilled in me a set of values that I think are pretty solid.  That’s probably true about most people. We don’t need much help in making moral decisions.  Do we want information?  Sure.  Will we accept advice?  Sometimes.  Do we need to have ethicists make decisions for us?  Never!  Unfortunately they do and It has cost thousands of lives.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

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.

 Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission.  Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions.  This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

 Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

Ethicist Needs Ethics Transplant


In an op-ed piece on MSNBC Arthur Caplan a University of Pennsylvania bioethicist suggested that Vice President Dick Cheney received a heart transplant because he was rich and influential.  Caplan implied, too, that Cheney at 71 was too old for a transplant and that the heart should have gone to a younger person.  I responded with this comment.

Up until today I had some respect for Dr. Caplan but upon reading his uninformed and arrogant musings on Vice President Cheney’s heart transplant and senior citizens, I not only lost all respect I find him pathetic and in need of an ethics transplant. 

I am a long time Democrat, a very vocal opponent of Mr. Cheney and everything he stands for and a transplant recipient who got a heart at age 68 and I’m neither rich nor influential yet I believe the former Vice President got his heart in the same fair and balanced manner in which I got mine.  In that sentence I just negated all of Caplan’s arguments.

Had Arthur Caplan taken a little bit of time to understand the donation/transplantation process he might have a different story.

As much as I dislike Dick Cheney he got his heart fairly and am convinced that his wealth and influence had nothing to do with it. The only discriminatory factor that prevailed is that you must be able to pay for a transplant whether privately or through insurance. Yes, that leaves a lot of people out of the mix but that’s another argument.  He was insured just as I was. Had we matched bank accounts I would have come out on the short end but it was insurance that paid not private wealth.

The United Network for Organ (UNOS) Sharing in Richmond, Virginia (a site I’ve visited many times, has Caplan?) is a U.S. government subcontractor that coordinates all organ transplants in the United States.  It has done so since its establishment under the National Organ Transplant Act (NOTA) in 1984.  Its computer system tracks and continually updates the national transplant list which includes nearly 114,000 Americans.  It is a very sophisticated process and it is blind.  The information in the system does not contain anyone’s name or rank or social standing or wealth it has medical information and the location for each patient.

Having been on the national waiting list I think I’m familiar with the process of how you get there and it is not easy.  First you must see a specialist in your disease at a transplant center where you are subjected to battery of tests to determine two things 1) are you a legitimate candidate for a transplant and 2) is it likely you’ll survive after the surgery.  If the physician determines you meet those criteria he or she presents your case to a hospital’s transplant committee and, if they agree, the patient’s information is sent to UNOS for listing.  Please note, you cannot get on the list unless a specialist physician certifies that you are dying, that a transplant is a last resort to save your life and that you will survive the surgery.

In the United States there are 58 Organ Procurement Organizations (OPOs) they are the federally mandated groups that work with transplant centers  and UNOS to identify potential donors and then with families and hospitals to coordinate the recovery of the organ and its transportation to the site of the recipient.  They have no knowledge at any time of who the recipient is.

Once it is clear that there will a donor organ the process begins to match blood type, tissue, size and other factors.  The match must be as close as possible to in order to limit rejection of the organ by the host body (once transplanted rejection is further limited by powerful drugs). While the intent is to get the organ to the sickest patient, it doesn’t always work out that way because sometime the sickest patient is not a good match for the available organ.

Here’s an example.  I had my transplant done at the Mayo Clinic in Jacksonville, Florida.  My heart came from South Carolina.  I don’t know all the details but here’s what likely happened.  First the heart was offered within the immediate area served by the OPO but there were apparently no good matches.  Then it was made available to outlying areas and they found me in an area that was in the jurisdiction of a different OPO altogether.  I was not the sickest (wasn’t even hospitalized) and certainly at age 68 was not the youngest, and I know I was not the richest but I was a match and I got the heart.  It is just as likely that the same thing could have happened for Mr. Cheney. 

It is also likely that had Cheney not gotten the heart, no one would because it wasn’t a match.  I doubt that someone else was deprived of an organ because Mr. Cheney got it.  Also, there is the question of distance.  An organ will only survive for a limited amount of time once removed from a body.  It must be transplanted as soon as possible.  Mr. Cheney was likely the best candidate within the range of the survivability of the organ. 

 And finally.  It may not be important to Dr. Caplan that those of us over 65 have a chance at getting a transplant and living several more years but it is to us.  How dare he imply that we seniors aren’t worth the time, money and effort to save.  His arrogance and lack of compassion reflects poorly on his ethical character.  How can the ethicist say that a certain segment of the population is “disposable.”  Is that ethical behavior?   Better unlock that ivory tower door Dr. Caplan.  Let some fresh air in.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

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.

 Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have a PowerPoint slide show for your use free and for use without permission.  Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions.  This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound.

 Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

“RockScar Love is where “Scars R Sexy”


Amy Tippins spends every waking moment thinking about or doing something about organ donation, helping other people and spreading joy.   She is the creative genius behind “Rock Scar Love” which celebrates the scars we accumulate through life.  She views these scars as badges of honor and encourages everyone she meets to view them the same way.  Today’s blog is written by Amy with my encouragement and support.  Please heed her words and help out.  Bob Aronson

My senior year of high school was supposed to be spent figuring out which college was going to offer me the best swimming scholarship.  My emotions were supposed to be spent on fighting my mother and trying to earn my independence.

Instead of negotiating how to pay for the next four years of college  I was negotiating with God on if I was going to live through them.  For five years, I had been in liver failure due to approximately two dozen tumors that had been slowly killing me.  I was not fighting with my mother (okay, maybe a little), but my own body.  As a teenager, I was fully aware of my own mortality.

As I reflect on the holiday season that has just passed I am reminded, as I am every year, that I was told I needed a life-saving liver transplant during the week of Christmas 1992.  For the following two months I wondered if I would get my second chance and what it would look like?  1992 was before you could Google “liver transplant” on the web and most likely, it was before Al Gore invented the internet.  When I was evaluated for my liver transplant it was during a time that the long term success of organ donation was still unknown, but the need of for organs was not so desperate.  As my transplant doctor said, “We had more livers than recipients”.  What I did not know was how much my life was going to change in so many amazing ways because of organ donation and how through it I would find my purpose.

Two years ago, I decided to “pay it forward” for what I was given.  Therefore, I started RockScar Love Designs (www.rockscarlove.com) a company that celebrates scars.  We celebrate beautiful scars and the lessons they teach us.  Through my scar, I have come to understand who I am and why I am worthy of celebration and love.  Through my scar, I have come to love who I am and realize that transplantation was my path to opening up my heart to a love beyond my imagination…love for myself!

Starting soon, in late March, RockScar Love Designs and Live Wright Society, a non profit promoting people and causes paying it forward (www.livewrightsociety.org), will be sponsoring the “Scars R Sexy” campaign.  We will be sharing over 20,000 scar stories across the US.  This is not about a physical scar or one particular type of scar, but about all scars and the people who bear them from all walks of life as they embrace their journey and realize that their story is one to be proud of; that scars are something to be embraced as beautiful and that we should all rise up to say “I love my scar because it means I have won — because I have championed what has tried to defeat me!  I am amazing and beautiful for all that I have been through”.

In order to make this campaign successful, RSL and LWS need each and every person that reads this to share our campaign and what it means to you by going to our Facebook page and becoming a fan as well as sharing the page: http://tinyurl.com/7pz5t8w Scars R Sexy)   If you believe in anyone who has a scar of a physical, emotional or psychological sort, we ask you to be a part of this campaign by sharing it with everyone you know.  Without your support, our scars will remain hidden!

You can find RockScar Love Products at www.rockscarlove.com.  We offer t-shirts, baseball caps and multiple other items with a scar theme.  15-20% of all sales go back to charity with a focus on transplant and pediatric based charities!  I also dedicate large portions of my time to mentoring transplant patients, speaking at charity events, serving on board of NKF GA/AL and raising money for Camp Independence.

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.

Please view our new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

Also…there is more information on this blog site about other donation/transplantation issues.  When you leave this site go to our Facebook group, Organ Transplant Initiative and join. The more members we get the greater our clout with decision makers.

Help Your Caregiver — Get Your Own Glass of Water


When you are very ill or recovering from a serious illness or surgery our caregivers (spouses, partners, friends, relatives) have a most difficult task.  Being a caregiver can be physically and emotionally draining and strange as it may seem the patient may sometimes have to offer care to the caregiver.  Care in the form of consideration and gratitude.  Remember the expression, “When mamma’s happy, everybody’s happy?”  Same goes for caregivers.

As a heart transplant patient with a wife who would do anything for me and did, I can now reflect on my recovery period and easily see the number of mistakes I made as she tried so hard to meet my every need, and take care of the house while running two businesses.  To this day I have no idea how she did it and I will be forever grateful.  My ruminations on the subject led me to write the following advice to others who may be in the same situation now or who could be in the future.

Make it easy on your caregiver if you want to do what’s best for you.

  1. Do as much for yourself as you possibly can. If your physician says you can get up and walk around do it as often as possible. Get your own glass of water.
  2. Learn your meds. Know what they look like, what they do, how often you take them and when they must be refilled and do all of it yourself.  Plan ahead for refills and find a pharmacy that will deliver to you on short notice so no one has to go running after prescriptions at the last minute.  You can do it sitting and you don’t need a caregiver to do it for you.
  3. Know your condition.  When you talk with your doctor or coordinator take notes.  It is your job to know about your health you cannot and should not depend on someone else to “remember what the doctor said.”
  4. Make your own meals but be sure they are nutritious. You either just got a new organ or you are about to get one. Don’t cause further problems by eating and drinking the wrong things.
  5. Only ask your caregiver for things you absolutely can’t do for yourself. If you can’t drive, you may need a ride or the caregiver may have to run errands for you.  If you are on medication that causes some mental confusion or fatigue your caregiver should be involved such as in dealing with legal papers, insurance etc.  But you should take over these responsibilities as soon as you possibly can.
  6.  If you have children, especially young ones, you may not be able to get involved in strenuous activities. The Children need to know this and your caregiver may have to take on some of this responsibility…for awhile.
  7.  Before making any request of your caregiver ask yourself this question, “Am I taking advantage of my caregiver by asking — is this something I can do myself?”
  8. Show gratitude and consideration. Taking care of another person can be emotionally and physically exhausting. Tell that person how grateful you are and ask what you can do to make it easier on them.  Every once in a while, get a glass of water for the caregiver.

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.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

Also…there  is more information on this blog site about other donation/transplantation issues.  Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater  our clout with decision makers.  

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