3.23.18: a rebel alliance of quality content
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organ transplants
quandary for quality of life
by lucy lediaev

I work for a company that provides tests to optimize the success of solid organ and bone marrow transplants. My job requires that I do a considerable amount of research and keep up on the latest literature in tissue typing and antibody detection. Tissue typing is used to assure the best match between a donor and a transplant recipient, and antibody detection and monitoring tracks the immune system’s response to the “foreign” (donor) organ.

Based on my knowledge of transplants and the rigorous medical testing available to assure optimum results, you might conclude that I would be an enthusiastic advocate for organ transplants.

While I believe that solid organ transplants—heart, lungs, liver, kidney, etc.—are efficacious in many cases and truly a life saver, I think that there are many issues that need to be evaluated by potential organ recipients and their families. For me, the most important issues involve quality of life. The second issue that concerns me is the shortage of available organs and the difficulty of getting a good match for many people—especially those in under-represented ethnic minorities.

Quality of life is of concern both before and after a transplant. Before a transplant, the prospective recipient is placed on a waiting list. A number of socio-economic issues affect placement on a waiting list. Does the patient have insurance that will cover both the cost of the transplant and the extraordinarily expensive medications that are required after the transplant? Does he/or she have a stable home environment with someone to help care for them during the post-surgical period? In the absence of caretakers, can the person afford to hire nursing and housekeeping services during that period? Is the person addicted to alcohol or drugs? Is the person morbidly obese? The answers to these questions comprise the basis for evaluating a person’s suitability for a transplant. Clearly, a homeless drug addict is far less likely to get a transplant than a person with stable employment, a caring family, a permanent residence, and good insurance.

Typically, position on the waiting list is calculated using a number of patient characteristics, including age, the extent of the disease process, the amount of damage to the organ, time on the list, and so forth. This process normally results in the sickest patients being closest to the top of the list. While this makes sense in one way—the sicker the person is the more the transplant is needed; it does not make sense in terms of the potential survival of the recipient. It’s fairly obviously that the oldest sickest patients will likely survive for less time after a transplant than will younger, “healthier” organ recipients.

Not only do I regularly read the literature about organ transplants, I have had personal experience through my friend PH, who first received a liver and then later both a liver and a kidney. PH contracted hepatitis C in his youth from a blood transfusion. A notoriously slow virus, it gradually destroys the liver. When PH was in his mid-fifties, he ended up in an emergency room having nearly bled out from esophageal varices (varicose veins of the esophagus) that are one of the key symptoms of a cirrhotic liver. After emergency measures, PH went through a number of diagnostic tests that ultimately qualified him for a liver transplant. He had a successful liver transplant and, to some extent, resumed his normal life for a few years. However, he never regained his former vitality, and he was tied to an extensive and expensive drug regimen.

After about eight years, his liver began to fail again. In addition, the liver failure, the immunosuppressive drugs, and the development of Type II diabetes, led to kidney failure as well. PH was put on the list for both organs, although he had passed his 65th birthday. He waited almost two years for his double transplant, and by the time it came he was 67 and in very poor general health. In addition, we had begun to see that his illness was having a major impact on mentation, including judgment and both long and short-term memory. Nonetheless, he received a liver and a kidney from a single cadaver donor and left the operating room on full life support. He spent the next three months in the hospital—most of the time in the intensive care unit. First the new liver failed and was replaced, but to no avail. Then, the kidney failed and he was placed on dialysis. His condition deteriorated; he developed an aspergillis (a common fungus) infection in his lungs and his brain. His heart was erratic and could not maintain a normal rhythm without intravenous medication.

How do I know so many details of his case? His cousin, who lived almost 1000 miles away, and I had durable power of attorney for health care. The cousin, a pathologist, and I quickly concluded with input from other friends and relatives that PH’s quality of life had deteriorated to the point that we should implement his living will, in which he had stated that he did not wish to be maintained on life support or in a vegetative state. I wish I could tell you that the hospital immediately considered our wishes, but that was not the case. The doctors kept telling us to have hope in what we knew to be a hopeless situation. We could only conclude that PH’s excellent insurance and the doctor’s need to save face after having committed 3 rare livers and a kidney to him meant they were determined to play the numbers game to have him “survive” as long as possible after the transplants. Transplantation is, in fact, in many ways a numbers game. In addition, there is only one criterion for success of a transplant. Is the patient still breathing? Quality of life is not taken into account. After PH had been in the ICU for 80 days, we finally prevailed, and he was taken off of dialysis and quietly passed away a few hours later with friends and family nearby .

I’ve told my family and my closest friends that I would have to think long and hard about being a solid organ transplant recipient. First, with the shortage of viable organs for transplants, I feel strongly that younger people with family obligations should have priority over someone like me. I’ve raised my family; I am single. I am responsible only for two cats, who would quickly be adopted by my daughter or another family member. In addition, my chances for survival are likely less than for someone younger whose immune system and overall health are likely more intact than someone like me in her sixties.

My plan right now, if confronted by the need for a transplant, would be to refuse to be placed on a transplant list and to live the remainder of my days to the fullest. I know now that when you come out of a transplant operation, you are on full life support for a while. As one of the ICU nurses explained to me, it’s much harder to get medical personnel to remove life support than never to apply it in the first place.

I’ve lived my life well. I intend to live for another thirty years or so, based on family history, but if I’m faced with organ failure, I’ll live the rest of my days to the fullest and let an organ that might have been allocated to me go to younger person who needs it.


A freelance writer and full-time grandma, Lucy Lediaev retired recently from a position as web master, tech writer, and copy writer in a biotech firm. She is enjoying retirment more than she ever dreamed and is now writing about topics that are, for the most part, interesting and fun. She also has time to pursue some of her long-time interests, such as crafts, reading, sewing, baking, cooking, and the like.

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