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Why I Decided Against A Lung Transplant March 18, 2003
Presented in that way, I just naturally assumed that when the time came, I would, of course, have one. The possibility of a lung transplant was the only news in that meeting that was not catastrophic, from my point of view. This occurred in 1983. In the subsequent 13 years, my lung function decreased as predicted. As a participant in the replacement protocol prior to the Food and Drug Administration's approval of Prolastin, I was receiving excellent care and tracking at the National Institutes of Health (NIH). A lung transplant was not mentioned again for seven years. During my annual visit to NIH in 1990 I was told that, if my lung function continued to decline at the same rate, I should plan to apply for a transplant in about one year. A year later, I had indeed, declined significantly and was referred by my Seattle pulmonologist to the Heart/Lung Transplant Center at the University of Washington. After evaluation, I was told that I should plan to return in six months to enter the lung program and begin the wait for the right set of lungs. Meanwhile, since twice my records had indicated only stabilization, but a modest degree of improvement during extended visits to Florida, I was told to return to the warmer climate in order to put off the surgery as long as possible. Four years later, I am still in Florida. Only within the last six months have I declined to the point where I am eligible for a transplant Meanwhile, the University of Miami has begun a lung transplant program and I thought, "Terrific, I can wait right here at home. The hospital is only about 20 minutes away." I set about seriously looking into what a transplant entailed, and what I could expect my life to be like afterward. I read medical journal articles and books. I talked to my Florida, NIH, and Seattle doctors, my close friends and, of course, my family. Initially, I made the decision to go for the transplant. I began planning all I wanted to accomplish before going on the list, because, "you never know when you might be called." Since I live alone, careful planning was required to get the decks cleared, so to speak, in order for me to manage on my own after the surgery. "Planning" evolved into extensive self-assessment of what I value most in my daily life, and indeed, that part of me that some call "soul" but for me is simply, "Who I am." One by one, as I looked carefully at how my life would change after a transplant, every reason for my getting one was eliminated. First, do I want to live longer? Of course, but statistically, transplanted Alphas live no longer than the ones who do not receive new lungs. Second, quality of life? For most, life improves significantly after the transplant because they can be much more active. The benefit of increased activity would be largely wasted on me because all my favorite activities are done slumped in a chair with my feet propped up. I love to read, watch movies, listen to music, hang out with my dogs, family and friends and last, but not least, my computer, my link to so many I love, and to the world, for exploring. Third, quality of health. I have read about the immune system, and watched how it relentlessly adjusts itself in order to slough off transplanted lungs in my Alpha friends, and a transplanted kidney in a diabetic friend. I have also lost several friends to AIDS, watching the varied horrors that attack the body when one's immune system is suppressed. In short, for me it looks as if I would be swapping emphysema for some other disease. My psyche can handle the path of known progression of end-stage emphysema far better than the anxiety I would have not knowing what will I get next. Fourth, not a good candidate for social reasons. I have been very lucky in life. The wonderful times far outnumber the bad ones. I will be 59 this Christmas and being an Alpha has made my life so rich, that I feel as if I've lived at least 85 years. Thanks to a terrific psychiatrist and Zoloft, I now live in peace, with no unfinished emotional business. I feel, that one with a life that has been as long, rich and full as mine should not take a set of healthy lungs that might otherwise go to one of our younger Alphas, who still have children to raise and educate, parents who may need care, and no time yet for this internal reconciliation of birth and death. * "Susan passed away in 2000. She was a special person and I felt blessed by knowing her". Cathy
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