Regarding "Trial by Transplant" [October 22]: I'm 39 and was diagnosed at age 21 with hypertrophic cardiomyopathy.
I became more symptomatic at age 35 and found out three years ago that I am in the end stage of this disease and that a transplant is in my future. I am on the waiting list but am doing pretty well with the benefit of medications and a biventricular pacemaker/implantable cardioverter-defibrillator. In fact, I'm a Status 7, which means I'm on inactive status at this time. I attend water aerobics classes three days a week, lead a relatively normal life, and don't look sick. I picked up Amy Silverstein's book, Sick Girl, by accident. I never would have given it a second thought if not for the cover photo of her exposing her scar. I made it about halfway through before I had to give up on it for now. It is playingtoo much on the fears I already have. Transplant is sold as a second chance at life, but I think the messages are mixed. I understood that this is what Amy was trying to do with her book, and it hurt to read some of the responses that were posted on usnews.com. I feel she was condemned for not sharing the same attitude as those who wrote in. I believe that a certain mind-set is necessary to withstand the ordeal of transplant, and it's a mind-set that I don't know I will ever achieve. So, while I am glad that Amy is painfully honest, the experience of reading her book has upset me and has only done more to make a case against the transplant than for.
St. Paul, Minn.
If I were to have read this book as anyone other than a transplant recipient, I might have thought how ungrateful Silverman is. But I never once thought that. She is a compliant patient, just not a complacent one. That in no way restricts her to being sickeningly sweet while she is sickened to death by the medicines we take. I heard in her words many of the thoughts that cross my mind frequently. Am I less grateful for the supreme sacrifice made that I could continue my life? Of course not! Am I less grateful for the knowledge, dedication, years of training, and personal sacrifice made by all of the professionals whose care brought me to where I am today? Again, of course not. Like her, I do not mistake gratitude for the reality of my situation. It's not a choice whether or not to take our meds and follow the very lengthy (but necessary) rules of health and cleanliness. Do them or die. So we do them. But some of us are able to take off those rose-colored glasses and see the reality of our life for what is. Perhaps Silverstein errs on the side of being too truthful, and that scares some people.
I had a heart transplant 18 months ago. My mother had a transplant 13 years ago. Like any medical trial, we are called on to face our troubles with grace. While I had complications that caused me to have a second open-heart surgery months after the transplant, I was able to recover, and today I can do much more than I could before I received my new heart. I can run, walk up stairs, eat salty, good things, travel, stay up late, play with my dogs, enjoy my family and friends . . . and on and on. Doctors aren' t miracle workers (although they are pretty close). They can't fix everything; it's up to us to live our lives happily.
37 years old
I am very proud of Amy Silverstein for making the choice to fight for her life even though she has experienced many exasperating and depressing days. I think that I can identify with her because I, too, have a transplanted organ—my right lung. Before the transplant, I was literally close to death, and I knew that acquiring an "adopted" lung would be my only chance to live longer. After many months of desperately waiting and wondering what to do, I made the choice to have the transplant when the lung was offered to me, and I have never regretted my decision. Certainly I have had extremely difficult days in the past six years, but I am willing to fight for my life and recommend that Amy continue her courageous struggle to live.
Geraldine R. Cahill
Corona del Mar, Calif.
After 13 years, i am still in aweof the things my donor's heart allows me to do. If it were not for the gift of a heart transplant, I would not have been able to be with my kids when they got married, welcome my new grandson into the world, or celebrate 38 years of marriage with my husband last June. We all live with some sort of challenge—whether we are living with a transplanted organ or some other condition—but we can choose how to live. I have chosen to live with gratitude. I'm concerned that Silverstein's book will discourage both organ donation and organ recipients. Our daughter received a heart transplant in May 2006. My husband and I wrote a book about our shared transplant experience called Heartspeak.
I feel badly for Amy Silverstein because she is ill and unhappy and has had so many problems with her health since the transplant. She was young to have had a transplant. Maybe no one explained what life would be like for her afterwards. But I have had such difficulty with the book excerpt and her lack of thankfulness for the chance to continue living. My best friend, Paula, died at Johns Hopkins University Hospital about eight years ago because her transplanted heart and lungs did not function. Paula would have been so grateful for the new life, regardless of the pain and nausea. When she recovered, Paula wanted to ride a bicycle, which she had never learned to do because of her childhood health problems. I know that Amy is living with something that has a finite number of years, but she should be a little more grateful for this new life.