Transplant Patients Speak Out

Dozens of E-mails arrived in response to my Sick Girl post from others who have had transplants and begged to disagree with Amy Silverstein.

By + More

I promised to dip into the small flood of E-mails that washed up after last month's post about transplant patient Amy Silverstein, who received a donor heart when she was 25 years old, and Sick Girl, her new book that takes her to the present, 19 years later. It paints a picture of life after a heart transplant that is more complicated and darker than most other organ recipients, even if they felt the same, would care to reveal in public. Excerpts from the book are posted on our website.

A few letter writers were quite angry with Silverstein. But with just one or two exceptions, the several dozen people I've heard from so far have been articulate, thoughtful, and insightful (and almost every one gave me permission to post their E-mails).

Many of the difficulties that have confronted Silverstein for the past 19 years are much the same as those that most transplant recipients face. Others may feel as she does, to a lesser or greater extent, but are reluctant to say so. In my opinion, one of Silverstein's most important messages is that she might have been better equipped to cope if she'd had a reasonably clear picture of what lay ahead at the time of her transplant. Her reality would include endless infections, long bouts of exhaustion, and other daily challenges of living every day with a body that will never again be completely her own. But no one ever told her what it would be like. Wouldn't openly discussing ways to improve communication between medical transplant specialists and transplant patients possibly be helpful?

Here's a sampling of the E-mails, without comment. They speak for themselves, and very well. Silverstein has agreed to respond in this space early next week.

I had a bilateral lung transplant. I give Amy a lot of credit for putting her thoughts and emotions down on paper. I am sure her experiences will help others dealing with the same issues. Her book and the reaction to it may also raise the much needed awareness by healthcare professionals that pre- and post-transplant counseling and support should be considered a standard protocol.

—John Burke, Washington, D.C. I received my new heart six years ago at age 53. It has been a true miracle and given me my life back. I do take many meds each day. But many others do as well—diabetics, those who still have heart disease, those with high blood pressure. My doctors from start to present have all been magnificent. The entire transplant staff at the Hospital of the University of Pennsylvania are caring as well as professionally excellent. They are my second family. If I hadn't had this transplant, I would have missed the last six years. Thanks to the generosity of my donor family, I will have many more years ahead of me. I can't imagine anyone who has been blessed with this magnificent gift—the gift of life—being as negative as Amy is. I have never spoken to any heart transplant recipient who has felt as she does. I fear that Amy's feelings may discourage other heart patients from taking the risk and going for transplant. Worse, Amy's book could discourage potential donors from donating their organs. As I lived in the hospital waiting for my heart, I became very close to the others on the floor waiting as well. I watched some of my friends die because a matching heart didn't become available in time. I know they would have traded places with Amy in a moment if she was going to be so ungrateful for her gift.

The heart disease I had prior to transplant (hypertrophic cardiomyopathy) is inherited. A number of family members, including my mother, died from this disease before transplants were a viable option. Today, I am alive, thanks to this miracle and the generosity of my donor family. My cousin was transplanted two years before I was and is doing wonderfully. Two weeks ago, my daughter was diagnosed with the family illness. As you can see, my deep convictions on this matter go far beyond my own good fortune. It affects those I love most.

—Barbara Hoffman, Philadelphia I am a liver transplant recipient, not heart, but I'd like to share some of my experiences with you. I have a genetic condition that sometimes causes liver failure, and I received a new liver in 1989. Yes, that's correct, over 19 years ago. Did I have problems? Of course I did: infections, drug complications, fatigue, pain. I continued with my profession (scientist), survived to retirement, and now have a wonderful part-time job (teaching science). I have hobbies (garden, piano), do volunteer work (school), [and have] friends and a wonderful husband of 35 years. I take 20 pills a day, one Metamucil-like suspension, and an intravenous infusion monthly. Many of my meds are similar to Amy's. Would I do it again? In a heartbeat. The bottom line here is that if you love your life, you will do what's necessary to hang on to it. My mantra has always been: "Do you want to live, or do you want to die?" If you want to live, you will do what's medically necessary and put up with the side effects. Perhaps it's not her transplant that made her unhappy but something more basic.

—Florence Rollwagen, Bethesda, Md. I invite you to look at a blog I kept last year while my father waited for a heart. He received it April 20, 2006, and died Dec. 5, 2006. I updated our friends almost every day and still continue to as thoughts arise. His experience was not typical for a transplant recipient, and there were certainly times when I think he would've liked to throw in the towel. I believe the will to survive is a strong one, and the decision to take part in a transplant is not for the weak of heart (no pun intended)—it affects the recipient, family, and friends. I live in an age where it is no longer amazing that one can receive an organ; I have an uncle with a donated kidney, a sister in-law with a heart, a family friend with a heart, and a father who did the best he could. An acquaintance donated a kidney to a stranger simply because she could and it was a good thing to do. My children are used to the idea that this is what medicine can do.
—Pam Homan, Omaha My husband had a heart transplant in May of 2006 and is doing very well. We have three beautiful granddaughters who needed him. It was a long journey with many complications and many, many days in the hospital, but he is not sick anymore for the first time in 10 years. We are so appreciative to the donor family for having made the choice to donate this heart to him. Amy Silverstein should be grateful and thank God everyday for this miracle and second chance at life. We really cannot fathom her thoughts because our lives would be shattered without this new heart my husband received. We thank God for this miracle of life he received.
—Gin and Clyde Bowery, Lewisville, Texas I am almost 14 years out from my heart transplant and have had a very different experience. Maybe it's the difference in ages. I was 33 when I received my gift, I had a wife, two kids and a lot to do. I have had the normal issues, infections, fatigue, pain, etc. But when I consider both the options and the outcome, I can't imagine feeling any different than I do: grateful. Grateful to my wife for sticking with me, grateful to the donor family that saved my life, grateful to the doctors and nurses that kept me going until a heart was available, grateful to my family, friends, and church for not only helping out my family when I was sick but assuring me that whatever happened they would continue to support my wife and kids. I am one of the lucky ones. I not only got a heart; I am very healthy. I work full time, I am as active as I want to be, I feel really good most of the time, and I'm still here. I don't know what tomorrow will bring, and that's OK. I have today.
—Van Rice, Plano, Texas I am the proud, eight-year survivor of a liver transplant. Based on your article, I don't have to read Silverstein's book. I am ashamed of her. Not for expressing her pain and discomfort—for exploiting the effort and sacrifice of hundreds, probably thousands of people that made her life possible, not to mention the heart that was obviously wasted on her. She is clearly using her gift of life as a platform to put a negative and controversial spin on an ever evolving scientific miracle. How does this book help anyone but Silverstein? Isn't it ironic that this sob story was made possible by the very thing that gives her enough strength to complain about it?
—Scott Lintz, Sparks, Md. I am 62 years old, and I have had two heart transplants. The first transplant lasted 18 years and I am still working on the second, which I received in 2004. From the number of years this "sick girl" has had her transplanted heart, it is obvious that she was in the earlier period of heart transplants. She may have expected too much from the medical world. There are more and better anti-rejection drugs available now of which she and her doctor may avail themselves. She must be proactive in her medical care and forget the self-pity. There is nothing special about her. She had and has the choice about her transplant. It was not forced on her. And if she is so displeased about the heart, she knows very well how to solve the problem—stop taking her medications. All of us go through the same things and even the ones that hate taking their meds are still glad to be alive. I would venture to say that 99.9 percent of us are very grateful to our donors.
—Harry Danner, Plattsmouth, Neb. As chairman of a heart transplant support group, I have learned that anyone receiving a heart below the age of 40 or 50 is less happy than older folks—the younger, the more unhappy. This is due to the fact that they have not lived most of their life. Older folks are glad to have their life extended, and they deal more effectively with the medications and restrictions that come with the transplant. This differs with each individual, of course. People of all ages respond both negatively and positively, depending on their personality and their life experiences.
—Dick Harbourt, West Windsor, N.J. I have found that there are two kinds of transplant patients: those who were very sick with a chronic health condition for a very long time prior to their transplant and those who acquired an acute illness and needed a transplant sooner. As a person from the first category of transplant patients, I can attest that persons in this category tend to live a happier life post-transplant, the reason being that they view themselves as getting well after a long and difficult illness. Those in the second category of transplant patients still see themselves as ill after their transplant.
—John Burke I'm sure there are other Amy Silversteins out there. I regret her struggle and her pain, I regret her inability to be grateful, and I regret whatever medical mistakes may have caused her problems. That has not been my experience. I'm grateful for my immunosuppressant medications and to those who invented and prescribed them, as I am to all my physicians, nurses, caregivers, and my friends who supported me. And I'm grateful to the family of the person whose death made life possible for me, as I am to all of those in the organ recovery family who were the all-important go betweens. I've attached a file describing my quality of life after transplant. Surely my story is far more typical. I've taken control of my health and, with compliance to instruction, proper diet, and lots of exercise, I feel, at age 72, truly blessed, alive, and vigorous. Tomorrow may be another story. We recipients must live in the moment and to the fullest.
—Larry Slagle, Washington, D.C.