Life After a Heart Transplant
What do terms like safety and quality mean for transplant patients? Is it making sure everything about the surgery is done right, there are no complications, and the new organ isn't rejected by the body, or is there more to it? My trade tends to push me to think mostly about measurable and definable consequences like deaths, infections, and side effects. I've done transplant stories, and I know about things like having to take drugs forever after surgery to keep the body from rejecting the "foreign" organ.
But I've never thought much about living day to day, month to month, year to year with another person's organ. The stories I've read and TV specials I've seen have fostered my assumption that beneficiaries of a transplant think they have been given a gift by godlike doctors who worked a medical miracle. And then, a few days ago, I read Sick Girl, written by a woman who got a new heart when she was only 24 and has struggled every one of the 19 years since. It shocked me. It was a revelation. I couldn't stop reading it. How could I have been so naive?
Amy Silverstein is not grateful. She is exhausted, often surly, and has seriously contemplated suicide. Every day is a rerun of the previous day's battles. Twice-daily antirejection drugs nauseate her and leave her suppressed immune system too weak to fend off even mild infections, necessitating frequent trips to the ER when a sinus infection runs amok. Her heart, transplanted from a teenage girl, is dumb; it has no nerves attached that tell it how hard or how fast to beat, so her resting heart rate is almost twice as fast as it should be. Two years ago when she needed surgery—another risk because of the possibility of infection—to remove a lump in her armpit, she told her loving, ever-patient husband and her heart doctor of 17 years that if she had cancer, she was ready to pack it in. The lump wasn't cancerous, but the thoughts of suicide remained. Enough suffering.
I had no idea, nor do I have any idea, whether other transplant recipients could relate similar accounts. (Consider this an invitation to tell me.) It's hard to imagine that Silverstein is the only one. Yet somehow Sick Girl, which is how Silverstein came to think of herself, is not a depressing book. Here I am, she says: I can be self-centered and angry, but I'm completely honest about my failings, I'm smart, and I'm funny. If you think I'm ungrateful, I'll understand.
It's a book that made me shake my head in disbelief with every chapter. What a potent reminder it was that quality is about more than walking out of the hospital alive.
Tags: heart disease | surgery | transplants | Amy Silverstein
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Transplant in AZ
My son has had heart problems all 18 years of his life. He has had his chest opened eight times. Plus many other surgeries. I do not think he has any idea how many lives he has impacted over the past 18 years. He has maintained an incredable outlook on life. He has been involved in clubs, church, and loves the outdoors. He has many plans for the future. He was active in sports and he keeps coming back time after time from each surgery. Coaches comment that they wish all of the players had his determination and drive.
This week he received a new heart. I can not express my gratitude to the donor who ever you are. He woke up yesterday morning. He is ok so far and we keep our fingers crossed. We have talked and he knows everything that has happen to him and that he has someone elses heart living inside of him. He wants to get out of here and graduate from high school this year. He is going to attend a community college for the first year and then he plans on going to a state college.
He has battle adversity throughout his life and he knows that he has been given a second go round. He will excell at what ever life throws at him. Ya, he gets depressed at times. Things are not always perfect. But we work through it and we always remember there are people out there that are not as lucky to have a son and dad relationship like ours.
I can not imagine life without him.
KEEPING IT REAL
Books are required to be niether inspiring nor positive. Some chose not to read the book and make unremarkable and derogatory comments, others read it in hope that a nugget or pearl of wisdom will validate or transform their lives. Just use the book for what it is. A written personal experience about the life and death struggle of staying alive. I am fully conscience of all that a heart transplant and the aftermath entails. The ultimate trial, some make it, some do not. Let us read her words and try to understand.
Re: The heart of the matter
Fisrt, to Shan of GA. I am waiting for a heart transplant in NYC and I realize that life will be very different after the surgery. Life however, is very different before the transplant comes as well. I only had a few days to live before I recieved a BIVAD to help circulate my blood. It has made a huge difference in my strength and the way I feel. My life has been spared once already and I am more than thankful. Shan, your post was on December 08, 2008 so you and your husband may have already had the surgery. I just want to say that I hope all is going well for you and your family. Hang in there and don't be scared. If all goes well and I am sure it will you both we'll be home and recovering. Always fight and never give up; life is always better than death.
And now number two, Amy's book which I have never read and will never read. Amy, you have every right to express your opinion but I sincerely hope that you did not write down your story so you could profit from it. Only a few people know if that was the case. I think you know what it is like to contemplate your own death while you were waiting for a transplant. It wasn't much fun was it? Are you having a better time now after transplant? From when this article was written, you had 19 years of additional life, would you trade this all in to be dead? I know what I am up against in terms of medication and that it will be very difficult. To wish for things to be like they were though is, excuse the word, whiny. Life will never be as it was before and you have to keep soldiering on. I know that two certain little boys and a wife depend on my return. I will do everything I can do to get home to them. The rest is in God's hands and as before, he will hold me close and help me through the toughest times. Amy, don't write a second book declaring that you have had a change of heart (sorry, I couldn't resist) but ask yourself if you truly feel that the past nineteen years were not worth anything and that those years would have been better spent in a cold, dark, sunless grave. I will never stop fighting and will certainly never wish for death. That was, I believe your alternative. I have to think everyday will be a good one. I have met two people here at the hospital who have had heart transplants and they look great. They laugh and joke as well as assure me that although it is never easy, it's good. Anyone who has a loved one awaiting transplant or if you yourself are waiting for a donor, hang in there and always, always fight. Life is worth it.
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U.S. News's Avery Comarow has been editor of the America's Best Hospitals annual rankings since they first appeared in 1990. His reporting on clinical medicine, from the latest cholesterol guidelines to robotic surgery, has been driven by the question: What does this mean to patients? And that is the perspective he brings to his observations and commentaries on the increasing number of programs by hospitals and other healthcare providers to improve care and patient safety.
