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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Sick Girl Book
ok,here goes. bought this book for my husband for Christmas who is a heart transplant recipient of nine years. because he's pokey about his reading I started it first. Now I hope he never reads it! The book should be retitled Whiny Girl. I kept asking my husband if any of the side effects occured or bothered him and he just shrugs and says "you live with it". Little to almost none was ever mentioned about the cost of post transplant. My husband is disabled and I work a fifty hour week and skip on health insurance for myself so we can afford his SECONDARY insurance. Oh by the way; he is disabled (stroke) due to a cath incident with his pre transplant heart. He tries very hard not to worry or burden others. Amy Silverstien was abled to finish school, make a good living,and adopt a child. She is so blessed but mostly she whines and calls herself corageous.God forbid she should ever stuggle (and I do mean struggle; no trips to Mexico for us or fancy jewlery; just sweating rising insurance cost) Amy does not touch on cost because it she is still able to have a career along with a husband who has a great job. And her poor husband; sorry if my husband was that needy I just couldn't take it. It took her so long to realize he was suffering too? Maybe she should retitle the book Selfish Girl. I don't usually react this strongly but Amy needs to look around and see that her book really does come across as whining. No one ever said a transplant is easy but it's a heck of alot better than the alternative.
Not Touched
I have no intention of reading Amy's book for the articles I did read where enough as I barely made it through them. I hope she has taken herself out of her "self pitty" after all these years and stop looking at herself as the "victim".......You are not a positive success story.
It's normal when you are young to be confused and angry of such a situation. But there are hundreds of transplants and thousands of Chronically ill people who do not wallow in their misery.......but I guess they also do no not seek attention by writing a book in the hopes to have it a required read at Columbia Medical School. No one wants to read about a another sick patient with poor me sydrome. I could not endure listening to such a lecture!
There is nothing about your story that is amazing or inspiring......stop feeling sorry for yourself and live life......there are worse off people in the world, try visiting 3rd world countries who have nothing and are riddled with Aids and have a much better attitude and dont seek attention for it. Your book is not to help others, it's for your own ego, and believe me I will do everything in my power to make sure your book DOES NOT get into Columbia. Do yourself a favor and get a new shrink. I am sure this wont be posted as you will flag it as abusive, I highly doubt that I am the only one who has responded in this manner. I am sure you only save the lemmings who think she's an inspiration.
Being young and a transplant patient.
My life is amazing. It is full of parties and friends and fun, of laughter, of singing, of late nights doing nothing with friends and knowing that these are the moments why I fight to stay alive. But every day that I wake up is a searing battle of being a survivor. I know I am lucky. I have the money to go on an exotic vacation to celebrate my transplant...when I am allowed on planes. Most transplant patients are older when this happens to them.. Try being twenty. I am grateful to my medical team for keeping me alive and I am willing to keep fighting to stay alive but sometimes I just wish someone would acknowledge that my life is DAMN HARD. The boyfriends I won't have, the weekends I'll miss, the classes drop, I still get to be upset about those things, even if missing them is what keeps me alive. I am still a normal person even if I have someone elses organ in me. I get to make mistakes, I get to complain that life is not as easy for me as it is for some people. Many have it worse but many have it better. And as for the title Whiny Girl. How about just The Truth. Because this book saved me. Now I finally have someone else to talk to. And unless you are an Ivy Leauge educated overachieving divorced parent person such as Amy, who has their life turned upside down before the age of 25 then please SHUT THE HELL UP. Because you will never know what our lives are like. So unless you have something positive to say, keep quiet. Because Amy's feelings are valid...and you know what. So are mine. Feel free to respond to me.
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U.S. News's Avery Comarow has been editor of the America's Best Hospitals annual rankings since their debut in 1990. In his reporting on all aspects of clinical medicine from the latest cholesterol guidelines to robotic surgery, he has kept one question in the front of his mind: What does this mean to patients? That perspective uniquely qualifies him to observe and comment on the efforts by hospitals and other healthcare providers to improve care and patient safety.
