Reposting two Epinions reviews about what it’s like to receive a donated organ.  I just thought of them today because I was looking up Amy Silverstein, author of Sick Girl.  I remembered I read and enjoyed her book… or maybe I didn’t enjoy it as much as I found it interesting.  I also read Claire Sylvia’s fascinating book, a change of heart.  Claire Sylvia’s book is a bit more on the new age side, plus she got more than one organ.  Fascinating read!

(Actually, this was reposted on the original blog… and because we were talking about Amy Silverstein last night, I’m posting them again.)

Heart transplant… the lousy gift of life?

Credit People magazine once again for inspiring me to read something new. A few weeks ago, I was reading the book reviews and came across one for Amy Silverstein’s 2007 book, Sick Girl. The review in People mostly praised Silverstein’s book about her life seventeen years post heart transplant, but warned that at times, Silverstein wallowed a bit in self-pity. I was intrigued by the description and was already ordering another book anyway. I threw Sick Girl into my virtual cart on Amazon.com so I could see for myself.

At the beginning of Sick Girl, Amy Silverstein describes helping her husband, Scott, and son, Casey, prepare for a long awaited trip to the Super Bowl. As she packs Casey’s suitcase, she contemplates ending her life. It’s 2005. Amy Silverstein is in her early 40s and has, for seventeen years, lived with someone else’s heart transplanted in her chest. She has far exceeded the life expectancy her doctors gave her when she got her heart transplant back in 1988. They told her she’d have ten years. She’d lived seventeen, enduring endless medical crises and procedures. Through it all, she’d never gotten well or felt like her old self. She’d been nothing but sick and tired. She doesn’t want to suffer anymore, so while her husband and son are out of town, watching a live game of professional football, she plans to stop taking her immunosuppressant medications. She hopes to be dead by the time they get home.

I read this introduction and inwardly groaned. The reviewer in People magazine had not lied; I thought to myself. The writing did seem a bit melodramatic and self-pitying. But I felt compelled to keep reading and by the time I finished, I had a rudimentary understanding of why Amy Silverstein wanted to reject the precious gift she received from an anonymous 13 year old Ohio girl back in 1988.

Amy Silverstein was a pretty 24 year old law student at New York University when she fell ill. She’d been having trouble with fainting and went to see her doctor, who told her to start salting her food because her blood pressure was very low. The salt cure hadn’t helped and Amy got worse. She went to the doctor again, who sent her for a battery of tests, the results of which ultimately revealed cardiomyopathy. It appeared that a virus had attacked and pretty much destroyed her heart. That was the end of Amy Silverstein, healthy girl.

Doctors told Silverstein that she needed a heart transplant. She managed to get one before her time ran out. Exactly one year after her transplant, she married her loving husband, Scott, who had fallen in love with her when she was still healthy. I found Amy’s description of her wedding day very poignant. People were so happy for her. They thought that 13 year old heart had cured her and she was the picture of health. They didn’t know that Amy had to break away from her party to take powerful immunosuppressant drugs that would make her feel ill and poison her immune system. The immune system is designed to keep a person well, but to Amy, the immune system was an enemy. She swallowed the poison and went back to her reception, trying hard not to vomit and spoil other people’s fun.

Later, Amy writes about having coffee with a friend and complaining about her recurrent sinus infections. She’d had eleven sinus infections in that year alone and was on yet another powerful round of antibiotics. Amy’s well meaning friend told her that she should do what AIDS patients do– take drugs to bolster her immune system. Amy told her friend that bolstering her immune system would kill her because it would destroy her transplanted heart. She tried to explain, but the friend just didn’t understand and wanted to change the subject. In fact, it seemed that no one understood what having a heart transplant was like. It seemed that everyone expected Amy Silverstein to be nothing but happy that she was still living, even though living meant that she was always sick and could rarely enjoy life.

Sick Girl offers a fascinating look at what it’s like to be an organ recipient. It really opened my eyes to concepts I had never considered– not that I had ever truly considered what it’s like to live with a vital organ that used to belong to someone else. On an intellectual level, I knew that transplant recipients had to take powerful anti-rejection drugs. But I never knew that living with those powerful drugs meant living with extremely unpleasant side effects. Though it certainly makes sense to me now, it had never occurred to me that those heavy duty drugs would force transplant patients to deal with endless infections, constant nausea, and eventually, the possibility of cancer. Essentially, having a transplant means trading one major health problem for at least one other.

One of the most interesting passages in Sick Girl is when Silverstein describes what her transplanted heart feels like when it’s beating inside her chest. Silverstein explains that transplanted hearts are not connected to a person’s central nervous system. The nerves are all severed when the heart is cut away from its original owner. So, something could startle Amy Silverstein, but her heart would not react until a couple of minutes later, when her adrenaline kicked in. By that time, the scare might have ended, but the heart is only just starting react to it in an odd delayed response.

I also enjoyed reading about how Amy Silverstein’s perspective changed as she learned more about her body. For years, she thought she was sick because she was suddenly stricken by a virus that had attacked her heart. She felt bitter because she felt like she’d been targeted by an unlucky random event. But one day, one of her old doctors surprised her with the news that she’d actually been sick from birth and no one ever knew it. As it turned out, she’d had twenty-four years of good health against all odds. She hadn’t been unlucky. In fact, she’d been extremely fortunate.

Despite my initial thoughts that Sick Girl would be a real downer, I ended up really liking it. Yes, it’s true that Silverstein does a fair amount of whining and is often very negative, particularly about the people charged to take care of her. But she admits that she complains a lot and, under the circumstances, it seems like she’s justified in doing so. Everyone seemed to think that she should be grateful for the gift of life, given to her by an adolescent girl whose life was snuffed out in a car accident. People seemed to think that Silverstein should soldier on without complaint, enduring every inconvenience and obstacle that confronted her, all the while with a smile on her face and courage in her borrowed heart. No one seemed to care about what it was really like for her. And no one wanted to hear that she was sorely tempted to reject her precious gift in favor of death. Suicide talk was definitely not cool.

Amy Silverstein was suffering. Had she just been dealing with garden variety depression, people would have told her to talk about her feelings with a therapist. But because she’d had a heart transplant, people seemed to think that Silverstein had every reason in the world to be grateful and happy. She had no cause to be depressed because she’d been given a second chance at life. It’s my belief that Sick Girl is Amy Silverstein’s chance to finally have her say with an audience of people who want to hear her and understand. In a way, perhaps writing Sick Girl helped Amy save her own life so that she could be there as long as possible for her husband and son and offer something to the world that would make living her difficult life more worthwhile.

I devoured this book in just a couple of days, finding it very hard to put down. Yes, there’s a lot of bitterness, self-pity, and whining in it, but I came away from it feeling very inspired. I would definitely recommend Sick Girl to anyone who likes good stories. In my opinion, Sick Girl gave Amy Silverstein her own purpose for living– to tell the world about her heart transplant and give them a new perspective instead of just living for the sake of other people. And that’s what makes it a very special book.

Amy Silverstein is still living and has written another book.

You took the part that once was my heart…

A few weeks ago, I happened to find a human interest story on the Internet about Claire Sylvia, a woman who underwent a heart-and-lung transplant to save her life from pulmonary hypertension, a deadly lung disease. I read with fascination about how, once Sylvia got her new organs, she found herself craving foods she had previously hated and was drawn to activities she once never dared to try. Further into the article, the author mentioned that Sylvia had written a book back in 1997. Intrigued by her story, I immediately went to Amazon.com in search of A Change of Heart: A Memoir, a book Sylvia co-authored with William Novak. I was surprised to find Sylvia’s book out of print since it was so recently mentioned in an Internet article. Luckily, plenty of used copies are still around.

Claire Sylvia begins her story by describing the illness that had led her to writing. In the late 1980s, Claire Sylvia was dying of pulmonary hypertension. She became the first person in New England to undergo a heart-and-lung transplant, receiving the organs of an 18 year old man who had died in a motorcycle accident. Suddenly, Sylvia’s body began to pulsate with life and vitality. She thought that with the supreme gift of life donated by the young man’s generous family, her worries about her heart and lungs were over. But as she recovered from the operation, Sylvia began to feel that she had gotten more than just healthy organs when she received a new heart and lungs.

Sylvia began to have dreams that suggested that the young man’s spirit was now inside of her. She began to crave green peppers, a food she had previously hated. One of the first things she asked for upon regaining consciousness was a cold beer, a beverage she had never enjoyed before the transplant. She talked to her doctors about these new feelings and they assured her that a heart was just a pump. It wasn’t possible to transplant another person’s spirit along with their organs.

Sylvia began to have vivid dreams about her donor. A few months after her surgery, she dreamt she met a tall, thin, blond young man named Tim. In the dream, Sylvia and the young man were good friends. As they part company, Sylvia feels that her business with Tim is not finished. She kisses him and realizes that they will be together forever. Somehow she knew the man in her dream was her donor. Unfortunately, the rules would not allow the healthcare professionals to reveal her donor’s identity, nor could her donor’s family know who Sylvia was. The officials claimed it was “for the best”. In fact, Sylvia already knew more than she was supposed to know.

Despite the good intentions of the medical staff, Claire Sylvia did eventually meet her donor’s family. She found them through a combination of research, common sense, and the clues given to her by the previous owner of her heart and lungs. And when she did meet Tim’s family, she learned why she was suddenly drawn to men who rode motorcycles and why she wanted to eat chicken nuggets, a food she had once detested. Though the medical staff had warned her that she was “opening a can of worms”, Sylvia found herself welcomed into Tim’s family as if she were one of them.

My thoughts…

I found Change of Heart fascinating to read. With the help of her co-author, William Novak, Claire Sylvia has written a beautiful, heartwarming story about the wonderful gift of organ donation. And while some people may dismiss her story as new age bunk, I found it astonishing and hopeful.

On the other hand, while I found Claire Sylvia’s book very inspiring and interesting, I also wondered if she wasn’t sugar coating her experiences somewhat. A few months ago, I read and reviewed Sick Girl, another book about organ donation that presented it in a very negative light. Amy Silverstein, the author of Sick Girl, was brutally honest and quite negative about her heart transplant experience. Silverstein wrote of horrible side effects from drugs, constant sinus infections, and never ending worries about developing cancer.

Claire Sylvia’s book, by contrast, is overwhelmingly positive. She barely mentions the powerful drugs she must take every day to ward off rejection. She doesn’t mention the inconvenience of frequent visits to doctor’s offices. She almost makes her transplant out to be a desirable experience, as if by having someone else’s heart and lungs, she’s somehow more evolved as a human being.

Don’t get me wrong. I’m glad Claire Sylvia is so positive about her transplant. I’m am pleased that she’s grateful and she’s been able to make peace with her donor’s family. I am happy that she’s been able to find answers. I still can’t help but wonder if her experience has been all miraculous. I also wonder if her experience is common among transplant recipients. Would someone reading this book after having a transplant also be able to relate?

Anyway, I’m glad Sylvia wrote her story. I found it well written and very moving. It gives me hope that all of the things I learned about faith in something beyond the tangible and obvious could be true. It also gives me faith that perhaps it doesn’t matter what religion a person is. Claire Sylvia is Jewish. Her donor was Catholic, as is the rest of his family. And yet, despite their different religious beliefs, they are still able to share in something amazing and faith affirming.

By the way, according to the news article that prompted me to read A Change of Heart, Claire Sylvia, who is now 68 years old, also had a kidney transplant in 1998. Her transplanted kidney came from her ex boyfriend and ballroom dance partner. Apparently, after that transplant, Sylvia developed a fondness for cooking and started baking things for her donor. He told her that she cooks just like his mother used to.

I would definitely recommend this book to anyone who enjoys inspirational memoirs and those who can believe that cellular memory can last beyond a person’s death. Claire Sylvia’s got a great story to tell for those who want to believe it.

Claire Sylvia passed away August 19, 2009, 21 years after her transplant.

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