Amy Silverstein's Reply
Yesterday a lengthy sampling of readers' E-mails appeared in this space. They came from members of the transplant community—transplant patients or someone whose child, significant other, or parent has received a transplant. The E-mails followed my September 21 post about Amy Silverstein and Sick Girl, her new book about the harsher realities of post-transplant life as someone who has lived with a donor heart for 17 years. (An excerpt from the book appears in this week's issue of U.S. News and is also posted on our website.) Considering the personal stake in an emotional topic grounded in deaths that save lives, it isn't surprising that most of the writers were puzzled, sad, or angry. A few worried that the book might put off someone who might otherwise have signed a donor card. Silverstein took up my offer to respond to those who wrote. Her reply appears below. —Avery Comarow
I understand and appreciate the sentiments expressed in many of the responses to Avery Comarow's blog.
What I have done in my book is express an honest but perhaps unconventional view of living with chronic illness—in my case, post-transplant. I did not expect that I would be criticized, and sometimes vehemently attacked, for being "ungrateful."
I will say this here and forever with as much frankness and true emotion as I expressed in my book: I am grateful. My goodness, I am enormously thankful for my donor organ, for the love of family and friends, and for the support of doctors. When I wake each morning and open my eyes, my first feeling is one of relief for being alive—and this is quickly followed by genuine thankfulness for it. Then I get up, take a handful of medications, and carry out another day of post-transplant illness. But carry it out I do—and with strength, courage, and resolve to push through the unending physical challenges of my transplant body.
Do I feel angry sometimes? Do I feel at my wits' end when the post-transplant illnesses pile up and hit hard? Do I at times give in to resentment that I got sick at the age of 24 and have not lived a well day since my surgery? Yes, I do. And my book shows it—without sugarcoating. I am not always able to contain how hard it is for me. But regardless of my loss of grace and composure at times, my gratefulness for my beating transplanted heart is always steady and present.
Some bloggers find this hard to believe. How can I be grateful and yet complain? Well, gratitude is not a simple concept, nor is it an all-or-nothing sentiment. I would think that most any person living with chronic illness, post-transplant or otherwise, lives with a combination of gratitude and struggle. To suffer and to have a difficult time abiding endless illness does not erase gratitude. Nor does a transplant patient who gives voice to the frustration associated with chronic illness in any way discount the profound appreciation for the donor that gave life.
Will folks be less likely to donate if they know that I live with post-transplant illness that is sometimes overwhelming and difficult? I believe that many who read my book will be able to see that transplant gives life—even with the medical problems that accompany it. They will see my story and understand that I was just tiny steps from death and was saved by one thing and one thing only: a wonderful, miraculously donated heart. They will also see that in spite of my range of emotions about living sick in my post-transplant years, still I have been given life and have tried my very best not to waste a single glorious heartbeat—no matter how ill I have felt. I have pulled myself up and out the door—to finish law school, to marry, to be a mother, a friend, a daughter, a member of my community. They will see a life worth living, and a gift worth giving. They will also see a transplant recipient who has done her very best to live a life worthy of the unimaginable gift that has been bestowed by her organ donor.
It is possible to be hugely grateful and also be suffering. I have tried to be a proponent of the lifesaving fact of heart transplantation and yet also be an honest reporter of how it is for me to live the miracle. —Amy Silverstein
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Reader Comments
Amy's Book
I would like to thank Amy Silverstein for having the courage to share her feelings and experiences of post transplant life.
I received a kidney transplant at age 25, 12 years ago. Like Amy I was a healthy young woman when I started to go into Chronic Kidney failure, I had been relatively well up until this time so I went from a feeling of unwell to dialysis to finally a kidney transplant. I am extremely grateful that I have been able to live for 12 years and that a family made a decision to give the ultimate gift of love. But, sometimes it is hard to feel gratitude when your body is overwhelmed with nausea, an exhaustion you have never known before, all kinds of unexpected pains and the constant threat of cancer. Last year I was diagnosed with cancer and I continue to fight that battle. For the last 12 years I have fought the battle that is post transplant immune suppression and ongoing illness. For the last 12 years every day of my life I have gotten out of bed and attempted to make the most of every day knowing full well that in most cases all that my friends and family want to see is the grateful positive sick girl mask that Amy articulates so perfectly in her book. It is very very scary to be honest and open about how you really feel, it is also perfectly ok to feel angry, hopeless and upset when you feel like you are fighting with the body you are living in. It takes an extremly strong person to make the most of a life which has a great big expiration date on it and an even stronger one to actually remove the mask and be honest about how it feels every day. I personally have never been able to be completely honest with those that I love about how tough it is and after 12 years of living with a confusing mix of hopelessness, grattitude, love for life, hate for my body, perspective, confusion and clarity I am so grateful to Amy for writing something that so perfectly articulates how it feels. Thank you Amy for your words and for telling your story. Nothing is more isolating than living with chronic illness and I thank you for being another person in the world that knows how I feel.
Sick Girl Amy Silverstein
I have been living with a transplanted heart for 7 years and I can understand much of what Amy has written. I have never felt completely whole since the transplant, but the alternative was certain death. I was diagnosed in my early 40's and waited 3 years for my heart. At the end of the wait I had just about run out of gas, so the transplant was my only choice.
I have not had the nausea that Amy has had, nor the headaches. There are some annoying side effects like the gout I developed, but overall I can't complain. One thing I make sure of is that any procedures my doctors want to do is justified. I have not had a biopsy for 5 years, and this year I was catheterized to check my arteries. Good news was that all is good. I consented to this because the doctor explained the need to periodically check my arteries.
I hope Amy has tried other anti rejection medications. I am now on Prograf which has much fewer side effects than cyclosporine does. This may be worth a try, I know I have benefited from this medication change.
Thank you so much for articulating what it is like to live with someone else's organ for nineteen years. Thank you for articulating that while you are overwhelmingly, ridiculously, freakishly grateful, at other times you just want to curl up in a ball and cry because of all the shit that happens to you. I have an amazing life, one that I continue to fight for every day, but the key word is fight. Sometimes I look at the hell I have been through and can't believe I survived it, and even continue to survive it. I look at the thirty pills a day I take and wonder what cancer they are going to throw at me. I jump around and pretend that the pills, the insulin shots, the chemo I have to get for my rejection episodes, I pretend they are bumps in the road. But they make me angry, sad, and sometimes I really do want to give it all up. But then I see my friends, my family, my dog, my amazing beautiful school, and I realize how lucky I am. I have had a transplant for seven months. I am forever grateful to the donor family; but sometimes I really do look at myself in the mirror and go...why 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.
