Saturday, July 4, 2009

Health

Comarow on Quality Graphic

Award for Heart Transplant Writer

February 26, 2008 04:17 PM ET | Avery Comarow | Permanent Link | Print

Last fall I blogged about Sick Girl, a new book by Amy Silverstein excerpted in U.S. News, that looked back at nearly 20 years, often excruciating, with a transplanted heart. I posted a selection of the E-mails and comments that rolled in, most of them slamming her for ingratitude and immaturity. Finally, I put up Silverstein's response.

Sick Girl found an audience. Moreover, last night her story was selected as winner of the "first book" category in the "Books for a Better Life" annual awards sponsored by the New York chapter of the Multiple Sclerosis Society. The competition included books like surgeon Pauline Chen's Final Exam, an intensely personal exploration of the reluctance and awkwardness of many physicians, including herself, to connect with dying patients.

"I do think that the chatter has come full circle," Silverstein wrote in an E-mail to me, "culminating in an award that celebrates the book as one that makes a difference in people's lives. I couldn't feel more gratified and honored as an author and a human being."

"Over the past few months," she continued, "I have received hundreds of letters and emails from people who thank me for speaking their truth—a difficult truth about living with chronic illness. Seems lots of folks wear smiles and suffer silently with unending physical challenges because they feel that their friends, families, and even their doctors don't want to hear it. And, as we have both found through your column, they don't. 'Amy dear, shut up and take your medicine,' one blogger wrote to me in response to your initial blog. I have heard from so many people that it is the forced silence that makes their difficult journeys unbearable."

My Sick Girl-related posts have continued to attract comments, which, for reasons beyond my ability to grasp, strike a far different tone than most of those in last fall's outpouring. The vast majority laud Silverstein and her book for an honest, nuanced portrait of life with a transplanted organ. In the paperback version of the book, due out in September, Silverstein will append an afterword of several pages that addresses the public response to the book. How she handles her critics will be a fascinating read.

Tags: transplants | books | Amy Silverstein

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Reader Comments

3 heart transplants

My daughter has had three heart transplants. We are very greatful to the families of donors. She tries to live each day to the fullest. I have found that so many people think that just because you've had a transplant that you are cured. Nothing could be further from the truth. Believe me we greatly appreciate the opportunity to take meds for the rest of our lives (that means we get to live a little longer). No it's not easy for the recipients or their loved ones, but today it is worth it. By the way her 3rd transplant took place before she was 13 years old.

Sick Girl

Amy's trials I'm sure are real! And here reality is as it was and is now , her reality. I've walked the rough and rugged road, though not as rugged as in years past. I thank Amy for taking a chance and for helping all of us who day by day take on our challenge. A normal person will never know what we go through as heart transplant patients. Things that bother one is easy for another. I find Amy to be truthful about her struggles and truthful about her perception of them.

I was transplanted Oct 23, 2006, I had many experiences that frankly were not fun , but were necessary. I talked about transplant to everyone 'til their ears were red from overuse. then about six months ago. My wife said to me in the kindess manner possible,----"are you sure you're not living like you're sick? I realized, I was I also realized I had a sticker on my forehead "VICTIM" , that day I removed the sticker . I started living just like everyone else "One day at a time" I started a philosophy : Yesterday is a history lesson , and only serves to define the action I will take today , yesterday is over done , it is an educational tool ! The things I did well I do again , the mistakes I learn from , and am happy in knowing that today is all we have , I will do today better than I did before, successful days bond together into successful weeks, months,years, and even lifetimes .

I don't have time to define my aches and pains to others , I have only time to give to others that which I can an attitude that today is a great day to be alive! I will leave only memories behind of who I was not what I've been through ! I want to work to be the best I can be, I want to do the "most" I can do. Not complain about how I might feel -----PEOPLE ARE NOT HELPED BY MY COMPLAINTS ! AND I DON'T NEED SYMPATHY! I'm a Heart tranplant patient not a VICTIM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am a VICTOR over transplant! My job is to honor all those who have gone before me by giving of myself to the world and it's peoples , not to complain about the pain. Like childbirth , transplant was necessary in my life , I must honor myself , my donor , and their family. The pain is a personal thing , It's like being naked to others in public! People just don't need to see that!

In conclusion , I admonish all of you Normies and transplant Patients alike . Give to others of your undying love for others , think of them not yourself! Hold out your hand and embrace theirs , Greet one another with "It's a great day to be alive" ,we have the unique opportunity to care like we've never cared before , we have a great gift ---------------LIFE!

Stephen M. Harrelson

Greatful YES, where do I go from here?

The greatest gift I received was three days before my 42 birthday, a Heart! They had prepared me for everything except the side effects of the medicine that I will need to take the rest of my life. No one understands the mixed blessing. I am grateful for being alive, but sometime I ask, was it worth it. My husband believes it is. And I too. My favorite comment to friends is I am glad to be around to complain about my health. I know there is something I need to do, but I dont know what. Recovery is longer than I thought, I need to talk to others, share my feelings because I truly believe that you can only understand our problems, if you have traveled the same road.

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Avery Comarow

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.

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