Amy Silverstein's Reply

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I have not yet read Amy's book but soon will --I just found out about it and am eager to read it because I had a double lung transplant a little over four years ago and even without reading her book, I can certainly identify with what Amy is going through.
I need to say at the start that, like Amy, I wake up every morning and face the day with a sense of wonder and hope and elation. I am a lucky man, a 52 year-old with Cystic Fibrosis (an actuarial miracle in itself!) and I would bet just about every tranplant patient feels the way that Amy and I do, that no matter what life throws at us, we can take it and we are so glad to be alive!
Frankly, because I don't belong to any support groups or know well anyone else that has had a lung tranaplant, I thought my post-transplant experiences were the exception.
I struggle. I have severe digestive problems that are inconvenient at best and almost disabling at their worst. I ache all over, all the time, am tired most of the time, and juggle about 20 different medicines (I tell my friends that I take over 18000 pills a year, but who's counting? When I go to my pharmacy to pick up my RXs I often say, joking "just give me one of everything!") I have diabetes, and gout, and high blood pressure, and moderate kidney disease. I joke with a friend about having a disease for every letter of the alphabet.
But I can breathe.
I work selling TVs and electronics at a retail store in my home town and see many of the same faces who know about the transplant and ask, with genuine concern, how am I doing? My answer is always "Great!" because I am, despite it all.
I applaud wholeheartedly Amy Silverstein for writing "Sick Girl." People who haven't walked in her shoes, or were lucky enough to have had a easier path post-transplant should really be very hopeful that they never have to experience the struggles that transplant patients go through. The expression "if you've got your health, you've got everything" about nails it.
Life is hard. How you handle it makes all the difference, and Amy seems like she wrings the life out of every second of every day, which is what I try to do as well. Stay strong, Amy and thanks for speaking out.

Dave M. of NY 5:11PM November 30, 2008

I just read about Amy's story in Life Extension magazine and wanted to reach out to her, other people who have had transplants, and all people who have a chronic illness or difficult diagnosis.
I have not had a transplant, but I am permanently disabled by an FDA approved prescription drug, which I took when I was being a compliant patient. Because both of my parents had cardiovascular disease, my doctor had me on a statin drug (although my cholesterol was within the old norms, before the industry lowered the numbers), two blood pressure medications, and a diuretic. I felt lousy. So, as a health researcher, I started researching the drugs, the way they were to work in the body,how they affected body systems, and began to look for alternatives. However, I wasn't fast enough. The drug is no longer on the market, too many died. All statin drugs have the potential for creating muscle damage and weakness. Fortunately, I was taking Coenzyme Q-10, so instead of dying from kidney failure, I have damaged muscles and nerves that make walking any distance (a city block) or standing for more than 5 minutes very painful.
For Not Touched: Amy is a success story!!! Like Amy I have taken a proactive approach to my health. I now take NO medications. I watch my diet. AND I was inspired by Amy to push myself to exercise more even though it is difficult, tiring and painful. Amy was not having a pity party. She was telling people to speak up when your medical care doesn't feel right. Doctors are human, they make mistakes. You have to be vigilant and be responsible for yourself. I am healthier than I have ever been even though my life is limited by the disability caused by modern medicine.
In addition, instead of taking dangerous drugs for rheumatoid arthritis, I take no medications, am pain free and have no deformity.
Among the changes that need to be made in the health care system is the training of physicians in complementary medicine.

Joan Ripple of CA 8:22PM October 12, 2008

I am just finishing Amy's book and as a nurse I am thankful for the reminder that the medical community has a duty to educate and communicate with our patients. We often take medical procedures and language for granted and assume that your patients understand. Just because they don't ask questions doesn't necessarily mean they don't have questions. Sometimes they don't even know where to start and what to ask. We, as medical professions, and particularly nurses, need to actively listen to our patients, interpret body language and go the extra mile to ensure that they are comfortable with the information they have been given and the procedures they will undergo. After all, our number one role as nurses is to act as patient advocates. I would like to see this book become required reading for nursing students. Thank you, Amy, for a truly outstanding and honest portrayal of an event that very few of us will experience personally.

Deb Millhouse of WY 1:31PM June 01, 2008

I have been unable to put down this book until I had read it all. It took me a long time to read as I related to each and every paragraph. If I changed the names and some of the details, it would read as an account of my personal experiences as a kidney/pancreas transplant recipient. The big difference is that I had the most wonderful Australian doctors and nurses whose care for my physical AND emotional needs was fantastic. Thanks Amy for writing your story - it should make all of us a lot wiser!

Brian Myerson 9:05AM April 26, 2008

What I find most interesting is that nearly all of the people who criticise Amy Silverstein do so without having read the book. They hear she has written a book about her post-transplant life; they hear it's not all lovey-dovey; they judge: she must be an ungrateful, spoilt brat, unworthy of a donor heart. I personally have read the book, and I was never under the impression that Amy was ungrateful. Yes, her life is hell on occasion, but that is the price for her living at all. And she acknowledges that, and she tells us how happy she is as a wife and mother, and how much she has to live for still. How is it ungrateful to take the risk of telling the world to stop expecting transplant patients to swoon in glorious happiness any time anyone asks the simple question 'how are you?'

7:28AM March 03, 2008

I have watched freinds and family die form horrid disseases, with no hope for replacement, but certain death. You would think they would give up and whine , right ? Wronge. true inspirations like my father who was riddled with MS and lukemia for decade+ was lab rat for years. You dont think that hurts? Pain is part of the program, especially for those whose bodies are rejecting.
On the other side I sit and watch another friend who has a mechanical device running his heart, and he still drinks , smokes and sings in the band. I feel his being saved was selfish of him, since he has wasted the gift.
Was alwasy told if life dealt you a bad set of blocks , check out the ones the poor kids got..... meaning things can be worse, since allot of people cant even afford a heart, or even to be on that list, or what about those who are harvested for thier parts and sold on the black market. Supply and demand.
There is allot of speculation one can have, and expressing your experiances can seem selfish, but do motivate others. Leaders are normally loaners for a reason.......

WanMan of TX 5:53PM March 02, 2008

I have just finished Amy's book and I while I have not had a transplant, I understand the burden of having to put on a "face" to the world who wants to believe no matter what happens everything is "normal" and "fine". I say bravo to her for baring her soul and sharing her experience.
To all the critics, perhaps you don't agree, maybe you feel you would be different in her situation (may you never have to find out), or maybe you have been thru a transplant and find your situation was completely different (may you always be so lucky that it continue that way).
It is your perogative to not read the book, or to not agree, but it is not up to you to judge her attitude or feelings. Of course she is grateful. Having feelings that are not sugary sweet about the reality of her life, does not negate being thankful.
But until you've walked a mile.... I don't think anyone who hasn't can possilby understand what she and others in the same situation go thru every day to do the things that healthy people do with ease.
Thank you Amy, you made me care enough to find you today on the internet just to see how you are doing. It takes alot to lay your soul bare and you have done it in a way that is both heart rending and heart warming to those who read your book.

skemp of NE 8:12PM February 17, 2008

As a nurse I was quite shocked at how Amy was treated and how insensitive some of the medical staff was. Sure we have to be tough but not without compassion. I hope her book does become required reading because someday nurses and doctors will become the patient and would resent being treated like a child. As for the critics, you live with illness 17 years and you might be a little out of sorts too.

myrna tweedy of MO 9:38AM February 12, 2008

Amy's book is amazing. I find much inspiration in it - and my heart is perfectly fine (as far as I know). Amy's book is about the hell of chronic illness, specifically, in her case, a heart-transplant and the grueling after-effects of living each day with potent, life-saving, but also extremely toxic, quite awful drugs. It's too bad that certain people - spewing *their own* brand of extreme negativity and hateful judgement - accuse her of self-pity, of not being positive and other, ignorant, totally untrue things. Amy has written a very powerful book. Take heart in knowing that, Amy. Your writing - insightful, honest and also, at times, quite funny - is a real gift that you have given to this world, via your harrowing experiences and continued suffering, but also born from your strength, compassion, humor and intelligence. Your life has deep meaning for many reasons. Especially for those of us out there who want truth, not idealistic b.s.

Mara of NJ 12:07PM February 11, 2008

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.

Anta Podidomi 5:50AM February 01, 2008