Life After a Heart Transplant

Sick Girl, Amy Silverstein

I was very disturbed by the content of review I read about the book, "Sick Girl" by Amy Silverstein. It makes me so angry to hear that she contemplates suicide because of her misery with a heart transplant. I have had a double transplant, kidney-pancreas, a little over 3 years ago at Loma Linda University in California. Being a transplant patient is tough and the medicine must be taken to survive, However, it is , for me, a miracle and my gratitude never ends for my donor, who saved me from a life on a dialysis machine and continued diabetic complications. I am not sick, I feel well most of the time. My life has gone on , miraculously so. Attitude is everything. Does Miss Silverstein understand that she would have been dead 17 years ago without the heart transplant? Has nothing happened in those 17 years that she cannot rejoice in? Suicide is a selfish act. I belong to a transplant support group (TRIO) and have met countless transplant people, including heart recipients. These people realize the magnitude of the gift of an organ and have learned to appreciate what is possible with a transplant and not bemoan what is not. I feel that this book is not in any way a representative description of most transplant patients 'lives and their attitudes towards transplants. Please consider talking to other transplant patients to balance your thinking about what a transplant patient is faced with post-transplant. We are NOT all Amy Siversteins.

Sick Girl

Please trust me when I say that I know what it's like to wake up every day and wonder why I even bother. I know it's going to be a horrible day where I feel like crap and so will the next day and the next day. To wake up and wonder where I'll be when the urge to vomit strikes. There is naturally anger and resentment and some days you just can't pretend you are the nice girl. It seems perfectly understandable to feel grateful to be alive but resent the state of your life.

However, there were some parts of this book that no matter how sick you are, just seem completely unreasonable.

If you sat back and really looked at things you would see that your Dr. Davis really worked very hard for you. That he just can't allow himself to be completely attached. That he works tremendously hard for all of his patients and does deserve to have a little time off. Can you imagine his life? Having this group of people that HE has to take full responsiblity for? They completely depend on him and he works so hard to not let them down.

Also for your poor husband. I think sometimes you forget that he did go through every last bit of this with you. He didn't feel what you did but you didn't feel what he did, either. The unbelievable emotional pain of watching somebody you love more than anything in the world go through something like can excrutiating. I like to believe that what you have in this book is the exception and not the norm when it comes to how you think of your husband.

"Sick Girl"

I am joining this thread of discussion rather late, but I feel truly qualified to comment because I see the issue from both sides. I had a kidney/pancreas transplant in 1998 after living with diabetes for 21 years. Overnight, I went from being a diabetic on dialysis to freedom from both. This was after the disease affected my vision, leaving me legally blind. During the seven-hour surgery, I experienced nerve damage which required physical therapy to allow me to walk again. There is no way to adequately describe the euphoria I felt as my body, emotions, and outlook improved. At last, I was "cured" of a disease I had accepted the inevitability of having it the rest of my life. The new pancreas would keep my blood sugar normal, no matter what I ate and I felt secure in knowing that while the damage to my eyes would not improve, it wouldnt get worse either. Five years later, the kidney failed and I found myself on dialysis again. My mother's hairstylist, who had never met me, offered to give me a kidney. Over the next several months, while she underwent tests to make sure she was a suitalbe donor, my vision grew worse. The diaysis lowered my blood pressure enough to reduce circulation to my eyes. It seemed like a cruel joke. Five years after I stop worrying about losing more vision, that's what happened. After the transplant, I fell into a deep depression. With so much time on my hands, all I could think about was my decreasing sight. Worry crowded out the gratitude and relief I knew I was supposed to feel. Guilt followed close behind, knowing what my donor endured and that she could see my sadness. I seriously contemplated suicide--something out of character for me, the optimist, the fighter. I held on and my life has been on an upward trajectory ever since. I have completed a book about it all and am searching for a publisher. I can understand Ms. Silverstein being fed up with the suffering. At times, it has felt like I had been given more than I could handle. Just as there is a wide variety of attitudes and personalities among healthy people, so it is with transplant recipients. She had the guts to tell her story as it happened, even though it wasn't always pretty. That's life. That's illness. I know that when my book is publshed, there could be a similar reaction to parts of it, though it also shows how a visually impaired person adapted to life situations, as well as kidney failure and transplant. Jim Fairbanks

A Child's Life After Transplantation

My daughter was transplanted a year ago when she was ten years old. Yes, there are side-affects. As one doctor told me prior to the surgery, " transplants aren't a cure-all -- you trade one set of problems for another". By that time, her major problem was that she was going to die without the transplant.

So she had the surgery and she and I deal with the side-affects. She has an almost-non-existent immune system and is often nauseated, tempermental and depressed.

But she can still sit on the porch and enjoy the sun, pet her cat, chat with friends online, watch a movie, walk around the block, enjoy music and laugh at a joke.

So, is her glass half-full or half-empty?

No matter what problems arise (financial and health-related concerns are always present) or what stresses she and I must face, the fact is she still takes joy in being alive and that brings joy to me.

Medicine cannot provide a whole new body. But a realistic attitude can help you appreciate what you have.

Suicide

Oh, by the way: The question of suicide needs to be addressed here. Amy makes a very good case for killing herself. What if I told you, Amy, that other suicidal people are "inspired" by stuff like that? I know you can't be that paranoid about writing. But unfortunately, it's true that a severely depressed person will consider suicide an even more viable option after reading words like yours. I can imagine that this book might have a bad influence on seriously ill patients who have also considered suicide. I'm sorry for raising this awkward topic, but I'm just saying. Suicide rates are a major issue in this country, especially for teenagers, young people, and the seriously ill. I don't like the way this book dealt with it.

life after transplant, the real story

I think people really do need to hear the other side of the story about transplantation. Its the hardest battle Ive ever had to go through and I did not receive the transplant my husband did.People want to hear the cheery so grateful for life story but untill youve lived this nightmare you cant possibly understand. It is a constant struggle for survival and family friends and others who just cant even confront the physical emotional spiritual and financial suffering that these people go through on a daily basis. The guilt they feel because they have a hard time contributing or pretending to have a normal life because your just supposed to suck it up and take it.Life can be good, it can have great moments but there can also be a bittersweet feeling about having a second chance and having it be the fight of your life. These people fought to stay alive long enough to get the transplant and have to fight every day after that because of the medications and fear. I hope to God that medical science will soon come up with a better solution for organ failure.

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.

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.

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.