Transplant Patients Speak Out

Liver Tranpslant

My brother had a tranpslant in 03. It was horrible, he was in pain, he was miserable, there was no support from the transplant facility after he went home and he was living on pills that no one could explain what they did or why he had to take them. He made a patients choice to cease taking medication. He is happy today, he travels, he is basically independent, he enjoys meeting new friends, and for the most part he is doing well. We had a doctor tell us to our face that he is nothing but pirriah and he will never get any doctor to see him even for basic health care...and that man was right. It is sick that physicians do not support a patients right to make health care choices. My brother is doing better without the 20 pills a day, yet we can't even get him a general health doctor!!! Such egos on the part of doctors!!! After my brothers experiences I wonder do transplant patients actually need all those pills, is there some kind of aggreement between the docotors and the pill companys..or are the doctors to lazy to figure out which patient needs the pilss and which don't!!

Thank you, Amy.

I just want to say "thank you" to Amy for sharing her thoughts and feelings with us. I think it took a lot of courage to finally say what she was feeling. Everyone is different. We all have different opinions and feelings about things. She has given a voice to a group, perhaps it's a small group, but their feelings are valid nonetheless, of people for whom transplants have been difficult.

A young family friend just had her second lung transplant. I have absolutely NO IDEA what she is feeling. I'll bet she hides most of what she thinks and feels from all of us. God forbid she's ungrateful, afterall.

So thank you, Amy. Because of your book I will listen to her much more closely. And if she needs a sympathetic ear to whom she can voice her own resentment, confusion, anger, joy, etc. I will be that ear.

Liver Transplant

I too have had a transplant. It was a liver transpant a little over

12 yrs. ago. I agree with most of what Amy says. I had auto-immune hepatitis. I was ill for 10 yrs. before the transplant with many hospital stays involved and many problems.

I am extremely happy that I got my new liver from a wonderful 16 yr. old donor. If I hadn't gotten it, I would have never seen my three wonderful, beautiful grandchildren and my own 3 children grow up, turn into adults and have those babies.

My loving husband and I will celebrate our 40th anniversary in March. I'm grateful he stuck it out with me, many spouses do not!

I am now 60 yrs. old and never thought I would make it this far, but I'm told my liver is still working well. Yes, I was close to death a few time, I even went into a coma, (also never "saw the light"just darkness) and believe as Amy does, when you die, you die and are gone from this earth.

I applaud all the people who are wonderful enough to give life to others. I have had many good yrs. Yes, I have other problems because of my long chronic illness, but I have also had 12 more yrs. (and more I hope) of life that I wouldn't have had otherwise.

Yes, I wake each morning greatful for my life, yet, facing each day with chronic pain is daunting. My wiggley muscles ache constantly and I take a lot of pills to try to help it, although I am not allowed to take but a few because the others conflict with my anti-rejection meds. I have a hard time walking very far, but I hope to keep walking as long as I can.

Please, please, never think we transplant recipients are not grateful for our extended lives, because we definately are. Thank you.

Sick Girl: Amy Silverstein comment

Having just finished this very readable book I offer Amy my congratulations on her second career. Amy, you are quite a gifted writer and story teller! I will look forward to your next literary endeavor.

I would, however, suggest another focus for your attention. Nowhere in your book did you mention a higher power. Not once did you thank God for this gift nor ask for His help in dealing with the burdens associated. In fact, at your wedding, you praise YOURSELF for your success. Though it is a relatively small number of people who will ever experience the trials of organ transplant, there are many millions who can attest to the solid support received from a faith in the All Mighty, how ever He is called. There is more in this world than you and your caring family. Try prayer; you'll be surprised.

I loved your book!

I am a 41 year old 'Transposition of the Greater Arteries' survivor (thus well before Atrial Switch surgery). Yearly I have a barage of tests preformed that now are showing a slowly increasing loss of my right ventricle muscles', ability to pump blood to my extremities.

I know that as I age I will eventually require a pacemaker (as the increase of eptopic beats are becoming a factor), and then as heart failure kicks in, a heart transplant will remain the only option.

My husband and I also adopted a beautiful daughter and I'm greatful for the fact that we didn't go throught with a pregnancy as I know this would have shortened my life immensly.

I became a cardiac nurse because of my fastination of all things cardiac, but unfortunatly the rigors of nursing life proved to be just too physical for me. Although I have leant absolutely everything about my heart without rose coloured glasses or hopelessly uninformative laymans language!

I had always had an idea that a Transplant was the answer to my longer term health and once I had got through the recovery phase of the operation, then I would be fairly home and hosed. I knew I would have to take meds but the realality of just what that would intail was never outlined to me.

I would like to thank Amy for her wonderful book that I just could not put down and which has opened my tear filled eyes and made me relise that instead of thinking 'hey I'll get a transplant one day', I must make more of an effort to enjoy the good health that I now do experence and maintain my exercise level and my relaxed attitude to life...no stress!

As we say here in New Zealand "you go girl" I wish you all the best and give Scott a big hug as he is beautiful (I'm lucky that I also have a wonderful husband that is so understanding yet never lets me dwell, and didn't even notice my zipper scar when we first meet!!).

Right heart catheterization

To quote from the book Sick Girl:"Sometimes it has taken my doctor 30 tries, pulling the long catheter out of my neck and emptying a bit of heart muscle onto a microscope slide, then diving back in as many times as necessary to get a minimum number of usable samples." Where did this poor girl named Amy go for her heart transplant care? Sounds like somewhere in Bangladesh! Or is she exagerating? Come on Amy, 30 times! 30 times! I'm a heart transplant patient from Johns Hopkins (1998) and have done so well and have had several of these right heart catheterizations done in the first year, going down to two a year, and never had a surgeon or his assistant try to get a sample more than once. I once asked my surgeon, a very very well-known man, while he performed this biopsy on me, how long it takes for a surgeon to learn this procedure? "You want to know," he said. "Some never learn!"