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If you have had an organ transplant then you may want to also become a member of these communities if they are applicable to your condition to share your experience:
Diabetes and Kidney Community
Kidney Disorders Community
WebMD Diabetes Community
WebMD Hepatitis Community
WebMD Heart Disease Community
Real Talk- Transplant Expectations
Lucibelladonna posted:
I am 22 years old, I had a heart transplant when I was 11 years old, and am currently on year 2 of waiting for a second transplant. Of course I've had struggles with the physical aspects of this life, but more annoying/persistent are the psychological aspects. I have dealt with feelings of insecurity and have doubted my self worth. How can I justify getting a second heart transplant when some die waiting for their first? I feel a constant need to live up to this expectation I've put on myself of :"this person died and I lived because of them, so I need to make every single day worthwhile and I need to accomplish great things so they didn't die in vain." This thinking gets very tiring. I don't feel comfortable talking to my transplant team about it because there is a horrible catch 22; I am supposed to be so happy that I am alive...that I can't have bad days. Transplant patients are only expected to talk about how lucky we are that we got a "gift" and a second chance at life. Is this supposed to carry us through depression and self-doubt? How is ignoring and covering up a problem with fluffy language helping anyone? Why don't transplant teams have "transplant psychologists"? Why doesn't anyone talk about how having your heart taken from your chest (or any organ) and replaced with a dead person's is a very traumatic experience...before it happens? Am I alone in these concerns?
NotAliveYet responded:
I think I know what you mean. I was 16 when I had my liver transplants, and it's been an emotional roller-coaster of disasters ever since then. I'm now firmly convinced I was not supposed to live past sixteen...that my successful transplant was a cosmic mistake. See, within the first two years after my surgery, depression and mood disorder set in so intensely that, I'm ashamed to say, they've led me down some very, very dark roads. I think you and I both had our transplants at a very tender age: earlier we could have come out a bit smoother. Instead, it sounds like you, like me, hit your transplant right around the time the normal teenage changes start. If you're like me, you're parents never once talked about any of this with you either. They dragged you to the transplant. You were too young to understand, and probably too sick, as well. Heaven knows I was too sick: too sick to know I was even dying. I finally, after seventeen long years of harboring anger toward my mother about the decision that she alone made, without even coming clean with me about the situation, confronted her about it. Her reasoning was that "you don't tell a minor they're going to die; it would be too traumatic." Maybe for other minors, but this minor was ready to die...what I was not prepared for was living, and as I say, ever since, I feel like everything I've ever done hs been a mistake. I love that you're questioning this "gift" though, because very, very few transplant patients ever seem to even see the darker issues. If you've had a transplant and your life has been saved, everything should be perfect, right?? Hardly! I was once essentially chased off of a "transplant support" website (see my first thread under NotYetAlive, my former username...I had to change it cause for days I couldn't get back on the site). The reason I was chased off? For declaring my profound depression and Despair. One thing I can recommend. It may not help much, and it will likely touch on some really deep issues...but I saw "My Sister's Keeper" over the summer, and it is just gorgeous. It quickly became my favorite fim ever. While not specifically addressing the issue of transplantation, the movie does delve into an issue no one wants to confront: that minors have a right to determine what happens to their bodies; that minors are people too, and, especially at the age you and I had our transplants, we had a right to at least have some say in what was to happen? And indeed, at the very, very least, as you say, we have a right to understand what is to happen before it happens...and what the repercussions are. Anyway, it's a pleasure to meet someone else who's wrestling with these same issues. I'm nearly 37 now, and though I can't promise you it gets easier, I can promise you that, every person, every voice, that raises these issues helps you to know that you're not alone...
Lucibelladonna responded:
I haven't read/saw "my sister's keeper" but I'll definitely give it a shot! There is a book called "Sick Girl" by Amy Silverstein about her experience with transplant life. The book does admittedly become a bit over-whiny and self indulgent, but the point definitely comes across. This book is considered so offensive by my transplant team! I mentioned it to my social worker just to gauge her response and she freaked out! "If that woman is going to complain about depression, suicide, and side effects, then she shouldn't have had a transplant. I can think of so many people who deserve it more than her". So that's where any conversations ended with them. It's completely unfortunate that I am to hide how I'm feeling from the people who are supposed to be keeping me alive. It sadly comes as no surprise to me that your post was met with such a strongly negative response. Its impossible for me to believe that we are alone in feeling the way we do, yet why is it such a taboo to talk about it all? No one is saying we want to give our organs back (although that may be the case at times)...we just want to be acknowledged as more than medical miracle stories. Living up to the title of "god's miracle" or justifying receiving a "gift of life" is just taxing and tedious and fake. I agree with you that had our transplants come earlier, before we knew what life was like before our experience, then things would be different. If I never knew what being completely healthy felt like, then I wouldn't have anything to compare it to. We had to deal with normal teenage issues in addition to being on crazy drugs and feeling alien in our own skin. Unlike you, I was told about my condition. I was told I was expected to die, and my mother actually asked me if I wanted a transplant. However, I feel it was done in a way that I would feel like I was letting my family down if I said no. I felt guilt about feeling peace with death. And like you, I harbored a grudge against my mother for not really giving me a choice, but leading me to believe I had one. Thank you so much for responding to this...I appreciate it. It's wonderful to know that I'm not crazy for thinking that other transplant patients are humans, instead of walking advertisements for perfection. It's comforting to know I'm not alone.
NotYetAlive responded:
Comforting for me, too, Luci. It's nice to finally meet someone else who feels much the same way. "My Sister's Keeper" is a best-selling book, but everyone I've known who's read it and seen the movie, says the movie's way better. In fact, the movie moved me so much, I not only never want to read the book, but I saw the film twice this summer. Alot of what you see might cut a bit close, as it did for me, but goodness, it's so, so beautiful. I've never heard of Amy Silverstein, but her book sounds fascinating, and it's ridiculous and tragic that your Transplant team is so closed-minded about it. A transplant is a complex, multi-faceted, ongoing experience with far reaching implications for all of life, so your social worker's attitude about this book...indeed, about your entire experience of mind-boggling. You're exactly right about those "God miracle" and "gift of life" labels, how tedious and taxing and fake it can all be. In fact, that whole thing was rammed so far down my throat that, when I emerged from my transplant at 17, on the threshold of college and going through all these physical changes, I wound up pursuing ministry. Six years of seminary...six years of service to three different congregations...and all along I was digging my own financial grave. I did it because I felt I owed it to God for all these second chances...but going into ministry only train-wrecked my life. I got out at the end of 2006, after 14 years of pursuing ordination, and will probably still be paying off ministry-related debt six years later. I have also had six rejection episodes. Well, I'm glad and relieved that you were told about your condition, Luci, but it doesn't sound like you were given any more choice than I was, so it definitely wasn't the purest of blessings, that's for sure. We were both ready to die, and very much at peace about it, but you were too anxious to tell your parents, and I was too sick to even know where I was much of the time, so you're right, neither of us was ever given a choice. The mom in "Sister's Keeper", played awesomely by Cameron Diaz sounds very much your mother...and mine. They wanted what they wanted...and any concerns of ours were casually brushed aside if even acknowledged aside. I won't say too much more about the film cos I don't want to give too much away...but more and more it sounds like it would really speak to you. Thanks so much for writing back, my Friend. There are others like us, I'm sure of it...just a matter of finding them. For now, I'm just glad to have found a friend in you, and that you've found one in me. Take care... NAY

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