I got the letter from the transplant hospital officially notifying me that I'm on hold on the transplant list. No surprise there - but it only reminds me I really need to make a decision
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IS there an online forum or blog or some site where post-transplant people have written about their experiences? If the doctors aren't talking it sounds like you need to find someone who's been through it personally.
I have no idea how useful it might be, but worth a look. There is also a page of what are called blogs but appear to be forum threads; didn't really look at them but some titles look promising. And the site is active; top post on the kidney transplant page is dated today.
I can't say for certain, because I really don't know when it comes to transplants... I can tell you that there were things about my jaw surgery they didn't tell me up front about some of the after effects. Nobody who'd had it told me - Including my Dr! The reason they didn't was because if I had known going in, I problably would not have gone ahead with it, even though I feel much better now than I did before I had it. (I'd already put it off for years because I was scared.) When I started to experience those effects after surgery I knew what was up, and why, but I felt safe enough in the hospital I was in and thought, "What Hey, I can't go back now. At least I'm awake & that means I am going to be okay." Having had 2 major surgeries, I can point out that the reality of any surgical situation is you are going to feel like crap before you feel better, but when you feel better you should feel a lot better.
Have you asked yourself, "How bad do you want the chance to feel better?"
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I've already asked.
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http://www.transplantbuddies.org/cgi/tbx/discus.cgi?pg=topics
I have no idea how useful it might be, but worth a look. There is also a page of what are called blogs but appear to be forum threads; didn't really look at them but some titles look promising. And the site is active; top post on the kidney transplant page is dated today.
I'm sorry they put you on hold.
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I can tell you that there were things about my jaw surgery they didn't tell me up front about some of the after effects. Nobody who'd had it told me - Including my Dr! The reason they didn't was because if I had known going in, I problably would not have gone ahead with it, even though I feel much better now than I did before I had it. (I'd already put it off for years because I was scared.)
When I started to experience those effects after surgery I knew what was up, and why, but I felt safe enough in the hospital I was in and thought, "What Hey, I can't go back now. At least I'm awake & that means I am going to be okay."
Having had 2 major surgeries, I can point out that the reality of any surgical situation is you are going to feel like crap before you feel better, but when you feel better you should feel a lot better.
Have you asked yourself, "How bad do you want the chance to feel better?"
I already know the answers aren't easy. *HUG*
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