On Wed. I'll have my only conversation with my surgeon pre-donation. I plan to ask him about things I've learned here at this forum; i.e., tying off the left adrenal gland....
Shelley,
I'm due to meet my surgeon soon, too (I think). I also plan to ask about the adrenal gland (being tired long-term is not so appealing to me, given my normal schedule). When I was hospitalized overnight last month for my testing, I asked the head transplant nurse, who did not seem to have any idea of what I was talking about.
Try to be as well-informed as possible, and be prepared (how, I don't quite know) for some defensiveness. Many docs are primed to resist any patient who begins by saying, "Umm, I read on the Internet that...." I haven't decided exactly how I'm going to phrase it, but I plan to be matter-of-fact, and ask the surgeon exactly how he knows what circulation actually remains for the adrenal gland after surgery, and how, if at all, the transplant center tracks its living donors' adrenal function.
Last week, I asked my transplant coordinator about ordering a baseline test of my adrenal function prior to surgery (an idea I came across somewhere on LDO, I think), and she seemed pretty unenthusiastic, saying that I can raise all these issues with the doctor when we meet. Fair enough.
But, nobody can give me any idea of when that will be (I don't have a date for surgery yet, either), and I don't like the possibility that all this will be rushed through at the last minute.
That's one reason I'm planning to make an appointment with a nephrologist (not affiliated with the transplant center) to ask these kinds of questions. I probably should have done it sooner (though, of course, not every nephrologist is very familiar with living donor follow-up). It's
not that I mistrust the transplant center. I do trust them. But keeping me well-informed is not their strong suit, and anyway I'd like access to my own information (plus a second opinion), beyond whatever information they get around to doling out to me.
Good luck, and keep us posted!
Snoopy