It's funny reading this now. Well not funny, but interesting for me after my experience.
Initially I was told next to nothing. I got the call, they said we've got a kidney for you. Get your backside in here. I told them I was in dialysis six floors down, and they were like even better, we'll get bloods blah blah and you come straight up when you're done. I asked if they could tell me anything about the organ, eg: hep C? anything else? (I couldn't think).. they said no.
Of course I was so excited, surprised etc that I didn't know what to think.. certainly there was no reason to not say no (and in fact they didn't even ask if I wanted it or not at that point!). And over the next couple of hours I was busy phoning family and workmates etc to let them know what was going on.. etc
It was only about three hours later when I was in the ward and they were doing scrapes from my nose and stuff,bloods having a disinfectant shower etc that a surgeon came in and said "lolok you need to know that this kindney is what we call "suboptimal" - a zero match and I found out a little later a non beating heart donor. I didn't know what to think at that point. Do I say no and ruin my chance because they say that or do I go for it and take the risk? Well of course it was really a non choice, because there was nothing to suggest it wouldn't work - everything's a gamble. Even then at that point they did not ask me if I wanted the kidney or not.
So still later after I had farewelled family and was wheeled into the OR the surgeon came back and said that the kidney was arriving but they wanted to take a close look at it before proceeding because they did not know what "condition" it was in (and that gave me visions that this bloke had totalled his car or something and maybe it was half mushed). Indeed the doc said that they would prepare me so I was ready to go when they had finished looking at the kidney, but I may wake up without anything done if they decide it's not in a good enough condition. That's when they asked me to sign the consent form and all that.
That was the moment to decide. That was when I realised that really I put my faith in this team of professionals to make the best choice for me and that I had to trust their experience of them to make a informed decision. I said as much to him and signed the form.
It was only post transplant (after the surgeon returned and explained that when they looked at it they found it in really good condition and it was not an issue - of course Danny was all good!!
) trhat they bothered to tell me it was also CMV+ - now would I have accepted if I knew that? I don't know. It then transpired that I had two CMV tests in the last 10 years - one was +ve and one was -ve - the negative result being the SECOND test - which none of the docs could seem to explain to me. I presume they will test fior CMV again after six months or so to see if the Valcyte has killed it off or whatever.
Really though so far taking it has been the right decision. Not that it really was a hard one for me, but there obviously were some worries - specially when Danny was snoozing and not doing much in the first week since transplant and I spent more than a little time wondering if perhaps I should have said no.
Getting back to the OP - I think you made the right call for you. It would be so hard to say no when you get the call.. but if you feel it in your gut and your instincts say no.. then that is a decision you will be comfortable with in your heart. I think that is very important.
Hopefully the right one will come along shortly!
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