I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: chiefsfan301 on January 19, 2011, 05:35:32 PM
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When the phone rings and the person on the other end says we have a kidney for you, it was removed from a patient who died in surgery, tested positive for hepatitis then retested negative and patient also had a tumor. ARE YOU INTERESTED IN THIS KIDNEY?
I was so shocked to receive the call I was lost as to what questions to ask, I didn’t ask about the tumor as to being benign or where it was located.
What questions do you ask?
I said no.
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Related thread "When the call comes.... What questions do I ask?" http://ihatedialysis.com/forum/index.php?topic=2799.0
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Thanks, thanks, thanks. The other thread gives me a starting list of questions. I was lost for words when I answered the phone.
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When the phone rings and the person on the other end says we have a kidney for you, it was removed from a patient who died in surgery, tested positive for hepatitis then retested negative and patient also had a tumor. ARE YOU INTERESTED IN THIS KIDNEY?
I was so shocked to receive the call I was lost as to what questions to ask, I didn’t ask about the tumor as to being benign or where it was located.
What questions do you ask?
I said no.
Given only that info, I would also have said no. Too many "what if's?" come to mind.
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I think I would have passed, as well. But congratulations on getting "the call"! I hope you get another one soon. :clap;
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^^
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It is my understanding that "extended criteria" is different from "high risk". At least, that is what my transplant coordinator told me.
I got "the call" several months ago; the donor was considered "high risk" because he had been living with his HIV girlfriend. Despite the fact that he regularly had himself tested, they couldn't guarantee that at that moment in time, he was HIV negative. That's waaaaay beyond "extended criteria"...that is the very definition of "high risk"!!
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Centers may call them by similar terms - here's an overview where ECD kidneys are described:
Where Does the Deceased Donor Organ Come From? http://ihatedialysis.com/forum/index.php?topic=21689.0
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Thanks for that link.
My coordinator didn't "discuss" anything with me when I was called. She just gave me the facts. I would think that if she counselled me one way or the other, it would have opened up the hospital to possible legal liability if I caught HIV after all. "Discussing" may be the protocol for the hospital in the link, but I suspect it may not be for all centers. This may be something to discuss in your pre-transplant evaluation.
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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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I didn't realize you had a transplant late last year! Congrats to you! Can't wait to get one! :waving;
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All i can say is what a bloody shame , to give it you with one hand and then snatch it back with another. :cuddle;