I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: 7piglets on March 22, 2008, 07:28:53 PM
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I was wondering because this is bugging the you know what out of me.. I knew 4 yrs ago I was going into kidney failure After my stillborn twins my creatine was 2.7 within the same year rose to 3.5 etc etc. I was not put on anything at the time other than Aranesp. No bp bills because I always had low bp ..I asked if I could go on kidney list and start the process and was told NO I had to be cancer free for 5yrs. (I had a recurrance of sarcoma/cancer same year) so this year finally allowed to go on list (but if you read my other post now they think I have sarcoma/ in my lungs arghhhh) When I was seen by drs' to do exam for list was told oh no you could have been on and earned time while we waited to see if you were cancer free oh and btw it is 2 yrs not 5!!) So I am looking at it like 1) I most likely could have received a kidney by now prior to needing dialsysi and prior to finding out cancer returned I think I get shaft there..Is this right ??
Now for my rant ....keeps bugging me any of you have no one offer to be tested to give you a kidney ..? I dont know it is just getting to me I would do it without thinking for any of my friends or family (if I could) I most liikely would tell them no because I wouldnt want them to go through it for me However, would still be nice to know the offer was there NO? or am I being a baby about this :)
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:grouphug; I don't have an answer for you. But I'm sure sorry about the cancer possibly being in your lungs. I'm pre-dialysis and was just activated on "the list" in mid February.
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Hard to say without know what doctors told you this. My first nephrologist didn't tell me about transplants, I started looking for myself and going to different transplant centers. My advice to anyone who may need a transplant is to consult with a transplant center to get all the correct information regarding who they accept to be put on the list, when to be put on the list, ect.
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I don't think you're being a baby. I think what you're going through is hard hard hard. I'm still hoping like crazy that it will turn out to be fluid and not a sarcoma. But you have been through so much pain and loss. With that administrative screw up on top of it, no wonder you're feeling messed over. And it's hard (for me at least) to keep on an even keel about people deciding to be donors or not. It's a really fraught issue for everyone.
Hope things start to go better for you.
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7piglets - I also am a cancer survivor. And I am almost 10 years out but I had to clear even more tests than normal because they wanted to make sure I was cancer free. The immune suppressor meds you need to be on after a transplant, I'm told, can really do you in if you have cancer when you get a transplant. (And, btw, "do you in" meant they could kill you.) Sad news - but that is what I was told by my doctors. I've also been advised I have to be more than vigilant regarding annual tests to make sure we catch a re-occurrence in a very timely manner.
Good Luck.
Sandyb
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skywalker thanks for info
We went over all thei meds (prior to kniowing cancer is back) and they have othe meds I could be put on that do not cause the problems with sarcoma as some other cancers so that wouldnt have been a reason to not let me on list.
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:Kit n Stik;
You're not being a baby at all! People just aren't educated on the gift of kidney donation. Some of my closest friends weren't even willing to get tested, however someone I barely knew got tested without telling me, was a match and donated without question. Just don't give up hope.