I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: *kana* on March 28, 2015, 12:03:07 PM
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If this is in the wrong spot please let me know.
I have been patiently waiting for 6.5 years for an O+ kidney without even a false call. My PRA is currently at 0. I popped my numbers into the EPTS calculator and I got a 24% score. So for no fault of my own I am now being penalized for being on dialysis for over 4 years? That seems to be the tipping point between 20% and over. Now I get an extended grade kidney because they didnt find me a kidney when I was 38 and not on D yet with a 7% score. I cant stop crying thinking I am now being booted to the "gonna die soon anyhow, don't give her the best" group. I couldn't have done anything different....I have jumped through all their hoops, been compliant beyond most, followed all their "rules". Missed D maybe 3 times in 6.5 years due to severe circumstances beyond my control. I just feel shafted by these new allocation rules and can't understand how someone in charge didn't take those of us waiting for a long time into consideration. I can't even get an answer to where I might be on the list....they have been telling me for years that it shouldn't be too much longer. I figure I was getting closer to the top but now I'm probably pushed to the bottom again. The thing that is tough is to see people like my sister who was on the O+ list for 4mths and had a PRA of 80+ get a kidney before me. Mind you, I am happy she and others aren't having to go through years of D. It just makes me feel like this kidney game isn't working out so well for me and I don't know why. I just need some words of encouragement and help understanding the new system. Thank you kindly for reading my post.
So does 24% mean anything different then 55% or higher?
EPTS calculator http://optn.transplant.hrsa.gov/converge/resources/allocationcalculators.asp?index=82
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Do you know the average wait time for your center?
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PRA is a double edged sword. It's harder to find a match but if a match does appear you're more likely to get it than someone else. 4 years waiting is shorter than some centers, esp for type O. Are they telling you that you have to accept a kidney with problems? It sounds like you're in your 40s not 60s. I have not absorbed all the new rules but I suspect you need some help interpreting it all.
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Do you know the average wait time for your center?
Average time at my center is 4-5 years.
PRA is a double edged sword. It's harder to find a match but if a match does appear you're more likely to get it than someone else. 4 years waiting is shorter than some centers, esp for type O. Are they telling you that you have to accept a kidney with problems? It sounds like you're in your 40s not 60s. I have not absorbed all the new rules but I suspect you need some help interpreting it all.
My PRA is 0. I've been waiting for 6.5 years. I am 45 but the new system is against me because I've been on D for 6.5 years. If my number was under 20% vs 24% it sounds like I'd get a kidney rated better and sooner.