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Author Topic: Help me understand how this new kidney allocation thing works  (Read 3333 times)
*kana*
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« on: March 28, 2015, 12:03:07 PM »

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
« Last Edit: March 28, 2015, 12:22:31 PM by *kana* » Logged

PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
okarol
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« Reply #1 on: March 29, 2015, 03:55:03 PM »

Do you know the average wait time for your center?
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
jeannea
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« Reply #2 on: March 29, 2015, 09:07:02 PM »

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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*kana*
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« Reply #3 on: April 04, 2015, 08:21:44 AM »

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.
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
Nx Stage-current tx
Diagnosed with SEP 2014
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