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Author Topic: Your Score on The Waiting List  (Read 5746 times)
Restorer
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« on: November 01, 2012, 12:08:53 PM »

Yesterday I stumbled across the official policy for allocating kidneys. I read through it, and as written, it was fairly complex. I figured I'd summarize it and post it here.

Your "place" on the waiting list is more like a score, and it varies depending on the available kidney. Here's how you calculate your score.

- Your relative place on the waiting list, by time. The person at the very top of the waiting list, spot #1, who has been waiting the longest, gets 1 point. Everyone else gets a fraction of a point equal to their place on the list, sorted by time waited. If you're #200 out of 2000 people on the list in your area, you get 1800/2000 = 0.9 point.
- The number of years you've been on the list. For every full year you're on the list, you get 1 point. If you've been waiting exactly 2 years, you get 2 points. If you've been waiting 2 years and 11 months, you still get 2 points.
- PRA/Sensitization. If your PRA is greater than 80%, you get 4 points.
- Previous living donor. If you've previously donated a kidney, you get 4 points.
- Pediatric status. If you're under age 10, you get 4 points. Under age 18, you get 3. (This seems to confuse my nurses and techs, who keep telling me I'll get a kidney sooner because I'm young. 27 isn't young enough to qualify for any special treatment under the current system.)
- Your match with the donor kidney. As far as points go, they only count the two DR-type antigens. If there are 2 matches, you get 2 points. 1 match, 1 point. 0 matches, 0 points.
- There are no points for medical urgency, except in very rare circumstances, in agreement between all local transplant centers.

In addition, perfect matches go preferentially (and almost exclusively) to pediatric patients and patients with a PRA > 20%, whether locally, regionally, or nationally. If you would have received a kidney, but it was a perfect match for someone else with a raised PRA, you will get the very next compatible kidney ("payback").

Kidneys from donors under 35 go to pediatric patients first, unless it's perfect match for a sensitized patient (PRA > 20%), or a match for a highly sensitized patient (PRA > 80%) with more points than anyone else.

Edit: The official policy is here, under Section 3.5 - Allocation of Deceased Kidneys [pdf].

-----

That means that right now, I have somewhere between 0.1 and 0.15 point at CPMC and somewhere slightly over 4 points at UCLA. Come January, I'll get another point at CPMC. I have a long way to go.
« Last Edit: November 09, 2012, 06:19:13 PM by Restorer » Logged

- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
okarol
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« Reply #1 on: November 02, 2012, 01:57:28 AM »

Interesting, thanks.  :thx;
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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
drgirlfriend
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« Reply #2 on: November 02, 2012, 10:20:52 AM »

Thanks, Restorer! Where did you see the full official version?
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
bleija
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« Reply #3 on: November 02, 2012, 11:19:03 AM »

that is really interesting. im glad my brother was able to donate, being 21 and him 22. not that i wouldnt take a 35 yr old kidney, happy thqt i got a younger one. my creatinine was .95 last blood draw. :)
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Restorer
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« Reply #4 on: November 02, 2012, 05:15:17 PM »

Oops! I was going to link to the official policy, but I forgot to put that in. It's in the OPTN Policies, Section 3.5 - Allocation of Deceased Kidneys.
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- Matt - wasabiflux.org
- Dialysis Calculators

3/2007Kidney failure diagnosed5/2010In-center hemodialysis
8/2008Peritoneal catheter placed1/2012Upper arm fistula created
9/2008Peritoneal catheter replaced3/2012Started using fistula
9/2008Began CAPD4/2012Buttonholes created
3/2009Switched to CCPD w/ Newton IQ cycler            4/2012HD catheter removed
7/2009Switched to Liberty cycler            4/2018Transplanted at UCLA!
drgirlfriend
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« Reply #5 on: November 02, 2012, 08:48:51 PM »

Thanks for the links!
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
Deanne
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« Reply #6 on: November 09, 2012, 09:02:24 AM »

This made me wonder where I am on the list so I called to ask. Do most centers tell you your placement on the list? All they'd tell me is the scoring system, that they haven't yet tried to cross-match me with any donor, and that the average wait time for my blood type is about 2 years. I should've asked how many points I have, but I can figure that out for myself. It isn't hard to add up to 1.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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