I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Potential Donors => Topic started by: LostWife on December 19, 2010, 06:43:35 PM
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Please tell me about paired exchange. Not sure we'd go in this direction yet but I'd love some information. Does every center do this? Our insurance only covers certain centers and I looked on http://www.kidneyregistry.org/transplant_center.php#contact and our center that's covered (Hopkins/Georgetown) isn't listed.
How do I get started? How long does it typically take to find the matches for the exchange? We'd ideally like to do this in summertime so I'm wondering if it is too late to start now or is now a good time to start?
Also, I am AB+ I keep thinking that since I am a "universal receiver" there will be less people out there looking for my blood type? What I mean by this (and this is my convoluted way of thinking) is if it was me needing a kidney, I'd just wait on the list, b/c wait times for AB+ are also fairly low, instead of asking my friend or family member to do a paired exchange. Or I'd be able to get a kidney from my friend/family member b/c I'm a "universal receiver"...but maybe I'm just being ignorant.
My husband is B+. I do know I am CMV negative, so that's at least a plus in my direction! Anyway -- thanks.
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I don't know a lot about paired exchanges, but I do know that not every center offers them. We have several big transplant centers here in the Chicago area, and paired exchanges have been in the news recently, done at Loyola and University of Chicago (I think, though it may have been Northwestern). One done recently at Loyola was a whopping big chain. My transplant center is Rush, and they have yet to get a paired exchange program up and running. So it really does depend upon the center. But I suspect we will see more and more of these types of arrangements because more and more people are needing new kidneys.
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The National Kidney Registry isn't the same as the UNOS pilot program. NKR is one of the smaller paired exchange groups.
Hopkins has their own paired exchange database, is participating on the UNOS pilot and shares HLAs with other centers. Call your coordinator and see if you are participating on these lists. You need to execute the necessary consents and have your donor screened.
The UNOS pilot program is the largest kidney pool available and started in October. As to the time to find a match, it depends on your PRA and HLA and if your husband matches anyone. My husband has a high PRA and we were tested for an exchange four months after the pilot started.
It can take a month to three to get you on the table once a match is found.
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Here are the facts – The National Kidney Registry is the largest and most productive paired exchange program in the world and has facilitated 238 transplants in the past 3 years. The UNOS pilot program has facilitated 4 paired exchange transplants since beginning operation in October of 2010. NKR facilitated 130 transplants last year alone, which is more than all the other U.S. multicenter exchanges combined and this does not count transplants facilitated by other exchange programs that are using the NKR software. Hopkins has facilitated approximately 100 paired exchange transplants over the past 10 years. NKR facilitated more transplants in one year (130) than Hopkins did in a decade. The average wait time in the NKR system is 11 months. Based on pool size and annual transplants facilitated, the average wait time in these other smaller U.S. paired exchange systems is approximately 4-6 years.
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I got into a chain exchange thru NKR within a week of being place on the list with my DH as my partner.. was transplanted about a month later...
it is a wonderful program!! I had pretty high antibodies about 70%
My transplant co-ordinator uses multiple lists/sources to find matches...
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Okarol: I thought Alliance for Paired Donation was the largest? They have 80 centers participating and are on with UNOS. I think you are right on the productivity. I did like it when NKF had an online HLA matching calculator that is now password protected. They had a kidney on there that looked good on paper for my husband a year ago.
Carol: That is fantastic! Congrats and I hope you are recovering nicely!
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LAWPHI: I do thanks..... I wish I could help everyone here get a transplant!!
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Hopkins found a kidney for Ham at 94% PRA after two months. He was only cleared last week after a stress test performed locally. We are part of a chain between Northwestern, Barnes and Hopkins to occur on Easter Monday. It also appears to be a negative flow crossmatch!
I also get the luxury of choosing my date to donate over the next few months.
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wonderful news!!!
what is a negative flow crossmatch??
It is good that you don't have to donate on the same day.. that was the one difficult thing.. having DH and i both recovering together... after about a week it was better and then it was nice to be off at the same time..
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Okarol: I thought Alliance for Paired Donation was the largest? They have 80 centers participating and are on with UNOS. I think you are right on the productivity. I did like it when NKF had an online HLA matching calculator that is now password protected. They had a kidney on there that looked good on paper for my husband a year ago.
The Alliance for Paired Donation does not partner with any hospitals in Los Angeles - so it's not even on the radar here.
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I am most likely adding words to the crossmatch. I should have mentioned T Cell crossmatch and B Cell flow crossmatch. It just measures the specific immune response to the donor antigens and pretty much depends on antigen match.
Okarol: Do you recall the study from the fall regarding cold times for shipping live kidneys? Do you recall if it is possible to ship a kidney from West Coast to East or if they prefer the donor travel?
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Hopkins found a kidney for Ham at 94% PRA after two months. He was only cleared last week after a stress test performed locally. We are part of a chain between Northwestern, Barnes and Hopkins to occur on Easter Monday. It also appears to be a negative flow crossmatch!
I also get the luxury of choosing my date to donate over the next few months.
This gives me so much hope. PRA 94 and still transplanted. Wonderful! My 25 year old son's PRA is 98
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Seriously, anyone with a high PRA needs to get to a plasmapheresis center for a paired exchange. Husband is nine months post transplant without a rejection episode.
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The benefits of a paied donor program is that rather than maybe having a transplant from your maybe less than favorable (in terms of match) live donor you can be paired with a better matching donor
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The benefits of a paied donor program is that rather than maybe having a transplant from your maybe less than favorable (in terms of match) live donor you can be paired with a better matching donor
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My transplant center has a share program. If I'm lucky enough to have a live donor come through for me, it's nice to know that the program is available to find the best match possible, if my donor isn't my match.
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Seriously, anyone with a high PRA needs to get to a plasmapheresis center for a paired exchange. Husband is nine months post transplant without a rejection episode.
:cheer: great news about your husband!! i am just over a year and so far mo rejection episodes either.. :2thumbsup;
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Carol: so glad to hear!