Any hope for High PRA?

[Reesee132]

My PRA is 90. I realize there are people who are worse off than this, but that still feels like an insurmountable number. Not low enough to match fairly quickly but not high enough to get any priority either. It feels like I've landed in a limbo spot. Anyone out there who has a story to tell about being in this same space and what happened with your case? I always feel better when I hear from others on this site so thank you in advance.

[Drdetroit]

What is PRA? Never heard of it. I'm almost 9 yrs post transplant

[Lionkin in reply to Drdetroit]

Panel Reactive Antibodies, (blood samples of live donor & recipient are mixed to determine the PRA value) typically PRA has to be low (<10) , it can be zero (in my case), For Higher PRA number ... plasmapheresis is considered .. totally dependent on the transplant team of doctors and capabilities of the transplant center. Higher PRA number will lead to rejection as the donor or recipient antibodies will not accept the new kidney.

[WYOAnne NKF Ambassador]

PRA refers to the antibodies that are in your blood. The higher the number the harder it is to match someone for a transplant.

I never knew what my PRA level was. I am 21+ years post transplant. I just know that my deceased donor was a 4/6 match for antibodies. Of course in the '90's, had my transplant in 1999, they did things differently then they do now. I never knew my eGFR, because they weren't doing that test then

[Lionkin in reply to WYOAnne]

WOW 4/6 HLA matches ..you are blessed... Happy For You

[WYOAnne NKF Ambassador in reply to Lionkin]

Thank you! Yes I have been blessed, and that is why I am living well 21+ years later. Never a rejection episode. I guess it was meant to be!

Stay well!

[Lionkin in reply to WYOAnne]

Thanks, a miracle on your end, typically when a parent is donor to a child, typically it is a 3/6 match.

[WYOAnne NKF Ambassador in reply to Lionkin]

Ya, my daughter's were tested and of course were a 3/6 match. You get 3 antigens from your Mom and 3 from your Dad. You could have a perfect match from a sibling. They had told me that a 4/6 match was incredible from a non-family member.

[Drdetroit in reply to WYOAnne]

I was told my donor match was 1/6. I did not have BK Virus, but my deceased donor did

[Transplant2018 in reply to Drdetroit]

I spoke with someone who had a very high PRA. She underwent several weeks of plasmaphereis treatment to remove antibodies from her blood and then was able to have a transplant.

[Drdetroit in reply to Transplant2018]

I guess my transplant went well compared to some stories I see. I'm almost 9 yrs post transplant, but at first I didn't think it was easy. 2 rejections in 1st year. Catheter strapped to my leg for a week & had to drink 3 glasses of what I compare to drinking wet beach sand

[Lionkin in reply to Drdetroit]

any HLA match is good, whether in Class I or II, On BK virus, so far so good for you, hope it never surfaces.. but your Dr should be testing for BKV - let him decide the frequency, specially if your kidney function is stable.

[Drdetroit in reply to Lionkin]

I did have a couple rejections that lowered my GFR & raised my creatnine. I do blood work & test for Bk Virus monthly now. Thanks for the input

[WYOAnne NKF Ambassador in reply to Drdetroit]

My donor was positive for CMV, and I had never had it. I had to take antiviral antibiotics for a couple of months after my transplant. To this day if I run a temp for more than a couple of days they test for CMV

[Drdetroit in reply to WYOAnne]

Thank you , I have always taken an antibiotic M-W-F since transplant. Can't recall the name as I am at work

[lkhenderson]

I would love to share my story with you but it’s a little long to type. If you are comfortable calling me I would be more than welcome to talk to you. Are you on Facebook?

Keep the faith it can/will happen! I was 92 or 93, can’t recall. Transplanted 2.5 years ago.

[hmysel]

As a result of paired exchanges focus on finding a healthy donor. Here's more info: havingyourdonorfindyou.org

[mtwskk]

Yes you can get a kidney I was in the 90s and was told it would be 12 years before I received a kidney. I figures ok so what...lucky again. Who cares anyway and I figured I'd be on PD for a long time, well it wasn't so bad. I did say I'd take any comparable kidney as I has already rejected one.Two years later I received the call, it wasn't a good kidney extended and end of life, but the nurse said take it as it will be a long time before another one may come by. So I said yes, even though they said I'd only get one to two years off it. Well little did they know... it's now been 9 years and my Creatine is up and down best it ever was was 1.6 this mont 1.67 highest was 2.1 due to a bough with the BK virus. But yes you can get a kidney with a high PDA and even if it's extended and end of life (they can only use for like 24 hrs) after out of body. It can still be very successful. Good luck keep your chin up and believe.

[EricaTO]

I'm late to the party with this reply but maybe useful to someone. I had a high PRA (almost 90, if I recall correctly). I figured that meant that it would be hard to match. However, high PRA folks get priority, which I didn't know. My transplant center has a 8-10 year wait; after 5 years, I got the call and was shocked. Turns out that my donor kidney was a 6/6 antigen match (not related to PRA), so, as the doctors said, I "won the lottery"! In any case, PRA levels can change; initially, my donor kidney did not have anything that reacted to my antibodies, but they will test me again in October to see if any changes. Be hopeful!