High PRA

[MooseMom]

My apologies for being thick, but I still have questions...

lola, if Otto's PRA is 100%, isn't that the highest it can get, ie, doesn't that mean he is as "sensitized" as possible?  What made him 100%?  Did he have a lot of blood transfusions?  I know he was never pregnant, so what made him so sensitized?  Or is that just the way he was built?

Okarol, I understand the concepts of high PRA and desensitization protocols, but I still don't understand how a person on the list is informed about his own particular PRA level...and when.  When Jenna was being evaluated for transplant, at what point did someone tell her, "your PRA is blah%, and that means whatever."?

I am assuming that PRA testing is why people on the list have to have monthly bloodwork...is that right?  If you have, say, the flu one month, does that translate into a higher PRA? Does any infection result in an elevated PRA?  Can your PRA ever go down?

[cariad]

My apologies for being thick, but I still have questions...

lola, if Otto's PRA is 100%, isn't that the highest it can get, ie, doesn't that mean he is as "sensitized" as possible?  What made him 100%?  Did he have a lot of blood transfusions?  I know he was never pregnant, so what made him so sensitized?  Or is that just the way he was built?

Okarol, I understand the concepts of high PRA and desensitization protocols, but I still don't understand how a person on the list is informed about his own particular PRA level...and when.  When Jenna was being evaluated for transplant, at what point did someone tell her, "your PRA is blah%, and that means whatever."?

I am assuming that PRA testing is why people on the list have to have monthly bloodwork...is that right?  If you have, say, the flu one month, does that translate into a higher PRA? Does any infection result in an elevated PRA?  Can your PRA ever go down?

MM, previous transplants can raise PRA, too. I know Otto has had a least one previous transplant. It only takes one occurrence of one of the risk factors to be unlucky and end up at 100%.

It looks like you won't be informed of your PRA value. Call and ask your coordinator. I would bet that your PRA is low, if not zero, because if it presented an issue, they would have most likely suggested IVIG to you by now.

As for what it means, it sounds like you know what it means. I have seen it broken down into rough categories: less than 30 is low, 30-70 is mid, 70+ is high. Hope this helps.

[paris]

I was told after several living donors were tested.  My understanding is they have to actually test your blood with others to see what your reaction is.  Mine showed I would reject everyone.  At one time they called it "anti-human antibody" .  I got a phone call when I was at dinner with my family from the transplant co-ordinator saying all donors tested weren't a match and it was nearly impossible for any kidney to be a match.  Great news over the phone!   It was 100% over 4 years ago and remains the same.   Last year I had IVIG and Rituxin infusions to try to change the PRA.  Unfortunately, it didn't work for me, but it does great things for most.     I send a blood sample every month to the center and it is tested against any kidneys that come available.  So, they are always aware if there would be a fluctuation.     
 
Mine was due to 4 pregnancies. My body looked at the babies as foreign objects and built up all those lovely antibodies.  I would never have known this if I hadn't needed a kidney.    Yes, lots of peoples PRA goes down.  A little boy I follow on facebook had a PRA in the 90's but had a  really bad Peritenial infection.  Now his is in the low 80's -- just few weeks later.   Another member here had IVIG and it reduced hers down to 8%!!   I hope this has helped some.  Keep asking questions.  It is the only way I learned what was happening to me.   

[MooseMom]

Cariad and Paris, thanks so much...your comments helped me understand more about this.  Yes, of course a previous transplant would result in a higher PRA; I should have thought of that scenario.

[lola]

Otto had his 1st transplant for almost 15years and was a good little boy getting his flu shot every fall, then fall of 2006 his boddy went crazy making antibodies after the shot and the antibodies turned around and attacked his kidney, at that time his PRA went up to 96%. Fall of 2008 Otto got his secound transplant won't go into details he lost it and now he's at 100%, and yes he got MANY blood transfusions with the 2nd kidney.

[cariad]

I was told after several living donors were tested.  My understanding is they have to actually test your blood with others to see what your reaction is.

I found out mine from UCSF when I asked. I needed a PRA below 30 to get into a clinical trial. I had all three major risk factors and was telling the nurse I assumed mine would be high. It was zero. It doesn't need to be tested against anyone's blood (mine wasn't). Later, when my PRA rose a bit (due to viral meningitis? or switching transplant meds? impossible to say) they sent me a report detailing what my specific antibodies were. I am going to ask Northwestern if I can get data from their test, which last said my PRA was 15 (before the transplant, so that's probably changed quite a bit).

At one time they called it "anti-human antibody" . 

There's a lovely, sensitive description!

[okarol]

I never knew Jenna's PRA before her transplant, but I learned about it here on IHD. So this time, after the rejection episode, I asked what is was. It is high now, even after all the IVIG, which they hoped might reduce it, alas, it did not.

[Jie]

The PRA and HLA are among the labs during the transplant evaluation (with about 9-11 tubes of blood for different testings). Ask for a copy of lab results and you will have everything.

[rocker]

I got a copy of hubby's first transplant eval lab series and it had a line "PRA: NEG".  I asked the neph "Does that mean 0???" and he answered "I assume so.  In medicine, negative is usually good."

But still, when I had my first donor test, it came back positive cross-match.  I told the neph at a clinic visit, with the nurse and the dietician and the social worker sitting there.  Everyone else went "Positive! Yay!" and the neph and I were sitting there sharing a look saying yeah, that's bad.

So I don't know why our blood is fighting if he's supposed to have 0 PRA, I assume there are other factors involved.  He's not listed yet, so I haven't asked if this center does any desensitivation.

  - rocker