What Do These Numbers Read? I assume they are my antibodies?

[Cordelia]

What does this mean? This was my blood test results........I don't understand the terminology. My transplant coordinator was not helpful explaining and when she did try to explain it all for me, it went over my head. Please help me if anyone understands.

63 per cent Class 1

47 per cent Class 2

[MooseMom]

I've never seen anything like that.  I'm curious.

[cariad]

Yeah, that must be referring to antibodies. It means you are moderately sensitized (don't panic). They've taken the unusual step of dividing it into the 2 classes. Sensitization in Class 2 is slightly more serious, so at least that is the lower number. I am going to guess that you are sensitized to 63 percent of class 1 antigens and 47 percent of class 2, putting your overall PRA at 55%.

If that is the case, this means that your system will likely reject 55% of available donors immediately. Not great news, but it obviously could be much worse.

Do you remember anything the coordinator said, and could you share it? Perhaps some word will spark recognition.

[Cordelia]

Yeah, that must be referring to antibodies. It means you are moderately sensitized (don't panic). They've taken the unusual step of dividing it into the 2 classes. Sensitization in Class 2 is slightly more serious, so at least that is the lower number. I am going to guess that you are sensitized to 63 percent of class 1 antigens and 47 percent of class 2, putting your overall PRA at 55%.

If that is the case, this means that your system will likely reject 55% of available donors immediately. Not great news, but it obviously could be much worse.

Do you remember anything the coordinator said, and could you share it? Perhaps some word will spark recognition.

Thank you so much for explaining.    I wasn't sure if the numbers/terminology was 'different' in the U.S. I am from Canada...things are so different.

She told me some things but a lot of it went over my head, I wouldn't be able to reinerate it if I tried.        I sensed it wasn't the greatest news, but it's good to know, it's not the worst .........she said I had TWO antibodies against my husband's blood. We are the same blood type, type 0 positive, but she did tell me I had these antibodies against him. She did however tell me I'd have to have plasma exchange if I go forth with my husband wanting to donate.   I do know that separates antibodies from the blood.

They told me waiting on the list it would be a 4-5 year wait time from a deceased donor.

Much shorter with a live donor or a paired exchange transplant if my husband is not able to donate to me but can to someone else.

[Cordelia]

BTW, Thank you Cariad for explaining it in MUCH simpler terms!

[cariad]

My pleasure - just hope I'm not saying something totally false.

The immune system is so ridiculously complicated, but two antibodies to your husband does not seem like much, although if she thought it was serious, then I defer to her. When I was anxiously awaiting the crossmatch with my husband, we just kept asking 'positive or negative' which is when the coordinator said 'well, there are different levels of positive'. She seemed to be saying that you could show a weak reaction and still be able to receive a kidney from a donor? I have read up a bit on PRA, and it seems they are always finding new antigens to add to the list, so my guess is that that may have something to do with my PRA suddenly rising over the years: the test is much more sensitive than it was 6 years ago when I began this trek.

Sounds like your coordinator was describing plasmaphereisis, a method of desensitization. Just keep in mind that that doesn't always work, so you may want to consider jumping direct to paired exchange. Again, though, I am not the expert, so I could be way off in everything I've said.

Best of luck, Cordelia!

[amanda100wilson]

Whilst they may be finding more antigens because of increased sensitivity of tests, this also has the converse effect that transplants thatwere deemed unsuitable in the past, may now be considered suitable.  What I mean is that before a test would identify a,b and c antibodies as one type whereas now the tests are sensitivie enough to determine them as three different antibody types.  So in the past, someone could be sensitised to antigen a, but not antigen b so the transpant would not go-ahead, whereas now, by being able to differentiate between a,b and c antigens, would mean that this person would only not be able to receive from a donor with a antigens but one with b or c antigens would be a go.  Sorry if I haven't explained this very well, but this is my understanding from the explanation given to me by my transplant surgeon when I joined the Highly sensitised patient program at John Hopkins.  Of course, it may have been that he was trying to make me feel better in a near hopeless situation, since it was my husband that was informed that I was one of thhe most highly sensitised patients that they have ever come across ,but I was not told this.  My problem is, that not only is my PRA at 99% but Also that I am sensitised against so many antigens.

[cariad]

Whilst they may be finding more antigens because of increased sensitivity of tests, this also has the converse effect that transplants thatwere deemed unsuitable in the past, may now be considered suitable.  What I mean is that before a test would identify a,b and c antibodies as one type whereas now the tests are sensitivie enough to determine them as three different antibody types.  So in the past, someone could be sensitised to antigen a, but not antigen b so the transpant would not go-ahead, whereas now, by being able to differentiate between a,b and c antigens, would mean that this person would only not be able to receive from a donor with a antigens but one with b or c antigens would be a go.  Sorry if I haven't explained this very well, but this is my understanding from the explanation given to me by my transplant surgeon when I joined the Highly sensitised patient program at John Hopkins.  Of course, it may have been that he was trying to make me feel better in a near hopeless situation, since it was my husband that was informed that I was one of thhe most highly sensitised patients that they have ever come across ,but I was not told this.  My problem is, that not only is my PRA at 99% but Also that I am sensitised against so many antigens.

Oh, yes, this is what I was trying to say for the most part. It rather reminds me of the lumpers and splitters debate. There are some antigens that the medical community cannot agree whether to class them as separate antigens or the same. In cladistics, lumpers are people who favour fewer differentiated species and splitters are those who want minor deviations to be given their own classification. I sense it is the same idea with antigens - each person has hundreds, but there is no clear agreement on these sub-classifications and if they are even worth recognising.

This is just what I got out of an article I read some years ago, so again, not exactly gospel.

[Cordelia]

What does PRA mean? I'm confused. Thank you both for explaining, I appreciate any feedback!

[Cordelia]

Or rather, what does it stand for?

[cariad]

Also, Amanda, I am pretty sure Paris went to Johns Hopkins, and her PRA was as high as yours. IVIG did not lower her PRA at all, either.

She's had her transplant over a year, so they should know that there is hope.

[cariad]

PRA: Panel Reactive Antibodies. It's the name of the test that they run.

Also known as your level of sensitization.

[Cordelia]

Thanks so much!     

[Cordelia]

Thanks again everyone for your help, I really, really appreciate it!