The Waiting Game... Again

About two weeks ago I  got a blood draw to see just how many antibodies I had. Well we found out that my PRA (panel reactive antibody) is at ”Transplanting organs into recipients who are “sensitized” to the organs significantly increases the risk of rejection, resulting in higher immunosuppressant requirement and shorter transplant survival. People with high PRA therefore spend longer waiting for an organ to which they have no pre-existing antibodies.” Transplant centers and surgeons do not like transplant patients who have lots of antibodies because of the risks of rejection an how much harder it is to find an organ. Because of this - the transplant team had to meet again today to discuss whether or not I'm still a good candidate. The score of PRA is expressed as a percentage between 0% and 100%. Mine is 90%.

I have one thing that could help my scenario and that is the fact that there is treatment to help bring down the number. But its up to the doctors on if they think that would even be worth trying with me. If they don't think it'll do anything, then they may not decide to transplant me. It's 4 o'clock here which means it's 7 in Pittsburgh - and more than likely everyone has gone home for the night... and I won't get an answer tonight about their decision. It's going to be another sleepless night, tossing and turning - worrying that they'll reject me. I'm hoping we get an answer tomorrow, but knowing how slow they have been to get back with us in the past, I have a feeling I'll be waiting and worrying for a bit longer. Thank you for all the love and support during all of this!

Hope and Love,


  1. Hi, I'm Edward's mom. There will be a transplant soon that you will never reject. I see you live in the Pacific time zone. I think that is where the research is being done. And so far the results are good. I need your email address to send you articles. I don't know how to post them here.

  2. My e-mail is:


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My Life As A Chronically
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