Just a not so quick update: I am still in the hospital, stable thanks to a milrinone drip and many other medications, but my heart function is progressively getting worse. As for the non-HLA blood test that was drawn on the 13th, the results came back from UCLA and 2 of the 4 antibodies are coming back. The main one thought to be the culprit for my rejection (AT1R) and near death in November is back into the active range. In January it was down to 6 (anything above 10 is active) and now it’s at 12. So, the transplant team is discussing what to do next. They have been discussing starting Rituxan or doing photopheresis. The good news is that they did finally start Losartan about a week ago and that provides a small amount of protection against the AT1R, and I have not had the plummet in blood pressure or worsening of my kidney failure that they were fearing before they started it.
At this point, the plan is to find a facility that is equipped to stop the active rejection and to take my case to retransplant. My case has 2 complicating factors, the non-HLA antibodies and retransplant itself. None of the five facilities in Florida are equipped to perform a retransplant. The team has sent my information to Duke, Vanderbilt, Stanford, UCLA and Cedars-Sinai Hospitals. Duke and Standford “do
Also, some thank yous. I want to thank everyone again who has been reaching out to me on here, texting, and calling. It always helps. Again, Rhondaand Sonja Wheeler for making the drive and bringing drawing supplies, books, and basically a first ait kit for boredom. I want to thank Tiffany Schmidt, for reaching out to Stanford when it seemed like tires were spinning more than usual here. I really want to thank Ashley Schmidt, as always, she brought dinner last night and we got to observe our anniversary early. We watched the Oscar Party and forgot about this crap for a while and we both really needed it. I couldn’t do it without her.
