Izzy's bloodwork came back Monday. Everything was fine. Her
liver was fine. Calcium and potassium were fine. Even her sodium
was fine after several days on the higher dosage of diuretics. (It
was slightly lower than her normal, but still within the range of
normal).
The PRA, which looked to see how much her body is currently fighting her foreign tissue, was way better than expected. Normally, the PRA test will show a very high percentage of antibodies fighting foreign objects when a person has had donated organs, tissue, or even had blood transfusions. Izzy has had donated tissues in her body since she was one week old and had numerous blood transfusions, so the docs assumed her PRA would be high. We were told that if the percentage of antibodies in her blood was above 70%, she would be automatically disqualified from transplant. But Izzy's had 0. Yes, you read that correctly, zero. I think that may say something about that top notch immune system she has fighting for her. (Yes, I am being sarcastic.) Apparently, for people with a high PRA percentage, doctors use IVIG to lower the percentage. Izzy gets IVIG (well, not IV) each week. That likely explains why her percentage is so low. This means, we know of no reason that Izzy should automatically be disqualified from being considered for heart-lung transplant.
All of that information was faxed to Pittsburgh on Monday afternoon. The team was supposed to discuss Izzy on Tuesday at conference and get back with us on Wednesday. It is Friday afternoon and we've heard nothing and neither has Izzy's primary cardiologist. To say that I'm going insane waiting is an understatement. I HATE uncertainty and we have been waiting for so long. I don't know if I can wait any longer, but I guess I have no choice!!
Mel
The PRA, which looked to see how much her body is currently fighting her foreign tissue, was way better than expected. Normally, the PRA test will show a very high percentage of antibodies fighting foreign objects when a person has had donated organs, tissue, or even had blood transfusions. Izzy has had donated tissues in her body since she was one week old and had numerous blood transfusions, so the docs assumed her PRA would be high. We were told that if the percentage of antibodies in her blood was above 70%, she would be automatically disqualified from transplant. But Izzy's had 0. Yes, you read that correctly, zero. I think that may say something about that top notch immune system she has fighting for her. (Yes, I am being sarcastic.) Apparently, for people with a high PRA percentage, doctors use IVIG to lower the percentage. Izzy gets IVIG (well, not IV) each week. That likely explains why her percentage is so low. This means, we know of no reason that Izzy should automatically be disqualified from being considered for heart-lung transplant.
All of that information was faxed to Pittsburgh on Monday afternoon. The team was supposed to discuss Izzy on Tuesday at conference and get back with us on Wednesday. It is Friday afternoon and we've heard nothing and neither has Izzy's primary cardiologist. To say that I'm going insane waiting is an understatement. I HATE uncertainty and we have been waiting for so long. I don't know if I can wait any longer, but I guess I have no choice!!
Mel
10 Message(s) from Carepages
Posted Apr 12, 2013 3:32pmPosted Apr 12, 2013 1:55pm
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