Hi,
I was going to tell you how my doc appts went. I went on Thursday 11/4 to all my transplant appts. I met with a kidney doc there and he said that my antibodies were at 99%, which is why I haven't been getting any phone calls to see if I am a match, even though I am probably at the top of the list for a k/p transplant.
There is a thing that he and his partner (who is my dialysis doc) want to try with me called the desensitization protocol. It is ta three step process that involves them 2. physically removing the antibodies by something similar to a dialysis treatment,, 2. chemically removing the antibodies (by getting an iv for 4-5 hours and 3. a new drug to tell my cells to stop reproducing antibodies (which is a 5 minute injection). For the 3. they have to write up a study and present it to not only the hospital board, but the drug company to see if they can try it on me as I am not sure it has even been done before. If all is approved, AND the insurance will pay for it, then I can start getting that done. The kidney doc that treats me at D is the one that would write up the study and present it, he said not only is it VERY expensive, it is a long process to get all that done. Since my antibodies are so high (99%) it is like having 100 people stand in front of me and only 1 person's organs would not immediately fail in me. If we can lower the antibodies, even to 80% or even 50%, then that would better my chances of getting a transplant. However, there is no guarantee that the protocol will work. A little or at all. So, it is a gamble, but I told the doctors that it is one I am willing to take. The longer I am on dialysis, the harder it is on my heart.
I have two more tests to do on 11/23 and 11/24 and I will be done with all my testing for the year. I am hoping all of this won't take more than 6 months, but you never know. I honestly, was never given a time frame, just that it takes a long time.
So, this is what all I have going on. At least I have hope and the D is keeping me going for now.
Thanks for reading along!
Love, Tracy :)
Tuesday, November 9, 2010
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