Thursday, December 3, 2015

Day +58

It looks like Raul may be getting another rare diagnosis. Last weekend they ran some enzyme tests for things that could be keeping his kidney function from improving, and his tests came back with a very low level of ADAMTS13. They are now testing to determine whether he has the acquired/secondary or inherited form of TTP. Due to how low his level was, they believe it could be the congenital form, that was just flared up by transplant. Congenital TTP has a prevalence of less than one in a million. Whether it is secondary or congenital, this is likely affecting his kidney function, as well as possibly causing other symptoms (such as hemolytic anemia, low platelet levels, and even his fevers and nose bleeds).

The good news is that there are ways to improve this condition. Until we get the genetic testing back, in about a month, we will use FFP (fresh frozen plasma). Then the genetic testing results will determine if we do plasma exchange or treat with a specific medication.

We don't know for sure, but really all of Raul's current symptoms could be related to the TTP. Yesterday and today he has slept most of the time, he had a bad nose bleed today, and his fevers are not coming down well with Tylenol. Today his fever got as high as 106, and only came down to 103.5 with Tylenol. He is pretty miserable. He did get both blood and the FFP today, so I am hoping if this is the TTP that we will see some improvement! 

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