Thursday, August 11, 2011

WTF is Thrombotic Thrombocytopenic Purpura?

So we just saw both the Hematology and Liver Team in a marathon 1 hour meeting. Hematology is saying that the cause of all of our problems is a thing called Thrombotic Thrombocytopenic Purpura (TTP for now on). There is a link on the name I posted there for those who really want to read. For the simple folks out there (people like me) it is where the platelets clump together and run into the Red Blood Cells and then that group runs into the walls of the veins and all are destroyed. It is caused by a few things but the one of concern is that the liver transplant drugs caused this. Now the Liver Team is skeptical of the cause because why now and not over the last 3.5 years of taking the pills. That is being worked on by both teams now.

Now the fix is a process called Plasmapheresis (A little wikipedia link for all). The process (run by the Red Cross and not the hospital) is to remove ALL of Aimée's plasma and give her all brand new plasma. This will be done through the ports they have already installed for dialysis. We hope to start this in the next 6 to 12 hours but we are waiting on the Red Cross and a few things here. It is a 2-3 hour process that is done once a day for 4 to 5 days from her room here.

Once the Plasmapheresis is done it will take about 2-3 days to see if that has corrected the problem. We will need to see her platelets climb and her Red Blood Cells stabilize.

For the liver itself: her billirubin is climbing and there is a little bit of yellow on her eyes. However, not the primary concern right now we need to fix this TTP thing.

For the Kidneys: they are producing some urine but the creatinine is still too high. However if the TTP is corrected that might fix the kidney's and we can reassess those little buggers later.

They have cancelled all other actions for right now until we get this sorted out. So the Liver ultrasound and OB GYN stuff is postponed. Those will be dealt with when the time is right.

For now she is just relaxing and eating some watermelon and trying to just focus on this. She says "thanks for all the good wishes and prayers."


  1. Anonymous2:44 PM

    Thanks for the detailed update. Same room, right? We are pulling for you guys and wish there was something more that we could do. Prayers and good wishes!
    Love sister Ann and fam

  2. Yes Ann. She's in room 5805 at UNMC. They let her have flowers if anyone wants to send some decorations, I will post pictures later today of the 3 sets we have so far.

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  4. yay for answers!!! they may not be the ones you guys want, but a plasma transfusion sounds like a better option than not knowing what's going on! Thinking about you guys!!

  5. Anonymous7:29 PM

    Make sure they check her ADAMTS13 activity. Most of the time, with drug-induced TTP, the ADAMTS13 activity is still normal. However, if it is idiopathic TTP, the ADAMTS13 should be deficient and, in this case, certain treatments such as Rituximab can be used.

  6. Anonymous (please leave a name) we are working a BUNCH of issues and got a great team and I'm seeing all the levels. Thanks for the tip.