Tuesday Update

Tuesday passed without major incident. They removed Trish's pain pump today and she ate and walked some more. I cleaned up the apartment so that it is ready for her to get out tomorrow. The plan is that she will be discharged tomorrow and I alread setup her first IPOP appointment for Thursday at 11:30am....Our goal is to spend two weeks in IPOP and go home.

We had an interesting conversation with Dr. Jones tonight. Dr. Jones actually took the call from Dr. Fu to admit Trish back in Ocober 2005. This is the first time we actually met him -- he is the director of bone marrow transplants for Hopkins.

I asked him about Trish's liver function and the fact that two of the three liver function enzymes were nearly normal and the ALK was not descending with much enthusiasm and neither was the billi. He explained that this is a good sign and normal. The AST and ALT enzymes coming down, show that Trish's liver is functioning. The ALK and billi staying high are indicative of the fact that the liver was damaged by GvH. Together it is indicative that the GvH is no longer attacking the liver (they'd all be high and climbing if she was still under attack).

We asked him about ECP and how often Trish should continue it once we are home. He originally earlier in the conversation said Trish should continue the FK506 (Tacrolimus) and ECP when home, than he said that there really is no known proof that immune therapies are prophlylactic for GvH. Evenually all GvH stops, the goal of treatment is to stop it before it kills you -- especially in acute GvH. Since Trish's GvH is by all indications stopped, she may not need intense ECP anymore. It was originally started to help stop the ECP from causing liver failure. Now that the liver biopsy shows it is stopped, we may not need to continue it.

We will likel continue it until we come home and I'd say there is a good chance we will continue i at home, just very likely at a less frequent pace. This will be my ever nagging question over the next two weeks. Trish and I are looking to visiting Aunt Mary this weekend and possibly moving back to her house on Tuesday next week when our current payment at the patent house runs out....I feel like we will need a hyperbaric chamber to help us adjust to being home. It seems like home and the rest of our life is so disconnected to the life we have been leading since February.