Dr. Costanzo from Edward and a member of the UCH transplant team contacted us in separate calls this afternoon, in response to an earlier call from Patty. We were getting a bit anxious to hear what the future plans might be for Patty, even though we were also hoping doctors wouldn't deem it necessary to be too aggressive going into the holidays. We hadn't heard from the doctors, so Patty gave them a nudge.
Here's what we know:
- Patty's situation will be discussed by the entire rheumatology team at UCH this coming Tuesday. From what we understand, most parties involved are guessing Patty is being plagued by some form of connective tissue disease. Of course, the safer money seems to be on lupus right now, although one doctor said that if a good solution is found to this problem, Patty's case will likely be written up for the medical press.
- Doctors still want to keep Patty free of the milrinone over the shorter term, in part to give Patty a mental break, and in part because some of the transplant team feel using milrinone as a long-term solution may have as many cons as pros. Patty will be watched closely to make sure she's not slipping for lack of the medicine.
- The UCH doctor said that he believes there is still reason to be optimistic about reducing Patty's antibodies, although he did acknowledge that Patty's levels are higher than in the most comparable case studies they've compiled. He suggested that we not worry, because if worst came to worst, he feels Patty could still be transplanted against positive crossmatch and be able to cope with a fairly extensive drug regimen. Patty is not especially enthusiastic about this prospect (nor am I.)
Sorry to revive and re-flog a long-dead horse, but please humor me. You have no idea how awkward and ridiculous it feels to constantly refer to some people involved in Patty's care as "the doctor" or "a member of the transplant team"; if you've been reading this space for a while, you'll know there was a big brouhaha some time ago about the issue of sharing specific, detailed information about Patty's care.
Tonight, Patty and I tackled a Christmas-related errand and grabbed a quick, very unsatisfying dinner. Now we're home and settling in for a bit of TV before hitting the sack; it's been a pretty long day.
P.S. I tried to post a picture of Patty from today with this entry; however, once again, Blogger is being fussy. Perhaps later, or tomorrow.