Monday, February 27, 2012

Sir Oliver is a Naughty Fellow

We had liver clinic on Thursday and got great news about Jaisal's growth, but Jaisal's liver numbers continue to perplex. His liver enzymes bumped up again. We don't know if that was because his prograf was at a sub-therapeutic dose or if it's just the weird way his labs seem to keep bouncing around. Unfortunately, we didn't get really good answers about what the team thinks could be going on.

We did follow-up labs Saturday morning and although we got the prograf back to a therapeutic level and some of his liver function numbers came down, his GGT continued to go up, albeit slightly. The plan is for Jaisal to get a biopsy on Thursday and if the pathologist sees rejection, we'll be admitted for a 3-day course of IV steroids to further immune suppress Jaisal and stop the rejection response.

Part of me thinks this is a good approach, but of course another part of me hates the idea of sedating Jaisal and creating a potential bleeding risk rather than just waiting longer to see if the numbers come down on their own. This is where the ability of our doctor to actually discuss pros and cons and their decision-making process would be useful, but unfortunately Dr. E is TERRIBLE at discussing thought processes and plans. (Sorry to rant, but before I went back to work, I asked Dr. E if in one month Jaisal's labs remained elevated would we be getting a biopsy and she said no. Kind of frustrating that two weeks after that conversation she is the one who said we should get a biopsy and his numbers are virtually unchanged from two weeks ago.)

I am hopeful that if the biopsy shows rejection, the high dose of steroids will drop Jaisal's numbers into normal range and then normal immune suppressant meds will keep the numbers low. I also hope that then after some time we can reduce the immune suppression, both in terms of number of meds and amount administered, without any adverse effects to Sir Oliver. I still dream of a day where somehow Jaisal is part of the small percentage of liver transplant recipients who becomes immune tolerant of their grafts. I already see his white blood cell count and ANC falling because of the meds and also see some of his kidney numbers rising. All these counts are still within normal ranges, but I can't help but overanalyze and worry about the side effects of these really strong medications on the little man.

Of course this is just another day in liverland where there is always something to worry about, so I'll just suck it up and see what we find out on Thursday.

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