Life has really thrown us for a loop.
It’s 1:34 am and I can’t sleep. Josh has been in bed since 8 pm or so. He’s felt pretty bad since his ERCP this past Tuesday: jaundice, fatigue, nausea, no appetite. He’s been sleeping a lot, but he went to work yesterday and today.
The Urso makes him a little nauseated. He’s only been taking it two weeks, so it’s too soon to say if it’s helping. He’s also on an antibiotic (standard procedure after an ERCP). Blood work yesterday indicated his liver enzymes are back up again. Of course the doc didn’t give exact numbers, but we’ll get them at the next appointment on Monday.
The news doesn’t look good. Doc said ERCP indicated “severe PSC.” We thought we were looking at the beginnings of the disease, but it appears to be more advanced than all the doctors thought. I don’t really know what Josh thinks; he doesn’t say too much but it’s obvious he doesn’t feel well. I think he’s still shocked at the diagnosis. I struggle with feeling overwhelmed sometimes when I think about how our lives are going to change. Mostly I feel helpless because there’s nothing I can do to make Josh feel any better.
The idea that the diseased liver is slowly turning to stone inside his body is unfathomable. And I don’t think I’ve ever heard a scarier word than “transplant.” We will quite literally have to re-learn how to live our lives. And I say “we” because I’m in this with him, through whatever it takes. He’s going to be by my side at least until we’re 100. First thing I need to work on: being much, much pushier with the doctors. No more meek, head-nodding, quiet little sheep.