Graft Vs Host Disease (GvH)
This is what you get when you transplant a body part or organ (who knew Bone Marrow was an organ?) and the match is not exactly perfect and the graft (or transplanted part) fights with the host (or recipient of the graft) through the immune system.
All kinds of things can happen, from the slightly annoying to the life threatening. In the early days, his skin was riddled with patches of itchiness, that resulted in very leathery sections of his skin and leopard-like spotting everywhere. The leatheriness has mainly been resolved, but the spots are apparently here forever.
So far, B's longterm GvH has expressed itself with red, itchy bumps on his skin (they can happen anywhere, but tend to localize near wherever he's fighting some other infection or illness) that don't find relief from the usual hydrocortizone creams. Sometimes they're in his eyes or mouth. Another frequent symptom is edema in feet, ankles, fingers, and/or hands. If it gets especially bad, it will effect him up to the knees, and prevent him from closing his hands completely. The tightness created by this is very painful, and can restrict a lot of movement and activity. And the worst, but less frequent (nowadays) gastrointestinal distress, which manifests as severe cramping in the lower abdomen, with a 6" section of his intestine feeling absolutely solid (right below his navel), followed by everything he eats backing up behind this spot to where he can't imagine putting another thing in his mouth. After 2-3 days of not eating, things begin to unclench, and he gradually gets past it. All of these take turns appearing whenever he's fighting something mundane that everyone else gets and gets over. So instead of just fighting off something nasty, his grafted on immune system (which is still artificially suppressed to keep this reaction in check) is also fighting his body.
This month, we've added a new expression to the list. It turns out that what they thought was Thrush ~2 weeks ago, was just the beginning of an epic and gross new adventure. The GvH "bumps" in his mouth have turned into large, painful lesions, which bring on localized edema in the mouth and throat, making swallowing nearly impossible due to the pain and constriction, has the potential to cut off his airway if not treated quickly. The bumps go from a normal red thing with a vague head to a blackened area with a white, open patch, and then become greenish and fuzzy looking. Plain water burns, anything else is exponentially worse. Wanna guess what the best possible treatment for any and all GvH is? Steroids.
Fortunately, knowing our B's absolute distate for ever using steroids again, the treatment team has come up with a topical "swish and spit" application. Because the lesions are very localized, this "should" work. If it doesn't work well enough, they're willing to start him on the smallest doses possible (5 mg prednisone every other day) to see if that is sufficient. Some people can take that dose long term, and be nothing but healthy and happy - no aggression/personality changes, steroid crash, induced diabetes or loss of muscle mass. Our B has already had all of the above side effects, so we're v. v. worried about inviting any of that again. So here's hoping the swish and spit works. Because him having to actually ingest this stuff is a terrifying proposition. It feels like an enormous risk.
And of course, until these lesions clear up, he can't wear his teeth, eat anything solid, can barely tolerate anything warmer than cold, and thus cannot actuallty eat enough to keep his stomach from violently rejecting any meds he has to swallow (the 3-4 per day he'll be taking for the rest of his life). Oh joy, unconfined.
So that's B's ordeal, and the things that inconvenience me as a result of this are realistically minimal. Lack of sleep, increased stress, poor diet since there's no point in making well-balanced meals, the usual suspects. But there's also the fact that I've lost a full week of working time this month - when I'm supposed to be closing this damn project. Time I can't afford to lose, but have no problem walking away when he needs his advocate at his side. The mental exhaustion though - this is harder. Even if we only deal with the Drs for half a day, I'm just mentally done in. I can't go back to work that day, because I can't focus, and I can't do anything worthwhile or productive when I'm feeling so worn down. It sucks. June has not been a friend to me, and the delayed summer is not helping either. Also, our governor still sucks.