The BK virus appears to be somewhat diminished. Not only have test results shown that I am responding to treatment, but I am experiencing somewhat less pain in that area. Instead of having a constant stream of pain from the BK virus, I only get a few hours a day where it feels as though I'm passing a kidney stone. Also, for the first time in weeks, I just slept two hours without the BK virus jolting me awake; instead, I woke up from pain in my skin, which is related to the GVHD.
Because the GVHD destroyed my skin, like a snake, I am shedding my former body and receiving completely new skin. Not only is it more painful than I imagined, it's actually quite disgusting, and I get the worst stares when leaving the ward. In order to treat the skin, I have been undergoing PUVA treatments at an outside clinic. PUVA treatments are brief, controlled shots of ultraviolet radiation to my skin. It's almost like going tanning, but with a completely different goal. Although the treatment is primarily used for psoriasis, they have seen some success in using the treatment on skin GVHD. The goal is that these treatments will contain my GVHD while I taper off the steroids.
I will write more later. For now I am going to try to get another hour or two of sleep.
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