It may be wishful thinking, but I think John's skin looks a little better after his first photopheresis treatment; he has his second treatment tomorrow and more next week on M, W and F. His doctors think he will have at least 3 weeks of treatments. Send good wishes his way; as soon as this works, the steroids can be tapered off and his own new immune system should begin knocking down the CMV.
Depressing blood counts is a side effect of some of his meds. His platelet count today was 14,000. He did have physical therapy but they didn't have him do too much so the chance of falling or bumps would be minimized while his count is that low.
Another side effect of steroids which I don't think we mentioned yet is depressing body temperature. So even if you are fighting off an infection (or trying to), your temperature may not rise above normal body temperatures. Until the steroids can be tapered off, John needs blood cultures every three days to make sure he doesn't have any infections. This is a procedure that is difficult because his veins are scarred and it is painful. Often it takes multiple sticks to get a blood sample and he needs samples from each arm. Just one more reason why it is important for the photopheresis to work and to get off the steroids. This is very frustrating for everyone - the nurses and me included - but most importantly it is frustrating for John and he dreads it.
Tomorrow the badgerettes and their families are coming for a couple of days; we can't wait to see them.
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