Saturday, September 26, 2009

And another thing

This hospital stay is the fifth, I think, for Will since July. It might be the sixth. First there was a bacterial infection, then (they think) CMV pneumonia, then very low sats and fevers, then the line infection (which they now sort of think might have been sample contamination) and high-dose steroids for the chronic rejection episode, and now this. So fifth. The recent idea is that there must be something else going on in addition to all the recent infections that is causing Will to never quite recover and, in fact, keep getting sick.

Yesterday they think they found the culprit: Cryptococcus. Cryptococcus is an airborne fungus. There is a particular kind that is common here in the NW. (I don’t know which kind Will has yet; the docs didn’t say and I didn’t know to ask when they first told me, but it would be reasonable to think it might be the NW kind: C. gattii) It can take different infectious courses. It commonly causes lung problems (check) and it can infect the central nervous system too. It's treatable; however, if there is CNS involvement, the treatment has some pretty serious risks to the kidneys. Treatment for the regular versions is flucytosine or fluconazole or something like it. Treatment for the CNS version is 5-7 days of amphotericin followed by flucytosine.

So, they're doing a number of examinations to see if they can tell which parts of Will are infected. Head CT (normal), eye examination (normal), and lumbar punch to collect spinal fluid to test (fluid appears normal, but it's the lab tests that will really show what is what). The lumbar punch thing is an example of, really, how tough Will is. I am about in tears if I have to have an IV put in. Will just gets through it, whatever it is. I remember when he was being treated for Hodgkin's lymphoma and the oncologist said about one of his (many) bone marrow biopsies: "you could give a class in how to tolerate these."

At any rate, the lab won't run the tests on the spinal fluid until Monday, so we won't know until then. In the meantime, they might just start the flucytosine since it often is adjunctive therapy to amphotericin. (I asked the supervising medical doc about this when he called today, and he wanted to check with ID to make sure it was a good idea.)

The blood test for EBV was negative. This is very good, because in the past EBV has always be associated with lymphoma for Will. The blood test for Adenovirus also was negative (again, good). Will still has Adenovirus in his lungs, but because they didn’t find it in his blood, it makes them feel the infection is (1) less serious and/or (2) starting to be on the way out. Nonetheless, they may decide they need to treat for that too, depending. It can be a very serious infection in someone with a suppressed immune system. The IgG treatment is on hold for a day or so until they figure out what type of cyptococcus infection they are treating and whether Will will need amphotericin. The IgG puts some strain on the kidneys and they want to have all the room they can get to treat with amphotericin if they need to.

Will also had a complete ultrasound mapping of the veins in his arms and chest this afternoon, owing to the fact that the picc line nurse couldn’t get the picc line placed yesterday. They got one placed today. He said the mapping was "interesting."

So, that's today's update. Will is stable, no fevers today/yesterday. Still on 3-4L of oxygen by nasal cannula, but they are hoping to start weaning down, if that is possible.