Got out of the hospital on Tuesday evening. Neupogen — aka filgrastim or "granulocyte colony-stimulating factor (GCSF)" — worked like magic. I got a shot on Monday around 4 PM. By Tuesday morning's 8:30 AM blood draw, the neutrophil count had gone from a severely deficient 0.3 to a near-normal 1.1. The next day, after one more shot, neutrophils were normal. (Counts above are from Weds. morning.)
Waiting for results from today's test now. Neutrophils should be much higher. As Dr. Kreitman explained in an email:
The rapid increase with GCSF suggests that the bone marrow is hypocellular, the HCL cells mostly killed off, and the ANC precursors delayed in growing in possibly due to lack of endogenous local growth factors. We sometimes give GCSF just to initiate ANC growth into the vacated marrow and then stop when the ANC is > 1.5. In the setting of serious infection, though, we stop GCSF when the ANC is > 5. In my experience, it won’t take long to get there, perhaps tomorrow or the following day. We have seen it go to 30 within a few days.
Platelets are also normal now — and that's all me, not the GCSF. Other counts on the rise as well. Yahoo!
As for the pneumonia, they're still not sure what it is. My fabulous infectious disease doctor, Laraine Washer, consulted with several people, including a fungal specialist; they decided it was probably not fungal, but they still aren't sure. There's a thin possibility it's tuberculosis. (I spent a year in South Africa, where it's common.) Another test coming on that one next week. Some of the cultures they took can take up to 8 weeks to grow out, so it'll be a while, and we may never know. They're talking about doing another CT scan in a month. Hate the thought of all that radiation, but since this disease has been symptomless so far, it's the only real way to be sure it's improving.
The approach right now is wait and see if it gets better, or if I develop symptoms. (Right now, there's nothing except a very infrequent, unproductive cough.) They sent me home on a massive dose of Levaquin (antibiotic), and I'm still taking acyclovir (antiviral, prophylactic against shingles and herpes) and Bactrim (prophylactic against certain kinds of pneumonia). Maybe my rising neutrophils will take care of it on their own now.
Totally exhausted. It's a cliché to say this, but a hospital is pretty much the worst place in the world to heal. The two things people need most — sleep and good food — are nearly impossible to come by in there. The Guantanomo-like sleep deprivation really wore me down. At home, I slept 14 hours Tuesday night. Got up and went for blood tests, came home and slept another 2 hours — overkill, since then I had insomnia on Wednesday night, but Thursday was another 10-hour night. Yet I'm still wiped out.
Until the neutrophils come up a bit more, I have to inject myself with Neupogen every day. You grab some belly fat, squeeze it, punch the needle in and inject. It actually hardly hurts at all, but there's still a long moment just before the needle jab when I think
am I really gonna do this?Very weak, too. Lost 5 pounds in the hospital, though it's been quick to come back, what with finishing off the amazing dark chocolate birthday cake Luka and Susan D baked for me. Hemoglobin's coming up now, but still pretty low, so the best I can manage is a couple of 30-minute walks each day and some very, very gentle yoga. Can't tell you how good it feels to get upside down again, hanging from the inversion swing. Hospitals don't make that easy either.
