Communication

Last few days a blur of work, naps, walks with my mom. Pneumonia seems to be clearing, though I'm still coughing just a little. Night sweats still happening, but less often; none the last 2 nights. I'm feeling a little weaker each day; probably the hemoglobin continues to drop. One flight of stairs now requires a 30-second pause to catch my breath. Standing up fast, even sitting up from lying down, makes my heart pound. As long as I stay still, I feel OK except for the ever-present headache.

Faxed Dr. B about the possibility of another blood transfusion this week. My next scheduled blood tests are on Wednesday, but if I try to get a transfusion that day — the day before Thanksgiving — it might be very slow or even impossible.

Maybe he'll get back to me, maybe not.

Communication has slightly improved since we developed this fax system: I fax him, try to keep it very brief, he dispenses orders to the nurses and one of them calls me back a few days later to confirm. On the other hand, when my neutrophil count dropped below 0.5 last week, the lab report noted that a lab tech had called the nurse and read her back the results to be sure she knew. Her name was on the note. Yet nobody called me.

From the point of view of education, it doesn't matter. I already know what sub-0.5 neutrophils mean, and what I need to do while they're this low. But it's still more than a little disturbing when a patient develops a very dangerous condition and the nurse does not check in. I still suspect that despite my doctor's reassurance, I'm seen as an irritating pest who's asking for more than he deserves. (It sure feels that way.) Or, they think I'm "being treated somewhere else," as they put it on one piece of correspondence I saw. Could also be the nurse herself. One of the two I've been seeing seems much less consistent about follow-through than the other (and she was the one named on the lab report.)

Getting in about 6 hours/day of work before I crash.