Stuck

• Hemoglobin 8.5 (WHO normal 14.0-17.3)
• Absolute neutrophil count 0.4 (normal 1.4-7.5)
• White blood cell count 0.5 (normal 4-10)
• Red blood cell count 2.58 (normal 4.5-5.9)
• Platelet count 105 (normal 150-450)

In the hospital. Stuck.

Woke up on Tuesday morning feeling awful, with a fever. 7:30 AM it was 99.5, 9:30 AM it was 101.5. I had been planning to call in about a transfusion anyway, and there's no better way to light a fire under that process than to report a fever of over 101. By 10:30 I was in the hospital getting a blood draw.

Weirdly, by 11:30 AM, when they first took my vitals, the fever was only about 99. Very soon my temp was in its normal 97.5 range, and it did not go up again, despite no medications of any kind until about 1:30 PM.

Hemoglobin was 7.6. They signed me up to get 2 more units of blood, but meanwhile, my fever pushed the urgent-care system over the line into a standard protocol for dealing with neutropenic fevers. Another chest x-ray showed the pneumonia is still there despite the Levaquin. That rang a lot of alarms. They filled me up with saline and gave me a giant IV dose of azithromycin. By about 3 PM I was admitted as an in-patient.

More insane delays and communication issues. The PA kept paging people who took hours to call back. The in-patient floors filled up and no one was available to transport me down there, though I could easily have walked. Result: I didn't get into the in-patient unit until about 5:30 PM, 7 hours after arrival. After that, incredibly, it still took 3 more hours to get the blood that had been ordered at 12:30 PM. The transfusion started at 8:30 PM. It lasted until 3:15 AM. During a transfusion, they take vital signs every 15-30 minutes, so this was a night from hell. Plus, after the transfusion, there was another antibiotic. Then at 6:00 in the morning a nurse arrived to take more blood — with a needle, from the other arm. You try going back to sleep after that, even on Vicodin.

Felt absolutely awful until about 11:30 AM, after many more interruptions. I don't think I got more than 1 hour of uninterrupted sleep that night. The transfusion helped a little, but it only raised my hemoglobin 1 point, so I still don't feel great. It'll be more narcotics tonight.

More docs, more case histories. They called in Infectious Diseases (ID), who got started on communicating with NIH. Damn good thing I got here Tuesday, instead of Weds, the day before Thanksgiving.

Upshot: in this situation the standard protocol for most leukemias/neutropenias is to keep the patient until her neutrophils go above 0.5. Mine have been at 0.4 for 2 weeks. They could go up tomorrow, but they might not hit 0.5 for another week or more. So I could be in here a long time. The ID people are waiting for fungal cultures from the NIH, which might take another 2.5 weeks to give final results. They're doing more cultures of their own, too, and the NIH is shipping us its CT scan of my lungs. Still, tomorrow's Thanksgiving and I doubt any big decisions will be taken, certainly not releasing me.

So I'll be here tomorrow. Eli's coming up from DC just for this weekend; hope it doesn't suck too badly for him. It does sound like I can get a "day pass" to go home for a few hours for Thanksgiving dinner. That'll be great. But I'll still have to come back.

Praying I can keep the nurses mostly out of my f-ing room tonight. At least I got the antibiotic schedule changed from 8 PM - 4 AM to 10 PM - 6 AM. I'll have to somehow fend off the others, with their insatiable zombie quest for my vital signs. Perhaps an outward-facing row of metal spikes backed by coils of razor wire.

Unfortunately, I can't lay land mines this close to the bed.