T+8 One LONG SCARY Night

Last night, I spiked a fever about 8:00, right on schedule, and started a bloody nose shortly there after. Then, I began to get a terrible headache. On a scale of 1 to 10, it started as a 4-5, so I told the nurses and we watched carefully. Because of the spike in fever, once again we got blood cultures, a urine sample and since we haven't had a chest x-ray since Saturday night, we ordered one of those.

By 11:30, all the tests had been given and they gave me two Tylenol for my headache. They can't give me anti-inflammatory meds because they will hurt the stem cells. My bloody nose had come and gone several times, but we had a strategy for dealing with it, called slap an ice bag across my nose soon as it starts and freeze everything. However, the Tylenol worked like a snowball being tossed into a furnace, and about 11:30 the pain really began to increase. It rose to 8 on my pain scale, and had my eyes watering. It felt like someone had landed an axe in the bad of my head.

The nurses were very concerned because I had been having so many bloody noses, that maybe one of my sneezes had caused bleeding somewhere else. They pulled a platelet level immediately, and an hour later it came back at 13. Dangerously low, and requiring a platelet transfusion is active bleeding is present. However, my fever had climbed to 101.4, preventing the transfusion of platelets as the fever would destroy them upon their entering my bloodstream.

We had to get my fever broken, and with no response to the tylenol, the nurses and doctor were conferring about getting a head CT to insure I wasn't hemmorraging into my brain. They tried Tylenol -3, with codeine, to see if it would take the edge off, and hopefully break my fever also. To no avail.

The doctor then did a long series of neurological tests, which I passed but she wasn't happy with, so at 2:30, she ordered a head CT. She explained there were three things which could be going on that would be extremely dangerous, and one thing that could be going on that was no big deal. I could be having a brain hemmorage, a subdural hematoma(unlikely as I hadn't banged by head on anything, but possible), or internal bleeding against my brain stem. The risk of any one of those outcomes was enough to justify a head CT, so she was ordering one. The final option was that I simply was having an incredibly bad headache. The Tylenol-3 got the pain back down to a 5, but it was still pretty killer.

So, at 2:30, I sucked it up and called Honi to let her know what was going on. I couldn't face if there was an issue, having one of the nurses call her at 4 am to tell her what was going on. I was scared shitless, and hurt like hell. Honi was great. She felt it was the introduction of neupogen, which had started again.

In the middle of the night, the only CT scanner working in the network of buildings that make up NMH is in Feinberg Pavilion, by the emergency room. As a critial care patient though, a stat order on anything gets me priviledge. Transportation arrived about 3:00 for the 3 block trek over to Feinberg. Fortunately, the network is all connected underground, so it only took about 20 minutes to get over to the CT place.

By 4:30 I was back in bed, with my head exploding, but the relief of knowing that it wasn't any of the bad three items. The CT scans were negative. So then we had to begin trying to find a drug to knock the headache down. Finally, about 6 this morning, Fioricet, a migraine drug, knocked the stuffing out of me and laid my headache to rest.

And that concluded one of the longest, scariest nights of my life. I have to say, it went pretty well. I never really panicked. The staff here was terrific at laying out all the possibilities and all the outcomes for each, and maintaining an air of erring on the side of safety. Calling Honore turned out to be the right thing to do, as we talked this morning and she agreed she would have been pissed to get a call from the nurse saying I was going under the knife to relieve a brain hemmorrage without somekind of heads up.

Because of my depleted platelet situation, which will continue for another 5-7 days, we will have to be particularly careful about monitoring my nosebleeds and any sneezing that might cause internal bleeding. Also, I have to be extra careful not to fall, bruise my body in any way or cut myself with any kind of sharp object(not that I have any sharp objects per se, but its more being aware when I'm up walking around not to bang into anything).

Scary stuff. I don't remember reading any of the be prepared material talking about brain hemmorrages or internal bleeding or strokes. None of which I have any interest in. Fortunately, I'm in good, quality, professional care and we know what to look for. Meanwhile, I'm now exhausted and heading for bed. I'll update more tomorrow.

My WBC today was 0.2, up 0.1 from yesterday and my Absolute Neutrophils were TLTC(too low too count). These are the numbers we are waiting to go up, they are my immune system.