[Greg H]

I've been neglecting posting any updates here, I think because I've recognized that waiting for Campath is, at least in my case, going to be a long process. The rounds of lab tests and transfusions get to be a bit plodding after a while, so I'm most apt to post here when something happens to thicken the plot.

That happened this weekend, when I managed to come down with pneumonia.

I'd had some pain in my back for about a week (and honestly don't know whether that was the incipient disease or just simple back pain). But, Friday night, the proverbial chickens came home to roost, when my rib cage on the left side suddenly began to feel like I was in an on-going knife fight. Every time I moved -- and sometimes when I didn't -- my invisible assailant would stick me between the ribs. At one point I was just sitting on the side of the bed when he stuck me time after time after time -- I must have taken two dozen hits before that set of spasms subsided.

The doc later explained that this is a side effect of pneumonia, an inflammation of the lining of the lungs and chest, called "pleurisy," which is a deceptively quaint, old-fashioned-sounding word for what feels being stabbed to death.

We considering calling EMS or heading to the emergency room, but the pain meds I had taken early in this process had me seriously woozy -- I couldn't even stand up. So, yesterday afternoon, we drove over to Emergency and a great doc named "Chance" figured out that, yes indeed, I have pneumonia.

Having your T-cells destroyed by Campath leaves you vulnerable to a particularly rare and nasty pneumonia called PCP (Pneumocystis jirovecii pneumonia). Because AIDS destroys the same T-cells as Campath, the sudden outbreak of PCP among young gay men in New York and San Francisco was one of the harbingers of the AIDS epidemic back in the 1980s.
Folk in the NIH Campath trial inhale pentamidine monthly to try to ward off PCP, which I have been doing religiously. We won't know until the blood cultures come back -- and maybe not then -- whether what I have is PCP or some more common variety of pneumonia.

Figuring out what I had took both a chest X-Ray, which was clear, and a CT Scan, which told the tale. After pumping me full of intravenous antibiotics, Dr. Chance wrote me a script for an oral version of the same thing and sent me home.

So, we'll be fighting that off for a few days.

On the MDS front, I again had a four week interval between transfusions last time and will have this time (my HgB was 8.3 at the hospital yesterday, so I'm figuring we'll get some blood on Friday.)

My lymphocytes hit 300 a few weeks ago and have hung on that number ever since.

Neutrophils topped out at 1.8 and have been sliding the past few CBCs, now down to 1,100 -- I'll ask my local doc about that when I see him next week.

Platelets have ranged from 65 to 120 over the past few labs. I've decided that folks, like me, with giant platelets, can't count on getting an accurate platelet count. If they just run your blood through the machine, it misses the big platelets and you get a low count. If the lab guys notice the big platelets and do a count under the scope, you get a better number.