11-20-10 Saturday Day +24
Status: 8.5/10. A good night’s sleep, but could have used more – had to get up for an early appointment at IPOP. The moment-to-moment fatigue is difficult to describe. A fellow transplant patient I spoke with before the procedure described it as having a 360 lb rock laying on your chest. Perhaps I’ve been too generous on rating myself. At least, I understand better why everyone says it take a year to feel normal again. I’ll have to be patient with the incremental progress.
What buoyed up my day was seeing my blood counts. Platelets, the smallest blood elements, are produced by the biggest cells in the bone marrow, the megakaryocytes. They are huge. And looking at a bone marrow stain you see where they get their name. But they’re also the most delicate cells. First to go when injured, and last to come back.
In my case, it’s always been a matter of using platelet transfusions to keep my head above water. The docs set a goal, for example of 20,000 (normal 150,000-400,000) with the idea of keeping it above that number with periodic transfusions. It’s like having a slowly leaking bucket with the goal of keeping it a quarter full. You’d pour in some water, and when it slowly got down to the quarter line, you’d pour in some more. Each visit you’d watch your platelets drop and drop, and when you got close to your goal you’d get a transfusion. Today was the first day throughout all of this that my platelets actually increased on their own! The transfusion didn’t come in a plastic bag, it came from my new marrow. Lisa is amazed that these little guys had found their new home and starting doing their job. Actually, I’m amazed as well.
Events: IPOP is just a hallway away from the hospital floors where I’ve spent my time at Hopkins. It has a small waiting area and then bilaterally symmetric are two nurse stations and individual patient areas (some with lounge chairs, some with beds). My nurse for the day was Mary, who had been charge nurse on the floor when I was having mucositis. She remembered me, and although I didn’t remember her through the haze of that time, I found her to be smart, kind, and comforting. As far as smarts go, the nurses in IPOP remind of the PGA commercial – These Guys are Good.
Learned of my lab results (Mary was just as excited) and got a little potassium by IV. That’s what IPOP is really good for – a daily checkup and tune up. Lisa got a chance for some grocery shopping, and I came home for a nap (I tell ya, this fatigue thing is real). Also got another prescription, this one for Bactrim, which I may be taking for 6 months. It’s to prevent Pneumocystis pneumonia. Pneumocystis was the microorganism that opened everyone’s eyes to AIDS. It’s a weak fungus that perhaps 50% of normal people have in their lungs. But if you are immune-suppressed (like an AIDS patient or like me) the little bug can gain a foothold.
Comments: Lots of new rules to learn, lots of food I cannot eat, lots of places I cannot go. I wear a surgical mask everywhere but in our apartment or in my individual IPOP cubicle. Luckily our IPOP appointment isn’t until 10 AM – a chance to sleep in!
For those of you who are already on a Thanksgiving break, do spend a moment thinking about what you are really thankful for – I’m doing that as well.