I made my monthly pilgrimage to UPMC for my checkup. The really great news that came out of it is that because my blood levels have stabilized, I can now go from having a blood draw every week to one every two weeks.
Sometimes material pleasure is compared to the good feeling you get when you stop banging your head against the wall. This definitely falls into that category. There may have been a brief period after the transplant before I started the interferon/ribavirin regimen that I was off the hook for weeklies, but memory is a little fuzzy and I don’t recall it.
I have been getting blood draws routinely for the last three years, the majority of the time weekly. It has been more than a year of weekly blood draws. Immediately after the transplant it was daily.
So only having to go every other week is like a huge relief.
It isn’t that it is such a bad an experience, but it does involve making a trip to town, at minimum, and a big needle going into my arm, sometimes less elegantly than at other times. Although I whine like a baby for the butterfly, with its smaller needle, or the other one that is small, many times they simply smile and use the standard bore one anyway. Or so it seems to me.
Skipping that every other week will be a highlight.
My hemoglobin had also gotten in the good range and been stable, so I was able to drop the weekly Procrit shot. Then I was rolled over into Medicare, with its confusing array of programs and options, and in the process had a gap of a week where I had no prescription drug coverage. That meant I didn’t get my Neupogen on time and missed my weekly shot of that, which was a little dangerous as my white blood count continues just barely above critical low, well below normal range. By the time I got it was decided to wait until the next regular time.
Bottom line on all that was I went a whole week without having to self inject, instead of 3 times in a week. With that and the shift to biweekly blood draws, why, I have been positively enjoying myself.
The other thing that came out of the appointment was the decision to continue treatment.
I took a benchmark viral load when starting the treatment. At 12 weeks if it if wasn’t a 2 log reduction in the count (drop two zeros, essentially) the treatment won’t work and they stop it.
It wasn’t at that level after the first 12 shots, but that was because my white blood count had tanked, and it took awhile to get approval from the healthcare provider for the Neupogen to pump it up. Thus we had to drop to half a dose, then skip a week, half a dose, then skip again, then half, then 3/4.
So although we missed the 12 weeks cutoff, the doctor said it wasn’t accurate because of the under dosing. We jumped up to a full dose for the next 4 weeks and nailed it. My original viral load was 48,000,000 per ml of blood, and this time it was 280,000. A two log reduction would have been 480,000 so we squeaked past that.
Which means 16 weeks down, 32 more weeks of malaise, irritability, and fatigue. The brain chemical churning has eased up a bit, and I am able to fake being nice in public for hours at a time, so that is an improvement, and even the fatigue has eased a bit, as my body adjusts to the chemical onslaught from the drugs, but it still has an overwhelming hold on me.
I lay around a lot.
FYI, for those who may be a little confused, this is not a picture of me. I was over at Koontz’s truck junkyard the other day looking for a used hitch for the Astro so we could tow a trailer (they found one which I’ll pick up Monday) and this dog was chilling out in the office. So while it isn’t me, he does represent how I feel most days.
