I had my sixth, and last, infusion today. I was diagnosed with Common Variable Immunodifficiency (CVID) several months ago after feeling bad for more than a year. I’m not really very sick, but I just don’t feel good. On a bad day, I feel like I’m coming down with the flu (eyes burn, headache behind my eyes, my skin feels tingly like I’m about to have a fever). That’s as far as it ever goes. I never get very sick. In fact, I didn’t even have a cold all last year.
Although most of the time I manage to do normal activities, I’m not up to par. For example, in 2012 I rode over 5200 miles on my bike. The next year, I started feeling poorly and only rode a bit over 4200 miles. This year I have ridden only 2300 so far, whereas last year at this time I had ridden 3700. (I know, lots of data, but I was a scientist). You might argue that I’m older now than last year. But barely! The point is I haven’t felt as spry in the last couple of years as I usually did.
I may have been a little more bitchy than usual, but I think I have a pretty good attitude. At least I’m trying to keep a positive attitude; I’ll really get the blues when I get really sick.
I saw my doctor a couple of days ago. He recommended that I stop having IV infusions every month and do sub-cutaneous infusions once a week at home. The in-home treatments involve sticking yourself with several needles under the skin to inject the immumoglobulins (same medicine as for monthly infusions). It takes about an hour, and a nurse will come one or two times to show me how to do it. The doctor pointed out that the weekly infusions give a smaller, but more frequent, dose. With monthly infusions, I get a big slug of immunoglobulins, which are gradually removed from the body in about a month. With weekly injections, the levels would never be as high, but would never be as low. It should provide a more steady level of immunoglobulins—no highs or lows.
I agreed to try this new injection method for a while. My doctor was reluctant to take me off the infusions completely, because the blood tests show I have a compromised immune system. However, I can’t tell the infusions helped much and were certainly not a cure.
This last infusion was the easiest of all. I was given Tylenol tablets and benadryl and steroids with the infusion to mitigate the side effects. This was the same treatment as last time. For some reason, I didn’t feel as bad as before. I had a headache and felt somewhat bad and I was drowsy from the benadryl, but overall I felt pretty good. Maybe I’m on the road to recovery!
