My Bicentennial Infusion

Thursday, August 13, 2009 was my first infusion. 25 months (and a smidge more), and I'm doing my 200th infusion as I write this. That means 800 needle sticks in my abdomen, 1000 needles disposed of, over eight football field lengths of tubing used, almost 7 liters of medicine infused (6955 ml) representing 1217 grams of actual immuneglobin (IgG).

I don't want to think how much my insurance company has had to pay to keep me reasonably healthy.

And I have been healthy mostly, especially considering that it was four pneumonias in five months that pushed me into a crisis and got me the diagnosis of hypogammaglobulinemia. I take a very perverse pleasure in telling people that I don't have an immune system, then following it up with saying that mine's borrowed.

We're actually reducing my dosage. I'm currently doing 60 ml a week (12 grams) and we're cutting it to 50 ml. (I do two infusions a week with the dose halved, it's a lot more comfortable but doubles the needle sticks) I've been maintaining a pretty good IgG level, my last lab work had it at 1010 with the normal range about 700 to 1600. The doctors at NIH say that I should be healthy with my level in the 900's, so we're tapering my dosage down and we'll see if the frequency at which I get sick increases. If I can get it down to 40 ml, I'll switch to once a week which will be more comfortable. When I started, I was doing 60 ml in a single infusion, then it was increased to 70 ml and I had to use two syringes as one will only hold 60 ml, and that last hour was pretty painful. Each infusion site is considered capable of holding 10-15 ml of fluid (from what I've heard) which means 60 ml is pushing it and 70 is over. So since I was already using two syringes, I had them double the tubing set quantity and I started doing it twice a week. MUCH more comfortable.

(I started with a different med that had a lower gram dose per ml so now 60 ml of Hizentra is the same dose, 12 grams, as 70 ml of Vivaglobin)

It will be interesting to see if I can get down to 40.

Another interesting thing that came out of my visit to NIH was they did an abdominal CT scan and apparently there are visible air bubbles in my abdomen from the needle sticks! These are cumulative from the little bubbles in the lines, since I'm doing abdominal injections, a bubble in the doesn't carry the same hypothetical risk of a cerebral aneurysm that a direct injection to a blood vessel might carry.