Wow. A year and a half since last I blogged. I've been very fortunate, my health has been pretty stable. My Hizentra dose has not changed, though I have changed some techniques. I'm doing once-a-week infusions now, I'm also using 12mm needles so that I have less surface irritation over the week. But the most important change that I've made was lidocain.
As of tomorrow, I will have done 340 infusions, and they've all been abdominal. We've almost always had a dog during that time, and there was no way I was going to risk doing them in my thighs, and the arms and upper back just didn't seem practical. I'll do it myself, and my abdomen is the most convenient area. Well, over that time, I've developed some scar tissue and frankly, it hurts sticking in those needles now. I've read about people using topical anesthetics on the IDF forums and contacted my doctor to try it out, and I'm VERY happy that I did!
It's a little inconvenient, and it entails a change to both your supply and infusion methodology. First, the cream is topical, and has to be covered with a bandage, like the Tegraderms or similar that come with your SCIG needle kit. Thus, you now need twice the number of Tegraderms. I had some supply problems with my pharma, so I ordered a box on Amazon and will never need more again. Second, the cream has to be applied for an hour before you do your infusion, so you have to schedule accordingly. This works well for me, because my infusion model is that I load 55 ml of my 60 ml infusion in to my Freedom 600 syringe, then I set the syringe, needle capped, upright in a clean Starbucks bottle and let the bubbles settle. After an hour, bubbles are gone, and I load the final 5 ml. It's also then time to clean off the cream and start your infusion.
Here's the tricky bit: you need to know where you applied the cream so that you correctly place the needles in the numbed area. I have considered a Sharpie marker: draw a circle about the size of a nickel for the cream, apply cream, cover with bandage, and wait. But I'm not sure that repeatedly drawing on yourself with a Sharpie is safe, so I went and talked to a tattoo artist. They use surgical markers to draw their to-be-inked designs, which presumably are safe. In fact, the guy that I talked to would have given me one, but he'd just run out. So I'll be ordering one from Amazon next week. I use my wife as a spotter, which is fine if you have someone handy.
I have not been illness-free, but much better than 2009 when this whole CVID thing started. Just before Christmas last year, I had a REALLY NASTY GI bug hit me, I'll describe it as nothing more graphic than high-pressure expulsion from both ends. Unfortunately my immunologist was not immediately available as he was recovering from surgery, nor was my regular doctor returning my calls (he has since been fired), fortunately my wife did her undergrad with a woman who became a family practice doctor, and she called in two scripts that took care of me, though it took several days for me to regain strength and that was right at the time that we were driving 600 miles up to Colorado for New Years.
WHEEE!
On to Part the Second!
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