If you’ve been here before, you know I love my needles. You’ll also know that I have many tricks that help me manage my Myasthenia Gravis. But I haven’t written in detail about the biggest one yet.
For the first two years that I had MG I received monthly intravenous immunoglobulin (IVIG) infusions at the hospital. Those two days spent sitting in the medical day care unit meant that I had three good weeks of movement and energy. But as I went back to work, it was hard to schedule two days a month to sit in a recliner hooked up to tubes. Factor in the IV Benadryl that immediately knocked me unconscious (meaning I got nothing done during those infusions), the achy flu-like symptoms that followed for the next three days, and the two rounds of asceptic menengitis and after two years of IVIG I was ready to try something new.
My doctor and I talked about subcutaneous immunoglobulin (SCIG) infusions I could do at home and it sounded like a perfect fit. I’m already familiar with subcutaneous infusion from the insulin pumps I’ve work 24 hours a day for the past 18 years and I have no problem inserting my own needles.
So for the past two years SCIG has become part of my routine. Twice a week I run an infusion. I draw up 60 ml of immunoglobulin, which is a blood product containing other people’s antibodies, into a giant syringe (which make great bathtub toys afterwards) and connect it to a valve. The valve controls how quickly the liquid pumps into my body. I close it completely to start and then gradually turn up the speed as the infusion progresses.
I connect the valve to an infusion set which consists of three long tubes with needles at the end.
I load the whole mess into a spring loaded pump. Once I prime the tubes I insert the needles manually. In the beginning I used my abdomen but it changes the tissue and makes my body feel different – softer, squishier, and more wobbly. I didn’t really love the jelly belly I was getting so now I infuse into the back of my hips, love handles and bum
It takes between 3 and 6 hours to run its course – depending on how fast my body is absorbing the fluid and how high I set the speed. I have a little backpack to carry it around so I can do it at home while I watch tv and knit, or at work while I’m at my computer or in meetings, or while I’m running errands around town. I love that it’s so portable and that it gives me complete control.
Asked my daughter to take a photo for this blog post. Head chopped off, feet chopped off, but she got the infusion kit which is all I really asked for so, success I guess.
8to10jellybeans 