By Dawn DeBois
I've often shared about my "Sunday SubQ" routine of clearing my afternoon schedule, turning on my guilty pleasure reality TV shows and administering my weekly dose of subcutaneous immune globulin (SCIG). However, I recently grappled with what to do when two Sundays in a row happened to be holidays and my infusions were due. Luckily, when it comes to SCIG, it's easy to flex the infusing schedule by two days, either way!
During my SCIG infusion training, I literally felt giddy at the flexibility of having my say over when I'd infuse. With two years of intravenous IG (IVIG) infusions under my belt, I was used to my life being scheduled around those infusions, which were always scheduled a month in advance. And since the infusion center was always scheduled to the max, I never canceled or attempted to reschedule because, if I did, it might be weeks before I could get another appointment. With the half-life of IG at approximately 21 days, a simple week's delay would cause an exacerbation of my symptoms that IG was keeping at bay. I once went multiple weeks into a delay due to an IVIG shortage that caused a severe exacerbation of my symptoms. And I knew I never wanted to face that again, so I always made the infusion center's schedule work for me. In fact, once when my son was hospitalized over an hour away with a life-threatening blood infection, I still went to my scheduled IVIG infusion.
In my December-January 2023 IG & Me column in IG Living titled "Coping with My Fear of Needles with SCIG," I wrote about a trigger point injection appointment with my rheumatologist preceding an IVIG infusion at which the resulting number of needles from the trigger point injections plus the missed IV sticks were what pushed me to the point of knowing I needed to switch to SubQ. In a perfect world, I would not have scheduled those two appointments back to back, but my IVIG infusion had already been scheduled and the availability of my rheumatologist was limited. I had no choice. The lack of scheduling flexibility for IVIG infusions is real, and I hear the challenge is even more daunting in these COVID-19 times. But looking back, it was a gift since it pushed me to pursue SubQ.
For me, it's easier to keep on a predictable schedule, so when my SCIG infusions fell on holidays, I decided to bump them forward two days to the following Tuesdays. On those Tuesdays, the preceding holiday would be over and recovered from while the upcoming holiday would still be on the horizon. Doing SubQ between the holidays was like a reset and recharge in the middle of the chaos. It was my gift to myself, giving my body what it needed to keep functioning properly. With each vial of my dose, I gave thanks to the thousands of plasma donors who gave their time and body to help thousands of patients they will never meet.
There's a bit more intimacy and thought that goes into preparing an infusion yourself, checking the vials and feeling the sticky residue left over on the tubing. I often wonder about the scientists who were behind the discovery of the different parts of the plasma, and those who discovered what IG can do for patients like me. During this past holiday season, I was incredibly thankful for the newer autoimmune indication for SCIG that not only controls my rare disease but that allows me to control when I administer it.