By Dawn DeBois
My home state of Maine has not been exempted from the recent heat wave that has encompassed most of the United States. The heat is difficult for many, but I have a neuromuscular disease that is exacerbated by the heat, so I must be particularly careful to stay cool and hydrated. Each morning, I do two things without fail. First, I open all the windows at 5 a.m. to fill my rental with cool air before the outside heat necessitates closing them again and turning on the air conditioning. Second, I mix a hydration packet into my water. I can’t help but think of how similar this second routine is to my immune globulin (IG) treatment regimen.
All IG products have a black box warning of thrombosis (blood clots). That warning also states to “ensure adequate hydration before administration.” And that’s good advice because through trial and error, I have realized how much better my treatments go when I hydrate well beforehand. So, now, I make sure to overhydrate a day or two before treatment, as well as the day of treatment and the day after.
Many do not realize that the little bottle of IG isn’t watery; it’s syrupy. In my nonmedical description: It’s more like an extra-light karo syrup. That means those of us treated with IG have anywhere from 10 to 90 grams of a sticky substance going straight into our bloodstream. So, it stands to reason that the more hydrated our blood is, the thinner it will be to disperse the thick IG. The less hydrated we are, the higher the risk for blood clots.
When I was treated with intravenous IG (IVIG), I always did my grocery shopping in the days before. Aside from picking up easy-to-prepare foods, I would pick up countless bottles of sugar-free vitamin water. I made a conscious decision to drink the vitamin water the day prior to infusing, the day of and the day after. As much as a coffee from Dunkin’ Donuts was a great source of comfort in the infusion chair, I quickly learned that because coffee dehydrates, drinking it before my IV was started often led to a lot more difficulty in accessing my vein on the first try. So, if I did pick up a coffee on my way to the infusion center, I wouldn’t drink it until my IV was started, and I always had a vitamin water with me to have as a “chaser.” And, my vitamin water was all I drank after my IVIG infusions until my side effects subsided.
Now, each week I administer subcutaneous IG at home. My hydration routine has morphed to purchasing Smartwater in bulk from BJ’s to drink the day before and the day I’m infusing. I still drink a lot of other water as well, but for me, looking at that 33.8 fluid ounce bottle of Smartwater and knowing I need to be sure to drink all of it for a better infusion outcome keeps me on the right track. I time my infusion on Sunday afternoons after I’ve drank at least two-thirds of that huge bottle of water.
Patients treated with IG all have experienced the side effects of having this miracle infusion. Some side effects can be alleviated by premeds, the rate of the infusion or changing to subcutaneous administration. But, it has become my mission to help prevent the most serious side effect by hydrating well before every treatment.