CVID is chronic. I'm in it for the long term. This month, next year, for all months to come (and I hope there are many ...). Like diabetes, my body needs regular "topping off" to function "normally". Insulin is administered multiple times a day for people with diabetes. Gamma globulin is infused less often to CVID "zebras" like me who do not produce our own immunoglobulin, whose immune system has basically run out of gas. We are empty. Our bodies just do not produce immunoglobulin to fight infections and we are constantly sick. My immune system seems to have run dry in my mid 20s but it took 30 years of coughing, pneumonia and bronchitis, shingles, hashitoxicosis, and lymphoma before all the puzzle pieces came together, an immunoglobulin panel revealed my lack of immunity, and a treatment plan was developed.
Thanks to the wonders of modern medicine, I can boost my immune system with the gift of immunoglobulin derived from generous blood donors. In choosing to have gamma globulin delivered via IVIG directly into my veins, I have opted for an infusion that should provide me some immunity from infection for a full month. Subcutaneous infusions are administered weekly (or biweekly through a new delivery system) through injections into the fat layer of the abdomen. I confess that the decision between IVIG and subcutaneous options came down to scheduling and convenience. Once a month seems MUCH less invasive than a weekly schedule. Yes, it's a full day but it's one and done. I also am spared of a subcutaneous "sac" of liquid waiting to be absorbed overnight. Also, how do you travel? How can you feel untethered from the relentless weekly schedule of that multi-hours infusion? So, I am happy with our choice of delivery system yet remain fundamentally wary of what I am doing once a month.
I am still unnerved about welcoming foreign blood products into my veins once a month. We simply don't know what we don't know. HIV-AIDS? Mad Cow? Transfusions of tainted blood spread these and other diseases before the medical community was aware of the threat. It would be naive of me to trust completely that there is no risk. I am exposed to donors' immunities as well as possible pathogens. Yes, I will eventually borrow others' immunity to Zika as it becomes endemic and builds in the population. Yet medical knowledge has limits. Any rose-colored glasses were shattered (and then ground into the pavement) when multiple medical teams advised that a risky allogeneic Bone Marrow Transplant was absolutely necessary for my survival only to have Johns Hopkins say "sit tight", to hear UCSF agree that the BMT advice was "protocol but no longer advisable", and to remain lymphoma-free 4 years later without that extremely dangerous procedure. Consider me a cautious skeptic of all things medical. "Completely safe." As far as we know. For now. I'll take that with a heaping teaspoon of salt and say "sounds good!".
So far, so good. No side effects and no illnesses. Also, since I am trying (with limited success) to avoid Google, I am calm. As was the case with my lymphoma and chemo, I am offering this overview of my benign, mundane CVID experience as a counterpoint to all the horror stories online. All's well. Nothing to report. Smile, be grateful, and be hopeful.
Bottom line? I have not been sick all summer... BUT that is par for the course for these non-school months when I am quarantined from a classroom of children. The true test will come after Labor Day when I am fortunate once again to be working with young children in the petri dish of an active classroom. I am optimistic that my boosted immune system will do the trick and that I will avoid the debilitating coughs that are the soundtrack of my school year!
