When Your Treatment Makes You Feel Sicker

I have a primary immunodeficiency called common variable immune deficiency (CVID). What this condition encompasses can basically be summarized as “I have a weak immune system.” It’s only life-threatening if I have contracted an infection, but even a simple cold can send me to the emergency room or render me bedridden for months. Given that basically everything is slathered in a coat of germs and bacteria, and probably some sort of bodily fluid, I receive monthly infusions of blood plasma to help supplement my lackluster immune system and give my body some sort of defense mechanism against all the viruses people trade. I still get sick, and when I get sick it tends to be a lot more dramatic than when someone with a fully functional immune system gets sick, but my intravenous immunoglobulin (IVIG) infusions have significantly lessened the amount of infections I get.

I haven’t had pneumonia since I started IVIG five years ago, I no longer have a perpetual cold, and I haven’t needed to be on antibiotics for any longer than your average 10-day course (trust me, that’s a huge achievement for me.)

All in all, IVIG has made me a “healthier” person. I’m not going to share a straw with my friends, and I will still wash my hands at least 20 times a day, but receiving IVIG has allowed me to relax a little bit when it comes to the fear of contracting an infection. I can go to a concert. I can use a public bathroom. I can be within five miles of someone when they sneeze.

Every fourth Friday at 8 a.m., I go to the hospital my immunologist sees patients out of and go up to the specialty allergy/immunology clinic for my routine infusion. It takes around five hours; my IV typically goes in my left hand where my most reliable vein resides; I get fluids, iron, hydrocortisone, B12, and blood plasma. These things are either supposed to ease the side effects of the infusion (fluids to prep my veins, hydrocortisone to alleviate symptoms associated with getting two liters of fluids infused while your body struggles to accept them) or are meant to help me (B12 and iron for my assorted deficiencies and severe anemia, plasma for my insufficient immune system). They are good fluids with a purpose. They are overall helpful. They keep me from dying from a staph infection.

But they also make me feel sicker.

The side effects of these required monthly infusions that literally stop me from dying are absolutely horrible. I get migraines complete with aura and black spots, chills, and a fever for the first three days afterwards. My muscles and bones will ache for up to a week. I will be itchy. My skin may turn red; I usually develop a rash. Sometimes my headache is so extreme that I cannot turn my head; I am sensitive to light and sound; I usually throw up.

I absolutely despise receiving my plasma infusions despite the fact that they are ultimately considered “good for me.” I genuinely loathe them. I hate that they are considered “good for me” at all, and that I need to continue getting them if I like going for long stretches of time without coughing up green phlegm or being rushed to the emergency room for intravenous antibiotics. I hate being tethered to the hospital; I hate that I need IVIG, and I hate how sick I feel for days after I receive my infusion.

CVID is not a dramatic chronic disease by any means. It doesn’t really display itself in any visible way; it shows its presence through chronic ear infections, frequent pneumonias, bronchitis and stomach flus that cannot be shaken. It hides in my blood and plasma, is evident in my lack of certain necessary components of the immune system. It is a quiet disease with a conspicuous treatment. I hate that almost as much as I hate the symptoms I get after IVIG. In a way, my IVIG treatments are the only identifier that I even have a primary immunodeficiency, and I hate that I have to explain my absence every fourth Friday to friends, professors, group project members, lab partners, neighbors, and literally anyone who notices the gauze and medical tape on my hand or the hospital bracelet I can never wriggle out of without the help of scissors.

My treatment may be necessary, but I hate it. It may keep me healthy overall, but for a brief stretch of time it does make me sicker.

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