Living With CVID
Guest Post by Cat Latuszek
Indisposed But Not Inanimate by CVID
There are a lot of questions I get asked on a frequent basis, the most common (and least insulting) of which is “how do you do it?”
I will readily admit that it’s a far cry from the “how are you even still alive?” question I felt like my immunologist was asking me on a daily basis for a week in June of 2014. What started out as my getting fed up with recurring ear infections, sinus infections and pneumonia had ended in a scratch test that showed I was allergic to absolutely nothing and an immunoglobulin panel that showed undetectable levels of IgG, IgA, and IgM. Further blood testing also revealed that I had a severe B cell deficiency and what little was there was all in a premature state. The “how are you even still alive?” question was answered by the fact I had a pretty high T-cell count, the only part of my adaptive immune system that was even still working and its level was possibly due to the fact I was rocking my sixth ear infection in six months when the blood was drawn.
What is CVID?
Since my history of recurrent infections dates back to early childhood, it was hypothesized that I actually had a condition called common variable immune deficiency my entire life. CVID, as it’s commonly called, is a condition marked by decreased levels of IgG as well as decreased levels of IgA and sometimes IgM is decreased as well. It’s a rare condition, with approximately 1 in 25,000 people having it. The word ‘variable’ stems from the fact that it presents itself differently in each person. I happen to be one of the extremely rare cases where all three immunoglobulins are completely absent thanks to the inability for my B cells to grow up.
Discovering common variable immunodeficiency disorder
Common variable immunodeficiency disorder for me is only the start, as it happened to climb into bed with another more commonly known condition I have called type 1 diabetes. Type 1 diabetes is an autoimmune condition where the immune system attacks the beta cells of the pancreas, resulting in the complete inability to produce insulin.
The two make for very interesting bedfellows, illness makes blood glucose levels skyrocket and high blood glucose levels result in more infections that are difficult to get rid of. Diabetes is the reason it took so long for me to get diagnosed in the first place, and it makes for one interesting life keeping the two medical conditions in balance and playing together nicely.
The sad truth is that approximately 25% of CVID patients have at least one autoimmune condition. I often get asked how I can have an autoimmune condition when I don’t make antibodies, and the simple answer is there are a ton of components to the immune system, and antibodies are just one link in the chain. Remember those T-cells I mentioned earlier, the ones that kept me alive? We’re thinking that what happened was my T-cells got overly enthusiastic and in the process, a few of the checks and balances that are in place to prevent autoimmunity got missed, resulting in my T-cells attacking the beta cells.
Diabetes that I’ve had since I was 11 years old has sadly been the reason why I was not diagnosed with CVID until I was 29. “If you get your diabetes under control, you’ll stop getting sick all the time!” came out of my primary care doctor’s mouth more than once. As a matter of fact, if I had a dollar for every time I’ve heard his, I could graduate college debt-free and buy a house. The number of times my perpetual illnesses were attributed to diabetes is astounding. What’s amusing is I’ve actually had very few A1c’s over 7.0. But since I never (I repeat, never) tested my blood sugar, the diabetes was automatically out of control. Getting a teenager to test their blood sugar is difficult enough; getting a teenager with an extreme attitude problem to do it is damn near impossible. Since diabetics are generally regarded as being immunocompromised (especially when the diabetes is out of control), the conclusion was that since I wasn’t testing my blood sugar I was not in control, and the out of control diabetes was the reason I was sick all the time.
I do honestly think it’s high time that we not only understand that not only because a patient isn’t doing what the doctor wants they’re “noncompliant” (a term I ardently loathe and needs to be taken out of the medical vocabulary) and to dissociate diabetes with the notion of immunosuppression. Mustapha et al. found that diabetics for the most part unless they have poor glycemic control and are flirting with ketoacidosis, have no evidence of their immune system being compromised. The assumption can be downright dangerous, as possible causes of common variable immune deficiency in diabetics can easily be missed.
Despite all the medical conditions and the further body breakdowns that are now being investigated, I have been able to accomplish quite a lot. Not only am I an occasional blogger but I’m also a mother to a toddler and a full-time student. I have the opportunity to work on cancer research. I also like to cook, garden, dabble in photography and go on nature walks with my family. Which brings me back to the question I brought up to open the piece: How do I do it? Two chronic medical conditions, one of which requires a perpetual need for hand sanitizer and the other one requires around-the-clock monitoring are an intense job to handle. The simple answer is this: I just live.
I am of the opinion that being scared is living, but not living well and I am on a mission to live well. I also happen to be one of those hyper-motivated people who have several missions to accomplish, and staying holed up in my house afraid of the consequences of leaving in my mind is no way to accomplish my missions. So, I load up with vitamins (I have several diagnosed vitamin deficiencies as well), eat low carb and most importantly I make an active effort to spend some time simply resting. When the going gets tough I rely on my support groups to help me through, both online and in person. It most certainly is not an easy life and there are days when I am unable to get up out of bed. But I take care of myself on those days so that I can have a not-nearly-as-crappy day where I can go out and get things done. And thanks to both immunoglobulin infusion therapy as well as an insulin pump, I am able to get things done with as minimal disruption to my life as possible.
There are still several questions that need answering, most of which start with the word ‘how’: How did this happen? How did my immune system get all wonky and in one aspect go on strike but another decide to overact and attack my own body? We may never know the answers to those questions, but I hold faith that someday science will have it figured out. To quote the guy getting tossed on the cart in Monty Python and the Holy Grail “I’m not dead yet!” and in the meantime, I’m just going to go about my usual day, pick my zucchini, eat my zucchini and continue living well.
Cat Latuszek is an undergraduate student studying biochemistry and molecular biology at Michigan Technological University. She is the writer of Paved Silver Roads where she shares her recipes and experiences living with type 1 diabetes and common variable immune deficiency.