I Take 33 Pills Each Day and Have No Immune System: I’m the Reason COVID-19 Masks Still Matter

I don’t know anyone who isn’t experiencing some form of pandemic fatigue. That’s just the reality. It would be nice to see one another’s faces, gather in large groups, attend concerts, travel like we used to (without fear), not have raw skin from washing so frequently, and just not have to be concerned about the virus. I know these examples are truer for some of us than others, and we have all been impacted by this virus.

In March, my state (Oregon) lifted our indoor mask requirements. This week, I received my fourth COVID-19 vaccine. As I write that, it’s easy for me to imagine how someone reading it could think, “Wow! Four vaccines, she’s really protected!” However, things are not always what they seem. Let me give you some context.

In my late 30s, I got mono and never seemed to recover. What started out as a virus turned into a “post-viral condition,” that became myalgic encephalomyelitis. This is much like what happens to people who get long-COVID. From there things snowballed, and I was diagnosed with fibromyalgia. Within two years, I contracted an autoimmune disease called polymyositis, which is a muscle-wasting disease – muscle dissolved off my bones at an alarming rate, leaving me unable to stand from a seated position, walk without assistance, or roll over in bed. This disease is part of a cluster of autoimmune diseases called antisynthetase syndrome. In two years’ time, my lungs were turning into scar tissue, I was using oxygen full-time and was referred for a double-lung transplant.

My team of doctors has been able to slow the progression of my lung disease and keep me stable enough to get off the transplant list, although I live with about 17% lung function. In order to accomplish this, I take 33 pills each day to maintain the relative stasis I’ve reached over these last 11 years. Also, I receive IV medication to keep my immune system from attacking me so vigorously. The main action of the IV meds is to target a protein (CD20) on my B cells to keep them from maturing and deplete the overall number of B cells in my body. Because B cells are a big part of our protective immune system, they help us fight. In my case – that often means they are fighting me. 

Unfortunately, B cells are a major part of how vaccines replicate and protect us. If you’ve hung in here with me so far, perhaps you can see the problem. If I don’t have B cells, and the ones I do have aren’t mature, how can the vaccine effectively work in my body? The short answer (after years of studying the COVID vaccine and others): it can’t! In bodies like mine, vaccines do not effectively produce antibodies for my body to “remember” and fight the virus, as numerous studies have shown. In one of these studies, the effects of the vaccine in people taking my medication were described as “statistically insignificant.” That’s why the CDC keeps allowing us to get boosters – with the hope that we might produce some antibodies.

So, when I hear “we’re dropping our mask mandates,” (as is now true across the nation) and “offices are returning to in-person work,” (without social distancing requirements) and that companies like JP Morgan Chase and others are no longer requiring employees to report COVID infections, I’m scared for my life.

I’m not sure I would survive getting COVID-19.

All this at a time when the newest variant, BA.2, was described by the World Health Organization as “substantially more transmissible” than Omicron. 

I receive my IV meds at an infusion clinic within my rheumatologist’s office. Until quite recently (because of a mandate by our governor) many of the staff were unvaccinated. While I understand the matter of choice when it comes to vaccines, 100% of the population those four nurses serve are immunosuppressed, immunocompromised, or both. In cases such as this, it seems outrageous we don’t require the vaccine. By contrast, because I still get other treatment at my large transplant hospital, I have seen some of the best and most effective COVID protocols in place since the beginning of the pandemic. When I go to my infusion clinic, their standards have, at times, seemed feeble by comparison: not requiring the vaccine, not testing staff (ever), allowing cloth/personal masks rather than surgical or N95 masks, etc. I’ve requested changes and have been in touch with the manager of the facility. My fears were realized when, shortly after one of my IV treatments, one of the nurses came down with COVID. 

At this point, it seems like choosing to go to the infusion clinic to receive IV medications that are saving my life, means potentially putting my life at risk.

It is a lousy way to feel. Now that mask mandates are changing, my very limited ability to leave the house for occasional outings for a bit of shopping or something social has ended abruptly. With such a severely suppressed immune system, I often get sick when no one else around me is. My wife brings home a cold that her system is strong enough to fight, I pick up something from hugging a friend that they weren’t even sick with. Much like what scared us early on about COVID, you can have it and not know it. And as a person who’s vaccinated or not, you can carry bits of the virus around and not be sick with it. 

We know face masks are an effective way to prevent the spread of COVID-19 and other airborne diseases. If you’d be willing to wear one when you’re out in public, it might help save my life. When we’re both wearing a mask, the likelihood of disease transmission decreases even further. Perhaps my story sounds extreme to you, but surely there’s someone in your life who has a child with cancer, an aunt on dialysis, or an elderly relative. Remember in the 80s when businesses had the “No shirt. No shoes. No service.” signs? We are all wearing shirts and shoes when we go out; what’s a bit more cloth? I’ll tell you what it is, it’s a somewhat inconvenient but compassionate, and thoughtful, choice to consider all our health and well being.