It’s a Small World After All

The cruelest April fools joke has been played on me today. I received the call. It’s my turn to get the vaccine. It seems I am destined to live in the smallness of quarantine for an undisclosed amount of time. When I thought the world would be opening up for me, it is actually getting smaller. This has been my experience for the last four years: other people’s world’s expanding, mine, collapsing. As vaccines plunge into arms, I do not gain the benefits of being a healthy body in a sick world.

Panicking, I rush to continue to seize all the opportunities afforded to me due to the pandemic. I have enjoyed the access to classes and experts online because that’s how they can survive too. Anyone with a service has had to figure out how to offer it without contact or limited contact. This is the dream for someone like me. Reducing the chance of getting sick is a game I’ve been playing for a while. I’ve been wearing masks and washing my hands after coming into contact with anything or anyone since before it was a hashtag. Now, as the vaccine rolls out (yay!), businesses, schools, and people with well-functioning immune systems are all figuring out how to open up. People are making plans to connect, travel, and hug.

I thought I might get to join in the fun. I thought, “It’s my turn! I’ve done what I was asked to do and now I can get the vaccine so I can move through the world a little more safely. When I opened up the email saying I was eligible fore the vaccine, I was giddy. I scheduled my appointment for the first available day at my local hematology office.

I have a suppressed immune system and a chronic condition where my donor immune system attacks my healthy cells (graft versus host disease). Once I scheduled the vaccine appointment, I heard a nagging voice, “Check in with your doctor. You haven’t seen him in over a month. Make sure it’s still ok for you to get it.” I am a rule follower. I called.

Within a few hours, I received a response. “Dr. S does not recommend you get the vaccine at this time.” Disbelief sat firmly in my gut. I winced in confusion. I immediately fired back asking for more details. Why? I asked. Why has the recommendation changed? After several back and forth emails and a long phone call, a truth that I already knew was revealed.

There’s a chance with any vaccination that I could have a graft versus host flare. A painstaking side effect from my bone marrow transplant. The delivery system of the COVID-19 vaccine has always given doctors pause for transplant patients who are immunosuppressed because there isn’t much data on how it will affect us. Two months ago, the recommendation was for immunosuppressed patients to get the vaccine. Two weeks ago, those recommendations changed. New information is coming out that people are getting graft versus host flares. My doctor has an obligation to share the most recent findings.

If I wouldn’t have called, I would have gotten the first dose of the vaccine. Now that I’d been advised not to, I was struggling. I ache to get the vaccine. I want to do things again. I want to have my other vaccinated friends over and enjoy a meal together. I want my kid to go back to school. I know a vaccine is not a silver bullet. I know a vaccine does not mean a return to pre-pandemic living. Getting the vaccine means I don’t have to have as much fear about dying if I contract COVID-19. Bone marrow transplant patients are 30% more likely to die from COVID-19. All my underlying conditions only confound the odds against and non-severe outcome for me.

I am faced with what feels like an impossible choice. Get the vaccine and risk a Graft versus Host disease flare. That means going on high-dose prednisone for an unknown amount of time. It means increasing other medications to keep my immune system from overreacting. These medications tax other systems of my body. I’ll be alive and it means being in pain and discomfort. The other choice is to wait to be vaccinated for several months. As people loosen precautions and restrictions, public spaces will become less safe for me. The more the world opens up. the more I will need to close off.

My fate is left to the (un)covered mouths and (un)injected arms of strangers. Herd immunity can be reached if at least 70% of the population gets vaccinated. I am living in the lowest vaccinated area of my county, which is the lowest county to be vaccinated in my state. I am tired. I want to see my friends. I want to let my family see theirs. Please consider getting vaccinated if you haven’t already. The more people that can will help protect those of us who cannot.