COVID-19 and MCAS: My experience

Why do I strain my eyes to watch the thermometer sticking out of my mouth every time I take my temperature­, as if I can control the numbers with my mind?

The thermometer beeps adamantly at 99.6F. I yell, “No, no, no!”

My poodle, Quixote, looks at me, “I didn’t do it.”

I haven’t had a fever this high in four years. Usually I run cold, less than 98F, and I’m already on daily aspirin, a fever reducer. I’ve been self-isolating for two days, after begging my manager to let me work from home. Before that, I limited myself to work and the grocery store. There are only a few confirmed COVID-19 cases in my state, so I wonder if I have the flu. In 2016, the flu almost killed me, so this no consolation.

Soon after, I poop my guts out and decide to clean the toilet. I squirt the toilet cleaner into the bowl, standing as far away as possible, ready to run when the bleach hits my sensitive MCAS nose. Except this time, it doesn’t hit me. I lean in and sniff the toilet. Nothing.

I run to my closet, grab a bottle of bleach, insert my nose into the opening, and inhale. (Do not try this at home.) NOTHING. My throat should be swelling shut by now. My unrestricted breathing triggers my worst fear.

“I am dying!” I text my closest friends.

I message my symptoms to my primary care doctor. She says in order to meet the criteria for COVID-19 I must have shortness of breath or a cough. If these symptoms develop, she recommends I go to the ER.

I’ve played the wait-and-suffocate game enough times to have a panic attack when she tells me this. I know the criteria are arbitrary. As my service dog, Sancho, runs to my side, I flashback to my fight for my MCAS diagnosis. I knew something was very wrong; my body told me so every day. For a whole year, I begged for someone to take my body’s warning signs seriously. Countless doctors dismissed my fears, and I still live with the consequences.

On day two, the fevers and pooping continue. Benadryl does nothing. I know I have a virus, but I also know urgent care will dismiss me if I ask for a COVID-19 test. So, I ask for a flu test. I explain that both COVID-19 or the flu could kill me. The urgent care doctor orders bloodwork instead. The results are normal per usual.

“Your white blood count is normal, so I highly doubt you have the flu. The flu would have hit you harder,” he says.

I don’t disagree. I ask, “Would my white blood count be high if I have COVID-19?”

“No,” he says. “Often it decreases. But your white blood count is normal.”

“But I’m on prednisone,” I argue.  “So, my white blood count should be higher.”

“You’re on prednisone?” he asks, as he quickly clicks into my chart, which lists prednisone as a medication. “Huh.”

Nevertheless, my labs are normal, so he shoos me out the door. More cars carrying suspected COVID-19 patients pull into the parking lot.

For the next week, I try to manage my symptoms, while preparing for my demise. I check my oxygen levels every half hour with my pulse oximeter. I write an instruction manual for Quixote: We’ve been co-sleeping for 10 years, so good luck keeping your bed poodle-free. At times, the chills, headache, and sore throat are overwhelming; other times, I feel completely healthy. This virus likes to play mean tricks.

On day 8, my breathing worsens, despite nebulizing cromolyn religiously. My oxygen level drops to 95% and I begin negotiating with the coronavirus, imagining it is Ursula from the Little Mermaid.

“I just want to live,” I plead.

“We haven’t discussed the subject of payment,” the coronavirus growls.

“My voice isn’t all that spectacular, but how about my sense of smell? You already took it anyway. Where do I sign?” I ask.

Articles citing diarrhea and loss of smell as symptoms of COVID-19 start circulating the internet. I read several patients’ symptom journals; they resemble mine. I learn deadly pneumonia often develops days 9-12, but tests are now only available for people who are hospitalized. I worry these might be my last few days. I watch several hours of shitty reality TV anyway.

My heart rate drops to 65 beats per minute for no apparent reason. I have hyperPOTS and have not seen my heart rate this low since the flu almost killed me in 2016. This continues for two days, and then my heart rate mysteriously returns to normal.

On day 11, my chest felt lighter until I eat lunch. Thirty minutes after eating pasta, I experience a severe, but familiar, asthma attack.

“Welcome back,” I wheezed to my mast cells.

Today is day 12. I’m pretty certain I’m going to live, because I started caring about changing my sweatshirt before my daily Zoom meetings with my coworkers. As expected, my mast cells are still fighting the virus that likely died a few days ago. I will probably need to keep dousing them with drugs for several weeks, but right now their exuberance doesn’t frustrate me. After all, they kept me alive.

 


 

Notes and acknowledgments

  • I was on 2mg prednisone the entire time. Other than the prednisone, I am not immunocompromised.
  • I continued my daily medications, including 325mg aspirin and 20mg montelukast sodium.
  • This would have been a lot scarier without nebulized cromolyn, an albuterol inhaler, and a pulse oximeter. I likely would have need to go to the hospital without these tools. I never developed a cough.
  • The flu in 2016 was a hundred times worse for me (my liver shut down), but I also didn’t have these tools.
  • Special thanks to my friends who left food on my patio, and Nicolle, who listened to my every symptom and fear… like EVERY symptom and fear because I still want to believe texting them makes them go away.

7 thoughts on “COVID-19 and MCAS: My experience

  1. This is a super interesting post! I’m so sorry you went through this (MCAS sounds miserable no matter what), but I really appreciate you sharing your experience. People sharing their COVID experiences are always helpful given how little we know about the virus, but it’s extra important when it’s coming from a chronic illness patient.

  2. I’m so happy you survived your blog is a lifesaver. Unpopular disease zebras don’t fare well without a herd! Did you continue the asprin during Covid19 symptoms because your Dr. Said NSAID/CoVid19 issues were bogus or because the alien baby prostaglandins hurt more than the COVID 19 symptoms? Did you have uterus prostaglandin contractions during virus, if so did your temp spike during simultaneous attack? Asking for a zebra normally running 96%.

  3. Thank you for sharing. Many of us with MCAD are waiting to see how we do… It’s great to know that at least one of us made it through! Stay well.

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