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Ben


What was your life like before you received the COVID-19 vaccine?

On December 14th 2021 I was thriving. I was in the gym 5 days a week, I was ramped up to my new job, and the last time I was sick was March 2017 when I had a sleight cold for two days. When the Omicron variant was making the news I decided I'd get a covid booster shot. I did so simply because I didn't want to get sick. I'd heard of long covid and I thought I could rely on health officials to inform me how I can navigate the pandemic. I knew nothing about adverse reactions so I figured it was just a net positive to get more protection from the virus. My first pfizer dose on April 22 only caused shoulder pain for a few hours, my second pfizer dose on May 13 knocked me out for a day, and I assumed my booster wouldn't be much worse than the second dose.

Describe the symptoms and the timeline of the reaction.

December 15th 2021 was the last normal day I'd have for a very long time. I worked in the morning, went to the gym, got my booster (moderna in left arm) at about 5 PM, then finally went to a work holiday party to see coworkers and eat pizza (I don't drink).

When I was walking home at around 9:30 I started to feel the first side-effects of the booster. A little achy-ness and little fatigue. By 10:15 I was asleep. Around 2:30 AM I woke up and have never felt so terrible in my life. Every muscle in my body hurt and I felt a heavy (~25 lbs) weight on my chest. I spent almost all of December 16th sleeping or trying to sleep. December 17th I woke up to the same chest pain in the night. I felt fine the afternoon of December 17th, but in the evening the pain came back. This continued until December 19th when I was told by a family member to go to the hospital.

When I went to the ER they did a few blood tests and an EKG. The doctors didn't seem too concerned until my Troponin-T levels were almost 90x the maximum "normal" value. They took a CAT scan to verify I didn't have an active blockage in my heart, then they told me I needed to be admitted into the EW and kept there a few days. I walked into the hospital around 9 AM, diagnosed with myocarditis around noon, and wasn't in my room until about 7 PM because getting my room ready took so long.

I had a few inpatient procedures during the two days I was in the hospital. They did a covid antibody test and a bacterial antibody test to rule out other possible vectors for the cardiac inflammation (I hadn't had covid and the coxsackie antibody test didn't have any interesting results), they did an echo, and they took an XRay of my lungs (I think as a pneumonia check? I don't know why). I was ultimately diagnosed with "covid-vaccine myopericarditis". I was entered into VAERS (ID 1962935-1). Once all the tests were completed no nurse or doctor I ever met ever doubted the cause and all my paperwork makes the link to the vaccine clear.

December 22 I got an MRI and my left and right ejection fraction were measured at 51 and 52 respectively.

I was initially prescribed asprin for 2 weeks and colchicine, but when the 2 weeks of asprin ended I had a terrible pain in my back from the colchicine and I had to change my prescription to ibuprofen taken 3x/day.

The next four and a half months were incredibly difficult. I spent hundreds of hours in pain alone on my couch. Sometimes I was in pain all day, sometimes I was in pain most of the day, and on some rare days I had almost no pain at all. I took up an art project making a special bag for my grandmother's 92nd birthday, I spent a lot of time with friends playing Magic: the Gathering, and cooked a lot of good food. When I started taking the ibuprofen I gave each day a "pain scale" out of 5 and over time there were less 5s and more 3s then all 2s until the 2s became 0s. Despite eating ~2,000 calories/day I lost 25 pounds between Dec 15 and April 20.

By early April the pain was ~5 seconds/day (a big step up from 8 hours/day in January), and by the end of April I was able to get back to lifting weights again. June 21 I had my follow up CMRI and my cardiac ejection fraction was measured at 66. The small fibrosis on my heart shouldn't have any effect on my heart's pumping function. Total cost was a little over 5 grand; I hit my health insurance out of pocket max.

Now that I'm healed I feel like I have a special duty to make sure people know about these adverse reactions, and I hope my story can give hope to other people who have gotten myocarditis that healing is possible

Describe the solutions that helped your symptoms

Ibuprofen helped, spending time with friends helped, and working on something creative helped. I also think **not** being gaslit by my medical providers at Mass General was a big help - no one at MGH or my PCP's office tried to suggest something else mysteriously inflamed by heart.

Which solutions were not helpful?

The Colchicine caused back pain, but I'm an outlier since it has apparently helped others. Another big help was hearing from people who have recovered from myocarditis which is why I feel so strongly about sharing my experience.

What would you like others to know?

That myocarditis is something you can recover from, and when you have it the most important thing to do is to get lots of rest and not worry about whether you will ever be able to life a normal life again.
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The individual experience shared above is offered for informational purposes only. React19 neither endorses nor recommends any treatment(s) noted therein. React19 does not diagnose medical conditions, offer treatment advice, treat illnesses, or prescribe medicine or drugs. It is strongly recommended that, prior to acting upon any information gleaned from a shared experience, you first consult a physician.