I was having a conversation with another local long-hauler last night; she reached out as she’s been feeling pretty isolated regarding the toll her post-covid experience has had. In some ways she has much clearer damage than I do, like scar tissue in her lungs from the pneumonia she had. This should make her more legible to getting medical care but she also had COVID before testing was available and some Long Covid clinics are requiring proof of a positive test to be eligible for referral to the clinic. So while I have no “proof” of Long Covid since all my labs and tests are “normal”, she has no proof of her original serious acute case. Both of us are kind of screwed.
There’s so much to tell in a Long Covid story, especially as so many of us are approaching two years with the condition. I’ve struggled to talk expansively regarding the ways I feel like the medical establishment’s standard operating procedures haven’t worked for me because it’s a collection of seemingly helpful things that didn’t actually help. People with ME, fibromyalgia, Lyme, POTS, MCAS, EDS, and other chronic and evasive-but-debilitating post-viral conditions have known this struggle for decades before COVID.
So. Instead of trying to synthesize it all, I’m just going to try and tell the chronology of what I experienced in the last 20 months using my MyChart medical records as my scaffolding and see if it makes sense at the other end. This could be a much longer post than I usually write.
I tested positive during a mass testing event at my job on 5/1/2020. I wasn’t sick and didn’t have any known exposures but testing was still pretty novel and unavailable to the general public at the end of April so I took the opportunity to get tested. Though I did have some mild shortness of breath that I had attributed to a newfound level of early pandemic anxiety, I was considered asymptomatic and was allowed to return to work after 10 days at home. No one else in my house got sick.
May 2020 in Minneapolis was a literal hellfire; I barely remember anything happening to my body at the time. But I guess I was still feeling weird in June because MyChart says I got another covid test; it was negative. On July 6th I requested an e-visit with my PCP who requested a bunch of standard labs: CBC, my usual thyroid tests, and I asked her to check for Epstein-Barr because I dealt with re-activated EBV once before and I was feeling similarly to how I did then. I also asked my PCP for an endocrinology referral; I’ve had an autoimmune thyroid condition my entire adulthood but had never had labs like I had in June. (My TSH was at a 24; IFYKYK) July 15th I got another covid test and a chest x-ray; also negative. July 20th, my PCP was unavailable that week so I saw another doctor in the clinic. She prescribed me an albuterol inhaler and told me in that visit that my chest pain “sounds like costochondritis” but never noted it in my chart.
In August, still feeling weird- tachycardia, heart palpitations, fatigue, malaise, vomiting into my mask in the backseat of my boss’s car- I had another visit with my PCP who ordered me a Zio patch heart monitor that I wore for 2 weeks. On August 24th, I had a virtual appointment with a “best in the state” endocrinologist who, when I attempted to explain my swinging thyroid levels and the fact that I hadn’t had thyroid meds for over 6 weeks because my pharmacy had burned down in May, suggested that actually I was overmedicated for my thyroid (something that’s never happened in 12 years) and dropped my dose down two levels (from 175mcg to 125mgc). I tried to ask about the fact that I was seeing reports of acute thyroid toxicity following covid in the Long Covid group I had just joined on Facebook but was brushed off. Her skepticism about my sourcing information from a FB group was evident. She was curious about my facial flushing though.
September 3rd, I did another round of labs with my PCP: CBC, cortisol, tryptase. All normal. My blood pressure was up a little bit from my normal (139/89) but otherwise I was fine. September 28th I met with the cardiologist who reviewed my Zio patch results. He was very generous with his time and attention and was the first doctor to tell me that while he believed me that I was having post-covid complications, my heart monitor results showed lots of tachycardia but no mechanical heart issues and he didn’t anticipate finding anything remarkable with further imaging but invited me to contact him again if needed.
On October 11th, feeling pretty bad and having been nursing a hearty leg cramp and very swollen ankles for over a week, I went to urgent care hoping they would do an ultrasound to rule out deep vein thrombosis; something else I had seen reported as a common post-covid complication. I didn’t actually think I *had* DVT but wanted to be sure. The urgent care, after triaging me in this intense, full PPE way even though I told them I did not have acute COVID, told me sorry, but we don’t actually have an ultrasound machine here so you’ll have to go to the ER. I went to the ER, apologizing for utilizing resources this way and had a bilateral ultrasound of my legs as well as a chest CT and EKG to rule out pulmonary embolism. Another round of labs were done: CBC, CMP, troponin, magnesium. Other than another elevated blood pressure; higher even than the high-for-me reading in September (144/102). All of the labs and imaging done at the ER were normal (my CRP was only mildly elevated at 11.9) but the nurses were nice enough to validate that I had done the right thing by coming in.
It’s November 2020 and I’m still feeling terrible (profound fatigue, sweating alllll the time, heart pounding, swollen ankles, puffy hands, random shooting pains- just really white knuckling it, honestly). There is still plenty of COVID at my direct service social work job so I got another covid test on November 27th; still negative. I’m missing a handful of days of work a month by this point but I’m also trying to pick up shifts at critical moments because we can barely staff our agency’s shelters and support residences; tons of direct service staff are out with covid or at least quarantining after exposures.
I had joined the Long Covid Support Group on FB back in August even though I didn’t identify myself as a long-hauler at that point. My case had been asymptomatic! and I’ve experienced chronic illness before! and maybe I’m just lazy. But the relief and seen-ness I felt when I joined the group was so profound. And, because of that group and the attention I was thus paying to Long Covid, in December 2020 I was aware that the medical system I get all my care through was launching a post-covid clinic. On December 9th, I had another set of labs (my TSH was 1.96; my CRP was a 13; *head nod to the other chronically ill nerds tracking their own labs*). Here’s what she wrote in her progress note:
“Here to have thyroid labs done from endocrinologist 8/24/20 after dose decrease to 125 mcg. Referred to endo after very high TSH. Pt has been taking the 125 mcg daily regularly since 8/25/20. She has maybe missed 1 dose per week maximum. Post covid symptoms continuing but better. Most troublesome are sleep disturbance, inability to regular temperature and fatigue.Tachycardia and bilateral LE edema both better since seeing ER 10/11/20. Hard time falling asleep and staying asleep. Aware of each turn in bed. No particular reason for waking, SOB not waking her up. Having night sweats 60% of nights. Sleeps without clothes and the windows open. Now having some nightmares. Also sweating throughout the day without any exertion, skin gets hot to touch, no fevers. missing work 2-3 times a month, had to do a PTO donation, may need letter/forms if needs another PTO donation.”
my Mychart progress note from a PCP Visit on 12/9/2020
I asked my PCP for a referral to the new clinic housed in their physical therapy department and she obliged me.
Whew. This story is so long. Shout out to MyChart for helping me tell it. I guess I’ll have to pick up this thread (because even this long-winded telling doesn’t capture much of how I’m feeling, all the other bananas shit happening at the personal and global scales, or any other facet!) starting from December 2020 into 2021 in a future post. Stay tuned; we’re not even to the good part yet.