Thread by @ShreyaKangovi

I’ve been out for the past 6 months.

I think I want to write about it.

Deep breath: here is my #LongCovid story.

You may remember this tweet from April of 2020.

Gandalf let me down, and I ended up getting #COVID19 just 3 weeks after getting H1N1 influenza. (I am a doctor and toddler mom, pretty germy).

https://twitter.com/shreyakangovi/status/1254036247632392193

The night that I got #COVID19 it felt like broken glass was running through my veins. No fever but just that icy chill. Horrible, rotten smell in my nose. And strangest of all a buzzing feeling, a restlessness. It made me want to crawl out of my skin. I couldn’t sleep that night.

The next day I couldn’t (didn’t) rest. We were in the throes of a pandemic, and civil unrest. And I lead a #socialjustice/#publichealth organization.
We were providing essential support to thousands of Philadelphians during a crisis inc delivering 100K meals. Go time.

I remember that day, I joined my colleagues @HealthBegins @PIH @rajpanjabi @HealthLeadsNatl and NACHW for this fiery webinar.



It was such a great opportunity moment. I wanted #CHWs to be heard and couldn’t sit the bench.

The days went on, but something was wrong.

My hair fell out. My sinuses hurt. I felt fatigued and foggy. I realized that I had written in my notebook backwards, from the back to the front.

And still this buzzing restlessness. In my diary I wondered: was this in my head?

Days turned to weeks and months. I was exhausted but couldn’t sleep. I lost my smell and sense of joy.

I didn’t look the same. Was this just stress? Was I reinfected? Was I turning into a pangolin ala Batman? #LongCovid had not yet been described.

Finally in August of 2020, I read this @TIME article. Later I also felt grateful for incredible coverage by @edyong209 and @60Minutes.

time.com/5880191/long-h…

In September I found out that @PennMedicine had opened a #LongCovid clinic. I made an appointment and met Ben Abramoff.

To this day I’m so grateful. He listened, was thorough and was able to merge patient-reported data with good clinical judgement.

pennmedicine.org/providers/prof…

During that appointment, I failed the 5-word recall during the cognitive screen. I could only remember 1 word.

Even when he prompted me: “It was a body part.”
Me: blank
Ben: “Was it a face, arm or leg.”
Me: blank

Needless to say: that wasn’t normal.

Yet I was still cranking at work. We formed a coalition of orgs and worked with @SenBobCasey and @RepTedDeutch on a letter to @CDCgov urging allocation of pandemic dollars to #chws. @CDCgov listened and eventually put out this historic funding.

cdc.gov/media/releases…

We worked with @POTUS (then candidate Biden) to make sure he incorporated a promise to create 150,000 #CHW jobs as part of his caregiving economy platform.

chw.upenn.edu/2020/11/09/joe…

It was hard to slow down. And no one from the outside could really tell how sick I was. Except for clinic, I was just in a Zoom bubble. It was like being trapped in a snowglobe.

Eventually my mom and husband convinced me that I needed a break.

Now my privilege comes in. The rest of the story is happier, because I happen to be a well-off, highly educated and connected person with an incredible support system.

Look for:
💲Money 👍🏽Access❤️Social support.

…in this story and your own.

I am on faculty @Penn and we have the privilege of being able to take a sabbatical. 👍🏽

In March of 2021, I started a 6 month leave. I worked a little. But mostly I rested.

The hardest part of the decision to take time off was feeling like I was abandoning my team @Penn and IMPaCT.

But my team supported me. “You need to take care of yourself” they said. Very #CHW ❤️

They not only covered it all, they kicked butt while I was gone.

We moved out of our beloved @italianmarket row home and into a larger house 💲where we could live with my parents. ❤️

My parents, whom I hadn’t seen in a year, got me back to health. They watched the kids in the morning so I could sleep. They fed me. I am forever grateful.

I went to doctors appts that I hadn’t made time for. I had the best care.👍🏽💲 @PennPrimary Dr. Aba Barden, @pennsleep, and others.

I was diagnosed with an encephalitis, inflammation of the brain.

My sleep study looked very similar to the drawing I made in my diary.

45 arousals *per hour*. (The red dots)

My sleep had too much stage 1, not enough stage 3 or REM.

Basically I was dozing on a bus all night. For over a year.

When I started my sabbatical I looked like this. I couldn’t walk more than 10 blocks without feeling short of breath and crushing fatigue.

With medication, rest👍🏽, gradual exercise and love ❤️. I got a lot better.

And then finally…the horse run. 🤣

Now I’m back at work and for the most part, feeling better although I still have my days. Its a combination of recovery and adapting to a new normal.

So yea. That’s my story. But I know there are hundreds of thousands of #longhaulers out there who may not have all the privilege that I do, and are going to suffer for it. I can’t even wrap my mind around that. All I can do is promise to pay it forward.

cnn.com/2021/09/29/wor…

Cc’ing friends and colleagues who have been so supportive and other who may have been wondering where I’ve been. ☺️

@Eugenia_South @Rsbeidas @megansryerson @dawn_alley @rebekahgeemd @ChidinmaIbePhD @Kidd5472 @ninonlewis @rm_werner @uche_blackstock @meganranney @jaygirimd

Being at clinic just now reminded me that I also need to shout out my amazing colleagues at @SpectrumHSInc. I am like really protective of my patients and give them all my cell phone number. I didn’t get one call for the whole 6 months because they were taken care of.