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).
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.

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.

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.

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.

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.

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.

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More from @ShreyaKangovi

20 May 20
Every state/local #Covid_19 initiative I’ve read about is making one of the following mistakes.

1. Ignoring community altogether and just doing apps.

Case example: Utah.

$2.75 million to purchase an app PLUS a *monthly* maintenance fee of $300,000.

(Could’ve employed 100 FTE #CHWs with this $ but who’s counting)

And the app isn’t working.

2. Vaguely referencing “shoe leather” and community engagement but no mention of the #CHW workforce who already does that.

Case example: almost everyone.

“Cultural literacy is key to developing trust.”

(Really? Then hire someone of the same CULTURE!)

Read 6 tweets
12 Apr 20
1/ Here are two very different takes on the racial disparities in #COVID19. If you read them back to back, you’ll have a perfect understand of the root cause of most racism and inequality in the world: the fundamental attribution error.

2/ Article 1 @phillymag is some classic victim blaming from my hometown of Philly:

3/ “My fiancé and I *decided* to only grocery shop online and no longer go outside for anything.”

Then rails at African Americans for not doing the same.

Umm who’s delivering your groceries? Picking up your trash? You get $ to sit home and write, others have to go drive a bus.
Read 7 tweets
3 Feb 20
Feb @Health_Affairs is out!

We did a formal return on investment (ROI) analysis of the IMPaCT community health worker program using randomized controlled trial evidence.

Each dollar invested by Medicaid returns $2.47, annually.


@threadreaderapp unroll
This paper is important because most estimates of ROI from #SDOH programs are likely exaggerated because they are based on pre-post studies.
It’s important to note that IMPaCT is highly structured with fixed caseloads, clear hiring protocols and good supervision. I think those program elements are key to seeing this kind of financial return. So #hclrds, resist the impulse to skimp!
Read 7 tweets
12 Dec 19
I’m reading the most important book you’ve never heard of.

Why am I reading this? All my roads lead to self-deception:

It’s why patients don’t change their behavior, #hcldr ignore science, politicians perpetuate inequity, etc.

Follow along, I’ll tweet notes as I read.
1/ Most of us (esp in healthcare) are stuck in rationalism (Plato): failure to behave is due to inadequate understanding.

Ignores hedonism and it’s implications: we want to feel good! Also we ignore something not mentioned in this book, behavioral economics.
Self protection is aroused by providing feedback about failure
Read 7 tweets
17 May 19
1/ Ok by special request from my dear mentee @dn_charles: here’s my version of the HPI for new #primarycare patients.

Key points: welcome them and get to know them as people.

Don’t worry, it takes no longer than usual! I still see 8-10 pts in a morning.
2/ Here are some prompts I use to get a quick overview of my patients’ life stories, including trauma history.

I also try to reflect and synthesize what they’ve told me so that we are on the same page about their strengths/hopes/fears/root causes of any troubles.
3/Then, the medical part of my HPI. Here’s where I ask about what is typically called the social history: sex, drugs, alcohol and cigarettes. This is too narrow to call a social history. I call it ‘habits.’

I skip the Fhx and do it on the second visit.
Read 5 tweets
2 Nov 18
1/ To #reporters, #policymakers and #execs out there, here is something you absolutely need to know about interventions that claim to reduce hospitalizations or healthcare costs:

Many of these studies are misleading.
2/ To understand why, we need to- deep breath- do a little science. I’m going to quickly walk through a concept called regression to the mean.

3/ Most things in life - blood sugars, hospitalization rates, fantasy football stats- do not remain constant. Instead they go up and down Image
Read 8 tweets

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