WesElyMD Profile picture
Jan 7, 2022 13 tweets 7 min read Read on X
1/🧵 You’re dying in a hospital bed, and we grant you “THREE WISHES.” What would they be?

My dying patient is stunningly beautiful INSIDE & out. I asked what 3 wishes she had?

This video of the Birthday 🎂 party we had for her son is her BONUS Wish!

Read on for her share ❤️
Her Wish #1: Pizza, large w extra cheese. It’s been 3 years since she tasted SALT.

(again, all pics shown w their perm)
2/ Wish #2:

Expanded FAMILY visitation, which mean she enjoyed the ‘Za with all her children!

She said, “Dr. Wes, Dr. Koenig & @mad_ruk this is Priceless to me 🎁.”

Families are not a luxury. They are integral to healing (& healing can occur w/out cure).
3/ Wish #3:

To stay in the hospital 3 extra days before she takes an ambulance home likely to die that day (once we remove some life support that is no longer offering any realistic hope for this illness).

Why the extra days?

She is shown here only a few months ago…
4/ She chose this 3rd wish so that she doesn’t die on her son’s birthday, preserving his birthday as a thing of #hope in his life rather than something shrouded in her death. In suffering, she continues to think of others first.

I learn from her…👇
5/ Her son cried when she told us her 3rd wish, and we all spoke together about focusing on peace & love over these last days.

All of us wept.

Yet we all smiled as we joined hands.
6/ Smiles because we saw her radiance, which transcended anything I ever deserve to witness.
 
The beauty I see in my patients’ eyes keeps me coming back to the bedside…no matter the difficulty of their circumstances.

Such a privilege to enter into relationship.
7/ #Poem
 
Little soul,
the book of your hours
is closing
 
over its golds,
its reds, your gazing dog,
your rivers, ladders
rib cage.
 
A life
turns into its patterns and perfumes
then…
 
#JaneHirshfield
8/ Grant “3 Wishes” to your pts & loved ones. Read about this in #EveryDeepDrawnBreath👇
 
Dr. Deborah Cook started this: bit.ly/3Jlg0HN.
 
People don’t ask for Ferraris.

They ask for meaningful, small acts of kindness. You can deliver…
 
#PalliativeCare #Love
9/❤️🐝

BONUS WISH #4: on rounds this morning, our team asked her, “why don’t we help you throw a birthday party for your son tomorrow with a huge cake & everyone who wants to be here celebrating?”

And so it goes…
10/fin 🐝

According to recognized aerotechnical tests, the bumblebee cannot fly because of its shape & weight in relation to the total wing area. But the bumblebee doesn’t know this, so she goes ahead & flies anyway.

My patient flew anyway…and taught us to fly, too.
And yes I realize that some of these “all vaxxed” family members pulled their masks down for a moment. There are just times in medicine when togetherness with a dying person and the humanity of it all rise above in terms of importance…I don’t know how to explain…
And lastly - this patient is dying of heart and lung disease, not Covid. She is on medications that are keeping her alive but which do not offer her long-term cure and they will be stopped when she gets home with hospice as they are becoming increasingly futile. All #love.

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More from @WesElyMD

Aug 1
1/🧵Long-COVID Defined

🔸Let’s Unpack @NEJM
🔸Hear from patients
🔸We call LC a disease state
🔸It’s a clinical definition
🔸Adding Inclusion/Exclusion Criteria to our @theNASEM definition fosters great research definitions
🔸 I admit my early mistake…

bit.ly/3Ys30u0
Image
2/ NASEM 2024 Long Covid Definition:

“Long Covid is an IACC occurring after SARS-CoV-2 infection & present >=3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.”

Read caveats in text box… Image
3/ Patients describing Long COVID – read text box

“My long Covid life remains terrifying. Last weekend I washed my car, dried it, put it back in the garage. Then I got violently sick and could hardly get up to get food. I was unable to read or even call my mom. I’m a shell of myself. But my physical issues aren’t half as bad as my brain problems. It’s hard to describe. You can say brain fog, but that doesn’t come close to doing it justice.”
“At work my brain is just begging for rest. I struggle with finding words and completing tasks in a timely manner. … I’ll be in a meeting and know exactly what I want to say before I say it. …I’ll get to a word, and I just cannot think of the word. I’ll just be like, ‘Give me a moment,’ and I’ll go through my brain cycling through words. This week the word was “consistent.” I couldn’t think of the word consistent. I kept thinking it was coincident or concentric or constant. I used to build prototypes multiple days a week, and now if I do anything in the lab, I’m pretty much wiped out for a week. …I mean, I’ve had to dig real deep. How much longer will I feel like this? I’m scared.”Image
Read 14 tweets
Oct 17, 2023
1/🧵 Long COVID Disease State
 
COVID infects us & Interferon causes 3 dastardly plots:
📌 We absorb ⬇️ tryptophan & convert ⬇️ Serotonin
📌 Platelet pathology ⬇️ stores of Serotonin
📌 Vagal nerve signals peripherally ⬆️ impairs brain function & memory

bit.ly/3M5F9ZV
Image
2/ Tryptophan is an essential amino acid - we don’t make it.

So if we’re “programmed” to absorb ⬇️ from our diet, we sleep poorly, think worse, and all sorts of other bodily functions go awry.

Will SSRI & SNRI meds help, or anti-virals, or immuno-modulators?

Trials will tell. Image
3/fin
This study by @maayanLevy_lab is a marvel of dozens of avenues of science that all point to a greater understanding of the realities of #LongCOVID as a chronic disease state.

Through work like this, we legitimize not only LC, but also #MECFS #LongLyme etc & take one step closer to finding medical solutions for past & future post-infectious states + syndromes like #PICS

TY @cooney_liz for this @statnews piece!

Read 4 tweets
Oct 10, 2023
1/🧵Catatonia - shocking & hopeful insights into a mysterious neurological disorder 💥

Did Oliver Sacks’s Catatonic “Awakening” Patients have a treatable Autoimmune Disease?
 
Here I unpack story & science from a stunningly well-done @WashingtonPost article Image
2/ Amazing Discoveries of Autoimmune Disease causing Decades of Catatonia, Schizophrenia
 
Autoantibodies and treatment with immunosuppressive medications are waking some patients up with crazy cool results. Here’s the article and my highlighted excerpts:
 
3/ “The first conclusive evidence was in her bloodwork: It showed that her immune system was producing copious amounts and types of antibodies that were attacking her body. Brain scans showed evidence that these antibodies were damaging her brain’s temporal lobes, brain areas that are implicated in schizophrenia and psychosis.”
Read 25 tweets
Sep 27, 2023
1/🧵 Post-Infectious Syndromes

…a Doctor’s admission
 
📌 I didn’t think #MECFS was real till #LongCOVID opened my eyes
📌 It’s “mysterious” & we weren’t taught it in med school
📌 Yet 1,000s are suffering a disease traditional medicine doesn’t understand
 📌 Let’s find answers Image
2/ Long COVID is estimated at 6% of US Population… @CDCgov
 
“Prevalence of #longCOVID among U.S. adults ≥18 ⬇️ from 7.5% during June 2022 to 6.0% during June 2023.”

More than 1 in 4 w LC have activity limitations, ie, it’s a LIFE altering disability.
 
bit.ly/3sZH8s2
3/ What is #LongCOVID?

Well, it’s not new…update👇
 
Acute Covid triggers #MECFS as do other infectious agents.
 
“Triggers” means temporal association not “cause” in a mechanistic sense.”

Think also #LongLyme #Fibromyalgia & more

bit.ly/3RyMJ34
Read 8 tweets
Sep 6, 2023
1/🧵 Long COVID - new @TheLancet data

📌A picture is emerging
📌It’s not pretty
📌Most pts w months-long symptoms aren’t recovered @ 2-yrs
📌The cluster including neurocognitive & cardiovasc symptoms is ominous
📌These data fuel trial design

Thoughts…

bit.ly/3sHrwt9

Image
Image
2/ This Lancet investigation of just over 500 patients is not particularly large but is well done. The methodology used LC patients from Catalonia Spain from 3/2020 to 2/2022.

They included people who were unable to obtain Covid test but who had an acute onset of symptoms extremely consistent with the syndrome and who developed the same long-term definition of long Covid.

Some may argue about this point but the longCovid community has taught me how important these patients are to include in such research.
Image
3/ Looking at this figure you can see the heat map emphasizing symptoms in clusters B & C that the authors are most confident indicate persistence.

💥 fatigue, headache, neurocognitive, dyspnea, arthralgia, chest pain and tachycardia 💥 Image
Read 8 tweets
Aug 24, 2023
1/🧵This weeks 2 important studies on Long COVID
 
📌Include ~340k COVID patients vs ~7M controls out to 2 yrs
 📌Organ dysfunction persists in 33%
 📌Levels of disability from #LongCOVID exceed those of cancer & heart disease‼️
 
Links at end of this thread
Image
Image
2/ Remember that these data complement the 8 or so other studies showing similar findings, and EXTEND the information using VERY large control groups w censoring if those controls got COVID.
3/ CAVEATS:
First, these are US Military Veterans

✏️Thus, older and more white than the average #LongCOVID person
✏️They also do NOT help us with Delta and Omicron variant COVID
✏️These findings are robust and statistically sound and published by very astute and qualified investigators
✏️But they must be extended scientifically in cohorts that include a high number of younger women, people of color and lower SEC as well as newer COVID variants.
Read 6 tweets

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