Thread by @WesElyMD

1/🧵The Nightmare of #COVID19 & #LongCOVID
 
Im a doctor who is now spending more & more time daily caring for #LongHaulers (pts w LongCOVID). I just got a TINY dose of what it must feel like to be unheard and unseen…AND I want to apologize to you.
 
#MedTwitter #NurseTwitter

2/ I just keep hearing you say, “Doc, why doesn’t anyone believe me? My friends look at me and think I’m fine, even as I feel further and further adrift. I’m not myself and I can’t tell if I ever will be again. #COVID has ruined my life.”

3/ Yesterday as my plan landed, my phone vibrated. It was the wife of a former ICU #COVID pt, now trached & living on a vent in an LTAC, asking how she can get his new docs to understand & carefully manage her husband’s ongoing #LongCOVID & Post-Intensive Care Syndrome (#PICS).

4/ As an aside, I was returning from seeing my mom, who during COVID, without getting COVID, descended into Moderate Dementia from isolation & loneliness. This really ought to be a new category of #LongCOVID given the number of aging people w new dementia post-#pandemic.

5/ I’m not sure if I’m at all correct, but I counseled this wife to first call a meeting with the attending MD. Such a meeting will be tricky. Certain steps are regrettable but important: Don’t appear too emotional or “complainy.” Isn’t it terrible how Docs turn their brains off?

6/ I advised her (because she asked) 1st to thank the doc for listening AND then ask to share her top 3 ways things could get better: Don’t allow husband to miss an entire day of antibiotics, be found in feces, or stay in bed more than 12 hours. Ugh.

7/ My TINY dose: Last night I received a general email from leaders to adjust my website “areas of expertise.” They gave me a pre-populated list of specializations for lung doctors. Tradition would include diseases confined to the chest, which is antiquated.

8/ This paradigm just doesn’t work for YOU. YOU who get critical illnesses and #COVID generally, don’t get a disease that stays between your clavicles and diaphragm (chest only). Your disease spreads to your nerves, head, muscles and mind 🧠!

9/ I wrote to our Leadership and asked, “Where on this list is #LongCOVID? #PICS? #SEPSIS? #PTSD? #Delirium? #Dementia? My patients need me to see ALL OF THEM! Not just their lungs. Then I went to sleep…or tried to. It’s nighttime and I am up typing. Why?

10/ I just had the same nightmare - TWICE. I was trying to climb up a slick hill. I kept sliding down. There was nothing to grab hold of. Frantically, I’d slide back to the bottom and have to start over. I couldn’t get any footing and never made it to the top to be heard.

11/ Are the unheard reliving Munich’s Scream…sliding into oblivion? Like the wife of my former patient? Or another #COVID pt who called yesterday, never even hospitalized yet now suffering myriad problems? I’m so sorry for the many times I have made anyone feel like this.

12/ This #LongCOVID epidemic w/in the pandemic of feeling unheard amidst #suffering must find an escape hatch (a la Saul Bellow in Ravelstein). Medicine & society must respond. Please tell us more and hold us accountable. You need footing to tell your story, and we want to help!

13/fin
P.S. Our Leadership already wrote me back. They are adding all those terms to our website list to reflect modern critical care – seeing the WHOLE person and your diseases not formerly on our radar. I detect some light, and I #hope my patients will soon, too!
 
#Change