Pulmonary Manifestations of Long Covid

Today’s Zoom lecture was about pulmonary manifestations of Long Covid, and this is from the Schmidt Initiative for Long Covid Global ECHO Webinar Series, out of the U of New Mexico.

First of all, the talk is brilliant. The speaker is Lekshmi Santhosh, MD, MAEd, Asso Prof Med, Pulm Critical Care Med, UCSF, Intensive Care.

Two things to start with: she stressed the six minute walk test for patients, to distinguish oxygen desaturation (dropping) from the people who have terrible tachycardia (fast heart rate) only. The oxygen drop indicates that the person needs lung studies and may need oxygen, while tachycardia alone means either a heart problem, chronic fatigue/ME pattern or dysautonomia, where the heart goes fast when the person sits or stands up. Her point was that it’s a simple test and that Long Covid presents in multiple different patterns.

The second point is that there are least five main mechanisms that Long Covid can mess us up and people can have one or many. There is a review article in Nature last month (I need a copy!) and it talks about these five: immune system problems, gut microbiome problems, autoimmune responses, blood clotting/microclotting/endothelial problems and dysfunctional neurological signalling. SO: this is a MESS. She says that patient care needs to be individualized depending on which mechanism(s) are predominant and it can be more than one. This Covid-19 is a hella bad virus.

So: “The underlying biological mechanism may not be the same in each patient.” That is the understatement of the year.

She reiterates that the current diagnostic criteria, subject to change, is symptoms that last longer than 12 weeks after Covid-19 and two months past that. She states that the symptoms can wax and wane and that we need to listen to and believe patients.

In JAMA this month, there is an article that uses big data to find which symptoms are more associated with Long Covid, and lists 13 symptoms. Smell/taste tops the list but fatigue is there too. However, this is not a list for diagnosis, it’s a study list.

She also is careful to say that the treatment for the pulmonary manifestations is not the same as the people with the pattern that resembles chronic fatigue syndrome/ME. The pulmonary people can build exercise tolerance, but the CFS/ME folks need a different regimen, with pacing and energy conservation. That sounds like a subtle difference. I had both though my CFS/ME is weird. It does not put me in bed, I just can get really tired and need to sleep. It’s a bit invisible. People see me dance and would not guess that I have CFS/ME. All relative to previous function and energy, right?

For lung manifestations, she lists a pyramid, with the more rare things at the bottom. As follows:

  1. persistent dyspnea (shortness of breath)
  2. post viral reactive airways disease (asthma that can resolve from irritated pissed off lung tissue)
  3. deconditioning. She says that the isolation and quarantine with some people in very small rooms, leads to terrible deconditioning in some folks. They can build up, especially with supervised exercise with pulmonary rehabilitation and/or physical therapy. It is scary to exercise when you are short of breath and the supervision really helps, with limits on how much you should push, or encouragement to push.
  4. organizing pneumonia. This is rare and responds to steroids. Otherwise steroids are not good for the muscles in Long Covid, with the exception of inhaled steroids for the asthmatics and post viral reactive airways.
  5. post ARDS fibrosis: fibrosis is fibrous scarring that can form in the lungs. Anyone who has any terrible pneumonia and is in the ICU and intubated and on a ventilator can get this. Not everyone gets it, thankfully. ARDS is Acute Respiratory Distress Syndrome. Luckily the fibrosis is rare and it turns out that in some people it improves with time, like years. She does not recommend the pulmonary fibrosis medicines right now. There are many causes of pulmonary fibrosis besides infection.
  6. PVD: peripheral vascular disease. Covid-19 increases clotting, so we have to look for both clots and for disease in arteries, which could be lungs, brain, heart, anywhere in the body.

She says DON’T assume that chest pain is from the lungs and don’t miss cardiovascular. That is, rule out a heart attack and pulmonary embolus first.

Other lung problems have to be kept in mind that are not caused by Covid-19. This list: Reflux associated cough, pleuritic pain, neuromuscular disease, vocal cord dysfunction, tracheal stenosis, tracheomalacia. Watch for those. She says that it is very very important to look at old chest x-rays and CT scans, because those can show previous signs of emphysema/COPD/asthma/fibrosis.

Testing: She puts the 6 minute walk test first. AFTER the thorough history and making sure there are no red flags for pulmonary embolism and heart attack. Those have to ruled out if there is any suspicion. Next: pulmonary function testing. If the DLCO is low, consider a chest CT. Consider TTE -TransThoracic Echocardiogram, to look at the heart. Labs: CBC (blood count), ESR, CRP, thyroid, +/-CPK.

She has diagnosed people who are sent to her with NOT Long Covid: they have metastatic lung cancer, metastatic prostate cancer, new pregnancy, hypersensitivity pneumonitis and many other things. She says, “Don’t assume it is Long Covid. Sometimes it isn’t.”

Now, this is all a formidable list of problems and this is JUST the lungs. Long Covid can affect every system in the body and every patient is different.

She also says that she has done more disability and accommodation paperwork in the last three years than in her entire career before that. That the US disability system is a horrid mess and that she has to talk to employers and insurers OFTEN to say that the person will get better faster and have less long term problems if she treats now and they have rest and return to work may need to be very gradual.

She approaches new patients by asking which symptoms are worst. She thinks about severity of the infection, vaccination status, previous/present other medical problems and habits that can contribute or worsen things (smoking, vaping, exposures). Her clinic is for Long Covid pulmonary, but now they have opened up a neurological branch. They use multiple other specialists as well.

Last quotation: “Until we elucidate the biology and have clinical trials, treatments are largely symptomatic.” So the basic science studies working on immune system, the gut microbiome, the clotting problems, are huge in figuring out what to do in clinical trials. This is a tremendously complex illness and three years into Covid-19, we are still trying to figure out the multiple mechanisms that cause Long Covid.

This was a very hopeful lecture from my standpoint, admitting that this is complex but that we are also working to sort out the mechanisms and work on treatments. She works hard at getting patient input and feedback as well.

Two links: A free PDF from Johns Hopkins on Bouncing Back from Covid. https://www.hopkinsmedicine.org/physical_medicine_rehabilitation/coronavirus-rehabilitation/_files/impact-of-covid-patient-recovery.pdf

The American Physical Therapy Association has articles as well: https://www.apta.org/patient-care/public-health-population-care/long-covid

Also here are webinar links:

SILC Global ECHO Webinar Series Resource Links June 28, 2023

Now, how will I use the Ragtag Daily Prompt riposte for this? I think I will just say again how important it is to listen to and believe our patients!

The photograph is from Marrowstone Island, East Beach. The shape in the driftwood is sort of lung shaped.

Lungs, again

I saw the pulmonologist from Swedish Hospital last week and am still thinking about the visit.

My lung function on the pulmonary function tests did not change much from December. He gives me an inhaler, with a steroid and a long acting bronchodilator, two puffs twice a day. I use it for one day in December and promptly get Covid-19 mildly. I then ignored the inhaler until I talk to him in March. He says, “Use it for two months and we will see if your lungs improve.” I try it in March and get a cold, not Covid, within a day. I try it again in April and get a cold within two days. I then ignore the inhaler.

But at the end of March I start feeling a lot better and my fast twitch muscles start working again. I would get very tired and stiff when I use them. They are “back” but are very weak. I wanted to know if my lung testing improved too, but it didn’t. So what is going on here? I feel better but the lung studies are not better.

The pulmonologist says, “Well, the infections are probably coincidence.” Yeah, um, well, three for three. “But, if it’s not asthma, it could be bronchiectasis.” He asks when I did the methacholine test, negative, gold standard for asthma. I did it in 2014. Negative along with allergy testing.

I don’t know much about bronchiectasis. Mostly that it’s not asthma and not chronic obstructive pulmonary disease. It may be the garbage can that holds obstructive disorders that don’t fit either of those categories.

“Bronchiectasis means what?” I say. He says, “Usually there is a lot of coughing and mucous.” Nope. Well, I cough a lot with pneumonia and with colds if I don’t rest, but rarely cough anything up. “The test is a chest CT but we can’t do anything about it if you have it, so I don’t know if you want to do a CT.”

“If there’s nothing to do, then I don’t want one.” Because repeated CT scans increase cancer risk, way more so then an x-ray. I ask about work. “I still get really fatigued, and my muscles are recovering. If I am stronger at the end of the summer, I would think about work, but how would I protect my lungs?”

“Mask.” he says. “An N95 all the time would maybe help. We don’t really know.”

Ugh. We agree that I will see him in October. If my fatigue level stays where it is now, returning to work even half days is going to be too high risk, I think. I am liable to get pneumonia AGAIN and this time I might get stuck on oxygen. Or die, which I’d rather not right now.

I am reading about bronchiectasis. The Mayo Clinic doesn’t have an entry for it, though it has clinical trials and a special clinic. That would support it being a garbage can diagnosis. I am reading on Wikipedia, here, not my usual medical resource. Brochiectasis can particularly be caused by tuberculosis, mycobacterial illness. They distinguish cystic fibrosis bronchiectasis from non-cystic fibrosis bronchiectasis and other infections can cause it. Influenza, streptococcus, um, yeah, the infections I’ve had. I do not have cystic fibrosis or the alpha-1-antitrypsis disorder. And there is another disorder listed, a genetic one where the cilia don’t work right. Primary ciliary diskinesia. I don’t have that either, but my working diagnosis is PANS, with antibodies that screw up my cilia and fast twitch muscles. And that would put my lungs at risk for pneumonia.

So, says a friend, what do you need to take?

Nothing, I say. It means I have to keep stress down, be in a parasympathetic state instead of fight or flight sympathetic state, and stay the heck away from sick people. Oh, and mask on airplanes and probably avoid huge crowd things. Jazz Fest, big music festivals, riots, wars, etc. Exercise, eat right, don’t drink too much alcohol, don’t smoke anything, don’t do stupid things. Try not to get tuberculosis.

And still, I am doing well. The treatment for really bad bronchiectasis is lung transplant. I am still quite mild after four pneumonias and the kid illnesses and mononucleosis and colds and so forth. I do not cough all the time and am off oxygen. It’s looking less likely that I could return to work in person, though I don’t know about internet. It really depends on my energy level, what that does. Darn it. Uncertainty, isn’t it hella annoying? Oh, well, I am pretty used to it by now.

And that’s the lung news.

I can always hide in my tree house. But the food and water supply there is not so good.

Unvitiated

Wondering why vitiate
ads from drinking carbonate
seems a loaded silly freight
puzzle future centuries late
time foils stupid race hate
future can’t tell the state
from all attempts to carbon date

_________________________

For the Ragtag Daily Prompt: vitiate.

I look for songs with the word vitiate: pretty much heavy metal. Let’s go with this song instead:

We sang the lullaby in our last concert. It is gorgeous. Unvitiated.

I took the photograph this month at Kai Tai Lagoon.

Sherbet skies

We sail on a jaunt into sherbet skies.
The water is gold, the wind is light.
The sky changes color and charms our eyes.
The light is gold sliding into the night.
The boat glides through the water with gentle ease.
Light hand on the tiller, our wake lights up.
We pass peaches and cherries and crackers and brie,
pour tea into each other’s cups.
It’s cooling off so we sit very close.
Phosphorescent creatures trail behind.
Warming each other as we steer the boat.
Darkness falls and we don’t mind.
The sherbet skies call us out to roam
But we are ready to come about towards home.

____________________________

For the Ragtag Daily Prompt: jaunt.

Hoping for more peace and tolerance on Juneteenth.

Air purist

This is a sunset, not smoke. Right now the east coast of the US has spectacularly bad air quality from forest fire smoke. My son is going to work out indoors today, since he is in the DC metro area.

When I moved here, I was delighted by the air quality. That was 23 years ago. In the last five years, we have had smoke blowing in from forest fires to the east or south or north four of the five. Last year I built a home air purifier because the smoke was bothering my lungs even inside the house. It helped very much. I stayed inside for 8 days. The cats did not want to go out either.

“Some say the world will end in fire, some say in ice.” Ironic if it is smoke that takes us out.

For the Ragtag Daily Prompt: purist.

Littoral zone

I walked on Marrowstone Island yesterday, south from East Beach. There was a super low tide, to -3.38 at 1:07 pm. When the tide came in, it was at +8.76, so that is a huge difference.

There were almost no people, but the group enjoying the low tide were the great blue herons! I counted 14. At one point they all alerted, and a bald eagle came down and perched on the rock that a heron had been on. There must be some very delicious food for the herons with the low tide. The eagle seemed to be considering heron to be a delicacy.

Here is the eagle (and the great blue herons moved!)

I came home with one very lovely agate.

For the Ragtag Daily Prompt: littoral.