Tag Archives: emphysema

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Frail

I wrote this poem about my father at least a year before he died. He was on oxygen, on steroids, terrible emphysema from 55 years of unfiltered Camel cigarettes. He would not accept much help and became more and more of a hermit. He did continue with the Rainshadow Chorale and because of it he quit smoking three years before he died.

Frail

We are going sailing
My partner says to me
“Invite him if you want.”

Then I am busy for a while

I think of calling, then forget

He was not at chorus on Monday

At last I say,
“I haven’t called. We’ll just sail.
Just us today.”

I haven’t called
because he was not at chorus on Monday

He is frail
55 years of camels
two packs a day
as if each cigarette
destroyed one alveolus
in his lungs
one tiny air/blood interface
built to exchange oxygen
and carbon dioxide
the loss is cumulative


He is frail
he is proud that the choral director
says, “I need you.”
He can’t sustain
but his entrances and time
are the best
among the basses.
They need him.

Chorus
is our winter link
two introverts
we hug at the start of chorus
sing for two hours
and talk for a few minutes at the end

Occasionally we go for a beer
I invite him for dinner
but he comes less and less
he often does not feel well at night

He looks smaller at chorus
this season
this is normal in emphysema
the body sheds weight
too much tissue to oxygenate
too hard for the lungs
and the heart, working overtime
to make up the difference
he is blessed with low blood pressure
genetic, from his father,
tough English stock,
otherwise I think he’d be dead

I didn’t call
before we went sailing
because I am afraid

I’ve driven out before
when he has not answered the phone
for a day or two
wondering if I would find him dead

I didn’t call
before we went sailing
because he was not at chorus on Monday
because if he didn’t answer today
I would not go

______________________

For the Ragtag Daily Prompt: frail.

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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.

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Fraud in medicine: oxygen

My father died of emphysema in June of 2013. I found him dead on the floor of his house. I expected this because he was nearly a hermit, but it was still hard.

He was on oxygen. It was prescribed to be continuous.

I started cleaning up the house and trying to find his will. I lined up oxygen tanks and called the oxygen company. There were ten tanks.

The oxygen company picked up the tanks.

I found eight more. I was very busy with a large house, a complicated estate, two years of unpaid taxes, he paid bills on line but had not updated the payments when costs increased……

I hired a local estate sale group. They did an excellent job. The house was sold. I picked up the last few things, including the oxygen tanks.

I called the oxygen company. “Why did my father have 18 oxygen tanks?”

They said, “We delivered them as needed.”

I said, “He didn’t need 18 tanks.”

They said, “They are paid for.”

Oh! Medicare paid for the oxygen. No, not medicare. You and he and I paid for it, because we pay taxes to medicare and medicare pays the oxygen company. Well, 80% and then my father paid the other 20% unless he had a medicare secondary insurance, which he also pays for…. Oh, are you under 65 and thought medicare paid for everything once you got it? Sorry to disillusion you…..My father  was supposed to be on oxygen continuously. So the company kept delivering it at the intervals covered by medicare, even though he was not using it all. He sometimes didn’t wear his oxygen and he also had bought his own oxygen concentrator, smaller and easier to move than the one from the oxygen company.

I was furious. “So you kept delivering oxygen even though it was not all being used. And kept charging.”

They said, “We delivered it when it was needed.”

Liars. They delivered more than was needed and I gave some back to them, after medicare had already paid for it.

I still have 8 tanks of oxygen. After all, it’s paid for by medicare, by my taxes and by your taxes. The oxygen is paid for. The tanks belong to the company. I’ll return them when they are empty….. I don’t think the corporation should be able to charge medicare for it twice…..

I should check to see if the company reimbursed medicare and my father for the oxygen when it was returned. If not, I can check into filing a fraud complaint with medicare against the company. But even if they reimbursed medicare and my father’s estate, I am still angry that they kept delivering it when they knew darn well that he had tanks already. Or maybe they don’t even keep track of how many tanks they’ve given out. It’s all about money.

Fight back against corporate greed and fraud. Ask questions. Do not give the oxygen back if it’s been paid for….. give it to someone who needs it instead.