Category Archives: you know you are hypoxic when

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Pneumonia makes me slenderize

Pneumonia makes me slenderize
I feel like I’ve been blenderized
Steals my breath and appetite
Work to breathe both day and night
My heart goes fast, trials one to four
I’d rather not have any more
Ten pounds down, gone like smoke
Carbohydrates make me choke
The legacy of my fourth round
I can’t eat gluten, ounce nor pound
And yet I still come out ahead
Since I am alive and still not dead

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Four pneumonias in 24 years. I have an antibody response, which peaks about six weeks after the infection. Colds don’t trigger it. This photograph is two months in to my 2021 round. I drop ten pounds in the first week and eating is always difficult. I do not recommend this method of weight loss.

For the Ragtag Daily Prompt: slenderize.

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Work dream

Last night I dream that I am back at work.

I get called to do an emergency surgery. I am a Family Practice Physician. I assisted in surgery, C-sections, and did minor repairs of lacerations (yeah, we don’t use small words like cut) and biopsy of skin lesions (lumps, right?). In the dream I do the surgery, but it worries me. I am not a surgeon. I talk to Dr. L. afterwards. He is a surgeon and has worked here for longer than me, and I’ve been here for 23 years. We get along well.

“I shouldn’t be in the surgical call schedule.” I say.

“Don’t you have the certificate for appendectomies?” he says. Now, that isn’t really a thing. My brain made it up.

“No.” I say.

“Oh.” he says. “I thought you did. Great job on that surgery. We need you.”

“But I am not a surgeon, I would need more training.” I say.

“Oh, we’ll figure it out.” he says. I am worried that I’ll be called for an appendectomy. Or something way worse.

I wake up with a very stiff neck. It has relaxed now, but clearly some part of me is not totally on board with work. I need to be careful what I am getting in to. I am not sure, what if I get pneumonia number five? We are short on physicians though. I can argue with myself very easily. Ok, ok, says the part of me that really wants to return to work: we won’t do appendectomies.

The head of our Legion says that some of his people wish I were working again. I really got along well with my veterans and liked them almost always. They could be really gruff and growly and I would growl back. Then they’d be cheerful. Another person at an outside dance said he missed visits with me and appreciated the time I took. Last night a third person asks how they will know if I start a Long Covid clinic. They have two friends who may have it.

I don’t know. I am mostly absent from medicine right now, but still doing my continuing medical education. I have about 30 hours on Long Covid now, which means I have a lot of strategies to improve things but I can’t cure it. May the research will get there eventually. I am maintaining all of the certifications: medical license, board certification, DEA, membership in the American Academy of Family Medicine. But I also listen to dreams.

For the RDP: absent.

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Storm tossed

The word tethered makes me think of the year and a half on oxygen. I had a standing concentrator for in the house. This means that I have oxygen tubing following me on three floors. I had to have connectors and I got caught on everything. I tripped over it. I wondered why it wasn’t helping and discovered the tubing was unplugged. The kittens chewed holes in it.

The sea plants are tethered too, to rocks, to grow up from the deep. I think this looks like a distressed stranded mermaid. Poor thing, her rock, her foundation has been thrown on shore by a storm. She can’t get home. I took this in May 2021, when I was still on continuous oxygen.

For the Ragtag Daily Prompt: tethered.

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Work again

I have been wondering whether to try to work again. It’s risky.

I asked the pulmonologist from Swedish Hospital if there was any way to keep from getting pneumonia number five. “We don’t know.” Is it safe for me to return to work? “We don’t know.” I like the plural in the answer, is he speaking for pulmonologists or Swedish or what? Anyhow, the risk is pneumonia number five and death or ending up permanently on oxygen or needing a lung transplant or something stupid like that.

It’s not raining yet and I promised not to even attempt to return to work until it rains.

I saw my cardiologist yesterday. He thinks I should return to work. Early on he said that I am smart, “like one of those old fashioned internists who read everything.” I laughed, because yes, I am a science geek. At the next visit he said, “The family doctors aren’t always as thorough as they could be.” I replied, “I don’t know, after all, I’m a Family Practice Doctor.” “Oh.” he said, “I thought you were an internist.” Which made me laugh because it’s a sort of back handed compliment. Cardiologists do a three year internal medicine training and then more years of sub specialty to become a cardiologist. Most specialists seem to scorn Family Practice a bit, though not all. And I have definitely had specialists ask me for help. A perinatologist: “How do I help people stop smoking?” I laughed at that, too, and replied, “Do you want the five minute , the ten minute, the thirty minute or the one hour lecture?” A med-peds doc asks me to put a cast on a child’s arm because even though she is board certified in internal medicine and pediatrics, she has almost no orthopedic training. I was at that clinic to see obstetric patients that day, but was happy to do the cast too. I love the broad training and the infinite variety of rural Family Practice. It is SO INTERESTING and OFTEN FUN THOUGH NOT ALWAYS. Sometimes it’s sad.

Here is an article about a physician doing what I want to do: https://nymag.com/intelligencer/article/long-covid-treatment-lisa-sanders.html. She thrives on complexity, she thrives on diagnostic puzzles and she writes the column that the television series “House” was based on. When I watched House, what I noticed was the nearly all of the patients on the show were either leaving something out or lying. In reality, I think it’s just that sometimes we need a lot of time to pull together the complex picture and clues. I always pay attention to the pieces of the puzzle that do not fit and sometimes those are the key to finding a diagnosis that is unexpected. Dr. Sanders spends an hour with a new patient. That is what I did in my clinic for the last decade, because that hour gave me so much information and it allows people to feel heard. A ten or fifteen minute visit doesn’t let people speak. It’s slam bam here is your prescription ma’am. What I see in the multitude of notes from all the doctors I’ve seen since 2014 is that they leave most of the conversation out of the note. Things I think are important. I think most of the clinic notes about me are crap and the physician is not listening and doesn’t know what to do. I include the stuff that doesn’t fit and doesn’t seem to make sense in the notes I write. Patient appreciated, when I gave them their note at the end of the visit. “You got all that?” Oh, yes, I tried.

One of the Long Covid symptoms that Dr. Sanders mentions is people “feeling like they are trembling inside.” I’ve seen that before Covid-19. That was a symptom that I did not pin down in a particular patient, but now there is more than one person complaining of the same thing. Really, why don’t physicians include those complaints? It’s egotism to cut out anything you don’t understand and most patients want help so are motivated not to lie. Ok, they might admit that they’ve been out of their blood pressure medicine for two weeks and that’s why their blood pressure is too high, or they’ve been drinking mochas and that’s why their blood sugar is way too high, but they are really in to get help. I think it is a terrible disservice not to document what they say, even if it’s not understood and the physician thinks it’s unrelated to their specialty and they don’t know what to do.

So: I want to do a Long Covid Clinic, with an hour for the first visit, and longer than usual follow ups. Part time because of my lungs and the fatigue. We shall see, right? I am going to look for grants to help set this up.

Think of how much work went in to this statue and this church. The Basilica di San Marco took at least 400 years to build and decorate!

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Don’t laugh

Judging Kinetic Sculptures, searching for the most mediocre, is serious work.

For the Ragtag Daily Prompt: boffola.

https://ragtagcommunity.wordpress.com/2023/08/30/rdp-wednesday-boffola/

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The DSM Stew

Pyschosis
Neurosis
Babeiosis
Psittacosis

Medicine shifts
out the old, in the new
neurosis is gone
from the DSM stew

https://www.nimh.nih.gov/health/publications/understanding-psychosis

https://www.cdc.gov/parasites/babesiosis/

https://www.cdc.gov/pneumonia/atypical/psittacosis/index.html

The DSM V is the Diagnostic and Statistical Manual of Mental Disorders, volume V. The DSM III was published in 1980, DSM-IV in 1994 and the DSM-V in 2013. Some disorders are dropped or combined with others or the criteria are changed. In the DSM-V, tolerance and overuse (formerly addiction) were combined from two disorders into one spectrum.

Medicine is always changing and updating. Before h. pylori was recognized as a cause of stomach ulcers, there was much more ulcer surgery and ulcer bleeding deaths.

I don’t know what will come out of Covid-19, but the research on the immune system and Long Covid (now called PASC) is formidable.

The DSM-V and the ICD-10 are humans categorizing things, defining diseases. They will continue to change.

For a history of the DSM, read here: https://www.psychiatry.org/psychiatrists/practice/dsm/about-dsm/history-of-the-dsm.

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For the Ragtag Daily Prompt: neuroses.

The photograph is taken in September 2021, with my camera. Hypoxia and a fast heart rate makes me really anxious, but neither is considered a psychiatric disorder.

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Long Covid imaging

In the last Long Covid talk that I attended and wrote about (here: Pulmonary Manifestations of Long Covid), the pulmonologist and intensivist says that one problem with Long Covid is that we do not have imaging that can “see” it.

That is, the chest x-ray looks normal, the echocardiogram may look normal (heart ultrasound), the chest CT scan may look normal, a brain CT or MRI may look normal, but the patient may still be tachycardic, feel exhausted, feel brain fog and have multiple other symptoms.

That pulmonologist listed five of the top mechanisms that are prolonged in the immune system. Most of the scientists and physicians are framing this as “immune system dysfunction”. I am not. I am framing it as “you were really really sick and your immune system is still on high alert and trying to protect you so you can recover”. Now wait, you say, how could chronic fatigue like symptoms protect me? Well, if you are exhausted, you can’t go to work and you’ll stay quiet at home most of the time and less exposure chance. But what about brain fog? Again, this will slow your interaction with other people and force you to rest and heal. But, you say, I don’t like it. Well, yeah. Patience. We call grumpy patients that are recovering “convalescents”. It is a good sign when they are grumpy and over it and just want to be better. That doesn’t mean I can make myself or anyone else heal faster.

The pulmonologist says that the best test is the six minute walk test. This is usually done by a respiratory therapist. The person walks in a circle for six minutes wearing a pulse ox, with the respiratory therapist doing regular checks. This distinguishes between the people who have primarily a lung issue from all the other issues. If the person is tachycardic (fast heart rate) but not hypoxic (oxygen level dropping), then it’s not primarily lungs though blood clots to the lungs sometimes have to be ruled out. One of the mechanisms in the immune system is microclots and an increased risk of blood clots. That can mean heart attack, stroke, or pulmonary embolus, a clot in the lungs. The microclots are suspected of causing some of the muscle fatigue and exercise intolerance, by clogging capillaries and reducing oxygen flow to muscle cells. Muscle cells do not like this at all.

I have done my own quick walk test with patients since 2003, when I had terrible influenza. About a week after my influenza started, with the temperature of 104 and heart rate at 100 at rest and 135 walking, my temperature came down. However, the fast heart rate continued. Normal heart rate is 70-100 and 135 walking will make you feel exhausted. I lay on the couch and could barely make my kids dinner for two months. It resolved then. I read a book about influenza and thought that I had “influenza viral pneumonia” where there is lung tissue swelling, reducing the air spaces, after influenza.

My quick walk test in clinic is to check a sitting oxygen level and heart rate and then have the person walk. I would have them walk up and down a short hall three times then sit down. When they sat, I watched the pulse oximeter recovery. Some people would jump from a resting heart rate of 62 to a walking heart rate of over 100, say 120. Their oxygen level could stay normal or it could drop. If they dropped below 88, I would get home oxygen and forbid them to return to work. If their oxygen level held, then they needed to rest until their walking heart rate stayed under 100 and they were no longer exhausted by gentle or normal activity. If they return to work with a walking heart rate of 120, they will be exhausted and are more likely to get a secondary pneumonia or have other problems. The heart does not like to run at 120 all the time. You can see why a person who already has some coronary artery blockage would be more likely to have a heart attack if they get pneumonia from influenza or Covid-19.

The conferences I am attending are talking about “targets” in the immune system. That is, new drugs. I think the science is wonderful and amazing, but I also think we need to step back and say, this is a really really bad infection and some people need a lot of support and reassurance and time to heal. Reassure them that even though they have not yet returned to normal, the immune system is working hard to protect them from other infections and it is saying very very loudly that they need to rest. Rest, recuperate and trust the immune system. Some things need immediate treatment, especially blood clots, heart attacks and strokes, but once those are ruled out, we need to support people through their convalescence and healing.

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The photograph is from April 2021, a few days after I was put on oxygen. A selfie.

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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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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.