Friends drove me to the airport when I wasn’t really strong enough on my own. It is two hours away at least. I am very very grateful. They kept my car. I drove them to the ferry and picked one of them up last Friday. My friend L said my brakes were suspect. Two days ago I drove to his house and he took a look. I mostly held a flashlight. The front brakes are fine but the back shoes were down to very thin. I got a crash course in brakes (2006 Scion, a very useful black box of a car) and we took the drums to be ground. We ordered brake shoes and the kit of annoying springs and things.
Everything was ready yesterday so he picked me up. I held the flashlight and then held the back of the pin for one particularly annoying and difficult set of springs. He is a very good mechanic, though not primarily cars. A cell phone picture of the brake before taking it apart and studying the intact one: useful tips. He also pointed out the blue paint. Someone added that in order to keep it all straight. We got it all back together and then tested them. It did need some tweaking to tighten the emergency brake to working order again. I got home at about 4:30pm. Whew!
So today I am tired again and rather achy, but not too bad. I may attempt a quiet day, though we never know what will happen. The best laid plans can be altered at any moment. I hope to recharge my energy today!
For the Ragtag Daily Prompt: recharge. And speaking of recharging, here are two experts:
I’ve been reading journal articles about Long Covid. The three primary symptoms are fatigue, shortness of breath and brain symptoms. Mostly brain fog. Then there is a long long list of other symptoms.
For the fatigue, the journals are recommended graded increase in activity “without triggering a fatigue crash”.
Now, that is all well and good, except it’s a moving target. The amount of activity one can do is NOT static.
I have something that caused CFS-ME. My fast twitch muscles came back on line sometime between Christmas and New Years. GREAT! Then I was helping a sick friend until January ninth. I flew home and then there is all the unpacking and bills and catching up and sweeping up catfur dust elephants. Finally I got to exercise. I walked a couple miles on the beach one day and then around town with a friend the next.
Which crashed me. The third day I spent lying on the couch. My muscles basically were ALL hurting and saying, “We hate you.”
The fast twitch are back on line but they are weak as newborn kittens. For the first two days I felt strong and normal. The third day I felt like a steamroller had gone over me.
So did I do the wrong thing? Well, no. I won’t know what I can and can’t do it unless I do it, right? After four rounds (or more) of pneumonia with muscle weirdness, I can tell when it’s improving. Then I have to rebuild the working muscles. Also my slow twitch posture muscles are frankly pissed off and have been doing all the work and are not very interested in working with the fast twitch when they first come on line. “Where have YOU been? We’ve been doing YOUR work AND OURS.” I have to learn to walk again.
I was doing well with pulmonary rehab in the fall, building up on the treadmill twice a week, until I got my flu shot and then my Covid booster. Well, they are supposed to raise antibodies. Unfortunately they raised the ones that make my fast twitch muscles not work. Muscle blocker antibodies. I am just glad that my slow twitch work, because I sympathize hugely with the people who end up lying in bed. It’s still inconvenient, difficult to explain and annoying.
At any rate, gentle graded increase in activity is all very well as advice. But do you control everything that happens in your life? I don’t. Someone gets sick, the mail goes awry, a billing company changed their address and I didn’t get the memo. It all takes energy. Some days I am going to overdo, especially when I feel better. And it rather sucks to lie around the next day, but it is ok.
Over the last week I had a friend up from Portland. We walked three days running. On the third day we walked paths from my house to the lighthouse and back. About 5-6 miles. I was not quite limping when I got home, but I knew I could rest the next day. My muscles got HUNGRY and are continuing to improve.
So when your doctor tells you “graded activity to avoid fatigue crashes”, remember that it is not wholly controllable because life is not wholly controllable. Some days you will do great and others, well, hmmm. That was too much.
This story is part of a series about a Balint group for angels. Balint groups are groups for physicians to get together and talk about cases that bother them. This often means facing their own biases and discriminatory feelings. I wrote this in January 2022. The current estimate of Long Covid is 10 to 30% of non hospitalized people. Which is huge and terrifying.
“And really, it looks like at least half the population will get Omicron. The question,” says Qia, “is how much Long Haul it causes. If it causes 30-50%, like Delta, we are in serious trouble.”
The angels are silent.
“Do you think it will?”
“I am hoping for under 10%.” says Qia. “But of course I do not know.”
“Why do you go to WORST CASE?” snaps Algernon. His wings rustle.
Qia blinks at him slowly.
She thinks about it. “It is the safest place to start.”
Algernon frowns at her. Another angel slowly nods.
“If I start in the worst case scenario, I can face it. I have to think about it, work through it, plan for it. Then I can back off and hope for one of the less horrific scenarios.”
“You are WEIRD.” says Algernon.
Qia is annoyed. Her wings go bat and blood red.
“Word.” whispers a very young angel.
“WHY?” snaps Qia, “WHY NOT face the worst?”
“Most people never do,” says the moderator.
“What?” says Qia.
“Most people never face the worst. They don’t want to. They are terrified. They are scared. They do things to avoid thinking about it. They skip that step and just go straight to hope.”
Qia glares at her. The moderator smiles and her wings go black as pitch.
“We aren’t PEOPLE. We are ANGELS.” says Qia, nearly snarling.
Algernon laughs. “Yeah, well, some of us do not want to think about the worst either. That is Gawd(esses) job.”
Qia is doubly pissed off to be crying. “No, we have to think too.”
“Qia, I agree, but it is hard.” says the moderator. “That is why you have the job you have. Because you are willing to go straight to the dark.”
Qia has her face in her hands.
The angels surround her, soothing, and start to sing.
“Our culture faces a flood of conspiracism” says the Atlantic Monthly.
My great Uncle forwards an article that says we are tracking along stages as we did to WWII.
I write back. No, I say, we are tracking towards WWI.
Because of Covid-19.
The problem with the pandemic is vulnerability and grief. It is difficult to be mature enough to accept vulnerability and grief. It is easier to find someone to blame and go after them. We can’t burn a virus, we can’t hang it in effigy, we can’t take it to court and give it the death penalty. Many people are terrified and do not want to feel vulnerable and do not want to grieve. So they fall into conspiracies: it is safer to believe that the pandemic is a lie, that alien lizards have taken over the US Government, that it is the fault of a country making it on purpose, or a race, or a religion. It is easier to believe that nanocomputers are being injected with the vaccine than to think about the number of dead. It is easier not to think about the number of dead, the terrifying randomness, to believe that this only affects people with preexisting conditions, or people who God wants to smite, or people the lizard aliens hate. Or that the whole thing is a lie.
We are mimicing the late 19 teens and early 1920s very well. A world pandemic. We have a war, that is not a world war. This time we have bombs capable of destroying current life on earth. We’d be left with tardigrades and those bacteria who live in the deep trenches in boiling water where the earth’s crust is thin. At least one of my friends thinks this might be a good thing.
We have just reached 8 billion people.
In London, the Black Death had a 50% kill rate in the 1400s. Half the people that got it died. It changed the world. Pandemics change the world. In this pandemic the death rate is about 1% or a little more. However, 10% to 30% of the people with Covid-19 have Long Covid. Today, Johns Hopkins says we are at 635 million people who have gotten Covid-19. 6.6 million or more are dead from it. Then we have between 65 million and 195 million people with Long Covid in the world.
We don’t know how long Long Covid lasts. We don’t know how to cure it. We do not know if we can cure it or if people will get better. We do not know, we do not know, we do not know.
Which is also terrifying. So the conspiracy and someone to hate or some group to hate or someone to fight is safer for many people.
Do not go there. We must grieve. We must help each other. We must face fear and not give in to it. We must not fall into the trap of the charismatic leader who will give us villains, who will lead us into a World War to distract us from our grief.
And from there into a world depression. Remember, the Roaring Twenties end with the worst depression the world has seen so far. Let us not repeat it, let us not beat it.
Sometimes medical articles are SO IRRITATING! Like this:
Symptomatic Long COVID May Be Tied To Decreased Exercise Capacity On Cardiopulmonary Exercise Testing Up To Three Months After Initial SARS-COV-2 Infection
Healio (10/18, Buzby) reports a 38-study systematic review and meta-analysis “suggested with low confidence that symptomatic long COVID was associated with decreased exercise capacity on cardiopulmonary exercise testing up to 3 months after initial SARS-COV-2 infection.” According to the findings published in JAMA Network Open, “underlying mechanisms may include but are not limited to deconditioning, peripheral mechanisms, hyperventilation, chronotropic incompetence, preload failure and autonomic and endothelial dysfunction.”
Wouldn’t it be nice if they believed the patients?
Let’s break this down. What does it all mean? Ok, the “low confidence” irritates me because it implies that the physicians can’t believe the patients who say “hey, I am short of breath and have a fast heart rate and get really fatigued if I try to do anything!”
I have had my fourth bout of pneumonia with shortness of breath and tachycardia. This time, since I am older, I had hypoxia bad enough to need oxygen. This is the FIRST TIME that some physicians have actually believed me. They believed the pulse oximeter dropping down to 87% and below, with a heart rate in the 140s, but they did not believe me and some accused me of malingering, for the last 19 years. Can you tell that I am a little tiny bit annoyed? If my eyes shot lasers, there would be some dead local physicians. And I AM a local physician, disbelieved by my supposed peers.
Let us simplify this gobbdygook: “underlying mechanisms may include but are not limited to deconditioning, peripheral mechanisms, hyperventilation, chronotropic incompetence, preload failure and autonomic and endothelial dysfunction.” The way I think of it is that sometimes a pneumonia will cause lung tissue swelling. Ok, think of the air space in your lungs as a large balloon. Now the wall of the balloon swells inwards and suddenly there is half as much air space. Guess how your body takes up the slack? The heart goes faster and you have tachycardia. This is a very simple way to think about it. I have tested patients who complain of bad fatigue after an upper respiratory infection with a very simple walk test. 1. I test them at rest, heart rate and oxygen saturation. 2. I walk them up and down a short hallway three times. 3. I sit them back down, and watch the heart rate and oxygen saturation. I watch until they are back to their seated baseline.
A friend tested recently and his resting heart rate was 62. After walking, his heart rate is in the 90s. H does not have a pulse oximeter, but his oxygen level is probably fine. However, that is a big jump. He has had “a terrible cold” for 8 days. I would bet money that his heart rate normally doesn’t jump that much. He still needs recovery time and rest.
In clinic, I had people who were ok at rest but needed oxygen when they walked. We would get them oxygen. More often, they did not need oxygen, but they were tachycardic. When they walked, their heart rate would jump, over 100. Normal is 60-100 beats per minute. If they jumped 30 beats or jumped over 100, I would forbid them to return to work until their heart rate would stay under 100 when they walked. If they went back to work they would be exhausted, it would slow healing, and they might catch a second bacteria or virus and then they could die.
Patients did not need a pulse oximeter. I would teach them to take their own pulse. The heart rate is the number of beats in 60 seconds. I have trouble feeling my own wrist, so I take mine at my neck. It’s a bit trickier if someone has atrial fibrillation but the pulse oximeters aren’t very good with afib either.
When I have pneumonia, my resting heart rate went to 100 the first time and my walking heart rate was in the 140s. I had influenza and felt terrible. My physician and I were mystified. It was a full two months before my heart rate came down to normal. I was out of shape by then and had to build back up. If I tried to walk around with my heart at 140, I was exhausted very quickly and it also felt terrible. The body does NOT like a continuous fast heart rate and says “LIE DOWN” in a VERY FIRM LOUD VOICE. So, I lay down. Until I recovered. For a while I was not sure if I would recover, but I did. This time it was a year before I could go to part time oxygen.
The fatigue follows the heart rate. Tachycardia is not good for you long term. If the heart is making up for reduced air space in the lungs, it doesn’t make sense to slow the heart rate with drugs. You NEED the heart to make up for the lungs. You need to rest, too!
Blessings and peace you.
The photograph is Elwha, helping me knit socks. With the bad air from the fires and my still recovering lungs, I am staying indoorsandknitting socks .
I am still working my way through my immune response to an influenza shot and six days later, my Covid-19 booster.
I am kicking myself a bit for having them that close together, but at least my immune system responds. I think my immune system takes a shotgun approach and raises ALL the antibodies, and since I most probably have some antibodies that attack my own tissues, it’s not terribly much fun. I’ve had to put pulmonary rehab on hold until my fast twitch muscles work again. They aren’t working and my slow twitch muscles are very pissed off and stiff at having to do double duty. If I do aerobic things, my rib muscles hurt for two days. THAT feels awful.
The good thing (ha.) is that I am having the antibody response but I do not have pneumonia. The working theory is that I have PANS and antibodies to tubulin. Tubulin powers muscles, including lung cilia. Their job is to clean any trash out that gets breathed in. I am at much higher risk for getting pneumonia while the lung cilia are on auto-immune vacation. I am mostly staying home and masking when I go out. A friend got exposed to Covid-19 and refused to test at day five. Well, ok for him, but he could be asymptomatic. So he’s not allowed anywhere near me for at least another ten days. I disapprove of his callousness towards me and others.
Tobacco also paralyzes lung cilia. When I was working I would warn smokers that they might cough more when they stopped smoking, because the cilia would wake up and clean house. “Hey! No one has swept here in years!” A year after quitting smoking, the lung cancer risk drops almost to that of a non-smoker, because those cilia clean house. Isn’t THAT cool?
I don’t know how long my fast twitch muscles will be screwed up. With the last pneumonia, it was nearly a year before the antibodies finally went down. I woke one morning with my slow twitch muscles insanely stiff and my fast twitch back but weak as a newborn kitten. My slow twitch muscles were yelling at my fast twitch: “Where have you BEEN? We’ve been doing YOUR WORK!!” My fast twitch were confused, weak and surprised. I could barely walk down my stairs that day.
Even so, I am lucky. I have a version of chronic fatigue, but because only my fast twitch muscles are affected, I can still do stuff while sick. The people who can barely get out of bed, my working theory is that it is both the fast twitch and the slow twitch muscles that are affected.
And then there are the brain antibodies. Ugh. The silver lining is that the antibodies make me a bit OCD and a bit ADHD, so I am organizing the house. I vacuumed the stairs. That sounds trivial except that I HATE the vacuum. I usually use this peculiar cat hair sponge thing on the stairs, but this time I got the vacuum out. I think organizing and vacuuming are hella funny symptoms of autoantibodies.
Here is a blog post by another physician, also about brain antibodies and encephalopathy. Brain inflammation.
If I have the energy today, I may try to look up the trajectory of antibody rise and fall after immunization. My brain tells me somewhere between 6 weeks and 6 months, pulling old data from somewhere, but I took immunology classes when I was working at the National Institutes of Health (late 1980s) and in medical school (early 1990s), so there may be new information. Science changes. I am hoping for less than six months really, and meanwhile trying not to get pneumonia.
Blessings and peace you.
I took the photograph in 2021, while I was REALLY sick. Glow in the dark Zombies stealing the cat food. I have to entertain myself somehow when I have pneumonia.
The pandemic splits the thin veneer of civilized behavior
like a heavy maul falling on delicate antique wood
and wild fear emerges and riots through the streets
while some hide, some stay calm
and try to sooth the selfish unleashed beast
The last ten days sucked but the results are probably good.
What? Wait, why?
I saw the pulmonologist week before last on Wednesday. Her office does not give the new Covid-19 shot but does give flu shots. I got my flu shot. It didn’t seem to bother me much except that I felt a bit tired and grumpy.
I saw my family practitioner on Tuesday, after my pulmonary rehab. For the first time I did not improve in pulmonary rehabilitation (12 weeks, twice a week). I also seemed to have a faster heart rate, up to 140 beats per minute, on the treadmill. My doctor had me walked and even going around the block, my heart rate went to 115. Weird, I thought.
My family doctor did have the new Covid-19 vaccine so I got that. The next day I was more tired and grumpy. On Thursday I lost ground on the treadmill and felt awful and my heart rate just seemed high all the time.
Oh. This is an appropriate reaction for me to two vaccines one week apart. What? you say. Well, when I get pneumonia (four times), I have a fast heart rate response, shortness of breath, fatigue and I feel grumpy and wired. The theory is that I have antibodies to the dopamine receptors, that turn the receptors ON. Dopamine can raise your heart rate. At the same time, I have antibodies to tubulin. Those antibodies make my fast twitch muscles not work right, as well as lung cilia. So: fast heart rate, treadmill is much more difficult, and I started sleeping ten hours a day.
This means my immune system is working. It is making LOTS of antibodies, which is what I theoretically want it to do, though I would rather not have the dopamine and tubulin ones. Just antibodies to influenza and Covid-19. However, my immune system seems to have PTSD and when it makes antibodies, it makes them to EVERYTHING. This makes me very tired, grumpy, screws up exercise and gives me shortness of breath and a fast heart rate.
How long will it last? I am not entirely sure. With infections, antibodies rise and then fall over 3 to 6 or more months. The naturopaths say that food intolerance antibodies fall in three weeks if you stop eating the offending item. I want my Covid-19 antibodies to persist for 3-6 months or more, flu antibodies as well, but I’d like the ones that give me a fast heart rate and shortness of breath to drop right away!
I guess I will find out. At least my immune system works, however oddly.
Blessings and peace you.
I took the photograph of the Great Blue Heron just after she took off yesterday. I am trying to catch more birds in flight! Mostly I catch parts of birds, the tip of a wing, or feet. I am really pleased with this one.
In Practicing conflict, I wrote about practicing conflict by arguing different sides of a topic inside my head. I wrote that I don’t fear conflict and have learned to enjoy arguing with myself. I am a physician and physicians argue all the time.
What? No they don’t. Well, the doctor persona does not argue with the patient much. Some doctors give orders to patients, others try to negotiate, some try to convince. But behind the scenes, doctors are more like the Whacky Racer Car with the Cave Guys, running with their feet and hitting each other with clubs.
In residency in Family Practice at OHSU in Portland, Oregon, I start on General Surgery during internship. This is in the early 1990s and there was not much in the way of “disruptive physician” rules. I have to cover Trauma and Plastic Surgery and General Surgery at night on call. The resident is present but I get paged first for patients on the floor. I learn that I should go to all Trauma pages in the emergency room. If I know what is happening with the new Trauma patient, it’s a lot easier to handle the phone calls for more drugs and so forth. Also, the resident is less mean to me.
We attend the Trauma “Grand Rounds”. These are unreassuring to a new intern. A resident presents a trauma patient, giving the history in the accepted formal order. The Faculty Trauma Surgeons interrupt, disagree with management of the patient and yell. They yell at the resident and at each other. The upper level residents yell too, being well trained. The Trauma Surgeons do not agree with each other. They are inflammatory and rude. I am shocked initially: medicine is not a cookbook, is not simple and it appears that it is a controversial mess. It turns out that medicine IS a controversial mess.
There is not as much yelling on the next rotation. At that time Trauma Surgeons yelled more than any other set of doctors that I ran across. They yelled in the ER, at each other, at the staff, at the nurses, at the residents. The culture has changed, I suspect, but that’s how it was then.
I take Advanced Trauma Life Support as a third year resident. The Trauma Surgeons at OHSU helped write the course. They don’t agree with it. On some questions the teaching Surgeon says, “The answer to this question is (c), “ followed by muttering loudly, “though I totally don’t agree with that and I would do (b).” Another Trauma resident or surgeon then might start arguing with him, but they moved on pretty quickly, to teach the current agreed best practices in the book. Which change every few years. Great.
Years later (2009) I join the Mad as Hell Doctors, to go across the US talking about single payer. They are a group from Oregon. Physicians for a National Healthcare Program are a bit cautious with us the first year: we might be whackos. We have an RV with our logo and we have a small fleet of cars and what do you think we do in the cars? We argue. Or discuss. Or whatever you want to call it. We spend the driving dissecting issues and how to present things best and tearing apart the last presentation and rebuilding our ideas. The group does 36 presentations in 24 days. Each presentation takes an hour to set up, two hours to do and another hour to break down and debrief. We get more and more exhausted and cranky and um, well, argumentative, as the trip proceeds. Even though I think of the Whacky Racer Cave Guys running with their feet and bonking each other with clubs, this is the most wonderful group of doctors I have ever been with. A common goal that we all want to get to, discussing and disagreeing on strategy all the way! I feel closer to those physicians in a week then I feel to any of the physicians that I’ve worked with for the last 9 years in my small town. Conflict with a common goal.
Doctors are TRAINED to argue, even with themselves, to document every decision in the chart with reasons why they have reached that decision. And that they have thought about all of the reasons for say, a low potassium, thought of every possible cause and worked their way through testing. The testing always has two strands. One strand is rule out the things that could kill the person NOW, even if rare. The other strand is what is common? You have to think about both at the same time, always. And argue with yourself about which tests should be done, in what order, what is most important, how do you treat the person while awaiting results, and have I missed anything? And if we aren’t sure, we call another doctor, run it by them, wait for them to shoot holes in our logic or to say, no, I can’t think of anything else.
We can deal with conflict. We must deal with conflict. The world is too small not to deal with conflict, with disagreements, with different viewpoints and positions and ideas. If doctors can do it every single day at work, then everyone else can too. Trying to see all the positions and possible diagnoses saves lives in medicine. We need to extrapolate that to everything else. Try to see other positions, try to understand them, to respect them. We can and we must.
A friend calls me yesterday, complaining that the new Covid-19 vaccine doesn’t prevent infection nearly enough for him to want to get it. He is in his 70s and says darn it, he’d still have a 60% chance of getting infected.
I thought about it and wrote back this morning:
Re the new vaccine the POINT is NOT to prevent infection, though it lessens it in codgers like me and you.
The point is that the vaccinated younger people shed a s–tload less virus if they get it, because their immune system kills it fast. This reduces the amount of circulating virus so that the codgers stop dying like flies. Also the codgers get less sick if their immune system recognizes B4 and B5.
Got it? Get the vaccine.
I am waiting for the top ten causes of death for 2021 to come out. Over one million US people have died of Covid-19. In 2020, there were between 300-400,000 deaths from Covid. That means that we lost 600-700,000 in 2021. If we lost close to 700,000 people, then Covid-19 would beat out heart disease as the number one cause of death in the US. When did that last happen? During the 1918-1920 influenza, the “Spanish” flu that has been traced to a chicken farm in the US midwest.
Here is a fascinating chart: https://www.cdc.gov/nchs/data/dvs/lead1900_98.pdf. If you scroll to the end, the top two causes of death in 1900 were pneumonia first and tuberculosis. Heart was fourth. Heart rises to first in 1910 but then pneumonia is back at the top in 1918-1920. I think that the heart has been number one ever since, in the US. World top ten is not the same.
This is not the first pandemic and it won’t be the last. It is horrible. I think that everyone is doing the best they can, though some responses seem saner than others. Remember the old doctor joke about what to do in a code (when someone’s heart has stopped). First: check your own pulse. It’s a corollary that if the patient is dead, you can try to bring them back, but you can’t make them more dead. Also, my latest Advanced Cardiac Life Support class, on line, told me that sometimes I do not have to do cardiac life support. Their example was a decapitated patient. Really? Ouch, doctor humor. But truly, if you are freaking out or want to scream at someone or feel like the world is nuts and you have to do something, first check your own pulse. Slow it down. Breath in four and out four. I can drop my pulse from 101 to 71 in 20 seconds, just by slowing my breathing. You can learn to too.
My recommendation is that if you are due for the booster, get it. And thank you for protecting me and my friend and the other codgers.
No, it is not snowing here yet. But codger seems to be a word for an old GUY. Humph. Would a grumpy hummingbird be a grummer? What is a female codger? I am using codger for any gender, to heck with it.
Refugees welcome - Flüchtlinge willkommen I am teaching German to refugees. Ich unterrichte geflüchtete Menschen in der deutschen Sprache. I am writing this blog in English and German because my friends speak English and German. Ich schreibe auf Deutsch und Englisch, weil meine Freunde Deutsch und Englisch sprechen.
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