Covid-19: Hope for Long Haul

I want to offer hope to the people with Long Covid-19. Having been through four bad pneumonias, with increasingly long recovery times, and now disabled for doing Family Medicine, I have experience to share. First I want to talk about chronic fatigue and fibromyalgia.

I am a piler, not a filer. Including in my brain. I have been adding to the chronic fatigue and fibromyalgia pile since I was in medical school.

In residency a new patient questions me. “Do you believe in chronic fatigue?” he says, nearly hostile.

“Yes,” I reply, “but I don’t know what it is or what causes it or how to fix it.”

For years different causes were suggested. Often infections: EBV, mononucleosis, lyme disease. Some people didn’t have any infection. I did note even in residency that my chronic fatigue patients all had one thing in common: they were exhausting.

Does that sound terrible? They were all type A, high achievers, often super high energy. Often they got sick or crashed when they were working three jobs, or working 20 hours a day on their own business, or doing something that sounded insanely exhausting and unsustainable. And most of them wanted that back. “Ok, wait. You were working 20 hours a day, seven days a week, got sick and THAT is what you want to get back to?”

None of the chronic fatigue people seemed to be type B.

Eventually I read that one in ten people with ANY severe infection can get chronic fatigue.

Then I work with the U of Washington Telepain Clinic, on zoom. They start studying functional MRIs of the brains of people with fibromyalgia.

They use a thumbscrew. They put a measurable amount of pressure on a person with no fibromyalgia. The person reports 3-4 out of 10 pain. The brain lights up a certain amount in the pain centers on the MRI. The doctors can SEE it. Then they test the fibromyalgia people with the same amount of thumbscrew pressure. The fibromyalgia people report 8-9/10 pressure and they are not lying. The pain centers in the brain light up correspondingly more. So they ARE feeling 8-9/10 pain.

Is this a muscle problem? A brain problem? Or both?

It appears to be both. Chronic fatigue and fibromyalgia and other disorders with pain out of proportion to the physical findings were being called “central pain processing disorders”.

I thought of chronic fatigue as a sort of switch. As if at a certain level of stress or exhaustion or infection the body would throw a switch. And force the person to rest.

I wondered if the type B people just rested and got over it, while the type A people fought it like tigers. Which seemed to make it worse.

And now we have Covid-19. The study getting my attention is saying that 20%, or 1 in five people age 18-64, have Long Haul symptoms. Over 65 it is 25%, one in four. And it can happen in people with no preexisting conditions. Preexisting conditions or not, this sucks. The two biggest complaints are lung related and muscle related.

I have chronic fatigue following my third pneumonia in 2014. I might be just a little type A. I went back to work too soon (6 months after the pneumonia) and after a half day would crash asleep at 3 pm. For another 6 months. Now that I have had the fourth pneumonia and have been off for a year and been on oxygen, I feel better than I have since before 2014, even though I still need oxygen part time. Guess I was in denial about the chronic fatigue. NOT ME!

So, dear reader, learn from me and don’t be like me. The biggest thing that I have had to get through my thick type A skull is that when my body wants rest, I need to rest. This can be hella annoying, as my son would say. I have to pay attention to my energy level and decide what to do. And some of my precious energy has to go to things like laundry and paying bills! How very frustrating. My markers are energy level and also pulse. My pulse tells me when I need oxygen and when I am really sick. With the first pneumonia back in 2003, influenza, my resting pulse stayed at 100. My normal then was about 65. When I stood up, my pulse went to 135. It was EXHAUSTING to stand up. I had to rest half way up one flight of stairs. It was hard to walk two blocks to pick my daughter up from primary school. And I looked fine. Neither my doctor nor I could figure it out. I finally guessed that it was lung tissue swelling and hoped it would go down eventually. It did, but it was a full two months and my doctor partners thought I was malingering. I tried not to wish it on them. It sucked and I felt awful back at work, but my pulse had finally come down. We even did a heart ultrasound, but all it showed was a fast heart rate. My chest film looked “normal”, because the tissue swelling is throughout the lungs, so it cannot be seen on a chest xray. It was very weird, but I recovered. And all the descriptions of Long Covid sound like my lung swelling. Fast heart rate, difficulty breathing, muscle pain and terrible fatigue. Go back to the couch.

Go back to the couch and wait. Do what you have to but if your heart rate is over 100 when you get up, you have to rest. Otherwise you will prolong it. Seriously.

More later. Peace me and sending love and peace.

Anna’s hummingbirds can survive below freezing temperatures by slowing their metabolism at night, until it warms up in the morning. Talk about resting!

Lung swelling and long covid

I wrote this in 2017, about influenza. However, I think covid-19 can do the same thing. Part of long covid is letting the lungs really heal, which means infuriating amounts of rest and learning to watch your own pulse. Watching the pulse is easier then messing around with a pulse oximeter. The very basics of pulse is that normal beats per minute is 60 to 100. If your pulse is 70 in bed and 120 after you do the dishes, you need to go back to bed or the couch and REST.

From 2017: Influenza is different from a cold virus and different from bacterial pneumonia, because it can cause lung tissue swelling.

Think of the lungs as having a certain amount of air space. Now, think of the walls between the air spaces getting swollen and inflamed: the air space can be cut in half. What is the result?

When the air space is cut down, in half or more, the heart has to work harder. The person may be ok when they are sitting at rest, but when they get up to walk, they cannot take a deeper breath. Their heart rate will rise to make up the difference, to try to get enough oxygen from the decreased lung space to give to the active muscles.

For example, I saw a person last week who had been sick for 5 days. No fever. Her heart rate at rest was 111. Normal is 60 to 100. Her oxygen level was fine at rest. Her oxygen level would start dropping as soon as she stood up. She had also dropped 9 pounds since I had seen her last and she couldn’t afford that. I sent her to the emergency room and she was admitted, with influenza A.

I have seen more people since and taken two off work. Why? Their heart rate, the number of beats in one minute, was under 100 and their oxygen level was fine. But when I had them walk up and down a short hall three times, their heart rates jumped: to 110, 120. Tachycardia. I put them off from work, to return in a week. If they rest, the lung swelling will have a chance to go down. If they return to work and activity, it’s like running a marathon all day, heart rate of 120. The lungs won’t heal and they are liable to get a bacterial infection or another viral infection and be hospitalized or die.

I had influenza in the early 2000s. My resting heart rate went from the 60s to 100. When I returned to clinic after a week, I felt like I was dying. I put the pulse ox on my finger. My heart rate standing was 130! I had seen my physician in the hospital that morning and he’d gotten a prescription pad and wrote: GO TO BED! He said I was too sick to work and he was right. I went home. It took two months for the swelling to go down and I worried for a while that it never would. I dropped 10 pounds the first week I was sick and it stayed down for six months.

Since the problem in influenza is tissue swelling, albuterol doesn’t work. Albuterol relaxes bronchospasm, lung muscle tightness. Cough medicine doesn’t work very well either: there is not fluid to cough up. The lungs are like road rash, bruised, swollen, air spaces smaller. Steroids and prednisone don’t work. Antiviral flu medicine helps if you get it within the first 72 hours!

You can check your pulse at home. Count the number of beats in one minute. That is your heart rate. Then get up and walk until you are a little short of breath (or a lot) or your heart is going fast. Then count the rate again. If your heart rate is jumping 20-30 beats faster per minute or if it’s over 100, you need to rest until it is better. Hopefully it will only be a week, and not two months like me!


Feel free to take this to your doctor. I was not taught this: I learned it on the job.

I took the photograph, a stealthie, in June 2021, when I was still on oxygen continuously.

Update on whatever it is I have

I had the heart echocardiogram bubble study. Normal. I really really did not like having the mix of blood, saline and AIR injected and I COULD FEEL IT. My logical brain knew it was going into a vein, but my emotional brain kept yelling “Air embolisms kill people!” Yes, but that is arterial. My emotional brain did not care. Anyhow, it was fine.

Saw the cardiologist who said he can understand why I feel PTSD going into my local hospital. He says I should not need oxygen at age 60 with no smoking. He says “Not your heart.” Yeah, duuuude, I know. He suggests I go to the Mayo Clinic. I agree.

Meanwhile, my primary sent a referral to rheumatology to have me seen at Swedish to confirm chronic fatigue. This is to keep the stupid disability off my back. Swedish rheum doesn’t call me. I ask my primary’s office. Swedish STILL doesn’t call me. I call them, as follows.

“Hi, I was referred to Swedish rheum and I have not been called.”

“Name, serial number, date of birth, length of little toe. Ah, we just received the referral yesterday.”

“Um, I don’t think so. I was referred over a month ago.”

“Uh, oh,” scrabble noises, “Oh, uh, we got a referral in December. We were not taking new patients in December.”

“When did you start taking new patients?”

“Oh, um.”

“When did you start taking new patients?”

“Oh, uh, January. But we only took the ones that called us, because after they call, we then review the notes.”

“So you ignored the referral until I call? How am I supposed to know that?”

“Oh, uh, we will expedite your referral. Maybe even today.”

So THEN I get a message from my primary that they have REFUSED the referral. Great.

Meanwhile I read the cardiologist’s note, which pisses me off. “We will refer you to Mayo Clinic since you have unexplained hypoxia and you think you have PANS.”

I send my primary a very pissed off note saying, could we please phrase this as “a psychiatrist suggested PANS in 2012 and while no one likes this diagnosis, no one else has suggested an overarching diagnosis since that time in spite of her seeing four pulmonologists, neurology, cardiology, infectious disease, four psychiatrists, allergy/asthma, and immunology”. Saying “the patient thinks she has PANS” automatically labels me as crazy and obsessed.

So, it seems I should write a book, about how the medical communities treat patients, including a fellow physician, horribly. Of those doctors, three have treated me with respect and were grown up enough to say, “We don’t know.” The neurologist, the infectious disease doc and the present pulmonologist. All the rest are dismissive and disrespectful. Oh, and the one psychiatrist, but the next one says, “I don’t believe in PANDAS.” I stare at him in disbelief, thinking “they are animals related to raccoons that live in China, you moron”. I did not even know it was controversial until that moment. Holy PANDAS, Batman.

My primary has suggested I write to the Mayo Clinic myself, and I am going to. Because the present people aren’t listening, except my pulmonologist and she is short staffed and looks like death warmed over post call every time I see her.

So it’s all annoying as hell. The cardiologist seemed pretty nice, but damn, he put the same damn rumor down about me self diagnosing. Most of the doctors apparently think I might be a tolerable person if they could just drug me with psych drugs. And from what I have seen, there are many patients who are in this situation.

For the Ragtag Daily Prompt: WAR.

https://pubmed.ncbi.nlm.nih.gov/30724577/

Covid-19: simplified self care

  1. I am a Family Practice Physician for 30 years. I have had pneumonia four times. I last got pneumonia on March 20, 2021 and I am still off work and on oxygen. This is the first time I have been on oxygen. No tobacco, no marijuana, no lung disease found to date but my mother had tuberculosis when I was born and my father smoked unfiltered Camels. With the hospital beds filling up, this is to help keep people out of the emergency room if they don’t need to be there and to help people track how sick they are.
  2. Learn to take your pulse. You need a second hand. Your heart rate is the number of beats in 60 seconds. Take it at rest (which means sitting or lying down). Then try taking it after you walk. It should be regular unless you have known atrial fibrillation. Also, if you are fifty or older, you may skip some beats so that you have early or late ones. That is not worrisome.
  3. Normal is 60-100. If you are very out of shape, you might go up to 120 after you run up the stairs or walk fast.
  4. If your resting pulse is 120 or higher, call your physician. If you are very short of breath with that or your lips are turning blue, call an ambulance right away.
  5. If your resting pulse is normal, say, 70 beats per minute, and your pulse after walking goes up 30 points or over 100, you are sick. If you are very short of breath after walking you may need oxygen. Call your physician and walk… really… slowly. When your lungs are swollen, there is less air space to exchange oxygen and your heart makes up the difference. If your heart is beating at over 100 for long, it is like running a marathon. Don’t stop walking completely because you are at risk for blood clots. But walk really slowly.
  6. If your resting pulse is normal and your walking pulse is ok, try a loaded walk. Carry something that weighs 20 pounds if you can. Then sit down and check a pulse again. If it is over 100 or jumps 30 points, you too have lung swelling, it’s just a little more subtle. You need to rest too.
  7. With practice, you will have a good idea what your pulse is before you do a formal count.
  8. You can use a pulse oximeter but you have to use it accurately. The fingers should be not moving and lying on the person’s knee or table or something. Otherwise it will give inaccurate readings and scare you. With a regular heart rate, look for the light to be picking up regularly before you believe the oxygen level. O2 sats under 87% need oxygen, but also if someone is going below 95% or is a child, call doctor or ambulance.
  9. Take a multivitamin. It is a lot of work for your heart to race fast. Rest, rest, rest. I have had 4 rounds of pneumonia with lung swelling. It took two months, two months, a year and this time I am five months post pneumonia and still on oxygen.
  10. Don’t use quack supplements and don’t take veterinarian ivermectin. Hello, you are not a sheep.
  11. Remember that if someone is hypoxic, they may act goofy, happy and unconcerned or be scared or have memory loss or just be confused. I write really weird rhyming songs when hypoxic and have the poor judgement to sing them to my doctor.
  12. GETTING VACCINATED IS YOUR BEST BET TO NOT DIE OF COVID-19. AND WEARING A MASK ALL THE TIME AROUND OTHER PEOPLE.

Good luck and take care.

Covid-19: caring for yourself

audio version, covid-19: Caring for yourself

A friend took his father to the ER in the next bigger town, sent there for admission to the hospital from the clinic. His father is in his 90s, has heart failure, and his legs were puffed up like balloons with weeping blisters.

They were in the ER for 13 hours, never given food though it was promised, the staff couldn’t even find time to bring a urinal and his father was not admitted. He was sent home. No beds. On divert.

Ok, so when should you go to the hospital right now? Only if you really really can’t breathe….

First, the emergencies. An ER nurse friend talks about “happy hypoxia” where people do not feel bad but have an oxygen saturation of 50%. I suspect that this is when their lungs really are swelling shut very fast. They will turn blue quickly. Call an ambulance. In the 1918-1919 influenza, soldiers “turned blue and fell over dead”. In Ralph Netter’s book on pulmonary diseases, he has a drawing of the lungs of a person who died from influenza pneumonia. The lungs are basically one big red purple bruise with no air spaces. So if a friend is goofy and their lips are turning blue: AMBULANCE.

The one in five hospitals that are 95% full or more in the US are now cancelling all of the elective surgeries: knee replacements, hip replacements, non emergent heart surgeries, all of it.

If you are not dying, do not go to the emergency room if you are in one of the totally swamped areas.

So how to care for yourself with covid-19? Like influenza, it is pretty clear that it either causes lung swelling or the lungs fill with fluid or both. With lung swelling you may be able to stay home. First take your pulse. If you have a pulse oximeter, great, but no worries if you don’t. .What is your resting heart rate? Count the number of heart beats in 60 seconds

If it’s 60-100, that is good. It’s normal. If it is 120 at rest, that is getting worrisome. If you are short of breath at rest and your pulse is over 100, call your doctor. If they can get you oxygen, you still may be able to stay home. If not, emergency room.

Now get up and walk. Do you get short of breath? Sit back down and again, count the number of heartbeats when you are sitting. If your resting pulse was 90 and you jump to 130 walking, you have lung swelling. Functionally you have half the normal air space and so your heart is making up the difference. How to cope? Well, walk slowly. Walk during the day, do get up because otherwise you may get a leg blood clot, but really minimize your activity. Now is not the time to rearrange the furniture. Also, you may not go to work until your walking or loaded pulse is under 100.

If your pulse does not jump up when you walk, next try walking loaded. That is, carry something. Two bags of groceries, a toddler, a pile of books. Go up the stairs. Sit down and take your pulse when you are short of breath or it feels like your heart has speeded up. I am in this category. My pulse is 70, oxygen at 99 sitting. Walking my pulse jumps to 99. Walking loaded my pulse goes to 125 and my oxygen level starts dropping, need oxygen once it gets to 87. I tried a beach walk without oxygen 3 weeks ago. I photographed the pulse ox when it was at 125 with O2 sat at 87. I still need oxygen.

The treatment for lung swelling is rest. This is my fourth time, so I am used to it. Some people will have so much swelling they will need oxygen at rest. If the lungs swell shut, they need to be intubated or they die. Suffocation is not fun. The other treatment is not to catch another virus or a bacteria on top of the present lung swelling. Wear mask, get vaccinated, put out the cigarrette, no vaping, pot is terrible for the lungs too and increases the risk of a heart attack.

With my four pneumonias, the first two made me tachycardic and it took two months for the lung swelling to subside. It sucked. Inhalers don’t work, because they work by bronchodilating. You can’t bronchodilate swollen lung tissue. The steroid inhalers might help a little but they didn’t help me. The third pneumonia took 6 months to get back to work and then I was half time for 6 months. This time I am five months out today and I still need oxygen. Darn. Don’t know if my lungs will fully recover. They may not.

So: rest. Good food. Avoid substance abuse. Mask all visitors and don’t go to parties/raves/concerts/anything. Oxygen if needed and if you can get it.

Take care.

The photograph is me wired up for a sleep study a week ago. The technician took it at my request. I won’t have results until next week.

heart of clay

I look for a broken heart on the beach. I nearly miss it, but here it is. I nearly miss it because it is so large. A clay heart, broken all the way through.

Here is a stealthie with my foot for scale.

Shoe selfie for scale, at the base of the broken clay heart.

Part of the cliff has recently collapsed. The heart must have broken during the slide. It will wash away in pieces now. Here is the cliff and you can see the scar of the slide. And the broken heart.

broken clay heart in the wall of the cliff, with the scar of a slide collapse

I tried walking the beach without oxygen. I did pick up rocks. I took a pulse oximeter with me. Carrying maybe three pounds of rocks, my oxygen saturations drop. Not well yet. 87 or below is not ok. It feels awful and exhausting too. Like being at a high altitude and not used to it. A pulse of 130 also does not feel great, normal being 70-100.

Pulse oximeter, with pulse 130 and oxygen saturation 87.

Thank goodness for the oxygen and the tanks that let me be mobile. Blessings and take care of your heart.

Influenza and lung swelling

Influenza is different from a cold virus and different from bacterial pneumonia, because it can cause lung tissue swelling.

Think of the lungs as having a certain amount of air space. Now, think of the walls between the air spaces getting swollen and inflamed: the air space can be cut in half. What is the result?

When the air space is cut down, in half or more, the heart has to work harder. The person may be ok when they are sitting at rest, but when they get up to walk, they cannot take a deeper breath. Their heart rate will rise to make up the difference, to try to get enough oxygen from the decreased lung space to give to the active muscles.

For example, I saw a person last week who had been sick for 5 days. No fever. Her heart rate at rest was 111. Normal is 60 to 100. Her oxygen level was fine at rest. She had also dropped 9 pounds since I had seen her last and she couldn’t afford that. I sent her to the emergency room and she was admitted, with influenza A.

I have seen more people since and taken two off work. Why? Their heart rate, the number of beats in one minute, was under 100 and their oxygen level was fine. But when I had them walk up and down a short hall three times, their heart rates jumped: to 110, 120. I put them off from work, to return in a week. If they rest, the lung swelling will have a chance to go down. If they return to work and activity, it’s like running a marathon all day, heart rate of 120. The lungs won’t heal and they are liable to get a bacterial infection or another viral infection and be hospitalized or die.

I had influenza in the early 2000s. My resting heart rate went from the 60s to 100. When I returned to clinic after a week, I felt like I was dying. I put the pulse ox on my finger. My heart rate standing was 130! I had seen my physician in the hospital that morning and he grabbed a prescription pad and wrote: GO TO BED! He said I was too sick to work and he was right. I went home. It took two months for the swelling to go down and I worried for a while that it never would. I dropped 10 pounds the first week I was sick and it stayed down for six months.

Since the problem in influenza is tissue swelling, albuterol doesn’t work. Albuterol relaxes bronchospasm, lung muscle spasms. Cough medicine doesn’t work either: there is not fluid to cough up. The lungs are like road rash, bruised, swollen, air spaces smaller. Steroids and prednisone don’t work. Antiviral flu medicine helps if you get it within the first 72 hours!

You can check your pulse at home. Count the number of beats in one minute. That is your heart rate. Then get up and walk until you are a little short of breath (or a lot) or your heart is going fast. Then count the rate again. If your heart rate is jumping 20-30 beats faster per minute or if it’s over 100, you need to rest until it is better. Hopefully it will only be a week, and not two months like me!