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.

Upstage

I am reading Kim Addonizio’s Ordinary Genius, A Guide for the Poet Within, for a class. In the chapter about cliches, she suggests choosing a cliche and playing with it. The first example on her list is “A sudden fear gripped me”, so she inspired this:

Upstage

A sudden fear gripped me by my nipples
I hear my mother: Colder than a witch’s titty
Why must the witch’s titties be cold?
Must they dance naked even in the bitter winter?
Can a witch retire at a certain age
Sit warm, clothed, with her cat and tea
By a fire with enough fuel for winter?
You’d think they’d get pneumonia dancing naked
In any weather; yet witches are usually old.
Maybe it acts like jumping in to cold water
To dance around a Beltane fire; maybe witchery
is hot work and they aren’t cold at all.
Maybe a witch’s titty is warm all the time
And meanwhile the fear is gone, upstaged by titties.

Are our immune systems failing because of isolation? No, and here is why.

A friend quotes her son, who says that our immune systems are failing because we have been in isolation. I respond that it’s not isolation: it is stress. Anyone who is not stressed by the addition of war to a pandemic needs to have their head examined. Why does stress mess up our immune systems?

We have two main systemic states: sympathetic and parasympathetic. Sympathetic is the high stress, fight or flight, muscles fired up, gut on hold, and unfortunately we have a pretty sympathetic state culture. Add a pandemic on top of that and then a war and no wonder everyone is flipping out. Parasympathetic is the one we don’t hear about: the happy, relaxed one that likes stupid cat videos and laughter.

Without the sympathetic nervous system, we can survive. Without the parasympathetic, we die.

I have written about how we metabolize cholesterol, depending on whether we are in a sympathetic or parasympathetic state. When we are relaxed, or less stressed, we make more sex hormones and thyroid hormone. That is parasympathetic.

When we are in a crisis, or more stressed, we make more adrenaline and cortisol. That is in the sympathetic nervous system arousal state.

A pain conference I went to at Swedish Hospital took this a step further. They said that chronic pain and PTSD patients are in a high sympathetic nervous system state. The sympathetic nervous system is the fight or flight state. It’s great for emergencies: increases heart rate, dilates air passages in the lungs, dilates pupils, reduces gut mobility, increases blood glucose, and tightens the fascia in the muscles so that you can fight or run. But…. what if you are in a sympathetic nervous system state all the time? Fatigue, decreased sex drive, insomnia and agitated or anxious. And remember the tightened fascia? Muscle pain. The high cortisol level also is not good for the immune system, so we are more likely to get sick. High cortisol also raises blood sugar and the immune system is hyperalert. We are more likely to develop autoimmune disorders.

When we are relaxed, the parasympathetic system is in charge. Digesting food, resting, sexual arousal, salivation, lacrimation, urination, and defecation. So saliva, tears, urine, and bowel movements, not to mention digesting food and interest in sex. And muscles relax.

If the sympathetic nervous system is in overdrive, how do we shut it off? I had an interesting conversation with a person with PTSD , where he said that he finds that all his muscles are tight when he is watching television. He can consciously relax them.

“Do they stay relaxed?” I asked.

“I don’t know.” he replies, “but my normal is the hyperalert state.”

“Maybe the hyperalert state, the sympathetic state, is what you are used to, rather than being your normal.”

He sat and stared at me. A different idea….

So HOW do we switch over from the sympathetic to the parasympathetic state?

Swedish taught a breathing technique.

Twenty minutes. Six breaths per minute, either 5 seconds in and 5 seconds out, or 6 in and 4 out. Your preference. And they said that after 15 minutes, people switch from the sympathetic to the parasympathetic state.

Does this work for everyone? Is it always at 15 minutes? I don’t know yet. But now I am thinking hard about different ways to switch the sympathetic to parasympathetic.

Meditation.
Slow walking outside. No headphones! We need to listen to the birds and wind, watch the trees, really look at nature. All of the new sensory input relaxes us.
Rocking: a rocking chair or glider.
Breathing exercises: 5 seconds in and 5 seconds out. Work up to 20 minutes.
Massage: but not for people who fear being touched. One study of a one hour massage showed cortisol dropping by 50% on average in blood levels. That is huge.
Playing: (one site says especially with children and animals. But it also says we are intelligently designed).
Yoga, tai chi, and chi kung.
Whatever relaxes YOU: knitting, singing, working on cars, carving, puttering, soduku, jigsaw puzzles, word searches, making bean pictures or macaroni pictures, coloring, a purring cat, throwing a ball for a dog…..and I’ll bet the stupid pet photos and videos help too….

My patient took my diagrams and notes written on the exam table paper home. He is thinking about the parasympathetic state: about getting to know it and deliberately exploring it.

More ideas: http://www.wisebrain.org/ParasympatheticNS.pdf

within normal limits

I think doctoring makes one cynical. Or at least messes up the scale of normal.

Maybe there are Marcus Welby docs out there, but I don’t know any. Doctoring messes up one’s scale. A wound is compared to black horrifying gangrene to the knee, pain is compared to screaming delirium tremens or full thickness burns or heroin withdrawal, one in four adults can be diagnosed with a psychiatric disorder at some time in their life…. so then, what is normal?

What is normal for relationships? How many deeply happy marriages do you know? If half end in divorce, what are the odds?

Where is the line in love? Where is the line between loving the other person no matter what and wait, that is domestic violence. Where is the line for abuse? Do people agree on it?

No. They do not. What I think is behavior that is frightening may be normal behavior to my partner. Is it ok to drink until one is drunk? I don’t want to be around it. I saw enough of that shit at work. I deal with addiction daily. If someone wants to get drunk, they can choose to do that. But not around me. And no, I don’t want to date them. And if they are working themselves to death, is that ok? Well, I might be a tad hypersensitive to that, since I nearly managed that myself. So I don’t want to be around that either. That might be viewed as noble self-sacrifice. But at work, I see the caregiver die before the recipient of the care, all too often. Especially in older couples, where neither one wants to let anyone in the house to help….

….but then, some people do hear me. A woman thanked me last year for saying she should quit covering for her husband. She was afraid, but backed off. He is able to do more than she expected and he also is more respectful and kind to her. She thanked me and I got all shy and tongue-tied.

My definition of love is listening. Someone who listens and hears and lets me listen and hear. When each person can say what they are thinking and feeling and wanting and worried about…. because if only one person is speaking, if only one person is determining what the relationship is, it is not a relationship.

stranded mermaid, cilia and tubulin

I took this photograph last summer at North Beach. I thought she looks like a stranded mermaid, thrown up on shore. I couldn’t move her, she was twice my length. The rock attachment had come too, up from our sea beds.

Happy solstice. Today marks the one year day from when I realized that I was having my fourth round of pneumonia, with hypoxia, agitation, fast twitch muscle dysfuntion and felt sick as could be. I am way better but not well. That is, I still need oxygen to play flute, to sing, to do heavy exercise and to carry anything heavy. Which is WAY better then having to wear oxygen all the time. Today I find a connection between the lungs and the brain, in quanta magazine. This video talks about a new found connection between cilia and the brain. We were taught that cilia and flagella are for locomotion, powered by tubulin. However, this shows that cilia behave like neurons and there is a connection. Since my peculiar illness seems to involve cilia dysfunction in my muscles and lungs, so that I get pneumonia, and the brain, because I am wired when it hits, this is a fascinating connection. If neurons developed from cilia, the dual illness makes a lot more sense. Hooray for quantum mechanics! We use it in medicine every single day.

Happy solstice! Here comes the sun!

Stages of grief playlist

Stages of grief playlist

My sister had breast cancer for 7 years. She said that the five stages of grief missed two. She adds “Acting Out” and “Revenge”. I am planning a series of stages of grief playlists, because we are coming up on one million US citizens dead of Covid-19 and we are at six million world wide and counting. We need help grieving. I have other stuff going on to, so my go to is music.

Denial

Eagle Mountain String Band

Bargaining

Lake Street Dive: I want you back

Anger

Over the Rhine: oh yeah by the way

Acting out

Lily Allen: Smile

Revenge

Lily Allen: Fuck you

Grief

Citizen Cope: Sideways

Acceptance

Over the Rhine: All of My Favorite People

Microbiome Dating Service

You have been perfecting your health for years.

You know the antiaging regime and you follow it religiously.

You have read Jeffrey Bland. You have been tested for the mthfr mutation. You understand pandas. You have taken a functional medicine class and you’ve studied biochemistry in your local functional medicine group. You have reversed your autoimmune symptoms by a combination of the best from Dr. Ballantyne and Dr. Perlmutter. Your adrenal fatigue is gone. You have the pajamas that Dr. Oz says help most with sleep. You know your supplements backwards and forwards and have visited the clean green factories that make them.

You are healthy.

You are ready for the perfect relationship. But…. would you want to date someone who doesn’t take care of themselves? What if they don’t care? What if their bacteria invade YOU?

WELCOME TO THE MICROBIOME DATING SERVICE!

We will remove your fears and cares. All clients agree to a monthly detailed microbiome stool screen. You will date healthy people. If a screen fails, a client is notified and all dating partners are notified as well. Clients agree to EXCLUSIVE DATING with other healthy people, tested and monitored.

You are healthy. You want to stay that way. WELCOME TO THE MICROBIOME DATING SERVICE!

WE KEEP YOU SAFE.


http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?_r=1

first impressions

I am taking a writing class and our next book is on cultural appropriation.

This interests me. I tend to be a little gender blind and race blind when I meet people. I am using my super skill instead. My skill is developed from a really scary childhood: I read the stuffed emotions. The stuff people are hiding.

No way, you say. Oh, yes, I say.

My sister described coming home from high school and stopping when she walked into the house. She was trying to sense what was going on. Were our parents fighting? Was our father drunk? Yes, he was drunk, but which stage?

We talked about the stages and which we hated most.

Stage goofy/silly was annoying but not toxic. We said we had homework.

Stage asleep in a fetal ball in the upstairs hallway. My sister said she would step over him to get to her room.

Stage maudlin. We both agreed this was the worst. He would cry and say, “You can tell me anything.” Once he caught me in that stage and I was in tears by the time my mother got home. I left the room. The next morning mother said, “He said you two were discussing the cat’s disappearance.” I didn’t answer. We never said a word about the cat. I didn’t know if he was lying or was too drunk to remember it the next day, so made it up. Don’t care. Avoid.

He was never physically abusive. He and my mother would scream at each other at 1 or 2 am through most of high school. Reading her diaries, she writes that she drinks too much. I think they were both alcoholics, thought the family story is that he was the bad one. But I can’t imagine yelling with a drunk at 1 or 2 am for an hour. What is the point? They are drunk. So either she was drunk too or needed to fight.

Emotionally abusive, yes, both parents. My mother would take any show of fear or grief and tell it as a very very funny story to every person she ran into. Is it any surprise that I had to go into therapy after she died to learn to feel fear or grief? My sister would say, “She’s got her stone face on,” about me. Um, yeah, I am NOT going to let my family see my emotions…

Anyhow, that is what I read in people when I first meet them. It’s not the suit, the clothes, the make up, the race, the gender. I pretty much ignore those. I was fashion blind in junior high, a girl geek, could not read the code and did not care. I had given up on socializing with my fellow students. I was hopelessly bad at it. I did a lot better with the adults around my parents. I could have actual conversations with them.

I had one patient who was transgender where I couldn’t remember which direction. I didn’t care, either. That was a really angry person. Anger is always covering other emotions, so I avoided pronouns and tried to be as gentle as possible.

I complained to a counselor once that I can’t turn this “off”. And that it’s fine in clinic with patients, but it screws with my relationships with my peer doctors. They do not like it if I “read” them.

It took me years, but I finally realized that I have to use my clinic skills with everyone. I can’t turn off “reading” any more than you turn off your eyes when you meet a new person. But I can be as gentle with everyone as I am in clinic. I realized that as I started on a trip and the trip was amazing, everyone was so nice.

This reading is a product of a high ACE Score: Adverse Childhood Experiences. I score about a 5. One of my patients set off my ACE alarms on the first visit. I asked if he had had a rough childhood and gave a very short explanation of ACE scores. “Oh, I am a ten out of ten,” he said. He was, too. Ran away from home at age 6 or 8.

The ACE scores of all the children are rising from the last two years. The war will raise them even more, worse for the children there and the kids trying not to starve in Afganistan and Syria and world wide.

It will be interesting to read about cultural appropriation. But I don’t care much: I don’t “see” those things when I meet someone.

Hugs and blessings.

The photograph is me and my sister Chris in 1987, before my wedding. We were dancing before the wedding. She died in 2012 after 7 years of breast cancer.

Doctors and nurses and hospital staff are the last caregivers for the elderly alcoholics and addicts who are alone, whose families have finally cut them off. I think this song illustrates their pain. We try to take care of them.

Chaos

I wrote this poem a long time ago. I was thinking about how being a physician and taking care of other people let me avoid my own feelings. Doctors are trained to hide their feelings. When I was an intern, a patient died on my day off. I came back to find the person gone. No one on the team said anything. I was afraid I’d done something wrong. Was it my fault? Finally I screwed up my courage and spoke the the attending physician. “Oh!” he said, “I meant to talk to you about that patient. They had a lethal pulmonary embolus from the clot in their leg. They were appropriately anticoagulated. You did nothing wrong. This happens.”

I think the war is more of the same. Chaos, to avoid feeling. Let’s not do that. Let us grieve as a world. Let us not melt down in a conflagration. That is my prayer.

Chaos

So familiar

If there’s a mess And chaos
Home that’s home
Busy busy
Run around
Fire fire
Fix it
Crisis
Now what
Deal with it

No time for feelings

No no

No time

I don’t want chaos
Liar liar

Chaos is so safe

Hero hero
Put out the fire
Catch the baby
Confront
Not a hero really
Scared
Hiding

If I stop the chaos
I will have to feel



Maybe it’s ok
To feel a little

I forgive myself
I understand the chaos
I can let go of it      by degrees

I feel so vulnerable
In the quiet clean
     safe place
Take your time
sweet self

____________________________________

For the Ragtag Daily Prompt: WAR.

____________________________________

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/