Long Covid and fatigue

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 indoors and knitting socks .

My mom loved me

I struggled after my mother died of ovarian cancer in 2000. She was 61 and our love was complicated. Two years after she died I hit an emotional wall and had to go find help. My marriage was showing cracks too. I have written about Adverse Childhood Experiences, but there can be love too, even in a difficult household. I wrote this poem during that time.

My mom loved me

It’s herself she didn’t love
She didn’t love her anger
She didn’t love her fear
She didn’t love her sorrow
She didn’t love her shadows

She packed all her troubles in her saddlebags
and rode forth singing

When I was angry
she felt her anger
When I was scared
she felt her fear
When I was sad
she felt her sorrow
When I felt my shadows
she felt hers
I hid my shadows

I hid my shadows for many years
and then my saddlebags were full
They called me

I dove in the sea
I rescued my anger
I rescued my fear
I rescued my sorrows
I rescued my shadows

At first I couldn’t love them
My mom didn’t; how could I?

But I loved my mom
I loved all of her
Her anger
Her fear
Her sorrow
Her shadows
Her singing and courage

I thought if I could love her shadows
I could love my own

It was hard
It took months
I looked in the mirror at my own face
And slowly I was able to have
Compassion for myself

I am sad that my mom is not
where I can touch her warmth
and tell her I love all of her

I tell her anyway

I’m finding many things as I surface from my dive
Sometimes I feel the presence of angels
I was looking for something else
I found a valentine
that she made me
No date
Many hearts cut out and glued
to red paper

I am so surprised

My mom loves me
shadows and all
now and forever.

__________________________

My mother used to quote “Pack all your troubles in your saddlebags and ride forth singing.” Does anyone know where this if from? I have not found the source. It could be her mother or her mother’s parents.

The photograph is my father, the year my sister died of cancer, 2012. He died in 2013.

stone

stone shaped heart
refuse to love me
refuse to let me in

I don’t try to change you
I am here to change me
not you

not to bury or change or rewrite my past
but to unearth past feelings
to examine them without prejudice or fear

to hold them with love and care
so that they don’t inform the present
so that my feelings are now and not mixed with past

I listen to what you say
I am here with you to learn
what are you saying to me?

you say you are always truthful
but you break laws
you smoke some stuff, legal now

you say you do not speed
sometimes you do not speed
sometimes you do

you say you never watch series
when I suggest a series
now you tell me you are watching a series

you say you never try to hurt me
mostly you never try to hurt me
except when you do

you say you never lie
you seem to believe what you say
I don’t

I try to pay attention to what I say
I try not to say never
I try not to lie to myself

I watch you and wonder
what lies do I tell over and over
to myself and others?

_______________________

Written 6/22/22

below the surface

I swim frantic
I am trying to escape
your beak piercing
my tender flesh
my heart pulsing
blood and death

For the Ragtag Daily Prompt: pierce.

Taken yesterday morning at sunrise. The sunrise is affected by the fires, so a beautiful but ominous fire sky.

Agatize

A long time ago, at least by a child’s time, he starts turning. He blocks things out. He locks his heart. He decides to be happy and do what he wants. His heart slowly turns to stone.

The blood roars through, pushed by each beat, how can a stone heart beat? Not normally, that is for sure. His brain controls it, cold, logical, no emotion, except happiness, that is what he says. He says it over and over, I am happy all the time, until he thinks he believes it. And then he believes it and his heart is stone.

But the blood flows and the body feels and emotions come anyhow. He refuse them, all but happiness, and blood lays down a wall of emotion inside his heart. Chalcedony, lining the chambers, coating the valves, coating the arteries that feed the heart. The heart doesn’t need the arteries open because it is not beating. It is stone. His brain is beating. Beating the emotions away, away, away, refusing the body and the heart.

The heart is hollow. Slowly it is lined with clear agate. At last his heart is full: no more chamber. Agatized, all the way through. When he is cracked open, far in the future, a chalcedony nodule will show the perfect interior of a stone heart.

And where does the blood go now? we wonder. Laying down the lining of agate, clear, colored lines of emotions rejected, all the colors of the rainbow, what he thinks of as impurities. That is how he thinks of his emotions: impurities, to be rejected.

What will be agatized next? His liver? His lungs? He says strokes are the end for his family. He calls it then, his brain is agatized. The part that controls the pumping, overriding his heart over and over, when that part turns to agate, he will be correct. A stroke. How long will it take, we wonder? One year, five years, ten? He says he won’t go past 80. That will be 13 years. How apropos.

Can nothing stop this? Chalcedony is hard, not hard as diamonds, but very very hard. Agates are common and we search for the clear ones, the lit ones on the beach. Almost nothing can wear them down: high pressure would kill him, high heat would kill him, what is left? Water. Water wears down rock.

Enter the sea. The sea of love, the sea of dreams, the sea of the unconscious. Seek help, before you turn yourself to full stone. Agatized and dead.

Maybe there are other treatments, I don’t know.

A stone shaped heart is rare, I hope. See how it catches the light. Beautiful and sad.

August 30, 2022

sorrow

Most of the time I am fine (I miss you I miss you I miss you).
I am busy during the day (You said I needed my own life).
What shut you down, I wonder (the family event).
You said I always try to learn daily (you say you refuse to change).
I have friends that love me and my kids (you say you do not love me).
I don’t think I know what love is (your actions felt like love sometimes).
Mostly I don’t think about you (sometimes it is very dark).
I hope that you are well (I wish I wanted you to be happy without me).
I am patching my heart again (for you I use elk sinew).
The deer remind me (life goes on, even when one doesn’t want it to).

A previous poem, when my sister died: The deer remind me.

Friends and illness

The good thing about getting deathly ill is that you find out who your friends are. They stay by you. Even if you are misdiagnosed, labelled, ignored.

It is harder to ignore me now that I am on oxygen. It is difficult to chalk oxygen up to a rumored behavioral health diagnosis. When you have pneumonia and are confused, that is called delirium, not mania.

The bad thing about being deathly ill is that you find out who is NOT a friend. They disappear like rats leaving a sinking ship. Actually I like rats better.

I have one person who says, “I like you well, not sick.” Um, I would rather stay well too. But having seen fully 20 specialists, including four pulmonologists since 2012, a cure seems unlikely, doesn’t it? Meanwhile I seem to be getting stronger in pulmonary rehabilitation. Treadmill, classes about the lungs, stretching and weights.

Another person states, “if you get sick again, I am gone for four months.” Not a friend, right? Not a true friend and never ever will be. They do not understand friendship.

A true friend shows up at my house in 2012. I am lying on my bed using my father’s oxygen. She glares at me. “YOU are coming to MY house.” My reply: “OK.” I survive, even when the hospital sends me home with strep A pneumonia and delirium. Helps to be a physician, though I had to just trust myself, even delirious. The true friends help save me. I can’t even say how grateful I am.

I have a new friend. She is ill. It is progressive. Her husband seems so surprised that I come to see her. But I know how terribly lonely it is to be abandoned when you are ill. I have been there four times.

Blessings on the true friends.

Here is my sister’s blog. I remembered this post as “caged”, but her word is “trapped”.

https://e2grundoon.blogspot.com/2010/12/

My sister died of breast cancer in 2012.

Over The Rhine – The Laugh of Recognition

beach finds

On my journey in March, I bought a small light box. I thought it would be wonderful for lighting up the clear chalcedony that we search for on the beaches here, and it is! I found nearly all of these, except for the very round very large one on the left. A friend gave me that one. It reminds me of the “Venus figurines”, carved between 25,000 and 15,000 BC.

Here is one of beaches where we search:

Just a few rocks on the beach.

Here is a find (taken by my friend):

Chalcedony pebble lit among other pebbles.

They light up when the sun is out!

Venus figurines: https://www.dkfindout.com/us/history/stone-age/stone-age-carvings/ and https://en.wikipedia.org/wiki/Venus_figurine

For the Ragtag Daily Prompt: chalcedony.