pulmonary rehabilitation

I am fractious and grumpy when I first go to pulmonary rehabilitation at my local hospital.

This is because I have local hospital PTSD because of past treatment. However, there is only one hospital in my county.

I am anxious and tachycardic when I first arrive. I have sent patients to cardiac rehabilitation and to pulmonary rehabilitation, but it’s the first time I’ve gone. My doctor did not refer me until I ask her. I thought it up while I was talking to my insurance company’s chronic care person. You know you are desperate when you call your insurance company for ideas. The insurance company is motivated to pay for pulmonary rehabilitation because I am expensive. I have had loads of tests this year and cost a bunch of money. They would like me well. Me too. So yes, I qualify for pulmonary rehab by virtue of four pneumonias in nineteen years and this time a year on oxygen continuously and still part time now.

I have two people to help me. One is a respiratory therapist and the other a physical therapist. I am an unusual referral. Many of their patients have chronic obstructive pulmonary disease and/or emphysema, usually from cigaretes, but also from things like asbestos or alpha-1-antitrypsin disorder or progressive muscular disorders.

They explain. There are 24 visits, over 12 weeks. I come in twice a week. I am weighed, they ask about symptoms, and we go to the small gym. It has three treadmills, three stationary bikes and three of those semi-horizontal not really a bike things. I pick the treadmill. After I describe my lung weirdness, that a fast heart rate preceeds hypoxia, they put a wrist pulse oximeter on me. Unlike the little finger ones, it can pick up heart rate and oxygen rate even when I am walking on the treadmill. My blood pressure and pulse is checked and I start the treadmill. I go slowly the first time. My heartrate is over 100 to start with, but that’s partly the PTSD reaction. I can slow my heart rate just by slowing my breathing and not talking, into the 80s.

Here is how I looked the first time:

https://www.reddit.com/r/FunnyAnimals/comments/zadptv/this_is_whats_happened_in_gym/

Ok, not really. I start walking on the treadmill and go for 30 minutes. Blood pressure and heart rate are checked mid way through. The only time I drop my oxygen level is when I walk AND talk and then I drop it to 87. I stop talking.

After the treadmill, there is another 15-20 minutes of “patient education” about the lungs. This is usually a video, discussion and handouts. They can have up to 3 people simultaneously. At first there is another woman, but she finishes her 12 weeks. She is still on oxygen. I am doing the treadmill without oxygen. “What is your goal?” asks the respiratory therapist. “I want to ski this winter.” I say. She blinks.

The patient education alternates with lifting hand weights. The physical therapist does that with me. There is a stretching session each time too. The weights are slow twitch muscles so that is easier for me to push.

On the third day on the treadmill, I start pushing myself. My heart rate before starting was 81. I get to 120. “Um, don’t push it further than that.” says the therapist.

“Why not?” I say.

“Well, the guidelines are that we’re supposed to not have the person exercising at a heart rate of more than 30 over their baseline.”

“Oh,” I say. I am at 40 over. I slow down a little, aiming for a heart rate of 115. My blood pressure is between 90 and 115 systolic to start with, even anxious, and goes up to the 140s or 150s in the middle of exercising. If I talk too much while I am on the treadmill, my oxygen level starts to drop. It drops the third time down below 88 and the therapist says, “Shall I get oxygen?” “No,” I say. “I just need to shut up.” I do and my oxygen level recovers.

I steadily improve on the treadmill. I can enter my weight and it will measure “METS”. I start out at only a few mets. My goal is as high as I can go. By week 8 I am pleased to be alternating walking and running and I am averaging over 8 mets. Bicycling takes 7-9 mets, and more if you race. I want to return to bicycling.

Then I get my flu vaccine. I feel terrible the next day and cancel my rehab. I see my doctor for a routine visit the next Tuesday and she gives me the covid booster. That hammers me. I go back to being tachycardic much more easily and my fast twitch muscles are not working again. I contact my cardiologist and primary, do I put pulmonary rehabilitation on hold?

I decide to go and I do not drop my oxygen. However, I get tachycardic much more quickly, I can’t get up to over 8 mets, and it feels truly terrible. And my muscles give me hell and hurt horribly for the next two days. I put pulmonary rehab on hold and wait and do slow twitch exercises. The working theory is that there are antibodies to my fast twitch muscles, so the vaccines have activated my immune system. Not just antibodies to influenza and covid, but also the ones that make my muscles not work and hurt. A fibromyalgia/chronic fatigue flare. I start sleeping 12 hours a day again, as I did when I got sick over a year ago. I am really anxious at first but there are no signs of pneumonia, I am not hypoxic, and it’s mostly muscles and fatigue.

After three weeks I return and do my last four pulmonary rehab visits. It hurts way more than the first 8 weeks and it is way more exhausting. I don’t like sleeping 12 hours a night. It could be worse, though. Some people have chronic fatigue where they have to lie in bed most of the time. I don’t have that, so I consider myself lucky. Mine is fast twitch muscles only. Presumably theirs is fast and slow twitch muscles. I have an annoying but relatively mild version of chronic fatigue.

I graduate from pulmonary rehabilitation. Many thanks for the help with my muscles! I want a wrist pulse oximeter, but they cost $700 and I dont’ really need it. By now I can tell when I have a fast heart rate and I can tell when I am getting hypoxic. It makes me goofy and silly, though I normally have that anyhow.

Many thanks to Jefferson Healthcare’s Pulmonary Rehabilitation Department. And if you have had pneumonia more than once or long Covid, consider asking your doctor to refer you. It makes me much more confident about exercising and pushing myself and what is safe. And eventually these stupid antibodies will fall off the receptors again. I hope.

________________

For the Ragtag Daily Prompt: fractious.

PS: The Rehabilitation Department was closed then open then closed then open during the last two years. They did not have many people when I was there. Get in soon, because there are limited spaces!

In the dark

I choose to dwell in the dark with the monsters.

I came here because I wanted to understand how people could be monsters. People turn in to monsters sometimes. Not the crazy people or the serial killers: just normal people. They have enormous fights in their families. They get drunk or use drugs. They kill themselves with cigarettes. They sit unmoving in front of the television. They fight family or close friends. Families sue each other over the parent’s will. They fight over the stuff or over mother or over who will take care of father. They disown each other. They say β€œI only let nice people in my life.” That leaves me out. And I don’t want anything to do with anyone who says that. That is monstrous. Do they turn the other cheek? Do they love their neighbor as themselves? No. They are monsters.

I kept studying the monsters and studying them, until I found my own. I rescued mine from a deep hole. The monsters were babies. They were filthy and frightened and crying and abandoned. I washed them and diapered them and fed them and wrapped them in blankets. They stared at me, sullen. They had no idea how to respond to being cared for. I had to learn to love them. I loved them right away, even though they were monsters. I cared for them and they grew up, loved, happy, adults.

And then I see the monsters in other people. People hide their monsters, stuff them in dungeons, neglect them, deny them, scream at them. The monsters realize that I can see them and they start crying. β€œHelp us! Please! Let us out! We are cold! We are hungry! We are neglected!” I learn not to talk to the monsters until the person is gone. The person may never talk to me again if I acknowledge the monster. They think I am the monster. I’ve reminded them of theirs or named them! Most people hate it. I learn, slowly and painfully, that I can only talk to the monsters after their people leave. The monsters hang around. They tell me their stories. They tell me their misery. I hold them while they cry, heads in my lap, howling and breaking things. But eventually they have to return to their person, to their jail, to their suffering.

I like the monsters better than the people. Some people wear the monsters on the outside. Veterans, almost always. To keep people away. They come to clinic and try to scare me. This is very very difficult because I like the monsters. I am delighted to meet the monsters. This is startling and the veteran promptly calms down. I am not afraid. I like the people who wear their monsters on the outside: they are not hiding them. It’s the ones who hide and abuse and torture their monsters: I do not trust those people. And I feel huge grief and sorrow, pity for their monsters. I can’t fix them. The people must each turn to their own monsters. Let them come to consciousness. Face them, comfort them and at last, love them. And this is hard. It is very hard. It is a life time of work. It is emotional maturity. It has nothing to do with educational level. It is hard work worth doing.

I choose to dwell in the dark with the monsters. Because they need me most of all.

Blessings.

cliffs down

I took a wonderful beach walk, 3-4 miles, yesterday.

The annoying thing was that my muscles are still grumpy. I took a nap afterwards and they STILL wanted me to go to sleep at 5 pm. I made it to 6, barely.

That was the pattern I noticed when I was finishing pulmonary rehab. On the exercise days and the day after, I would sleep for twelve hours. I would have a nap and then sleep for another 8-10 hours at night. Muscle repair and ME-CFS, but still, mine is mild. I don’t have to lie in bed 23 hours a day. I am very very happy about that.

That is a tree, dead, in the first picture. Sections of cliff collapse. I always worry that I will see feet sticking out, as in the Wizard of Oz. A friend saw a whole section come down and said if he’d been 30 yards further down the beach, he would have been under it. It is sand and clay. Here is a close up of a small chunk of clay.

Here is a big section that has fallen, trees and all.

And here is a tree only part way down. I am careful on the beach, but I think sections can fall with no warning! And I worry when I see children or adults climbing partway up the cliffs. Not me.

Blessed

You needn’t worry that I will importune you.
Words explode and swirl upon the page.
It’s more likely that I’ll say blankly “Who?”
Since I enlarge upon a fascinating stage.
Approaching two years since I was taken sick,
on oxygen I wrote a poem of farewell.
Career ending injury: nature can be such a dick.
Breathing is important. Absent it is hell.
I am still healing. I hope that I can ski.
I am lucky that my fatigue is relatively mild.
My oxygen can go 9000 feet up where I’ll see
muscle dysfunction truly makes me wild.
Friends and family gather close and gather far
I feel blessed beneath a lucky star.

________________

Sonnet #2 for the Ragtag Daily Prompt: sonnet.