In the box

Wednesday was interesting and frustrating and part was beautiful.

The beautiful part was arriving at the Kingston, Washington ferry dock early. I took photographs of the quite gorgeous light display while I waited for the 6:25 ferry.

On the other side, I drove to Swedish Hospital, Cherry Hill. There I had another set of pulmonary function tests. The technician was very good. She said that since I have a normal forced vital capacity it does not look like asthma. However, a ratio was at 64% of normal, which is related to small airways.

“Have you had allergy testing?” she asks, “And a methacholine challenge?”

“Yes,” I say. “Both. In 2014. No allergies at all and the methacholine was negative.”

“Hmmmm.” she says.

Afterwards we call pulmonary. I have an appointment on this next Wednesday but we call and ask if there is a cancellation and I can get seen today, since I am two hours from home already.

Yes, there is, but I have to hurry to Issaquah, Washington.

There is an accident on the I90 bridge, so I do not think I will make it. But I am there by ten and the pulmonologist will see me. I check in, fill out paperwork, wait, go in the room, a medical assistant asks questions.

The pulmonologist comes in. He is nice and is able to pull up the chest CT from 2012, two of them since the first one “couldn’t rule out cancer”. Since I am referred for hypoxia without a clear cause, he questions me about my heart. Echocardiogram, zio patch (2), bubble study, yeah, it has all been normal. I describe getting sick and tachycardic and hypoxic and coughing.

“Do you cough anything up?”

“No.”

“Do you cough now?”

“Yes, if I exercise or get tired.”

He is like many physician specialists that I have seen. He has a number of pulmonary diagnoses, or boxes. Emphysema, COPD, lung cancer, bronchiectasis, chronic bronchitis, the progressive muscular disorders. All of those are ruled out in the past. So he puts me in the asthma box.

“I thought asthma was ruled out with the methacholine.” I say.

“Well, you have SOMETHING going on in the lower airways, and it was present in the 2021 and the 2012 pulmonary function tests. Maybe an asthma medicine will help.”

I mention ME-CFS and my muscles not working right, but he only deals with lungs. He won’t say a word about those disorders.

Sigh. I do not get the improvement with albuterol that diagnoses asthma on the pfts and never have. The formal reading of the pfts is that I do not meet criteria for asthma but there is something in the lower airways.

Monsters, maybe? I’ll try the inhaler, though with skepticism. Antibodies seem like a better guess, but antibodies are outside this pulmonologist’s set of boxes.

________________________

The photograph is from Swedish, Cherry Hill, bird’s eye view from the balcony.

Methacholine test.

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!

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.

On meditation and breathing

In college at the University of Wisconsin, I dated a gentleman who was following the Zen Buddhist tradition.

He meditated daily, for forty minutes, facing a wall.

I was quite intrigued. I did not think I could do that. I am a fidgety person and can’t sit still. I promptly tried it.

Forty minutes is a long time facing a wall at age 19.

I would fall asleep. I would start tilting to one side or the other on my zafu and jerk back up. I knew I was not supposed to follow thoughts, but I couldn’t not think. It is more subtle than that: I slowly figured out that I can let the thoughts pop up from the toaster brain, but try not to follow them. Wave at the thought. Let it go.

One day there was a small hole in the wall when I faced it. A tiny spider came out and went back in. I was very happy about the spider.

The next day the spider came out and waved one leg at me. Then it went back in the hole. The end of the 40 minutes is signaled by a chime. I got suspicious afterwards and went back to the wall. Not only was there no spider, but there was no hole, either. I did not see any more holes or spiders.

I meditated regularly daily for two years. After that I would return to practice intermittently. Meditation trained my breathing: my breathing slows way down during meditation.

I use that breathing when I have pneumonia. In the worst episode, I was in the hospital and disbelieved. I slowed my breath way way down to calm myself and so that I could think. Eight counts in, eight counts out. Then ten, then twelve. I needed to focus and figure out what was causing sepsis symptoms. And I did figure it out. The provider sent me home that morning, septic and 6 liters behind on fluid, but I was able to survive.

Now the pain clinics are teaching slow breathing. Five seconds in and five seconds out. Start with a few minutes and work up to twenty minutes. “Almost everyone goes from high sympathetic nervous system fight or flight state to the parasympathetic relaxed nervous system state.” I think we need more of that, don’t you? This is being taught for anxiety, for chronic pain, for fear and depression. I asked a veteran to try it. His response: “I hate to admit it but it works.” Also, “I’m not used to being relaxed. It feels weird.” I laughed and said, “I think it might be good if you get used to it.” He reluctantly agreed and continued the practice.

Peace you, peace me.

Vape

First, the definition of vapor:

noun

  1. The gaseous state of a substance that is liquid or solid at room temperature.
  2. A faintly visible suspension of fine particles of matter in the air, as mist, fumes, or smoke.
  3. A mixture of fine droplets of a substance and air, as the fuel mixture of an internal-combustion engine.

So vaping is smoking. It can be called vaping, but that is to trick us into thinking that it is not smoking, that we are not sucking chemicals into our delicate lung tissue. We only have one set of lungs. Lungs are like a tree, either the roots or the leaf parts upside down. Air is drawn in by our muscles expanding the chest and diaphragm, down the trachea, the bronchi, the bronchioles and at last to the alveoli, where tiny veins wrap each alveoli, trading carbon dioxide for oxygen.

I think of smoking as every cigarrette distroying an alveolus.

Vaping too, vaping is smoking. The nicotine is suspended in a solution and the vaporizer heats up until it is in vapor form. I started reading about vaporizers at least a decade ago. There were over 500 different types, mostly made in China, and there are all sorts of solutions. I was horrified to read that ethylene glycol was one of the solutions that held nicotine. When a dog drinks antifreeze, ethylene glycol, it is poisonous to the brain. Does anyone think that we should inhale smoke with antifreeze and nicotine in it? Really?

There is no control of what is put in the solutions. We don’t know what they will do long term but we know that nicotine is addictive and damages the lungs. Some of the vaporizers get so hot that the metal is also vaporized. Heavy metals are clearly bad for the lungs and poisonous as well.

Here is an article from the U of Colorado Medical Center with further reasons NEVER to start vaping. Because vaping is smoking: don’t let the term fool YOU. 4 reasons why you should stop vaping.

For the RDP: vapor.

Surreal surroundings

It was so gorgeous up on Hurricane Ridge yesterday! I think the wildflowers are surreal: whole mountainsides of wildflowers and the more you look, the more different ones you see. I am just starting to learn their names.

https://www.nps.gov/olym/planyourvisit/visiting-hurricane-ridge.htm

For the Ragtag Daily Prompt: surreal.

I think the orange flower is a paintbrush, but it is not showing up here, on the wildflower identification site.

Another site: https://www.intangibility.com/inw/Wildflowers/Indian-Paintbrush.html

If anyone can identify it more closely, let me know!

Covid-19: Long Haul III

The CDC has guidelines for Long Covid and it can qualify for disability in the United States.

Here: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html

And here: “As of July 2021, “long COVID,” also known as post-COVID conditions, can be considered a disability under the Americans with Disabilities Act (ADA). Learn more: Guidance on “Long COVID” as a Disability Under the ADA, Section

Here is the list of “most common” symptoms from the CDC:

General symptoms

  • Tiredness or fatigue that interferes with daily life
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Fever

Respiratory and heart symptoms

  • Difficulty breathing or shortness of breath
  • Cough
  • Chest pain
  • Fast-beating or pounding heart (also known as heart palpitations)

Neurological symptoms

  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
  • Headache
  • Sleep problems
  • Dizziness when you stand up (lightheadedness)
  • Pins-and-needles feelings
  • Change in smell or taste
  • Depression or anxiety

Digestive symptoms

  • Diarrhea
  • Stomach pain

Other symptoms

  • Joint or muscle pain
  • Rash
  • Changes in menstrual cycles

There are recommendations for a work up by physicians. Depending on symptoms, this may include labs, ECG, echocardiogram (heart ultrasound), CT scan and other tests.

A friend has just gone through those four tests . They are “normal” except for her heart rate. At rest her heart rate is 70 with a normal oxygen level. Walking, her heart rate jumps to 135. Over 100 is abnormal in this athlete who is NOT exerting heavily.

So WHAT is going on with NORMAL testing? I think this is “Covid-19 Viral Pneumonia”, a complication of Covid-19, just as “Influenza Viral Pneumonia” is a complication of influenza. Ralph Netter MD has an illustration of lungs from a person who died of influenza viral pneumonia: the lungs are swollen and inflamed and bruised. WHY is the testing “normal” then? The swelling is throughout the lungs, so a chest x-ray sees it as all the same density and a CT scan also sees it as all the same density. The lungs may have mildly decreased breath sounds, but the sounds are even throughout the lungs. The useful TEST is a walk test. I have tested patients with “walking pneumonia” in clinic for years: get a resting heart rate and oxygen level. Then have my patient walk up and down the hall three times and sit back down. Watch the heart rate and oxygen level. If the heart rate jumps 30 beats up or is over 100, the person needs to continue rest until the heart rate stays under 100 or jumps less than 30 beats. It is important to observe the heart rate until they recover. Sometimes the oxygen saturation will drop as the heart rate comes down, and some people qualify for oxygen. Steroids do not seem to work for this. The length of time to healing is not totally surprising, because a lobar pneumonia that is visible on chest xray takes 6-8 weeks to fully clear. It is not too amazing that a bad walking pneumonia could also take 6 weeks or more to clear. If the person returns to work too soon, they prolong the lung inflammation and they are at risk for exhaustion and for a secondary pneumonia. The treatment is REST REST REST and support.

Do they need oxygen? Currently oxygen is covered only if the person’s oxygen saturation drops down to 88%. However, I think that oxygen would help recovery and make them less exhausted. With my first walking pneumonia, which was influenza, my walking heart rate was 135 and my resting heart rate was 100. Both were abnormal for me. Neither I nor my physician could figure it out. This was in 2003. I did look in my Netter book: I took one look at the painting of the influenza lungs and shut the book. “Oh.” I thought. “That’s why I can’t breathe.” The image is here, though I wish it were bigger.

It took two months for my heart rate to come down, the lung swelling to improve, and me to return to work. I read the text of Dr. Netter’s image a year later and then I read an entire book about the 1918-1919 influenza. Since then I have walked people who come in complaining of exhaustion after a “cold” or “bad cough”. Viruses can cause this and so can bacteria: mycoplasma pneumonia, chlamydia pneumonia, pneumococcal pneumonia, legionella and strep A. If the fever is gone, the infection has probably resolved, but it still can take days or weeks for the lung tissue to recover.

For Covid-19, I would add a third test: walking with weights. We test cardiac patients by asking if they can carry two bags of groceries up a flight of stairs. That is 3 Mets, a measure of the heart load. We need to measure the lung load as well. If the lung tissue is swollen, the amount of airspace is cut down and can be half normal. The heart attempts to take up the slack. The person may tolerate a heart rate of 135 for a while, but it is like running a marathon. If they are older or have heart disease, this can trigger a heart attack. I would walk the person carrying hand weights, and see the recovery.

Also, brain fog is unsurprising. If your oxygen level is borderline, it is darn hard to think. I write really strange songs when I am hypoxic. I get goofy and feel weird. The fast heart rate also feels like anxiety: I think that the body is trying to tell me to rest.

The definition of Long Covid is symptoms after 30 days. Please see your physician if you are still ill and continue to have symptoms.

Blessings.

Here is a recent article about T-cells and inflammation in the lungs of Covid-19 patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8460308/

and this: https://www.frontiersin.org/articles/10.3389/fimmu.2020.589380/full

peace me

peace me, loves
peace me, strangers
peace me, Beloved
free us from dangers

peace as a river
peace as a wave
peace as a verb
peace saves

peace my heart
peace all of ours
peace all the friends
peace the wars

peace a gift
peace a joy
peace fearless always
no war toys

peace apparent
peace dove
peace triumphant
peace love

peace me, loves
peace me, strangers
peace me, Beloved
free us from danger

I kept the paper cup in the picture, because the cup is animals and plants, but the cup also is a pair of lungs. Breathe peace. And breathe for all the people recovering from covid-19, short haul and long haul. And breathe love and shelter and support to all those grieving for our dead and let us grieve too.

For the Ragtag Daily Prompt: apparent. And for peace.