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.

The happiest day of his life

When I was a preteen, I got my first Spiderman comic book. I was enthralled. A hero who had powers, but had a grandmother, responsibilities, made mistakes, felt guilt and confusion. I wanted this, not the princess crap. I did not want a prince to ride in and carry me off. I did not and don’t trust princes. The wedding being the happiest day of a woman’s life: what the hell? Is it the happiest day of the man’s life? If not why not? It’s important to the woman to be married to her love but not the man?

And anyhow, the Disney movies were very consistent. There were no good Disney Queens. The good ones died in childbirth, or were absent, or their ship went down. The stepmothers were evil. The princess career ended with marriage. Pregnancy either kills you or turns you evil. Actually, sex turns you evil if you are a female. That was the very clear Disney message judging by the animated features. Virgin girls are pure princesses but there are no adult female role models for years and years and years. By my preteens I wanted to drive my own wagon: I was not going to be taken care of, controlled, or left poor and with small children through divorce. I would have a career and children.

What IS the happiest day of a man’s life? Do we have any map of that? When they are promoted? When they buy twitter? When they are elected President? When they get married? Why do we have a happiest day for women (and is it the marriage or the sex?) but not for men?

In the romance novels, the man is usually older, “experienced”, rich, and has a reputation for seducing women. The woman is often a virgin, or she has a child because there was an evil man who she thought loved her, or the older man got her pregnant and she never told him. She knows it is true love because she is pure and yet is overcome by lust, so it must be true love. Snort. I have always thought this is stupid and silly. So men in the novels are experienced, have sex with lots of women, and then are carried away by lust that turns out to be true love with this woman? What about all the others? Did they think it was true love too? Or were they “bad” women, who had lust without true love? Impure, not virgins, not a “good” girl. Seems pretty confusing to me. Often the virgin gets pregnant because, hey, she is carried away by uncontrollable love, so of course she would not think about birth control. What is the experienced man thinking? Hey, let’s get this one pregnant, I’d like to pay child support? Oh, he’s carried away by uncontrollable love, but really now, you’d think after all that experience that he would use birth control. Apparently the rich experienced older seducer males are all morons when struck in the heart by true love. These books should be burned, really.

Anyhow, I was suspicious of the princess story and I wanted my own horse and armor and sword and I’ll fight my own dragons, thank you! I was much more interested in the super hero story, even though the superheroines were still pretty lame and likely to get killed off. Oh, and girlfriends get killed off. Gwen dying from fear during a fall: give me a break. Yuk. Made me glad she was dead if she was that much of a weakling. At least she couldn’t reproduce. I liked Mary Jane a whole lot more: feisty.

I wanted to be a superhero and still human, not a princess.

So what is the happiest day of a man’s life?

_____

The cat is Boa, not Sol Duc. Boa died at age 17 right before Covid-19 started.

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.

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 .

Red sun

This is a sunrise, not a sunset, two days ago on Marrowstone Island. The air quality was deteriorating and I am mostly staying indoors today. We are at high particulate matter and high fine particulate matter, coming from the fires to the east. The recommendation is to mask outside, keep windows closed, use an air filter and mask outside. Also to not exercise heavily outside.

It looks sunny out now, but the air looks wrong. Dirty. My lungs don’t like it at all, not surprisingly. I hope people are taking care of themselves. Stay in, take it easy, mask. Our air is supposed to improve tomorrow.

Blessings and peace you.

Real time air quality map here.

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.

Covid-19 and walking pneumonia

I wrote this essay in July 2017. Before Covid-19. It is clear that Covid-19 is also causing a walking pneumonia. People are exhausted when they get out of bed. No fever, they may not cough much, but if they get up, they can feel exhausted. The key to this is the heart rate, the pulse. If the pulse jumps 30 points faster or more, this implies lung swelling and reduced lung capacity. Right now, the only treatment we have is rest and time to heal. I should know, I’ve had really bad walking pneumonia four times: the first two times I was out for two months. The third time 6 months with 6 more months half days and chronic fatigue. The fourth time put me on oxygen.

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. I will write more about that in the next essay.

From 2017: Walking pneumonia is changing.

The classic bugs are four “atypical bacteria”:

mycoplasma pneumonia
chlamydia pneumonia (this is not the STD chlamydia. Different one.)
legionella
pertussis (whooping cough)

However, streptococcus pneumonia can also be a walking pneumonia OR a lobar pneumonia. In a lobar pneumonia the person usually is short of breath, running a fever of 102-104, and they point to where it is: hurts in the right upper chest. On chest x-ray there will be consolidation: whited out from fluid or swelling instead of nice ribs and dark air. They are often tachycardic and hypoxic.

In walking pneumonia the person often has no or minimal fever, they just feel tired or short of breath when they do things, and the chest xray can be “clear”. It isn’t really “normal”, it’s just that the bacteria or virus affects the entire lungs and causes some swelling throughout and doesn’t white it out.

“Double” pneumonia is when the chest film is whiting out on both sides. We also see the lungs whiting out with ARDS — acute respiratory distress syndrome. So after trauma in a car wreck and lots of broken ribs, the lungs can be bruised too and white out. Ow. Influenza virus can cause lung swelling and in the 1917-1918 flu infected military recruits lungs were swelling shut. They would turn blue and die.

“My” strep that I’ve had pneumonia with twice is streptococcus A, not strep pneumonia. It causes strep throat mostly though it can invade and cause sepsis or pneumonia or cellulitis. There are currently 4000+ known strains of strep A, and some are resistant to antibiotics or can cause kidney damage or do all sorts of nasty things. I think that “my” strep is resistant to azithromycin.

The current guidelines say to treat walking pneumonia with azithromycin. However, a paper came out this year saying that resistance to azithromycin is rising among streptococcus pneumonia and that nearly 50% of strains tested were resistant. Uh-oh. That means that azithomycin doesn’t work and the person can get sicker and may die. I talked to a pulmonologist in Seattle when I needed help with someone. He said that he would have said there weren’t any resistant strep pneumo strains here in Washington except that he had one intubated and in the ICU right then. “I’m convinced now, ” he said.

A lobar pneumonia is easier to diagnose. Abnormal chest x-ray, reasonably healthy people run a high white blood cell count (so my frail folks, immunosupressed folks and 90 year olds don’t raise their white blood cell count), and a fever (ditto) and look sick. The walking pneumonia people come in saying they have been coughing for 3 weeks or 4 weeks or two months. I am doing more lab testing because of the resistance.

This winter I have seen 6 different causes of walking pneumonia here: influenza A, respiratory syncytial virus (In more than one person over 60. That is NOT who the books say it should affect. It’s supposed to mostly cause bronchiolitis in babies and preemies), pertussis, strep pneumococcus, strep A and none of the above. All looking pretty much the same, but with different treatment.

https://wwwnc.cdc.gov/eid/article/15/8/08-1187_article
https://www.cdc.gov/pneumonia/atypical/mycoplasma/index.html
http://www.medscape.com/viewarticle/820736
https://www.cdc.gov/drugresistance/threat-report-2013/pdf/ar-threats-2013-508.pdf#page=79
RSV: http://kidshealth.org/en/parents/rsv.html
Mycoplasma resistance to azithromycin has been reported too: http://erj.ersjournals.com/content/36/4/969

kooky klothes

I took this May 31, 2022. I was still pretty sick with pneumonia and needed oxygen to do practically anything. I had dropped ten pounds the first week of being sick, March 20th. In 2014 it was six months before I could return to work and then only part time and exhausted. So I knew I was likely to be in for a six month haul. I hadn’t figured on needing oxygen, but it made me feel so much better and be able to think again!

Anyhow, I was entertaining myself by going through my closet and putting on things that I did not wear to work. I like the sun lighting up my legs in this photograph. The dress is shorter than it looks and the jacket has tags in Japanese and is a soft woven silk. I thrift shop by feel, because silk and mohair and cashmere and wool and cotton feel so wonderful.

Later the same day, I took this photograph:

I would wear out very quickly during the day. Today it is pouring here and last summer by now it was much much warmer! The sun made my lungs hurt less.

For the Ragtag Daily Prompt: kooky.

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.