betrayed by my own brain

I took a very long nap after pulmonary rehab yesterday, pushed myself on the treadmill. I was tired. So then at midnight I can’t sleep, feel sad and sappy, get up, write Sorrow.

Then my own brain starts making fun of me.

It plays a soundtrack:

Yeah, ok, so my OWN BRAIN is making fun of me feeling heartbroken. Ok, ok, I am over it for this night. Let’s move on, I think I will manifest this instead. Yeah. I need a skintight dress and some heavy makeup, so there.

The header photograph is from Centrum’s Blues Fest on Saturday. Fabulous and fun!

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.

speaking up

A friend says he does whatever he wants. He refuses to answer questions about how he makes his money. He doesn’t care if this annoys people. I suspect he may enjoy it.

I have one of those public jobs. Well, had. I have now been disabled from Family Medicine for a year. My lungs are much better than a year ago but they are not normal. And I have now seen 17 specialists and 3 primary care doctors since 2012. The consensus is “We don’t know.” Though many specialists are not willing to say that. What they say instead is, MY testing is NORMAL, go to someone else. My lungs are not normal, but I am on my fourth pulmonologist. I saw a cardiologist this year and the first thing he says is, “It’s your lungs, not your heart.” Well, yeah, I know that.

I miss my patients, but there is something freeing about not working. Ok, more money would be nice, but I am doing ok. Meanwhile, I am thinking about what to do now. I can write full time. Write, make music, travel (on a budget) and sing. And speak up.

Doctors have interesting portrayals on television. We went from Dr. Kildare to Dr. House, working our way through the shows with an emergency room and medical residents. ER drove me nuts. No one EVER dictated a chart so at the end of each show I hyperventilated at the hours of paperwork/computer/dictating they had left. House interests me because it’s always the thing that the patient is hiding or lying about that is the key. “Go search his apartment.” says House. I have figured out cases by getting permission to call family or a group home. More than once.

But a physician is a public figure. I had been here for less than a year when a woman comes up to me in the grocery store and says “What are my lab results?” I look at her blankly. I can’t remember if I really did the snappy comeback that comes to mind: “Take off your clothes and I will see if I remember.” I respond politely and she says, “Oh. I should call the office, right?” “Yes, I try to leave the work there,” I say. If a particularly difficult person was bearing down on me, I would whisper “cry” to my kids. That worked. They would act out on cue and I would be the harassed mother. The person would back off.

I am in a small town. We have three grocery stores. I see patients everywhere, now that it has been 22 years. If I remember every detail, that means they are or were really sick. And we have the layers of relationships: someone might have kids the same age or work with boats or be in chorus with me. Once I take my daughter to a party. The mom introduces me to two other mothers. “She’s my doctor,” says the introducing mom. “Well, me too.” says the second. “And me,” says the third. We all laugh.

Once I am visiting my brother outlaw’s bicycle shop. He has a customer. The customer starts talking to me too. Brother outlaw says, “Do you two know each other?” The customer eyes me. I have my neutral doc face on. “She’s seen me NAKED!” says the customer and I howl with laughter. What a great reply. And my brother outlaw gets it.

Docs have to pay attention to HIPAA. When three women say that I am their doctor, I reply, “Yeah and I left my brain at work, so I can’t remember a thing.” Those three were healthy, so I really do not remember labs or the results of a pap smear. Once I was in cut off shorts and waved at an older woman who was at the ophthalmologist’s. She sniffs and looks away. I get the giggles: I think she did not recognize me. My town is only 10,000 people, so after 22 years I have taken care of many of them. Though sometimes people thank me for taking care of their mother, and after it sounds unfamiliar I ask if they mean Dr. Parkman? Oh. Yes. People get me mixed up with two other small Caucasian woman doctors.

I started the “outfits inappropriate for work” category last year when I was still very sick and short of breath and on oxygen. I did not go out much, partly to avoid covid. My pneumonia was something other than covid and it was my fourth pneumonia and I should not need oxygen. Now I’ve had mild covid and the oxygen is only part time. I sang at my son’s wedding, off oxygen, so I can sing off oxygen for a short time. I danced off oxygen too and did get QUITE short of breath. Since I am no longer a public figure, I can speak out and speak up more. I am thinking about that, particularly with the recent Supreme Court news. I do not agree with what they seem to be planning.

organize

I am ready to organize my house.

I thought for years that I am NOT capable of organizing a house.

It turns out that I never had time to organize my house. I was a single mother family physician doing rural medicine including obstetrics and frequently on call, and then I opened my own business.

So organizing the house was way down the list of priorities.

I’ve been home now since March 20, 2020. I am starting to really recover from the pneumonia and muscle dysfunction. So now I am organizing once again.

I need a work room, other than the computer room. I set one up upstairs, but in this 1930s house, the upstairs room is too cold. It is great for sleeping but not for a prolonged time working on a project. So I am eyeing my spaces. I could use the front room which is currently the invasion from my clinic. However, I love having the front windows right there when I am on the computer. The cats have a chair there too and keep me company.

I am eyeing rooms in the basement. There is baseboard electric in three rooms. It means moving things around, but that is not difficult. It may take me a little while, but I will get it done.

I am ready to organize it.

____________________

For the Ragtag Daily Prompt: READY!

Covid-19: Long Haul

https://www.bbc.com/news/av/world-us-canada-58918869 Some people with Long Haul Covid-19 are having to relearn how to walk and talk.

https://www.bbc.com/news/uk-england-leicestershire-59674203. Patients who were hospitalized are still affected at 5 months and one year after they are released from the hospital. Being female and obese are big risk factors. The article says “Long Covid has the potential to become highly prevalent as a new long-term condition.”

One more:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8146298/ ” While the precise definition of long COVID may be lacking, the most common symptoms reported in many studies are fatigue and dyspnoea that last for months after acute COVID-19. Other persistent symptoms may include cognitive and mental impairments, chest and joint pains, palpitations, myalgia, smell and taste dysfunctions, cough, headache, and gastrointestinal and cardiac issues.”
“One puzzling feature of long COVID is that it affects survivors of COVID-19 at all disease severity. Studies have discovered that long COVID affects even mild-to-moderate cases and younger adults who did not require respiratory support or hospital or intensive care. Patients who were no longer positive for SARS-CoV-2 and discharged from the hospital, as well as outpatients, can also develop long COVID [24,30,31,41,50]. More concerningly, long COVID also targets children, including those who had asymptomatic COVID-19, resulting in symptoms such as dyspnoea, fatigue, myalgia, cognitive impairments, headache, palpitations, and chest pain that last for at least 6 months [51–53].”

And the symptoms? “The most common ongoing symptoms were fatigue, muscle pain, physically slowing down, poor sleep and breathlessness.”

Yes, the same as mine.

My initial evaluation of Long Haul Covid-19 patients will cover three areas:

1. Behavioral Health. Are they having brain fog, feeling slowed, feeling like they can’t think? Is that what happened during the Covid-19 or did the opposite happen? Were they manic/ADHD/OCD etc? What happened in the weeks leading up to getting sick? Any major worries or life trauma? Lose a job, a relationship, someone in the family die? I am looking for a dopamine antibody pattern.

2. Musculoskeletal Chronic Fatigue. What muscles work and which muscles don’t work? If they need to lie in bed for 20 hours a day, both slow and fast twitch muscles are affected. If they are short of breath, they should have pulmonary function tests, including a loaded and unloaded walk test. Are their oxygen saturations dropping? They also need a sleep study. Check for sleep apnea. Any signs of ongoing infection with anything? Teeth, sinuses, ears, throat, lungs, stomach, lower gut, urinary, skin.

3. Musculoskeletal Fibromyalgia. WHEN do their muscles hurt? Is it after eating? Do they fall asleep after they eat or does their blood pressure drop after eating? What diet changes have they made? Are there things they have identified that they can’t eat? Gluten, lactose, meat, sucrose, fructose, nightshades, whatever. I am looking for antibodies to lysogangliosides.

Treatment:

High antibody levels can be lowered somewhat just with “lifestyle changes” aka no drugs.

A. Treat infection if present. Look for strep A with an ASO, since we have an occult one that is in the lungs, not the throat. For fungal infection, even just on the skin, lower blood sugar as much as tolerated. This may mean a ketotic diet.

B. Treat behavioral health with drugs if emergent. If suicidal or really losing it (meaning job/relationships/whatever), then drugs may be needed. But not forever. Avoid benzodiazepines. Check for addictions.

C. Lower antibody levels:
a. Lower stress. Many people will resist this. Counseling highly recommended, ‘cept they are all swamped. Have the person draw the three circles: a day in the present life, their ideal life and then what their body wants. Listen to the body.

b. You can sweat antibodies out: hot baths, hot shower, steam room, sauna, exercise. Daily in the morning, because cortisol rises when we get up, and so levels should be lowered.

c. Is there a stimulant that works for this person to calm them down? Or an antidepressant if they are slowed instead of sped up. The relatives of dopamine that work for ME are coffee caffeine and terbutaline. Ones that do NOT work for me include albuterol and tea caffeine. Ones that I have not tried include theophylline, that new relative of albuterol and ADHD meds like adderall. This will be individual to the person because we all make different antibodies. We are looking for a drug that displaces the dopamine antibodies. For people who are slowed or have brain fog, the stimulants may not work. I would try the SSRI antidepressants first, like sertraline and citalopram, unless the patient tells me they don’t work or make them anxious. I would screen for PTSD. For high PTSD scores and high ACE scores, I would use the old tricyclics, mirtazapine (which is NOT a benzodiazepine), wellbutrin or trazodone. Again, avoid benzodiazepines. Also check how much alcohol and marijuana are on board, because those are definitely going to make brain fog worse. The functional medicine people are treating mystery patients with hyperbaric oxygen chambers and I suspect that this works for the people with blocker tubulin antibodies.

d. Muscle pain/fibromyalgia symptoms. Avoid opioids, they will only work temporarily and may addict. Avoid muscle relaxants, they will only work temporarily. Again, the tricyclics may help. The newer antiseizure drugs that are indicated for fibromyalgia are possibilities, though as an “old” doctor I am conservative about “new” drugs. Gabapentin, pregabalin, and if the person is sped up, antiseizure medicines that are used for mania. GENTLE exercise. The line between me having a good day today and overdoing is knife thin. On the overdoing days I go to bed at 5 pm. I went to sleep at 5 pm yesterday and 6:30 last night. I sang for church last night and even though I’d driven myself there, one of the quartet offered to drive me home. “Do I look that grey?” I asked. “Yes.” he said. I turn grey from fatigue and it can be sudden. Right now it’s after my second meal. If I am active, I will fall asleep after lunch if I can. If I go really light on lunch, I crash right after dinner. And remember, I am one of the lucky people who only have fast twitch muscles affected, not fast and slow twitch.

I am adding this to yesterday’s Ragtag Daily Prompt: hopeful.

plane view

I took this last month when I flew to Michigan for an almost brother’s birthday. He turned 50. The rising sun was just amazing and I could see the mountains beautifully. Yesterday’s photograph was also from the plane. I flew from Seattle to Chicago. In Chicago I took a taxi to the train station. There I waited for a train for four hours and then rode up into Michigan. It was my first real journey with the oxygen concentrator. My carry on had the concentrator, three back up batteries, my camera, a laptop and phone and charging cords for all of them. A heavy bag and I had to pull out laptop, batteries and camera at security. Fun, eh? But I had enough oxygen for a 12 hour journey and could plug in on the train. I could have plugged in on the plane too, but the cord was in the overhead compartment. Anyhow, it worked. Oxygen tubing, N95 mask and second mask over the N95… whew.

I also learned that I need to let the airline know 48 hours in advance that I am traveling on oxygen. They tend to seat you by a window so no one trips over your tubing. Though I was in an aisle seat on the way back. Anyhow…. made it, hoorah!

do no harm

First do no harm.

That is part of the Hippocratic Oath and yes we did it at the end of medical school. “I will prescribe regimen for the good of my patients according to my ability and my judgement and never do harm to anyone.”

This is a pandemic. People are dying. A lot of people. I am not ok with people saying personal freedom, we don’t want to wear masks, we don’t want the vaccine. I take the oath to first do no harm: what about those people? They are putting their personal freedom first and do not care if they harm me. I don’t like them. Please don’t kill me. Please don’t kill my son or daughter or future daughter in law.

You can have your personal freedom not to wear a mask or get a vaccine: in your house. I don’t think you should be allowed off your property if you won’t put doing no harm to others first during a pandemic. Stay in your house. Don’t come out. It is selfish to put yourself and your personal freedom in front of multiple peoples’ lives. You can order from Amazon and order groceries and ok, you can associate with other selfish unimmunized unmasked people, but not the rest of us. Your personal freedom has a high chance of killing me. I am immunized but my immune system doesn’t work and I am already on oxygen. I don’t want to be around you. Stay away from me.

I think it is time for my community to give back to me and all the other first responders: medical, police, fire, grocery store, hospital, all the essential workers. Give back: either get immunized and masked or stay in your house.

Thank you.

Covid-19: caring for yourself

audio version, covid-19: Caring for yourself

A friend took his father to the ER in the next bigger town, sent there for admission to the hospital from the clinic. His father is in his 90s, has heart failure, and his legs were puffed up like balloons with weeping blisters.

They were in the ER for 13 hours, never given food though it was promised, the staff couldn’t even find time to bring a urinal and his father was not admitted. He was sent home. No beds. On divert.

Ok, so when should you go to the hospital right now? Only if you really really can’t breathe….

First, the emergencies. An ER nurse friend talks about “happy hypoxia” where people do not feel bad but have an oxygen saturation of 50%. I suspect that this is when their lungs really are swelling shut very fast. They will turn blue quickly. Call an ambulance. In the 1918-1919 influenza, soldiers “turned blue and fell over dead”. In Ralph Netter’s book on pulmonary diseases, he has a drawing of the lungs of a person who died from influenza pneumonia. The lungs are basically one big red purple bruise with no air spaces. So if a friend is goofy and their lips are turning blue: AMBULANCE.

The one in five hospitals that are 95% full or more in the US are now cancelling all of the elective surgeries: knee replacements, hip replacements, non emergent heart surgeries, all of it.

If you are not dying, do not go to the emergency room if you are in one of the totally swamped areas.

So how to care for yourself with covid-19? Like influenza, it is pretty clear that it either causes lung swelling or the lungs fill with fluid or both. With lung swelling you may be able to stay home. First take your pulse. If you have a pulse oximeter, great, but no worries if you don’t. .What is your resting heart rate? Count the number of heart beats in 60 seconds

If it’s 60-100, that is good. It’s normal. If it is 120 at rest, that is getting worrisome. If you are short of breath at rest and your pulse is over 100, call your doctor. If they can get you oxygen, you still may be able to stay home. If not, emergency room.

Now get up and walk. Do you get short of breath? Sit back down and again, count the number of heartbeats when you are sitting. If your resting pulse was 90 and you jump to 130 walking, you have lung swelling. Functionally you have half the normal air space and so your heart is making up the difference. How to cope? Well, walk slowly. Walk during the day, do get up because otherwise you may get a leg blood clot, but really minimize your activity. Now is not the time to rearrange the furniture. Also, you may not go to work until your walking or loaded pulse is under 100.

If your pulse does not jump up when you walk, next try walking loaded. That is, carry something. Two bags of groceries, a toddler, a pile of books. Go up the stairs. Sit down and take your pulse when you are short of breath or it feels like your heart has speeded up. I am in this category. My pulse is 70, oxygen at 99 sitting. Walking my pulse jumps to 99. Walking loaded my pulse goes to 125 and my oxygen level starts dropping, need oxygen once it gets to 87. I tried a beach walk without oxygen 3 weeks ago. I photographed the pulse ox when it was at 125 with O2 sat at 87. I still need oxygen.

The treatment for lung swelling is rest. This is my fourth time, so I am used to it. Some people will have so much swelling they will need oxygen at rest. If the lungs swell shut, they need to be intubated or they die. Suffocation is not fun. The other treatment is not to catch another virus or a bacteria on top of the present lung swelling. Wear mask, get vaccinated, put out the cigarrette, no vaping, pot is terrible for the lungs too and increases the risk of a heart attack.

With my four pneumonias, the first two made me tachycardic and it took two months for the lung swelling to subside. It sucked. Inhalers don’t work, because they work by bronchodilating. You can’t bronchodilate swollen lung tissue. The steroid inhalers might help a little but they didn’t help me. The third pneumonia took 6 months to get back to work and then I was half time for 6 months. This time I am five months out today and I still need oxygen. Darn. Don’t know if my lungs will fully recover. They may not.

So: rest. Good food. Avoid substance abuse. Mask all visitors and don’t go to parties/raves/concerts/anything. Oxygen if needed and if you can get it.

Take care.

The photograph is me wired up for a sleep study a week ago. The technician took it at my request. I won’t have results until next week.