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.

Integrated behavioral health

The buzzwords now in Family Medicine. Integrated behavioral health in primary care. I am finding it a bit annoying.

Integrated does not mean race in this context. It just means the clinic should have a behavioral health person.

I suppose that is a good idea maybe, or might seem like one. But what do they think I have been doing for thirty years? Ignoring behavioral health?

Really, primary care is half or more behavioral health, if a primary care doctor gives people time and pays attention. People have an average of 8 colds a year. Why do they come in for cold number 4 if it is no worse than all the others? Because the cold in not really why they are coming in. The cold is the excuse. Notice that the person is there, that they are not that sick, that they do not care that you are not going to prescribe antibiotics.

I have my hand reaching for the door when an older patient says, “May I ask you something?” She came in for something that she didn’t seem to care about, so I am not surprised. I turn back. “Yes.”

“I have friends, in another state. They had a baby. The baby is very disabled.”

I sit down. This is more than 15 years ago, so I do not remember what the baby had. Hydrocephalus. Cerebral palsy. Something that requires multiple doctors and physical therapy and the parents are grieving.

“What bothers me most is that they have to struggle so much for services. There is very little support and very little money set aside. One of the parents has quit their job. It is a full time job taking care of this child and they are frightened about the future. Is this really what it’s like?”

And that is the real reason for the visit. “Yes,” I say. “It can be very difficult to access services, you have to track down the best people in your area, some physicians won’t pay much attention and others are wonderful. And the same with physical therapists and everyone else. Tell them to find some of the other parents of these children. Get them to recommend people. And the parents have to be sure to take care of themselves and each other.”

She frowns. “It’s a nightmare. Their life completely changed from what they thought. First baby. And it is overwhelming.”

“I am sorry. You are welcome to come back and ask me questions or just talk.”

“Thank you. I might.”

“Do you need a counselor?”

“No, I’m fine. I am just worried about them and feel helpless.”

“It sounds like staying in touch is the best thing you can do.”

“Ok.”

The true reason for the visit is often something entirely different from what the schedule says. Sometimes people are there without even knowing why they came in. “Can I ask a question?” That is key. Saying to see people for one thing is criminal and terrible medicine and makes behavioral health worse. There is so much we can do in primary care just by listening for these questions and making time for them.

I have nothing against adding a behavioral health person to the clinic. They talked about “embedding” a behavioral health person in each group of soldiers back in 2010, when I worked at Madigan Army Hospital for three months. I always pictured digging a hole in my clinic floor, capturing a counselor, and then cementing them in the hole. I would have to feed them, though. I always thought that was sort of a barrier. One more mouth to feed. I found it more useful to contact counselors, ask what they wanted to work with, learn who knew addiction medicine, learn who was good with children or families or trauma. And ask patients to tell me who they liked and why. I integrated behavioral health in my community, not just in my clinic, because there is no one counselor who is right for everyone.

Rebel in clinic

Right before my hospital district informed me that they no longer wanted my services, I was rebelling. The fight from my perspective, was over good patient care. They had set a quota. 18 patients a day. One every 20 minutes and one 40 minute visit. 8 am to noon and 1 pm to 5. I argued and argued and argued. I knew finishing the note in the room took me 25 minutes on the hateful electronic medical record and I had averaged 16 patients a day my whole career. I was not fast but I was super thorough and had just gotten an excellent report on a chart review and had been told that I was a great diagnostician. Which was mostly due to my nearly OCD thoroughness. I was not diplomatic with the hospital administration.

One day I was feeling wicked, just wicked. I had a brainstorm and started whistling softly. The other two doctors and PA were all in the same small office.

One took the bait. “What is that? I know that song.”

“Oh, we are singing it in chorus. For some reason it is in my head today.” So I sang this song.

I did not have the words memorized. I swear that the temperature in the room dropped and the male doctors hunched in their chairs.

“Yeah, don’t know why that one keeps playing in my head.” I said. “I hope you can all come to the concert!”

But answer came there none.

I took the photograph at Quimper Family Medicine, the clinic I opened after the hospital clinic kicked me out. The skeleton was named Mordechai in a contest. This is from 2014. Mordechai lived in our waiting room every October, with different outfits.

Is this a tree?

Is this a tree?

I would not call this a tree. I would call it a cone. It contains seeds. It is not a tree.

A pregnancy is called an embryo until 8 weeks after conception and then a fetus until birth. It is not a baby, any more than a seed is a tree. Here is a link to a picture of the embryo developing:

https://en.wikipedia.org/wiki/Human_embryonic_development#/media/File:HumanEmbryogenesis.svg

It’s a bit difficult to call the embryo a baby.

After 8 weeks (10 weeks from the last menstrual period) the developing pregnancy is called a fetus. It cannot survive outside the womb. A term pregnancy is 37 weeks, and the due date is at 40 weeks. The earliest survival, certainly not natural, is around 24 weeks. This takes heavy intervention and technology, a premature infant on a ventilator for months. There is risk of damage to the eyes from high oxygen and risk of spontaneous brain bleed and cerebral palsy, because the newborn can weigh half a pound. Once born, the fetus is termed a baby.

This is important from a medical standpoint and pounded into us as physicians. WHY? Because in a trauma situation, the life of the mother comes first. In Obstetrics and Family Medicine, the life of the mother comes first. In Oncology, the life of the mother comes first. My sister was diagnosed with stage IIIB ductal breast cancer at age 41. She was engaged and it turned out that she was pregnant. She wrote this essay on her blog, Butterfly Soup:

The hardest loss of breast cancer.

She had an abortion and chose chemotherapy, because it was her or the fetus. If she had chemotherapy pregnant, at that time she was told that it would probably kill the fetus or cause terrible birth defects. If she held off on chemotherapy for seven months, her oncologist thought she would die. She had a very very aggressive cancer and she already had a daughter who needed her.

She lived until age 49, with multiple rounds of chemotherapy, radiation, gamma knife radiation, whole brain radiation. And she lived until her daughter was 13. Without the abortion, her physicians thought she would have died when her daughter was 7.

My ethics in medicine are that patients have autonomy. I would NOT have wanted my sister to choose to refuse chemo and try to bring a baby to term while dying of breast cancer. However, it was HER CHOICE, not mine. It was private and no one else’s business and how dare people make moral judgements about another person’s medical choices. I give my patients CHOICES. They can choose not to treat cancer and go into hospice. They can choose surgery or refuse it. They can choose to treat opioid addiction or refuse. They may die of a heroin overdose and I grieve. I try to convince them to go to treatment and I give them nalaxone to try to reverse overdoses. I refuse a medication or treatment that I think will harm my patients, but my patients have autonomy and choices. That extends to women and pregnancy as well.

It is NOT a baby in the womb, however emotionally attached people are to this image. It is an embryo first and then a fetus. And in a car wreck, the woman comes first and the fetus second.

For the Ragtag Daily Prompt: explain.

Caduceus Hair

A physician says to me, “You might have had more friends and been more successful in your career if you had been put on medication a long time ago.”

I think, “You f—ing bitch.” Nothing shows on my face. The doctor face is pleasant on the surface and the stone face that guards my feelings is deeper. I could show you the snakes and you would turn to stone but I would go to jail.

Your words don’t go away. They fester, a deep deep wound. I ask my other doctor, “If my only symptom of pneumonia is my mood, no white count, no fever, how would I know if I had pneumonia if I were medicated?”

I think back. Age twenty five with belly pain, emergency room, CT scan and then a sigmoidoscopy. I couldn’t eat, it hurt so bad. The emergency room offers me valium. “No,” I say, “my father is an alcoholic. I won’t take that.” I am sent to counseling. The counselor, smug, blonde, polished, wants to send me to her husband, a psychiatrist, for drugs. “No,” I say, “my father is an alcoholic. I want talk therapy not drugs.” I am very very afraid.

Things get better.  I tell the counselor thank you. “You can’t stop now,” she says, “You must continue the counseling. Or you will have problems later on.” I go once more. She says I must keep coming. I speak to a family friend, a PhD psychologist, who encourages me to say no. I cancel. No regrets.

I am not an alcoholic. I don’t smoke. I don’t use pot nor CBD. I never tried cocaine or meth or opioids or crack. I can tell an addict by their charm: the sick people are not charming nor the people in for maintenance. The moment a person tries to charm me I wonder what they want.

The physician is wrong and cruel besides. Valium is addictive and is still overused. I could have taken the path of psychiatric medicine but I chose not to.

I will find another doctor who is less stupid and cruel. They do exist. I know, because I am one.

____________________________

failure of the medical non-system

One thing that makes me gloomy, as a Family Practice Physician: the only person who has read my medical notes from the multiple specialists is ME.

Since March 2021, I have seen Family Practice, Cardiology, Pulmonology, Infectious Disease, Immunology and Psychiatry. I am in a rural area, so this involves three different hospital systems. They all use the EPIC electronic medical record, but they won’t release information to each other. I have gotten two of them hooked together under ONE of my names and passwords but guess what: my primary care physicain can’t see the notes from the other sites. Only I can. “Proprietary infromation.” Hey, you stupid medical non-systems, this is MY healthcare, MY notes, and YOU SUCK.

My primary care physician COULD request the notes from my pulmonologist but she hasn’t. I find this incomprehensible. I have been on oxygen for over a year. I guess my doctor frankly doesn’t care. Has she farmed my lungs out to pulmonology and doesn’t have to pay attention any more? My goal in practice was to have all of the specialists’ notes. If that was five different specialists, I requested them. Ok, it is next to impossible to get psychiatry notes. I keep wondering if psychiatrists really write notes. The patients never seem to know what diagnosis the psychiatrist is using. One hundred percent of the people that I have seen put on an (addictive) benzodiazepine say that it is for sleep. Meanwhile, at the conferences, the psychiatrists say that primary care should not give the patients benzodiazepines for sleep. I raise my hand: “Even when you psychiatrists have started them? The patients all say it’s for sleep. We don’t know WHAT you have them on it for.” When I try to stop the benzo, the patient has a fit and says that psychiatry said they have to have it. And the psychiatrist has retired or left or changed the phone number and there are no notes ever.

Anyhow, I am counting up specialists. I had really bad strep A pneumonia in 2012 and 2014. Since 2012 I have seen 20 specialists. That is counting the three Family Practitioners, because Family Practice is a specialty too. I thought it was about taking care of the whole person, which to me means reading all the specialists notes, but not one of the ones I have been to has done that.

So the medical system is an abject failure. I blame the US citizens. We choose the system with our votes. We need medicare for all, single payer healthcare, and one electronic medical record for all of the United States. Right now, there is a push to privatize medicare and turn it over to For Profit. We need to fight this and we need to demand better healthcare. Hospital organizations should not be refusing to send my clinic note to my primary care doctor. It is stupid and bad care.

https://pnhp.org/ Physicians for a National Healthcare Program for more information.


stranded mermaid, cilia and tubulin

I took this photograph last summer at North Beach. I thought she looks like a stranded mermaid, thrown up on shore. I couldn’t move her, she was twice my length. The rock attachment had come too, up from our sea beds.

Happy solstice. Today marks the one year day from when I realized that I was having my fourth round of pneumonia, with hypoxia, agitation, fast twitch muscle dysfuntion and felt sick as could be. I am way better but not well. That is, I still need oxygen to play flute, to sing, to do heavy exercise and to carry anything heavy. Which is WAY better then having to wear oxygen all the time. Today I find a connection between the lungs and the brain, in quanta magazine. This video talks about a new found connection between cilia and the brain. We were taught that cilia and flagella are for locomotion, powered by tubulin. However, this shows that cilia behave like neurons and there is a connection. Since my peculiar illness seems to involve cilia dysfunction in my muscles and lungs, so that I get pneumonia, and the brain, because I am wired when it hits, this is a fascinating connection. If neurons developed from cilia, the dual illness makes a lot more sense. Hooray for quantum mechanics! We use it in medicine every single day.

Happy solstice! Here comes the sun!

first impressions

I am taking a writing class and our next book is on cultural appropriation.

This interests me. I tend to be a little gender blind and race blind when I meet people. I am using my super skill instead. My skill is developed from a really scary childhood: I read the stuffed emotions. The stuff people are hiding.

No way, you say. Oh, yes, I say.

My sister described coming home from high school and stopping when she walked into the house. She was trying to sense what was going on. Were our parents fighting? Was our father drunk? Yes, he was drunk, but which stage?

We talked about the stages and which we hated most.

Stage goofy/silly was annoying but not toxic. We said we had homework.

Stage asleep in a fetal ball in the upstairs hallway. My sister said she would step over him to get to her room.

Stage maudlin. We both agreed this was the worst. He would cry and say, “You can tell me anything.” Once he caught me in that stage and I was in tears by the time my mother got home. I left the room. The next morning mother said, “He said you two were discussing the cat’s disappearance.” I didn’t answer. We never said a word about the cat. I didn’t know if he was lying or was too drunk to remember it the next day, so made it up. Don’t care. Avoid.

He was never physically abusive. He and my mother would scream at each other at 1 or 2 am through most of high school. Reading her diaries, she writes that she drinks too much. I think they were both alcoholics, thought the family story is that he was the bad one. But I can’t imagine yelling with a drunk at 1 or 2 am for an hour. What is the point? They are drunk. So either she was drunk too or needed to fight.

Emotionally abusive, yes, both parents. My mother would take any show of fear or grief and tell it as a very very funny story to every person she ran into. Is it any surprise that I had to go into therapy after she died to learn to feel fear or grief? My sister would say, “She’s got her stone face on,” about me. Um, yeah, I am NOT going to let my family see my emotions…

Anyhow, that is what I read in people when I first meet them. It’s not the suit, the clothes, the make up, the race, the gender. I pretty much ignore those. I was fashion blind in junior high, a girl geek, could not read the code and did not care. I had given up on socializing with my fellow students. I was hopelessly bad at it. I did a lot better with the adults around my parents. I could have actual conversations with them.

I had one patient who was transgender where I couldn’t remember which direction. I didn’t care, either. That was a really angry person. Anger is always covering other emotions, so I avoided pronouns and tried to be as gentle as possible.

I complained to a counselor once that I can’t turn this “off”. And that it’s fine in clinic with patients, but it screws with my relationships with my peer doctors. They do not like it if I “read” them.

It took me years, but I finally realized that I have to use my clinic skills with everyone. I can’t turn off “reading” any more than you turn off your eyes when you meet a new person. But I can be as gentle with everyone as I am in clinic. I realized that as I started on a trip and the trip was amazing, everyone was so nice.

This reading is a product of a high ACE Score: Adverse Childhood Experiences. I score about a 5. One of my patients set off my ACE alarms on the first visit. I asked if he had had a rough childhood and gave a very short explanation of ACE scores. “Oh, I am a ten out of ten,” he said. He was, too. Ran away from home at age 6 or 8.

The ACE scores of all the children are rising from the last two years. The war will raise them even more, worse for the children there and the kids trying not to starve in Afganistan and Syria and world wide.

It will be interesting to read about cultural appropriation. But I don’t care much: I don’t “see” those things when I meet someone.

Hugs and blessings.

The photograph is me and my sister Chris in 1987, before my wedding. We were dancing before the wedding. She died in 2012 after 7 years of breast cancer.

Doctors and nurses and hospital staff are the last caregivers for the elderly alcoholics and addicts who are alone, whose families have finally cut them off. I think this song illustrates their pain. We try to take care of them.

Update on whatever it is I have

I had the heart echocardiogram bubble study. Normal. I really really did not like having the mix of blood, saline and AIR injected and I COULD FEEL IT. My logical brain knew it was going into a vein, but my emotional brain kept yelling “Air embolisms kill people!” Yes, but that is arterial. My emotional brain did not care. Anyhow, it was fine.

Saw the cardiologist who said he can understand why I feel PTSD going into my local hospital. He says I should not need oxygen at age 60 with no smoking. He says “Not your heart.” Yeah, duuuude, I know. He suggests I go to the Mayo Clinic. I agree.

Meanwhile, my primary sent a referral to rheumatology to have me seen at Swedish to confirm chronic fatigue. This is to keep the stupid disability off my back. Swedish rheum doesn’t call me. I ask my primary’s office. Swedish STILL doesn’t call me. I call them, as follows.

“Hi, I was referred to Swedish rheum and I have not been called.”

“Name, serial number, date of birth, length of little toe. Ah, we just received the referral yesterday.”

“Um, I don’t think so. I was referred over a month ago.”

“Uh, oh,” scrabble noises, “Oh, uh, we got a referral in December. We were not taking new patients in December.”

“When did you start taking new patients?”

“Oh, um.”

“When did you start taking new patients?”

“Oh, uh, January. But we only took the ones that called us, because after they call, we then review the notes.”

“So you ignored the referral until I call? How am I supposed to know that?”

“Oh, uh, we will expedite your referral. Maybe even today.”

So THEN I get a message from my primary that they have REFUSED the referral. Great.

Meanwhile I read the cardiologist’s note, which pisses me off. “We will refer you to Mayo Clinic since you have unexplained hypoxia and you think you have PANS.”

I send my primary a very pissed off note saying, could we please phrase this as “a psychiatrist suggested PANS in 2012 and while no one likes this diagnosis, no one else has suggested an overarching diagnosis since that time in spite of her seeing four pulmonologists, neurology, cardiology, infectious disease, four psychiatrists, allergy/asthma, and immunology”. Saying “the patient thinks she has PANS” automatically labels me as crazy and obsessed.

So, it seems I should write a book, about how the medical communities treat patients, including a fellow physician, horribly. Of those doctors, three have treated me with respect and were grown up enough to say, “We don’t know.” The neurologist, the infectious disease doc and the present pulmonologist. All the rest are dismissive and disrespectful. Oh, and the one psychiatrist, but the next one says, “I don’t believe in PANDAS.” I stare at him in disbelief, thinking “they are animals related to raccoons that live in China, you moron”. I did not even know it was controversial until that moment. Holy PANDAS, Batman.

My primary has suggested I write to the Mayo Clinic myself, and I am going to. Because the present people aren’t listening, except my pulmonologist and she is short staffed and looks like death warmed over post call every time I see her.

So it’s all annoying as hell. The cardiologist seemed pretty nice, but damn, he put the same damn rumor down about me self diagnosing. Most of the doctors apparently think I might be a tolerable person if they could just drug me with psych drugs. And from what I have seen, there are many patients who are in this situation.

For the Ragtag Daily Prompt: WAR.

https://pubmed.ncbi.nlm.nih.gov/30724577/

hope for good coming out of isolation

This video is from 2011. I was invited to be a speaker and had ten minutes to present the Mad as Hell Doctor program, talking about single payer healthcare, medicare for all.

If there is a good thing to get from Covid-19, for me it is single payer healthcare. Because doctors and nurses and staff are worn out, sick, quitting, dying. We need people to take out sick appendixes. We need people to work in nursing homes. We need to support our medical people and I am NOT talking about insurance corporations. They are making more profit than ever. Twenty percent of every dollar paid to them or more.

People say, but it’s socialized medicine, to have medicare for all. Well, no. The only socialized medicine in the US currently is the Veterans Administration. No one that I talk to wants to take away Veterans benefits. Or any of the other government programs: medicare, medicaid, active duty military. The oldest, the poorest and disabled and the people defending our country.

But physicians can do a better job if they are not worrying about prior authorization from 500 + companies, each with multiple different insurance contracts, and who can change what they cover at any time. I get emails all the time: we have changed what we cover. Great. Like I have time to read and learn 500+ insurance contracts. I memorize medicare rules and they change too. Medicare for all, one set of rules and then if you ask if something is covered, we will know.

I am not the only physician who wants single payer: Physicians for a National Healthcare Program.

I find this on line: https://www.quora.com/Could-Medicare-or-Medicaid-be-expanded-to-the-general-population-to-create-single-payer-healthcare-Would-it-be-more-efficient-than-an-entirely-new-program?share=1

The answer is yes, yes, yes. And there would be a continuous ongoing battle about what is covered and what isn’t but that already happens. For two reasons: medicine changes continuously as the science changes and there is a vocal strong fringe, which is occasionally correct. I don’t trust the fringe, but then I don’t trust insurance companies, herbal medicine makers or politicians either.

_____________________________

I can’t credit the videographer because I did not know that the video was being taken or that it was posted. I found out when a new patient said she was seeing me because of my video. I had to look it up.