There are so many things I want to tell you about! This is not that post.
On August 26th I moved into my Cambridge apartment. Carrie and I drove down a U-haul, and up and down the stairs we went carrying boxes. Sure I got winded but it was normal. I walked around and did stuff. We saw people and ran errands.
By last Wednesday, I knew something was really wrong. I’d thought I’d had a flareup of concussion symptoms from all stress of moving. But now I was short of breath. Like really. Tuesday I was so tired I left work early. Wednesday, I spent a day fumbling around the US medical system and missing Quebec (“you can’t get a referral without establishing primary care first” “there’s a big backup on primary care” “no, that person listed as accepting patients isn’t accepting patients” “how about an appointment for your acute symptoms on December 31st?”). By Thursday a triage nurse on the phone advised me to go to urgent care. So I did.
After a $55 copay, some interviewing and tests, the physician’s assistant at urgent care diagnosed me with pneumonia and sent me home with antibiotics and cough suppressants. I stayed home Friday and took it easy over the weekend. Monday morning I was worse, not better: I got winded while standing up from a chair. On friends’ advice, I went to an emergency room in the suburbs, specifically Newton-Wellesley. I was admitted immediately. (Trouble breathing gets you well triaged.) They did more tests. No pulmonary embolism. My heart is in awesome shape. Even if I have aspirated some food because of my paralyzed vocal cord, that’s unlikely to be the cause.
But I was un-diagnosed with pneumonia. Or downgraded to maybe. After 3 days of oxygen, IV antibiotics, IV steroids (RAWK!!!!), and a suite of asthma meds, I can breathe deeply again. My oxygen levels are good enough that I can walk around and don’t need extra oxygen.
I may be released today or tomorrow, depending on how I do on stairs and what doctors say.
But I still don’t know what really wrong with me. I have what can best be described as a “terrifying Old Jewish Man” cough. I could write you a book about phlegm, but will spare you. When I lie down, my oxygen levels drop. The current theories are:
- My cancer. This is the local favourite but I’m not buying it. This is all from doctors who do not specialize in cancer, or my very specific kind. I had a CT in August that showed no significant progression. I had another CT on Monday and the report reads almost identical to August’s. I want to hear this from an oncologist who knows something about my cancer. The American medical system is very, um, aggressive, and goes straight to KILL MODE with cancer. Except counterintuitively, I don’t know that my kind of cancer (army specific case) actually affects breathing despite its residence in my lungs. I talk with my oncologist tomorrow.
- Asthma. I have it. Maybe I just need stronger treatments? I am responding well to a nebulizer.
- Some kind of lung infection that’s either sorta pneumonia or something else. Probably bacterial. If it’s viral, I’m not contagious. I am responding very well to steroids and maybe antibiotics.
- Allergies. Maybe something in the environment or my apartment.
- Very low possibilities: long Covid, obesity hypoventilation.
I will probably go home today or tomorrow. I will have followup with a pulmonologist next week, and this experience has also netted me a very useful referral to a local oncologist with expertise in my kind of cancer, which will be great for coordinating care with my Montreal team while I’m here.
The people at the hospital have been very nice. I may have actually convinced a nurse here who is a budding drummer to start her own punk band. I’ve had lots of medical professionals come through and learned a lot about my body, including some useful revelations about my swallowing. Yesterday morning felt like office hours before a paper was due, except it was all medical people coming to see me.
I’ve had a great support network here even though Carrie is three time zones away. She’s on a major grant deadline so this added to her stress big time. We discussed her flying out but in the end decided against it. All those years of teaching disability studies (#carewebs) have totally disinhibited me from asking for help. I have some old friends here who have been fantastic. One is a chronic illness sherpa who has helped me navigate the system. Two friends from Montreal who are also here on sabbatical, have driven me here, waited with me, and broken into my apartment for stuff. But also other fellows have really shown up. I got three lovely cards from the Institute with lots of great personal messages, along with some very nice personal emails. Someone broke into my office and got my computer so I could write this note. And I’ve had as many room visits from friends as I can handle.
I had a very intense medical year since last September and fantasized about just maintaining while I’m here and focusing on being a person. But with chronic illness you don’t get to choose. At least I should be back to sabbaticaling next week.
A few other thoughts on healthcare here vs home:
I am very glad to have a sabbatical gig with a proper health plan to cover all this. I a lot of other US sabbatical fellowships don’t come with full insurance. That would have put me in a position where I’d have to go back to Montreal for proper care. I would not want to be un- or underinsured in this system.
Despite all our complaining about Quebec healthcare, a place like Cambridge MA with a great reputation for healthcare has a lot of the same issues in terms of a new person accessing it. I was told that private equity sent a local hospital into bankruptcy here and issued a bunch of people out into the system needing primary care doctors. There was massive burnout and systemic breakdown during Covid, etc. etc. But also like Quebec, once you’re in the system, the wheels seem to turn a lot more smoothly. (I will be testing this over the next few weeks.)
The US healthcare system asks a lot of personal and somewhat invasive questions at intake. Race, ethnicity, religion, religious beliefs, history of drug use, lots of detailed question about alcohol (lol one drink in the last month), though oddly not much about chronic illness or disability (would seem more important for intake into a medical system?) I got asked about my gender identity and sexual orientation so many times I reached a point of saying “I am cross appointed in gender studies, I honestly don’t know how to answer those questions anymore.” Which is actually true, but a story for another time.
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Bonus nerd content: I’ve been very intimate with this here monitor in my room for the last three days. There have been a couple moments where it almost looks like the three waveforms on my Buchla 208: spike waveform (the top), rounded square wave (bottom), and folded sine / triangle (middle). It’s not so close here but it’s the best I can do.