Thread by @seanchaibeag

I want to talk about #LongCovid & #hypoxia & how my experience of it now is *drastically*, even *dangerously* different to what prior lung issues taught me.

I didn't plan to do this thread and I'm not thinking clearly atm, but it's important, so I'm going to give it a go.

Background: I was born prematurely & before synthetic surfactant, so I have asthma and temperamental lungs in general. I also have an extensive history of pneumonias that try to kill me (as in ICU stays). So I've had 40 years of knowing how to handle not being able to breathe.

I knew about happy hypoxia. I knew how, when, and what to do about it when my judgment about whether I was alright started to slip, and I knew that that's often the first thing to go when you're hypoxic - *first*, you feel... off. Unquantifiably off. It's easy to miss it.

Except #LongCovid hypoxia was a whole other world of "I'm not short of breath, I don't feel dizzy, my self-assessment is sound - but the probe says things are not okay." And for months I didn't know what to *do* with that, because O2 when you *don't* need it can be detrimental.

So I kept checking and trying to be cautious - don't stand up during a low, don't move much when it's bouncing all over, etc (again, I'm not new to this), but the fatigue and cognitive dysfunction were *unreal*. It didn't feel like hypoxia-related cognitive dysfunction, though.

It also didn't feel like ME related cognitive dysfunction - instead, I felt like I was losing my mind. I'd lose giant blocks of time (hours!) where I was conscious and interacting (and comfortable, ish!) and had *no* memory of what I'd done. My speech went *completely* to hell.

(Intermission: The speech issue is complicated by having CP. The "cerebral palsy speech" you may be thinking of when you hear "CP?" I don't normally have that - not so *you'd* notice. Boy howdy do I have it now! Anyone need an authentic sounding drunk dial? At your service!😁)

Believe it or not, I didn't even notice when my speech started to slip, even though I felt it happening (it's like not being able to trust a dance partner - "wtf are you *doing*, mouth muscles, that's not the signal I sent! You gotta keep the lips and tongue in the game, man!")

But the slow *motor* response re: speech - a quirk I have thanks to CP and *not* asthma or covid - is what finally tipped me off to the fact that I *had* to be more hypoxic than I thought I was. I don't know how (formerly) abled people can make that determination.

The more I thought about it, the more I realized that "my brain is not getting enough oxygen" explained the hallucinations, the *mental* word retrieval issues (different to speech issues!), the crushing fatigue, & the headache that did not always *feel* like an O2 dep headache.

But I couldn't find a reading that was low enough for *long* enough that I was comfortable dragging the 02 out of the closet (again, O2 when you *don't* need it can be as detrimental as *not* having it when you do need it.) Until I started lying flat and checking after 15 min.

And... yeah, wow, turns out spending my entire night in the low 80s/high 70s, while I'm unconscious and thus can't sort it, has been part of the problem! And it *terrifies* me how many people with #LongCovid don't realize this could be happening to them.

In "normal times," they tell people w/ a history of lung issues to hit A&E/ER when sat drops below *94*. For #LongCovid, I've been told not to darken anyone's door til it's 85 or lower for more than 10 minutes. We're using a *wildly* different metric for hypoxia than ever before.

But do our brains know that? I'm serious - is *enforced* extended hypoxia what's *causing* some of the neuro symptoms we see in #LongCovid? I don't know and I'm not going to speculate (I am way, way too #hypoxic to medgeek on that level atm) but it wouldn't *surprise* me.

That brings me to early this am, when I had a major hypoxic incident *while wearing O2* - I'm still not sure why, but repositioning fixed it eventually. However, I woke up this morning feeling groggy, short of breath, and with a *massive* O2 dep headache. (The thud is... unique.)

I haven't been having many of those - usually they're more what I think of as a *covid* headache, where it feels like all the flesh has been peeled off your skull and someone's jabbing your brain with a hot needle. Similar in terms of discomfort level, yet very different in feel.

And now, lately, it's *both* (fun times!) which is also a bit concerning, because it means something's shifted. So I've been wary the past few days. Less moving. Less forcing myself to do that (f***ing) talking business (if I ever catch who invented verbal speech, I swear...).

This am, it seems to have caught up with me anyway. Normally, I can (& do) have the O2 off from about 2 hours after I wake up till about 2 hours before I go to bed. Today? I *very* nearly passed out trying to get Malarkey's meds and fluids done. 20 minutes off = sat of 86.

And only now - *now*, when it's *bad* - does it "feel like" hypoxia that I recognize *as hypoxia*. *Now* it's familiar. *Now* I feel like I'm on solid ground again (ironically). But things had to get demonstrably *worse* before I realized how bad they were to begin with.

I'll be okay. Pulmo stuff is where I *live* - in a very-slightly-fairer life I'd've spent about 20 years already working as a pulmonologist treating people with CF by now. Didn't happen, but my crip MacGuyver skills are still disproportionately respiratorily related.

I am also keenly aware that at any moment I could *not* be okay. I'm not anticipating it any time soon, but I'm aware it could happen (as it did this morning). It's hard to summarize 40 years of pulmo knowledge beyond "I do know what I'm doing, including not to get cocky."

But I worry, because I *do* love this stuff and study it for fun and have *decades* of experience with my body and others, and this is *still* one of the most confusing aspects of #LongCovid to me.... and I *do* know what I'm doing. I *have* trained under actual pulmonologists.

So if you have #LongCovid, *keep using the pulseox probe*. Check for #hypoxia. Check a *lot*. Check in different positions. Get a wearable that checks overnight. Check when you're not short of breath. Just check. Maybe it's fine. I hope so! But check anyway. Check often. Please.