So y’know that thing where people say their spouse saved their life? Sometimes metaphorical or symbolic, sometimes literal.

Well this is the story of how my wife literally, not figuratively, saved my life. With a subplot about how I was an overachiever when it came to sleep apnea.

Within literal days of first sharing a bed, we’re having breakfast one morning and while we’re enjoying eggs and toast, with a side of home-made salsa (because everything I eat has to have a kick!🌶️) she says the words that started quite the journey.

“So hey. Did you know you stop breathing when you sleep?”

I’m sorry, what??

“Yeah. You’ll be snoring, then do this thing where you kinda catch your breath a little bit, like a gasp, take a few breaths in and out, and then just…stop. You just stop breathing. Five, six seconds. Sometimes 10 or longer. And then take the deepest breath in! Like a deep gasp! And you’ll do that several times a night. It’s a little terrifying. 😳”

*confused look on this author’s face*

“You didn’t know??”

Uh, no!

No idea. Not something I’d ever realized, not something anybody ever said, not something any doctor or anybody ever noted.

By that point I was in my mid 30s, and my days just were what they were. Tired a lot. Constant naps, dragging all day. Some days less than others but, I dunno, you get used to sleeping habits. *shrug*

But when she asked me, within days of first sharing a bed, if I knew I stopped breathing, it scared me! Then she brought up sleep apnea and suggested I get a sleep study done.

I’d heard of sleep apnea, I knew about the CPAP machines people would wear. But I didn’t think that applied to me.

Still, I agreed it would be a good idea to get checked out.

So I made an appointment at National Jewish, one of the best respiratory hospitals in the nation. I suppose I didn’t have to go to that extreme, I suppose any hospital would do, but I made the appointment at National Jewish.

I walk in (with my own pillow that I ended up forgetting after the test was over, dammit!) on Friday morning. She asks me background questions. Are you always tired? Do you yawn a lot? Do you take naps? Do you constantly feel sluggish?

And do you ever feel like you’re constantly sucking in air at night, and waking up?

Yes. Yes to all of those. But the “constantly waking up at night” thing, constantly sucking in air, I thought it was from bad dreams! Or in my imagination! Or, I dunno, “just the way things were.” 🤷‍♂️

I asked if that’s apnea, and she said that’s what we were there to find out.

She connects all the sticky sensors, you know the ones, to various parts of my body including my legs to test for Restless Leg Syndrome. She explained that the sensors will measure my heart rate, my breathing, my oxygen levels, just all the things. And for the first half of the test I would just try to sleep. Just my normal habits. No mask, no nasal cannula, just try to sleep. This is when they’ll verify apnea and the specifics of apnea. How often I wake up per hour (85 times, by the way! Per hour!) And the second half would be with a mask and would measure how much air pressure is needed to prevent the apnea (11, by the way.)

I fell asleep soon enough. It helped that I was exhausted. I don’t remember the rest of the night but I remember waking up with a mask on my face.

Sleep tech comes in the following morning and says we’re done. Says the specific results will take a few days to a couple weeks, but yes, I had sleep apnea. I woke up to varying degrees 85 times in one hour. And it was central sleep apnea as opposed to obstructive sleep apnea. She explains the difference, saying that obstructive is more common and is where your throat physically gets blocked from taking in air, whereas central is where your brain “forgets” to send the signal to keep breathing! And given my history of Spina Bifida she nonchalantly says, almost as a throwaway comment, “it probably has something to do with that.”

That’s it??? “It probably has something to do with that.” No specifics. I mean, “probably has something to do with that,” how????

I’d been to several national Spina Bifida conferences by that point. 9, to be exact. And I learned a lot about a lot of things. But nothing about apnea. Surrounded by experts in the field of SB, wonderfully dedicated and smart people that helped me figure out I had a learning disability I never knew about until my first conference in 2003. (Discussed at #26 here.)

But nothing about apnea. 😐 (EDIT: The comments are coming in, and apparently there were sessions where docs recommended “everyone with SB should get a sleep study” because of apnea. You don’t know how sorry I am I missed those sessions!!)

Not that I blame anyone. My generation, Gen X (with a few years from the Boomers thrown in) are the first generation of people with Spina Bifida to survive to adulthood in large numbers. Large enough numbers to be studied. Large enough to finally begin to know what happens to us as we age. They call us “Pioneers” in that regard.

Adults refer to ourselves as guinea pigs. 😐

So ok, I had the apnea. Central Sleep Apnea. “Probably has something to do with your SB.”

……..ok 😳🤷‍♂️

I’m reluctant to get the mask. I mean come on, nobody wants to fall asleep with a mask. It’s uncomfortable, cumbersome, and you feel stupid wearing it.

So I didn’t get it. Not for weeks.

K wasn’t terribly happy about it but, “I can’t make you do anything.”

But then she says it got worse. Snoring louder than I already had been, which I already knew was pretty loud! And I was even more tired, stopped breathing at night. It was all getting worse and I was exhausted all the time.

So I finally got the damn mask.

Big thing, covered my entire face. Not really, but it felt like it did. And I tried. I really tried. Different positions, different full face masks. I just couldn’t get used to it. I couldn’t sleep with this thing on my face! So after a couple months, I gave up.

If you’ve come this far, thanks. 😊 I shall reward you by getting to the bizarre part of the story.

I gave up on the mask and life went on.

Cut to May 2013. Wife and I had just made it official a month or so earlier and got married. Life was pretty great.

Then I got a headache.

Not a bad one. Not particularly excruciating. But constant. New and constant. And then throat issues. Some coughing. All this stuff that I thought would be another sinus infection that I had been prone to.

I figured I should go to urgent care before our family vacation. He’ll tell me I have a sinus infection or something, I’ll get antibiotics, and everything will be fine.

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