Rest stop: my painfully slow path to apnea diagnosis & treatment

Me in the sleep lab. Sorry, fellas, I’m taken!

This all started last spring, when I started waking in the morning to an empty bed. And contrary to my first guess, Joe hadn’t gotten up early to work. Instead, I found him wrapped up in a blanket on the living room couch, asleep.

“I’d gotten up to use the bathroom at about 4 in the morning,” he’d told me, “and I just couldn’t get back to sleep because you were snoring so loudly.”

Whaaaaaa? Me, snoring?

I’d never been a snorer before. That was what we’d made fun of my dad for, when we were kids crammed in a hotel room, or when he snoozed on the couch after dinner. That wasn’t ME.

“Really?” I winced, initially resisting this adjustment in my sense of self. “Huh. That’s weird.”

Joe’s pre-dawn exodus quickly became an established pattern, though, rather than a seemingly flukey occurrence. I felt guilty and embarrassed and humiliated and helpless about it, often starting to cry while apologizing. (I’m not particularly girly, yet there’s still something profoundly un-feminine and boorish and ugly about snoring your partner right out of your bedroom each night.)

Why was this suddenly happening, on top of my layoff? I asked myself. Considering the stress-induced root canal I just had, was this yet another way that my body manifested my job-loss?

Because this one particular piece of the puzzle has always been clear. I carry loads of tension around in my body, especially in my shoulders and neck, and weekly yoga classes over the past decade or so have done little to change that; in addition, I’ve been grinding my teeth while sleeping (a/k/a bruxism) since I was a kid. So while I may succeed in presenting a low-key face to the world much of the time, behind that facade is a panicked woman in a compressed air booth, desperately clawing at to-do list items and family calendar entries.

Also, when I occasionally cash in a gift certificate or just treat myself to a professional massage, the masseuse, upon first touching my upper back, always says, “Oh” or “Wow,” in a tone that reads, “I don’t know if I can work all these kinks out in the time we have.”

So as miserable as I was about the snoring, I thought, Well, give yourself a break. Maybe after you push through this rough patch in your life and come out the other side, it will leave as suddenly as it came.

Spoiler alert: it didn’t.

But it was, and continues to be, hard to separate my unemployment anxiety/funk from my physical symptoms. So when I consistently felt fatigued and run down after what seemed a good, uninterrupted night’s sleep, I figured it was just my job-grief wreaking havoc.

Then, in July, we traveled to Michigania, the family camp run by U-M’s Alumni Association, and I learned that a member of one family we vacation with each year brought a continuous positive airway pressure (CPAP) machine along to treat her sleep apnea. Hmm.

First, as you’ll note by the “she” pronoun, the apnea sufferer was a woman, and she’s only a couple of years older than me. Second, she’s tall and lean – hardly the body type we all tend to associate with apnea. Third, her mention of a CPAP machine reminded me that my dad has one, after being diagnosed with severe apnea a few years ago, so I began to wonder if family history could play a role in obstructive sleep apnea (OSA).

I started doing a little research online, and the answer appears to be “yes,” so I made an appointment with my doctor to get the process started.

I knew I’d probably have to work through a series of referrals and a sleep lab visit, but truly, I had no idea how long this process would take.

And I didn’t leave my doctor’s office convinced I had OSA, either. But I at least got the green light to make an appointment at a sleep disorder clinic to pick up a home test and fill out 20 pages worth of questions (no exaggeration). That happened in the fall, and in December, when I’d been cleared for an overnight visit to a sleep lab in Ann Arbor after the holidays, I received a letter telling me that the home test indicated that I did indeed have apnea.

I wasn’t sure how to feel about that.

The public face of apnea for all of us, I think, is an older, easily winded, heavyset man, so when you’re a relatively fit middle-aged woman who runs 3-4 times a week, it’s unsettling to suddenly find yourself in the same club.

This is one reason why, I’ve learned, women are grossly under-diagnosed: not only do we not see ourselves as being vulnerable to OSA, but our doctors are also more likely to guess that depression is the root cause of our chronic fatigue.

The basic breakdown of what OSA is concerns the airway being repeatedly blocked by relaxed throat muscles while sleeping, so that the brain is awoken, time and time again each hour, in order to make sure the body gets the oxygen it needs. This state of intermittent wakefulness means we’re not getting the deep sleep that we so desperately need, and in the long term, that makes a person more susceptible to diabetes, heart disease, high blood pressure and more.

I have mild apnea, which means that my airway is blocked a handful of times an hour, on average. But it’s enough to have run me ragged this past year – to the point that driving a half hour is a labored exercise in fighting off sleep, even following a full night’s “rest” – without my knowing why.

Early this past January, I reported to a sleep lab at 9 p.m. on a Saturday night. The first thing they did was weigh me, and sure enough, the weight that came up was about 10 pounds higher than any I’d ever registered before. Blurg.

But it’s not what you think. It’s not a matter of, hey, Jenn gained weight, therefore she developed apnea. While obesity certainly fits the profile of someone more susceptible to apnea, there’s actually a good bit of research out there suggesting that suffering from apnea can also CAUSE weight gain. Because you’re constantly exhausted, your body craves caffeine and high calorie foods more than usual in order to simply get through the day; and REM sleep is the time during our rest that the most calories are burned, so when you never reach that deep sleep state, this process doesn’t happen.

And while fatty tissue can be the cause of the air obstruction, the causes of OSA may also come down to things like genetics, smoking (not applicable to me), menopause (ditto), sleeping on your back (nope), or having certain anatomical traits: a recessed chin or overbite, a large tongue base, a large neck circumference, a large soft palate, an enlarged uvula, large tonsils, etc.

Back at the sleep clinic, I got off the scale feeling a bit disheartened but still hopeful that the steps I was taking would help me get back to being the person I want to be. I was shown to a colorless room with a bed, a television mounted just below the ceiling, a bathroom with a shower, and a bedstand with a machine on it. The lab tech gave me time to change into my pajamas, and then she came back in to, well, “hook me up.”

To pretty much everything but the TV. Seriously.

Wires and nodes were fed down my pant legs (restless leg syndrome is sometimes

My Darth Vader control panel.

associated with apnea), and also pasted onto my chest, shoulders, back, forehead, and scalp. All the cords fed into a single control box, which the tech hung from a strap around my neck, so I could walk and move around the room before going to sleep.

I wasn’t sure how that was going to happen regardless. I felt (and kind of looked) like El from “Stranger Things,” heading into the Upside Down, and I hadn’t even been fitted with a CPAP mask yet.

In a small way, though, there was a sense of this being one mom’s mini-vacation. I watched the Lions lose their playoff game while flipping through Entertainment Weekly in uninterrupted peace. That part was kind of lovely.

But then, at about 11 (fittingly), which is the time I cited as a typical bedtime for me, the tech returned to pull on the “nose pillow” mask I’d selected – wherein two small, soft, flexible caps rest against my nostrils and blow air through my nasal passages – and turned out the light.

One problem: the tiny hurricane blowing up my nose made the usually simple act of exhaling seem like something I had to figure out. Like, how does this work again? Sweet baby Jesus. This was a puzzle I just couldn’t seem to solve. So after struggling a while, the lights turned on, and the tech appeared and adjusted the settings (thank goodness). And then I slept – with a few additional lights-up interruptions with the tech – for the duration of the night. 

But at 6:30 or so, when they briskly wake you and flush everyone out from the lab, I left feeling like I was getting closer to finally achieving relief. I’d gotten the diagnosis; they had more detailed information from my night in the lab, which would supposedly be processed within the week; and thus I should be on my way to getting my own machine, I thought, and the relief that comes with treatment.

I’m so freakin’ adorable in my optimism sometimes.

Because what happened next was that NOTHING HAPPENED.

For weeks, I received no phone call. No detailed report in the mail. Nothing. So I made an appointment with my doctor, thinking, well, maybe they’d told me that I needed to go back to my doctor to get set up with a machine, and I just missed that because, you know, I’M LIVING AS A HALF-CONSCIOUS MOM ZOMBIE.

So I went to my doctor, who had received a report from the sleep lab, even if I hadn’t. She had no idea why I hadn’t, and why there had been no movement on getting me a Bilevel Positive Airway Pressure (BiPAP) machine.

“I’m not sure where the breakdown happened, but we’ll try to get things moving on our end,” she told me, before sheepishly adding, “I’m really sorry this happened, and that you’ve had to wait so long.”

I nodded, thankful for at least one moment of acknowledgment from the medical community. “Thank you,” I said. “I just want to get this taken care of, now that I know what it is.”

I left the office with a print-out of my sleep lab report and the name and number of the medical equipment office I needed to contact.

I called, and I was told that they were waiting on clearance from my insurance company, and that I’d get a call back the next day.

Nope.

I called again two days later, and I was told that the insurance had cleared it, but that my doctor needed to sign off on it, and that it had not yet been returned.

It may look like an old radio, but I kind of wanted to make out with this BiPAP machine when I finally got it, two months following my apnea diagnosis.

So I made another call to my doctor’s office, and at this point, I’m holding back tears as I literally beg them to get the document signed and submitted as soon as possible.

The next day, I get call from the medical equipment store to schedule an appointment for the following week. And I can barely let myself believe that after months of appointments and wrangling and phone calls, I’m finally, FINALLY going to get some relief.

I went to my appointment. I brought the machine home. And I realized at 11 pm that night that we didn’t have any distilled water in the house, and – wait for it – that’s the only kind you’re supposed to use in the machine.

Cue more tired weeping.

But at long last, the next night, I got to use the machine. And I woke up feeling pretty good.

The second night, I found myself waking up every couple of hours, perhaps just because I wasn’t used to being hooked up while sleeping. Overall, though, after this first week of BiPAP use, I’m feeling noticeably more alert. And perhaps more importantly, I don’t want to bite the head off of everyone who crosses my path. So there’s that.

Plus, despite my fears, the machine is pretty much noiseless as it shuts down my snoring, so Joe doesn’t have to stumble down to the couch each night anymore.

Admittedly, he’s probably not jonesing to make out with Bane, or an anesthetized Miss Piggy, but at least we can both sleep through the night in the same room now. And that’s a start.