The View from a Drawbridge

My body tries to kill me hundreds of times a night, and even a few times a day, and it has been helped quite a bit by many outside forces over the years. I know that sounds dramatic, but hear me out. It could very well be happening to you, too.

Before we get into the weeds here, I want to state that I have no medical training whatsoever. You should never take the word of some anonymous person in cyberspace for your medical advice. Always consult your medical professional. I’m only describing my personal experience and using common definitions readily available from reputable medical websites. Also, I’m talking about Obstructive Sleep Apnea, not Central Sleep Apnea, which I have no experience with. CSA is rare, and has something to do with the signals your brain sends to your breathing muscles. I have no personal experience with that.

Let’s start with an extremely oversimplified explanation of OSA (Obstructive Sleep Apnea):

Basically, your throat muscles relax to the point that your airway becomes so narrow that you stop breathing, or at the very least, can’t get enough air. If you’re lucky, that startles you awake. If you’re not, you die. In extreme cases, this can happen 30 times or more each hour, all night long, and can cause snoring. Sometimes it happens 5 times an hour, but your interval before you resume breathing might be so long that it could freak out anyone who happens to be sleeping in the same room with you.

One time I shared a hotel room with my sister, and she poked me and shouted, “Barb!” “Wha…?” “Breathe!” “Jesus, how have I managed to live for the past 48 years without you poking me awake?”

And with that, I rolled over, and, I’m sure, stopped breathing again. We were both really exhausted and pissed off at each other the next morning. But then, that was her default mood with me, whether we shared sleeping quarters or not.

Loud snoring is an excellent indicator that you might have OSA, but it’s possible to have OSA without snoring. Other symptoms include:

• Your partner reporting that you stop breathing while you’re sleeping.
• You snort, choke, or gasp, whether you remember it or not.
• You wake up gasping for air.
• You wake up and your heart is pounding.
• You wake up with a dry mouth.
• You have headaches in the morning.
• You have trouble staying asleep.
• You have to get up multiple times in the night to go to the bathroom.
• You’re extremely sleepy during the day.
• You have trouble paying attention during the day.
• You’re irritable.
• You might even stop breathing while awake. (I do this. I start daydreaming, or get really into a movie. And then I suddenly take a big gasp of air.)

Anyone can get sleep apnea, but you are at increased risk if:

• You are obese.
• You inherited a narrow airway.
• Your tonsils or adenoids are enlarged, or your neck is on the thicker side.
• You are male.
• You are older.
• It runs in your family.
• You use alcohol or sedatives.
• You smoke.
• You have trouble breathing through your nose.
• You have congestive heart failure, high blood pressure, type 2 diabetes, polycystic ovary syndrome, hormonal disorders or prior stroke.

So, yeah, It’s important to take Obstructive Sleep Apnea seriously, or your body could very well kill you. That seems a bit counterintuitive, doesn’t it? It’s just one of the many design flaws in the human body that makes it obvious that Intelligent Design is bogus. And before you say that it’s also an argument that Evolution is bogus, remember that it’s our medical intervention that keeps all of us with these design flaws alive to pass these design flaws on to subsequent generations. As flawed as our health care system is, I am grateful for it in that I’m still here. In Ancient Rome, I’m fairly certain I wouldn’t have made it past my 30’s. But as usual, I digress.

So, we’ve established that my body is trying to kill me. But I didn’t know that for certain until the 90’s. Oh, there had been hints. For instance, I’ve had chronic sore throats, but doctors throughout my life have refused to remove my tonsils because, apparently, I’ve got holes behind them, and they’re always carrying a low-grade infection, so they were afraid of surgical complications. (Thanks loads.) I’ve also been told that I have “chronic thickening of the adenoids”, and that it was something I’d just have to live with. (Nice.) I’ve almost never been able to breathe through my left nostril, but it wasn’t until this year that a doctor suggested that I might have a deviated septum and should see an Ear, Nose, and Throat specialist to see if surgery would help. [So every doctor I’ve been to for the past 60 years has dropped the ball on that one. (I have an appointment with an ENT specialist in late June, which was their earliest availability.)]

Anyway, someone finally decided that I should be tested for sleep apnea in the 90’s, while I still had decent enough health insurance, so I went in for a sleep study. It was kind of fun back then, because they hadn’t figured out how to do them remotely yet. You had to go into a wing of the hospital in the evening, and were checked into a room that looked like a high end hotel room. They hooked you up to a ton of wires on your head and chest and tucked you into bed, and when you woke up the next morning, you got to leave, and your doctor told you the results. Sure enough, I had sleep apnea.

I can’t remember why, but for some reason, they had me do a second study years later, and that one was at the same facility, but wasn’t nearly as fun, because the guy in the room next door sounded like he was fighting for his life all night. I mean, he was gagging and gasping and choking and shouting out like he was being attacked by demons. I really felt sorry for him, but it made it impossible for me to sleep. (You’d think a sleep study clinic would have sound proof walls.)

But in the end, it was all a moot point. Yes, I had OSA. Yes, I needed a CPAP (Continuous Positive Airway Pressure) machine to help me breathe through the night. No, my insurance company would not cover that, even though they paid for the sleep study, accepted the diagnosis, and knew that the diagnosis indicated that I had something that could be potentially fatal. And back then, I was poor as dirt, and the machine, and its maintenance and monthly supplies, were way out of my financial reach. So nothing came of it. OSA was trying to kill me, and my insurance company was trying to kill me, too.

And then I fell on even harder times, and because I lived in a red state, and wound up in a job with no union, I had an employer who did not provide me with any health insurance, and the federal government at the time was not offering anything that was even remotely obtainable for the common man, I went a good ten years there when OSA was the least of my worries. I wasn’t even being treated properly for broken bones, and I lost sleep from the fear of ever needing emergency surgery. It would have made me lose my house. So the State and Federal Governments were trying to kill me, too.

Then, through pure, dumb luck, I managed to get a union job in a blue state that paid so well and had such excellent benefits that I genuinely thought I was dreaming. I was just starting to get my financial head back up above water and focus on taking better care of myself when I met the man who would become my Dear Husband, and of course he was the one who reminded me that I stopped breathing at night.

Oh yeah! That. How sad that I had gotten used to it by then. Okay. This was 2018, and sleep studies had come a long way since the 90’s. You did them at home. And yes, I still had OSA. But this time, the CPAP machine and supplies were covered by insurance.

So, happily ever after, right? Well… no. For the past 8 years, I’ve been tethered every night to this infernal machine like a junkyard dog. If I feel the urgent need to pee, I can’t just get up and run. I have to first unleash myself. While using it, I have to cover my eyes with something, because jets of air leak from the mask and make my eyelashes flutter, and that keeps me awake. And if I turn to the side, it breaks the seal on the mask even more, and it makes a loud hiss, and that definitely wakes me up. So in order to sleep, I have to find a position with no mask contact with anything, and not move an inch all night. So I wake up every morning feeling like my neck has two hot pokers jammed into it for the rest of the day. It was beginning to feel like even my CPAP machine was trying to kill me. With each passing week, the concept of not breathing was becoming more and more attractive.

There had to be a way off this machine. I was willing to try anything. I mean, a tracheotomy was starting to look appealing. It was that bad.

But then I began reading things about oral appliance therapy. There are devices out there that people are getting good results with. The extremely oversimplified basic theory behind them is that if your sleep apnea is mild to moderate, and your jaw is thrust forward, your relaxed jaw muscles can’t make your airway collapse enough to block your airway. These things are like upper and lower retainers that force your lower teeth to remain slightly in front of your upper teeth all night. You have to be careful to do exercises in the morning so they don’t throw your bite off, though. Anyway, I was willing to try anything. Sign me up.

But, beware. Whenever you put out the smell of desperation, there are bound to be shysters out there who will be happy to take advantage of you. Unfortunately, I stumbled across one of those. I found someone in my insurance company’s network, thank goodness, so I knew the cost of the visit would be covered.

But during the visit my inner voice kept whispering to me. “Danger, Will Robinson.” It started off okay. They took a full set of dental x-rays, the kind where you stand, and the machine swings around you. But then, the doctor spent 15 minutes with me at most, took a few cursory measurements, and all the devices she showed me looked awfully flimsy. I did not see how any of them could last that long. And she repeated something that another staff member had said. If for some reason my insurance company would not cover the device, I’d have to pay in full, but they saw no reason whatsoever why they wouldn’t cover it, as they had done so with other patients before.

Hmm… I decided to check with my insurance company myself before making a commitment. They were confident it would be covered, but no, it wasn’t. My insurance plan with Aetna does not cover devices with the code K1027, as they are considered “experimental and investigatorial”. It’s a good thing I checked, because I would have been on the hook for thousands of dollars, for a substandard device.

I found out that they would cover devices with the code E0486-5 or E0486-8, though, so I called the doctor’s office twice to see if they offered any of those, one time leaving a message with the receptionist. They never even bothered to return my calls. That makes me think they knew darned well that the situation would play out the way that it did. Why should they care. They’d have gotten their money either way. It would have just gone the collection agency route.

Of course I could be totally wrong, but I am definitely not going to be leaving them a good review on Yelp. While this medical provider wasn’t trying to kill me, in my opinion they seemed to be trying to rip me off by taking my money and giving me a cheap appliance. And that’s just wrong.

After having wasted a couple months dealing with those fools, I had almost given up in despair, but the feeling of hot pokers in my neck made me soldier on. I remembered that I had a friend on the East Coast who worked in the oral appliance industry (Hi Vicky!) and she recommended a particular brand of appliance, and suggested that perhaps I look for someone in my insurance network who offers that brand, as they were probably more reputable. And that’s how I came upon the doctor I wound up seeing.

It took a while to get in to see her, and wow, what a complete difference it was. They did do the same type of x-ray, but it was just the tip of the iceberg. She also had her technician do this fascinating 3D scan of the inside of my mouth. It was kind of like an ultrasound for your teeth. I watched the image create itself on screen in real time. She said my insurance didn’t cover that, but she found it so valuable that she just did it and didn’t charge me for it.

With that scan, if I chose to move ahead with the process, they’d be able to make a 3D print of my teeth that they could use as the model on which to fabricate the appliance so it would fit me perfectly. Gone are the days when you have to bite down on that disgusting plate of foul tasting modeling gel that then tries to slide down your throat and threatens to gag you. (You young people have no idea how good you have it.) I wish I had thought to ask for that 3D print of my teeth if it remained in tact afterward. It would have been cool to see.

She also did much more detailed measurements, spent about an hour with me, discussed the pros and cons of multiple devices that were by no means flimsy, and gave me a bunch of exercises to do to strengthen my mouth muscles. She also discussed my breathing habits, and she was the one who finally suggested that I see an ENT and gave me a referral. Her office got the preauthorization from Aetna for me for the device.

The only caution they gave me about payment was that they begged me to please show up and actually pick it up, because if I didn’t, Aetna wouldn’t pay them for it. To that, all I could say was, “Trust me. I would crawl naked through a field of ground glass to get this thing.”

I’ve been using it for a few weeks now. I sleep more deeply than I have in years. I wake up feeling an odd mix of refreshed and groggy as if I could sleep a lot longer, so I don’t know if it’s working or not. I’m getting used to the way it feels. I don’t snore, and I have no neck pain when I wake up. Bliss. Nor do I walk around with those stupid mask marks on my face. Here’s a video short of my little acrylic hero itself.

I do have a follow up with her in a few weeks, and then I have another sleep study to make sure the thing is truly keeping me breathing through the night. Please wish me luck.

This has been a long, winding road through what has felt like a killing field, and I want to move on. I just want to be able to breathe easy and not have anyone else be in charge of whether that happens or not. I don’t think that’s too much to ask, do you?

When I think about how indoctrinated we all were as children to believe that America is the greatest nation in the world, it makes me angry. If we’re so great, our healthcare system wouldn’t be such a nightmare to navigate. We are one of the richest countries in the world. I am relatively educated and am still savvy enough to know how to access what resources are available to me, so I am one of the lucky ones. But even I find the struggle daunting and extremely frustrating. I shudder to think what it will be like when I’m more frail, or, heaven forbid, less mentally capable. It’s a terrifying prospect.

Huh. Maybe that’s why I struggle to breathe.