Sleep Apnea Treatment – A Journal of My First Week

It has been an exciting week around here. I picked up my CPAP machine on Tuesday and started using it. This is a long post: a day-by-day diary of the past 6 days.

Tuesday was an emotional day. I was so excited that I was finally going to be able to start treatment for my obstructive sleep apnea.  Then I received a message from my doctor. My insurance company was about to deny the request and close the case, because…….get this… had been too long between the time when I first saw her with symptoms and the time the machine was being prescribed. Never mind that the reason there was so much time in between was because said insurance company had denied multiple requests for diagnostic and follow up testing. They were giving her 2 hours to supply documentation of a more recent visit. Two hours, or they were closing the case.

So, my doctors office made other patients wait so they could squeeze me in and get the needed documentation off to the insurance company.  United Healthcare, for anyone who is curious (the CEO, Stephen Helmsley, made $66 million in 2014. You’d better believe I have a scathing letter written. I haven’t decided whether to publish it yet.)

Let me tell you, I have always loved my doctor, but I have often gotten frustrated when it took a long time to be seen or to have a call returned.  I will NEVER bitch about that ever again. She dropped everything and made patients wait so we could meet the insurance company’s deadline.  Now I know that if I am ever the one waiting, it is for a good reason. I mean, I “knew” that before, but it was still frustrating. Now, having been the one who needed the immediate attention, I am very grateful to the patients that waited when I needed something. Does it seem calculated that the insurance company would call them and tell them they only had 2 hours to comply? It does to me. We had already gone through multiple appeals. I believe it was calculated.

So, I went to the vendor pick up the machine. Rather than try and find a babysitter, I brought kiddo with me. A technician was going to show me how to use the machine, and I figured that bringing him along would demystify it for him. He’d get to see what it would look like, what it would sound like, how it was used and cleaned, etc.  I explained to kiddo that we were going to pick up a machine for me that would help me breathe at night and not snore as loudly.

In the waiting area, kiddo asked “mama, are we getting you a machine to help you breathe?”

Me: “Yes, that’s right.”

Kiddo: “So you can be healthy?”

Me: “Yes, exactly.”

Kiddo: “Mama? I need a machine too, so I can breathe at night and be healthy.”

Me: “Well, it’s possible that you won’t. Remember when we got your tongue fixed when you were a baby? It’s possible that you won’t need one. But in case you do, don’t get United Healthcare.”

The lady behind the reception desk told me that United Healthcare denies everything. They have a lot of trouble with them.

The technician then had me fill out a lot of paperwork and showed me how to set up and turn on and use the machine. She fitted the mask on my head. Showed me how to add distilled water to the humidifier chamber.  Showed me how to detach the tube in case I had to get up, so I wouldn’t have to take off the mask. Explained how to clean it.  Explained that if I need to travel, it doesn’t count towards the carry-on limit, since it is a medical device (and gave me a copy of my prescription to bring along just in case). I had to sign paperwork that showed I understood the requirements of my insurance company. They had given authorization for 3 months.  In order for them to authorize it for the remaining 7 months needed to pay off the cost of the machine, I needed to meet three requirements:

  1. Use the machine for at least 4 hours per night, at least 21 out of 30 days.
  2. Go back to the doctor who prescribed the machine sometime between day 31 and 90
  3. My doctor needed to submit documentation of the above, and a statement that said I was benefiting from use of the machine.

Given my experience, I fully anticipate that even if I meet the requirements, United Healthcare may try and deny the request for the subsequent 7 months. As such, I scheduled an appointment with my doctor for late March, which will allow some time for an appeal if needed.

My kiddo knocked over a model head with a sleep mask fitted over it. Thankfully it didn’t break. When it was time to take the machine home, I was surprised by how light it was in the case. Lighter than the laptop and case I carry to work. It felt like such a victory to finally be taking this thing home.

Night 1

The first night I used it was HORRIBLE. At first it was so difficult to exhale.  I needed to open my mouth. I had planned to try to use the machine all night (not just the minimum 4 hours required by the insurance company)…..but after an hour or two I couldn’t take it anymore. I was scared. I thought “now I see why people don’t use these because they are so uncomfortable. I don’t think I can get used to this. ” I went to check how long it had been (the machine tracks how long you use it, how many breathing events you have, air pressure used, how well the mask is sealed, how many times you take the mask off and on, and probably other data. The machine has a wireless modem that transmits the data to the vendor each morning. Your doctor can request and review this data for follow up).

The machine said it had been 5 minutes (the 5 minutes I had tested it earlier in the day).  So I knew something was wrong because it felt like it had been almost 2 hours. Turns out I had the machine powered on, but there was no air pressure flowing because I didn’t press the button a second time or something.  No wonder it sucked. I was nearly suffocating myself.

Once I turned the machine on properly, I realized that if the pressure was actually on, you couldn’t open your mouth without air blowing out of it, which felt really weird and unpleasant.

So, then I had trouble falling asleep. Not only was there a mask on my face blowing air at my nose, but I felt wide awake from the adrenaline of having nearly suffocated myself. I did fall asleep, but I woke up a couple times, and both times it took me a very long time to fall back asleep with the mask on.

When I woke up in the morning could tell I had been breathing better, but I felt tired from not getting enough hours of sleep.

I noticed a sticker on the machine that said I could track my sleep health on the company’s website. I went online and signed up for an account. It had me put in some details including the serial number and device number of my machine.  The next day it would start showing me some of the data that was transmitted wirelessly, so I could see how well the machine was working before going to see my doctor. They also had some video tutorials and tips.

Night 2

The second night went much better than the first.

When I was 21 I got a job at a summer camp in the Sierra mountains (Northern California). The way I felt when I woke up reminded me of  how I felt waking up after my first night sleeping in the cabin breathing in cool, low humidity mountain air all night. Very oxygenated and refreshed. My body was remembering redwoods and pine needles,  as the association was very strong.  Is this how normal people feel after sleep?

I still did not get as many hours asleep as I would have liked. I used the machine for 7 hours 42 minutes that night,  and that includes the time it took me to fall asleep several times. It took me a really long time to fall asleep with the mask on, and that happened again each time I woke up at night. So I only got maybe 5 or 6 hours of sleep -not quite enough.  But it was only the second night,  and the fact that I felt significantly better in spite of fewer hours of sleep is really promising.

I also found that in order to breathe comfortably through my nose, I need to push my lower jaw forward. This is interesting to me as when I was a kid I had braces to   “correct” an underbite. I wonder if the underbite was my body’s way of compensation for airway obstruction.

I felt extremely grateful and optimistic after night two. But very tired during the day (because now it had been two nights on fewer hours of sleep). I guess you could say that I felt like I was sleeping in  someplace with very fresh air….for not enough hours.

I logged into my account to see my data. The website gave me a score for the previous night, based on how long I used the machine, the quality of the mask seal, the number of breathing events per hour, and how many times I took the mask off. There was a cheerful “keep it up” message and some suggested tips and tutorials.

My sleep study that had diagnosed me with sleep apnea back in December said I had 37 breathing events per hour. On night 2, I had 0. 5 events per hour. WOW.  Over a 99% difference! I knew then that the machine was working and I needed to stick it out and get used to it. Once I got used to falling asleep with the mask on, things would feel great.

I posted a selfie on Facebook and people said they could see a difference. My complexion was glowing and I looked rested, they said.

Night 3

Sleep was better than the previous night. Still took a long time to fall asleep but I started early because I was so tired. Went to bed at 8:30. So I probably got a solid 6 hours asleep. In the morning I still felt like I had been breathing fresh air,  but a little subdued/ slow. My energy picked up later in the day. I had good focus at work. Number of breathing events per hour: 0.4.

Night 4

I was definitely getting  more comfortable falling asleep with the mask on. And falling back asleep at night didn’t seem take as long. My kiddo had a tantrum in the middle of the night about something that happened in a dream. “AHHHHHHHHH! MY TELESKATES BLEW AWAY!!!!” It is difficult to talk with the mask on, because air blows out of your mouth. So I had a conversation with my husband about how now that I had the mask, I would like him to do more of the “first responding” during the night. Kiddo was persistent. “NO I DON’T WANT TO SNUGGLE WITH YOU!!! I’M GOING TO GET MY MOM AND I’M GOING TO NURSE!!!” He was not pleased when I told him the nursies are sleeping (as they always do at night.). So I didn’t feel particularly rested when I woke up, but I still felt more refreshed. More selfies, more compliments on how rested I looked.

Number of breathing events per hour: 0.1

Night 5

It felt like it didn’t take as long to fall asleep.

I am pretty sure I slept for at least 6 hours IN ONE STRETCH! If I were a baby, I would meet the medical definition of “sleeping through the night.” I don’t think this has happened since before I was pregnant (and possibly long before that; I don’t remember and apparently I have had symptoms for years.)

I felt amazing this morning. I walked to the grocery store and pulled a full cart of groceries home, uphill…..and didn’t even need to sit down afterwards. In the past, I would have crashed on the couch for a few minutes. I was able to immediately get kiddo ready for his swim lesson. During the swim lesson, I stood the entire time instead of sitting down. My energy started to lag A LITTLE BIT mid-afternoon. I think I will probably fall asleep easily tonight.

I’ve named my CPAP machine “Sam.”

I got an email from the device company telling me that I had earned a “silver badge” for using the machine for at least 4 hours per night for 5 nights. It congratulated me on the badge and told me what I have to do to earn the next level badge. I was amused. I guess they are trying to motivate people to use their machines. My husband said “you are a CPAP scout.”

Number of breathing events per hour: 0.4

So, there you have it. The first 5 days of CPAP treatment. The treatment is obviously doing it’s job, since I have consistently been having less than 1 breathing event per hour while using it (as opposed to 37 per hour when I had my sleep study). And as I am getting more used to the mask, I am falling asleep quicker. I feel optimistic that it will only improve.

Some more feelings I’ve been having:

I have been crying a bit this week. Gratitude and relief. Wonderment too. I can’t believe I went through the entire postpartum period under-oxygenated. I knew I felt like shit, but I didn’t know it wasn’t normal, because I didn’t know how my “shit” felt different from someone else’s “shit.”

I wonder if my kid was such a crappy sleeper as a baby because my snoring woke him up? My husband tells me that my snoring was at its worst during pregnancy and postpartum.

I’m relieved to be getting enough oxygen when I sleep.

I’m very thankful to my doctor and her staff for jumping through all the insurance hoops.

I have shared a lot with friends (and will share a lot on this page) about my diagnosis, treatment, and hassles with my insurance company. I’m sure some people wonder why I am “oversharing” about a personal medical issue. Here is why:

It is important to me to demystify and de-stigmatize it.

When someone first suggested to me that I had symptoms of sleep apnea, the first image in my mind was of the Biggest Loser. I used to watch that show years ago before I knew how harmful it is. And I remembered them showing the sad fatties feeling sorry for themselves because they had to use a breathing machine.

So anyway, when I first realized I might have sleep apnea, my first thought was “I don’t want my son to see me using a machine. ” And then I challenged that belief, and realized that if my son sees me taking care of myself by treating a medical condition, it is a GOOD thing, and nothing to feel ashamed of.

And when I started talking about it, so many people told me they (or a family member) had one. Hearing about the experiences of other people made me feel less scared.

So I share about my experience, in case there is someone out there who is scared to get treatment because they feel ashamed or scared of the unknown or what have you.

That’s all. Thanks for reading! If you have a CPAP machine, I would love to hear how it’s made a difference in your life. Leave a comment!

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3 thoughts on “Sleep Apnea Treatment – A Journal of My First Week

  1. I’ve been using a CPAP for 11 years now. I can’t sleep without it anymore – partly because I wake up and panic when I can’t breathe, but partly it’s that the habit has become comforting and signals that it’s time to sleep. When they build a sexy one, though, I will pay thousands and thousands of dollars for it.

    Liked by 1 person

  2. Pingback: A Weighty Experiment | Power, Peace, and the Porch Gym

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