INCOMPATIBLE- What do you mean I’m “CPAP Machine Incompatible”!?
Life never fails to amaze me. Allow me to make a sports analogy — basketball is one of my favorite sports. It seems to be the best way for me to describe what I am feeling right now. If you don’t like basketball or don’t understand, I hope I can write this in a way that makes sense. Having been to the sleep doctor a couple of weeks ago, certain health decisions have revealed themselves, leaving me terrified and struggling with coming to grips of what must happen for me to live a fuller life, a happier life, a better life. I am just going to share a portion of my treatment plan for now as other steps must be addressed first.
One day everything could be going well, and the ball is in your court. You are feeling good, you have a smile on your face, and the basket is easily within reach. Then within seconds, you lose the ball because you trip, and it goes flying out of bounds or another person picks it up and dribbles it all the way down the to the other side of the court and scores the basket that was meant to be yours. Basically, making all the work you just did to move the ball to your basket seem meaningless.
Sometimes you have the energy to bounce back immediately and reclaim what is rightfully yours and bring it back the starting point, so you can make your initial shot. Other times, all you can do is stay down and watch the ball drift further and further away from you and the ref calls foul — a reprieve from chaos and an automatic, uninhibited shot at the basket. But just as life can be unfair, referees can be unfair as well and just let the other team have it.
You just watch, maybe you eventually got up, but you watch none the less as the opposing player dunks the ball with all the enthusiasm they can muster and instead of points being added to your side of the scoreboard… It’s added to theirs.
I’ve often felt like my body is not on my side. Just when I think I have it down pat and figured out- it decides to level up and scream bloody murder for something else. Just when I thought I was winning the game, my health decides it’s time to steal the ball and push me to the ground.
Sitting in a doctor’s office talking about options for treatment because the initial treatment has failed, is devastating. That is how I felt this last week, when I was sitting down to have a heart to heart with my sleep doctor. (Having been a week I am feeling much better about everything, but the first initial shock was hard to swallow. I had to take some time to absorb everything. And some of it I am just not ready to share yet.)
I don’t know how to describe it, but my body stopped accepting the CPAP machine. Every time I used it, I would wake up with a searing headache and pain through my sinuses. After I cleaned the filter (see my YouTube video: CPAP filter woes) and made a few other adjustments — my doctor and I thought we could get me back on the CPAP. But the same pattern was still happening with me taking the mask off only after an hour of use and waking up with a searing headache through my skull.
My doctor said this, “I think we need to look at other forms of treatment because you are CPAP incompatible. Are you open to that?” I had no idea what most of these treatments would look like or how drastic some of them might be, but I agreed that I was open to start investigating my options. He went through each one in detail and how effective they would be. (However, I am only going to share the first step in the treatment plan because it is set in stone, and I want to spend more time in another blog post going over other options.) To understand my sleep apnea better, let me give you a little lesson on the great spectrum of obstructive Sleep Apnea.
There are three levels of sleep Apnea: Mild, Moderate, and Severe. The level of obstructive sleep apnea you have is determined by how many breathing incidents you have while you are sleeping. A breathing incident is when your tongue and throat muscles relax and end up obstructing your airways. When this happens, your body wakes you up so you move those muscles out of the way, so you can breathe and get oxygen again. For me, I do this between 35–40 times a night, which is well into the severe sleep apnea category.
After my doctor explained all of this to me, he went over different treatment plans which most were rendered ineffective because they have only worked for people that fall in the mild and moderate category of sleep apnea. (I will go over those in another post so you can learn what my options are and see just how limited they are for someone who has sleep apnea as severe as I do. It is kind of astounding really.)
However, the first treatment used to help improve Sleep Apnea is to get your tonsils removed. My Sleep Doctor and I had talked about this a couple of years ago and he had me go see an ENT (Ear, Nose, & Throat Doctor). Back then, the ENT said that my tonsils were just fine, they weren’t bigger or smaller than any other tonsils and said he didn’t see a reason to remove them since the CPAP machine was working. He made it clear he didn’t like removing tonsils from adults and me being like 24 at the time, I was most certainly not his preferred patient. Therefore, after that visit, I kind of brushed that treatment option to the side because I didn’t think I would be able to convince and ENT to do the surgery. So I was surprised when my Sleep Doctor brought it up again.
Fast forward to my appointment with my Sleep doctor a couple of weeks ago because when I told my him about my first experience with the ENT, he asked me to go again. The sleep doctor told me to make sure that I explain that I have severe sleep apnea and to tell them that I was CPAP incompatible. I was a little nervous to go again, but he made it clear to me that we had to figure something out because if my sleep apnea was left untreated, it would lead to other very serious health problems like diabetes, heart disease, or stroke to name a few. Probably early onset because my sleep apnea is getting worse at a much faster rate compared to others and I’m much younger than your average sleep apnea patient.
To prepare for my second visit to an ENT, I did some research on why adults get their tonsils removed and two reasons stood out to me that I knew that I could use as ammo if the ENT was going to say no to me again. They were this: 1) Have a hard time swallowing certain foods. 2) Not able to get enough air during a physical activity that you clearly are “in shape for”.
Thinking back on my life, I realized that I had been dealing with these things my whole life. I didn’t know any different, so I just made allowances for it. For example, I never eat without a beverage because I know it will hurt to try to swallow and some foods do get stuck every time. (Like pasta is super hard for me to swallow, but with water, it gets down just fine.) Or I’ve shied away from physical activities like running or sports because I can’t keep up with other people and I always huff and puff for air much sooner than other people. As a kid, I even got an inhaler because my pediatrician said I had “exercise induced asthma”. After reading all of this and seeing its applications in my life. I was stunned and I knew that my tonsils had an expiration date, and I would do anything to get them out. Now it was all about convincing the ENT.
The day of the ENT arrived, and I was ready. I was ready to fight to get my tonsils out and I was equipped with the line of, “Well, if you aren’t going to do it, who can I call that will remove my tonsils.” I did go see a different ENT than the first, just to get a second opinion and increase my chances of getting my tonsils removed.
When my new ENT walked into the room, she started by asking me, why I wanted to get my tonsils out and I told her my sleep doctor wanted me to tell her, as well as what I found in my research and how it connected with what I have been experiencing my whole life. She then asked to have a look.
She felt my throat, looked in my mouth, and looked up my nose. She said something along these lines, “Well your tonsils are just there. They aren’t smaller or bigger than your average tonsil” In this moment, I just thought, “Great. That is what the other ENT said…” However, what she said surprised me. “But that really doesn’t matter because the ratio between your airways and your tonsils to narrower than what is considered average. Your whole anatomy of your airways is too narrow. When I look in your mouth, I can’t even see your uvula like I can normally see when looking in someone’s mouth.”
I knew it. I wasn’t crazy. I kind of had this suspicion as I believe my sleep doctor did as well. There had to be more of a reason for me to have this severe of sleep apnea that was progressing at a faster pace. No wonder my sleep doctor didn’t accept the news of the first ENT.
On a diagram, the current ENT went through the operation to get my tonsils out but then said, “You also said that you struggle with seasonal allergies as well, correct?” I said yes and said that when I had allergies the CPAP machine was a for sure a no go. I didn’t even bother putting it on. She sprayed some stuff up my noses and my nose instantly cleared up. She smiled and asked, “Breathing better?”
I was astounded. Whatever she sprayed up my nose cleared up room I didn’t know I had, and I was breathing deeper than I thought I could. I told her, “Absolutely!” I hadn’t realized I was breathing so shallow through my nose before. She explained that my nose was small as well and with any kind of congestion, it would interfere with my breathing more than other people and that it wasn’t surprising that when it is allergy season it was an absolute no go with the CPAP mask. Not even the nose sprays to help with seasonally allergies could take down the congestion enough because of how narrow the airway is. Therefore, not only is she going to take out my tonsils, but my adenoids as well. Adenoids basically serve the same function as tonsils, but for your nose instead of your throat. I didn’t have enough room to house them either.
She also said that she didn’t think she has to do anything with my septum, but would have a look with a camera as well to investigate my airways more when I’m under to get a better understanding of how narrow everything is and to see if there is anything else we need to talk about. I have to say, when I left the ENT that day I felt victorious and excited to be getting surgery. I was giddy when I told my family members.
Getting my tonsils and adenoids out will not cure my sleep apnea. There is no cure for sleep apnea. There is no reversing it either, it progressively gets worse with time. There is only hope in pushing off progression with treatment. However, the hope with this surgery is to push off other treatment options and hopefully get me back on the CPAP machine. This might be possible with more room for the air to move in and out of my body.
I can only keep my fingers crossed as my next steps are to get this surgery and then undergo another sleep study with my sleep doctor to get new data of how I am doing without the tonsils and adenoids. If it doesn’t help me get back on CPAP, then more serious treatment options will be discussed and pursued.
But for right now, I say goodbye to my tonsils and adenoids on June 10th and I couldn’t be more excited even though recovery is harder and slower in adults. Here is to two weeks of chocolate pudding and fudgsicles to me!
YouTube Episode Available — Click to Watch : What do you mean I’m CPAP Machine Incompatible??