20 October

Recovery Journal: Man Meets Machine: A CCap Sleep Apnea Mask Challenges Me, Teaches Me To Take Responsibility. I Did.

by Jon Katz

Photo By Jon Katz, Graphic Treatment by Maria Wulf

When it comes to healing, I often think the worst enemy is us, and the attitude we bring to our health.

Yesterday I got a powerful reminder to look inward when it comes to my health and not just make phone calls to other people asking for solutions.

I never expected to have a meaningful spiritual experience with a sleep apnea hose and mouth mask. And with a digital box, I call “my machine.” The box is the wizard in all of this, it calls the shots.

I was diagnosed with sleep apnea a few weeks ago, I got my mask and air machine earlier this week. After two days, I had to switch to a bigger mask, one that covered my nose and mouth.

I had some trouble with this new mask. In the middle of the night, the air pumped into the mask to help me breathe got strong and cold and loud. It lifted the mask a bit off my face, breaking the seal that kept the air where it belonged.

It was too strong. It was cold. It was loud.

I called my Customer Success counselor in the morning and we had a talk about it.

He wasn’t sure what was happening. Then another counselor called me and we had a talk that shook me up, made me think, and taught me an important lesson about health, spirituality, and responsibility.

We are so used to calling people and looking elsewhere for answers and blame, we sometimes forget that we can and should make our own decisions and take responsibility for our lives.

For me, healing is half and half, one half good doctors, the other half me. Neither one of us can do it alone, or should. I don’t blame them when things don’t develop precisely as I would like. When it works, we did it together, When it fails, we failed together.

I explained to Amy what was happening. She was very nice and also careful. She seemed concerned that I might blow up and scrap the whole project. I reassured her that I thought the mask was doing me good, I wasn’t looking to abandon it, I was looking for the people who sold it to me to push some buttons somewhere and fix it.

Amy was patient and direct.

The reason the mask was blowing out after a while, she said, was because it was trying to help me breathe.

The doctor told me my heart is stopping about 80 times an hour during the night, waking me up each time. The machine is trying to provide the air and the oxygen that my body isn’t producing. This could improve my life greatly, even save it.

This shocked me, it never occurred to me that the machine was doing its job, trying to help. I just assumed it was broken because it wasn’t working the way I wanted.

I thought the machine must be malfunctioning.

But I’m the one that is malfunctioning, the machine is fine, it’s just trying to help.

The machine is set to be mild when pumping the air at first. It was set to be static for four minutes, and then it would react to my breathing, the less I breathed, the more the air, the more I breathed, the less.

It starts at level 4.1 and goes up to 10 or 12. The higher it goes, the harder time I’m having breathing properly, thus  the stronger the air pressure. It is strong, it can blow right through the sealed mask and set off an alarm on the breathing machine.

But the idea behind the machines is that it starts – “ramps up” as they put it, slowly long enough for the patient to fall asleep. Then as it gets louder, quicker, and more powerful, the patient is supposed to be asleep.

This was a kind of spiritual revelation to me. The machine was doing its job, trying to help me breathe. It wasn’t malfunctioning, that was me.

Now I  had to do my job, the rest was my responsibility, not the mask. Amy approved. “I admire your attitude,” she said, “you just have to keep at it, figure out what works for you. You will be grateful you figured it out.”  I am already.

Amy’s advice struck me as very true. Last night, the machine started its harder blowing an hour or so after I went to sleep,  and I heard a strong noise from the breathing tube. Okay, I thought, the machine is telling me I’m not breathing strongly enough. I’m going to blow right back.  We’re going to communicate.

 

  

 

I took deep breaths, from the mouth and the nose. Every time the machine pumped a blast of air at me, I blew back, this went on for five or ten minutes. Then I watched the monitor,  I saw the number was declining, back down to seven, six, five, and then four. The mask sealed up. The machine got quiet.

The air stopped puffing heavily. I went back to sleep and slept for four hours.

I’ve also figured out how to adjust the mask when air leaks out, I know how to move the strap. There is nothing wrong with my machine.

“Let’s do this,” I said to the machine, keenly aware I was talking to a machine at 3 a.m. softly enough so that I wouldn’t wake my wife up.

Back and forth we went, the machine blowing on me, me blowing back, opening my mouth as well as my nose when the going got brought. It worked.

Amy was right. The machine is doing what it’s supposed to do. My turn. Somewhere in the midst of all this blowing, I fell asleep, just as I was meant to do.

When I woke up the monitor told me I had slept for 7.1 hours, which might be a lifetime record. I feel good and strong this morning, different than I have felt for a very long time.

The machine and I worked it out. It helped me, I helped it, and we did the job together.

Amy was right. I did figure it out myself. When the machine leaks air a bit, I pull on a strap and it tightens.

If I learn to breathe strongly when necessary, the machine is happy to back down. If I’m not breathing correctly, it will step in. There is nothing wrong with the machine. I’m the one with sleep apnea. Once I fall asleep, I don’t care what the machine is doing.

What’s the lesson for me? Don’t always look to doctors and specialists to tell me how I am and what I should do.  Don’t pick up the phone so fast, try and take a deep breath and think. As much as I respect my machine, it is not smarter than me.T

Ultimately, my health is my responsibility. The doctors have no idea how I will react to puffing air in the night.

I know now that if I work at understanding this machine, and experimenting with different ways to respond to it, I will figure it out. And I did.

I feel sometimes that we are so disconnected from our bodies and our spirituality that we – or should I say me – just leave it to others to solve the problems of our health.

This summer has awakened me to my own responsibilities. The doctors and nurses are helpers and supporters, they are not miracle makers who can solve all of their problems with their pills and machines. They can prescribe all the insulin they want but if I don’t do my carbohydrate homework every day, things can go South.

At some point, I just have to stand up and say this is your part and this is mine, and I’m responsible for mine.

The back and forth with the thing I call “the machine” was very spiritual to me, a test of wills in a way, but also a partnership. I love that we worked it out together.

Together we managed to figure out the best night of sleep in my life that I can remember. There is surely a lesson there.

And I finally get a good night’s sleep, maybe I can do this other nights.

A machine taught me a good lesson. I heard it and felt it.

7 Comments

  1. It sounds like you’ve developed a rather intimate relationship with “the machine”. Maybe it’s time to give it a name – something pretty like Airiel. She will most likely be spending many more nights with you and deserves better than “the machine”. ?

  2. Hey. My husband has been struggling with masks for months. It’s not easy. But I wanted to mention there are some people, one man in particular, on YouTube who are a wealth of information. Really knowledgeable. My husband got some great tips. And he’s been working with all the experts. Good luck.

  3. I’ve found, for me, that I can’t stand the ramping up of my machine, or I feel I’m suffocating. So I prefer the straight on full force from the start! I can the breathe great and relax and sleep. I’m glad you keep working on it and are determined to make it all work for you.

  4. Jon…
    I’ve had my current CPAP unit for almost (20) years. I’ve been through two sleep studies with it, and settings have not needed to change. It’s been very reliable.

    This unit has two features my older CPAP did not:
    • A “ramp” feature to gradually build the pressure at the start.
    • Automatically reduced pressure when I’m exhaling.

    I struggled with masks for the first few years. Two valuable lessons about them:
    • Masks are expendable and not permanent. Medicare permits changing the “cushion” (not the frame) of my mask every two weeks, as well as the replaceable filters in the machine. They have a schedule for replacement of other supplies.
    • Dust/pollen is the enemy. I suffered through frequent, day-long sneezing attacks until I began washing the mask and hose nightly, and the water chamber at each cushion replacement.

    Not perfect yet, but much, much better.

  5. You are always a light and motivating spirit to look at any situation/problem/opportunity from all angles – thanks.

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