The Bellows

If you’ve been following this riveting tale, Pt 1  told of the proddings and pokings that uncovered some untoward things going on in my innards. Like Atrial Fibrillation. And Sleep apnoea.

Let’s leap into the windy world of The Bellows.

The sleep doctor ordered me to  have a trial with one of those machines that pump air into your lungs when you stop breathing at night. They call it an event. The stopping to breathe thing. CPAP is what they  commonly call the bellows. Short for Continuous Positive Airway Pressure.  In fact there are many different  kinds of PAP’s depending on what is causing the lack of breathing. Suffice it to say, they all do the job of getting you to breathe again.

We, the Retired One and I, attended my appointment to be kitted out with a rental CPAP. It did take an hour, like they told me. She took one look at my sleep study and script and said something along the lines of you will always need a CPAP. Comforting start.

Then the overload of information started. How it works. The pressure settings and data collection. That’s another job for the bellows. The option for automatic or fixed pressure settings. And how most people opt for auto ‘cos it’s easy and the bellows make all the decisions. About the ups and downs of pressure titration. Based on events and lack thereof. The million and one different kinds of Hannibal Lecter’esque masks. The elephant trunk hoses. The water chamber. The magic button that turns it on and off. And the cleaning of the bits and pieces that make up the breathing apparatus.

First it was to be on auto.  Auto adjusts pressure automatically (duh) according to need. Then for some strange reason she decided to go fixed. Fixed does not change. The bellows that is. To this day it remains a mystery why the change. Could be because the doctor had written it on the script. But rebel that I am, I eventually turned off fixed, changed the settings, and fiddled around with other things. That’s me taking charge of my therapy. Doing ma thang.

Then she ummhed and aaahed about something called ramping and changed the time a few times. Turns out ramping is about the bellows starting slow and gentle until you fall asleep so you can breathe without feeling like you can’t breathe. On the breathing out bit of breathing. That sounded sensible. Once you are asleep all bets are off. I turned it off. Once I knew what I was doing and what ramping was doing. ‘Cos I could breathe in and out without ramping.

Then – The Mask. There’s a million and one different kinds and makes. That may be a slight exaggeration. But there is a lot. She waved a few different ones in front of my face. And decided to have me try one called a nasal pillow. It’s a neat little one that sits between the nose and top lip. With little cups that fit in the nostril. That’s where the air gets blown in. The head straps are minimal leaving the face pretty free of paraphernalia so you can wear glasses and read in bed if you want. Most people opt for that kind. I did too. It isn’t in the least bit like a Hannibal Lecter mask. After a while you hardly notice it’s there. Weird huh? Having an alien-like thing stuck on your face and you don’t even notice it.

She popped it on for me to try. Then she said, oh, you’ve already started. Huh? Started what? I didn’t do anything except breathe. Turns out there is a Smart Start function that kick-starts the bellows when it detects you breathing with the mask on.  I didn’t even notice anything was happening.

Until I opened my mouth to say something. OMG. I couldn’t talk. There was a blast of air coming out of my mouth that sounded like… a weird soft, pop farty sound. The look on my face must have been priceless. She laughed. She said yeah, it teaches you to keep your mouth shut. Basically, once the alien is sitting on my face, I can’t talk. Huh. Turns out that is kinda important ‘cos you want the air going downstream instead of erupting out of your mouth.

Paperwork done we headed home with bellows in tow all neatly packed into a carry bag. Dreamstation 1 by Phillips was coming home for a visit. Oblivious to the scandal that was about to erupt worldwide around this Devil Machine as she is now called by many, I found a spot for her next to my side of the bed. Plugged her in. Read the manual cover to cover. Many times. Then followed the instructions for attaching all the different bits of paraphernalia. Watered the water chamber with filtered water.

By then I had forgotten most of what I’d been told. So had the Retired One.

Night one. I went to bed heart in mouth. This thing next to my bed was going to be a part of my night life forever more apparently. Fearfully I slipped it on. Sure enough, the Smart alec started doing its thing. Just like it’s supposed to. But I was getting little blasts of air blowing on my face. I put up with it figuring I had to learn to deal with whatever happened. The bellows were keeping me alive and delivering oxygen to my poor oxygen deprived body.

The next few weeks were spent in googling and YouTubing problems with mask air leaks and all things cpappy. Leaks are the single biggest issue most people have. A mask leak is BAD. Lots of people give up in despair after trying oodles of different styles of masks. I stuck with my original learning   all the tips and tricks on how to manage them.  Got it under control. Sort of. I called the rental agency several times. They were helpful. I went to bed at night with a scarf covering my eyes to stop them being glued shut by the arctic blast every night. The Retired One called it my eye blanket. It was surprisingly soothing.

Rainout was another new thing I had to learn to control.  It’s where the air inside the elephant trunk cools (in my case a heated hose) resulting in condensation.   Water collects in the mask and spills over onto your face. That was easy fixed with adjusting the temperature of the hose and water chamber. And tucking the hose in so it kept cosy warm. I was getting to be a real pro by now. Some people don’t use humidified warm air. I do.

Then I got a Nose Bleed. Uhoh. Common apparently. The blast of air dries the inside of the nose and can cause bleeds. Bad news for someone on blood thinners. Me. Surprisingly it only took an hour to stop the bleed. Some people have ended up in hospital with packed noses. This too was an easy fix. Two squirts of normal saline in each nostril at bedtime keeps it nice and moist.

Apart from these and other  minor CPAP teething problems, the bellows were working really well to keep my events under control. Every morning I would check the screen for the overnight data. Events of 5 and under are good. Apparently everyone has some events. You do too.  It’s a thing. It’s normal.

Since starting this journey of using bellows to breathe at night, my event tally seems to rove between 0 (yay!!!) and  0.9 . Rarely. Usually 0.3 or 0.4. Always under 1. That equates to a mere handful per night. Right from the first night. Go me.

Do I feel better for it? Yes and no. Daytime sleepiness?  Comes and goes. There are other factors causing that. Aches and pains?  Less. Memory? Not sure. I figure I have several decades of  oxygen catch up to go. Asthma? Much better controlled. Night cramps? Hardly ever.

Fast forward to 3 weeks of Dreamstation 1 sleep.

I get a phone call from the rental agency late on a Friday night. FoamGate had emerged from hiding. Phillips had to ‘fess up that they had a problem. They had issued a WORLDWIDE recall of all Dreamstation 1 machines due to the breakdown of abatement foam inside the machine. To date that equates to around 10 million machines. That is a Big Number. And each number is attached to a person who needs the bellows to stay alive.

Some people are inhaling little black particles of carcinogenic foam. And the machine emits VOCS – volatile organic chemicals.  OMG!!! They advised me it is recommended I stop using the machine. A different, safe brand will be made available sometime in the next few weeks. WHAT?!  Are you serious?!  A few WEEKS ­!! I got so upset they offered me an appointment on the following Monday to return the Devil Machine and give me a replacement.

I checked my water chamber. No floaties. Just to make sure, I changed the water. By now I was a lot more informed about what having sleep apnoea meant. I opted to continue using the machine for the next two nights.

Monday morning the Retired One and I returned the Death Station. It had earned another name from its millions of users worldwide. I was given a brand new machine just being unboxed as we walked in. Not as pretty. But a different brand. Safe to use. She set it up for me. Retrieved my data from the Death Machine. Oh, you are doing so well, she said. Really? Doesn’t everyone, I wondered. Little did I know.  We traipsed back home with my Luna G3.

This saga is destined to continue to Pt 3 – FOAM GATE and beyond


7 thoughts on “BREATHING – Pt 2

  1. Oh my goodness Raili, you had quite a few hassles to put it mildly. It is so good to read your experiences with the CPAP machines, so people might learn something from it. Take care J xx

  2. This is the first I’ve heard of this, Raili… sounds like a total nightmare. It looks as though these problems only affected you in the recall and not with the problems themselves… which is good for you. I hope your new device gives you a much less stressful experience and many good nights’ sleep.

    1. Good question. My guess? Greed, poor quality or wrong materials, ostrich-like denial, getting caught, having to ‘fess up, then not doing the right thing anyway!

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