Breathing – Pt 3

Foam Gate and Beyond

Having suffered through the trauma of a worldwide recall of my lifesaving bellows, I set about learning just what was going on.

Nicko’s song is a much more lighthearted take on what people really think and feel about the Death Machine.

This link will take you to the sordid world of FoamGate.   

Scary stuff. So many people still don’t know about this. So many are being forced to continue using the Death Machine. So many are forced to do without any bellows.

I felt very blessed, and relieved, to have a safe bellows thingy to use.

In my meanderings around the internet, I came across a private FB group based  in Melbourne. A dinkum Aussie site. By Nicko of the above videos. It is a brilliant group filled with very supportive and knowledgeable members. Always willing to share information, tips and hints. A veritable cornucopia of CPAP wisdom that can be tapped into at will. They are the real lived experience experts. Some work in the industry so are even more experty.

I learnt how to manage my own clinical settings. Over a period of a couple of months I slowly and very cautiously reduced the maximum pressure. It’s important to keep the minimum pressure set to an adult range, usually around 7. I discovered that when I lowered mine just a wee bit. My events went up. Still under 1 but definitely more than before. So back up it went. (An interesting sidenote I stumbled on – paediatric ventilators deliver one TEASPOON of air per puff.) Fiddling with the pressure settings was a scary thing to start doing. But I kept scrupulous records of daily stats making sure the number of events did not skyrocket. They didn’t. In fact, they kept pretty steady. That was comforting. I’ve reached my optimum level.

Some would say it’s not a wise thing to do. To take charge of your own treatment. That it’s a doctor thing.  Duh. It’s my body. My doctor knows zilch about the minutiae of all things CPAP.  How it can be adjusted. Neither does the cardiologist. Six monthly appointments with the respiratory clinic for ten minutes is not much cop either. In fact my next appointment has been changed to a phone consult. Because of Covid.

I decided it was important to do. To take charge of my own bellows therapy. Having the optimum amount of bellows pressure whilst maintaining control of events meant I was not blasted with higher than necessary pressure. And that means less nasty side effects. Like bloating, chest pain and other nasty stuff. Mind you, I wasn’t getting any of those.  I do emit some nice, healthy, very unladylike belches at times. I don’t want to have the bellows blowing any harder than necessary either.

What I have discovered is that a LOT of people really struggle with the whole CPAP thing. Many give up in sheer frustration and overwhelm. The leaks are what gets most of them. Finding the right mask is crucial. Learning how to manage it is just as crucial.

In comparison to me, there are folk out there who were having huge numbers of events, some over 100 an hour. With oxygen saturation levels in the 50’s. OMG! Here I am happily sleeping with my bellows every night, all night. With events that are probably less than people without sleep apnoea. I am so blessed. And at the last doctor visit my oxygen saturation was a healthy 97%.

There is a whole other side to this bellows therapy. It’s to do with money. Different countries, and different states, have different rules and regulations. Some insurance companies cover all or part of the costs. Provide regular supplies of the consumables – masks, hoses, water chamber, filter.  If you have insurance.

For me, it is an out of pocket expense. I ended up buying the same brand bellows I trialled. It cost AUD 1000. There are ongoing expenses. The biggest single expense is the mask. They are ridiculously expensive and need to be changed relatively often as the silicone thins,  tears and wears out. When that happens – it LEAKS.  Also if you are sensible, you have a second, back up machine.

BMC Luna G3

I was lucky. Again. I found one on FB Marketplace. Same brand. Barely used. Half price. Opinion about buying a used machine is very divided. Why would you want to breathe through a machine someone else has  used? Ewwww. What if they had Covid and didn’t tell you? What if they had used those horrible cleaning devices that wreck the machine’s insides? The Ozone and UV ones.  I was confident they were not an issue.

The Retired One and I went on our first since forever mini road trip, Trekked to the outer northern ‘burbs  to buy the used bellows. The water chamber has never been used. Neither has the mask and head gear. Those alone would cost me near on AUD300 to buy. I tried to find a service that would clean the innards for me. All I was offered was an Ozone clean. Umhhh – no thanks.

So with the help of You Tube the Retired One opened her up. It looked brand new inside.  I cleaned and  wiped. And soaked accessories in a diluted vinegar solution. It kills bugs. Then washed them in fragrance free soapy water.  Done. I have a functional, clean, back up machine.

All is well. I am a happy papper.

But wait! There’s more!

Warning: I am about to get serious. Before I sign off on this Breathing saga I just want to say a few important things.

If you know someone you care about  who has issues with sleep – like really bad snoring; or God forbid periods of stopping to breathe – please encourage them to have a sleeping test. It just may save their life. It will certainly improve the quality of their lives. And if caught early enough, prevent some of those nastier health issues from taking a hold.

Just what are some of those more serious health issues?

The Mayo Clinic’s information about Sleep apnoea provides an excellent overview.

Checklist of Sleep Apnea Symptoms

Review the main warning signs of sleep apnea to understand if you are at risk. Check off the symptoms which are affecting you.

  • □ You snore loudly.
  • □ Your spouse or bed partner says that you have stopped breathing during sleep.
  • □ You have woken up suddenly with a choking or gasping sensation.
  • □ You often wake up with a dry mouth or sore throat.
  • □ You frequently experience headaches in the morning.
  • □ You often feel tired or fatigued during the day.
  • □ You have difficulty staying awake while watching TV or reading.
  • □ You have problems paying attention at work.
  • □ You have difficulty remembering things.
  • □ You feel irritable or have mood swings.
  • □ You have high blood pressure.
  • □ You have a decreased sex drive.
  • □ You have any of the common risk factors associated with OSA: being a smoker, overweight or obese.

This site also has a short quiz you can take. And lots of other information.

Sleep healthy. Be well.


4 thoughts on “Breathing – Pt 3

  1. You have brought back memories of when I was in hospital, after the operation my oxygen level was too low and every night in ICU they stuck one of these on my face and the noise it makes when some air escapes sent me mad! Incidentally my ex husband had a cpap machine and he found it a life saver. You should definitely start to feel much better soon xx

  2. The modern machines are whisper quiet even when they sit right next to you. But yes, the exhaled air can be very irritating. Necessary though as it is the carbon dioxide venting. If it didn’t, it would poison you!

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