Biguglygremlin

You have an incredible history with this forum SusanR, right from its very inception.

You invested many hours of attention and effort and initiative.

I am just a passing rabble-rouser.

This thread, which probably should have been deleted, was certainly not directed at you.

It was intended to rally support, acknowledgment, and a few basic tools, for Sierra.

I get the impression that a number of forum members would support your efforts to revitalize and enliven the forum but it won't be sustainable without changes in the functionality and even then it would probably need some inspiration and initiatives similar to what you applied in the early years of the forum.

If you can make things happen behind the scenes to create a more sustainable environment I'm sure there are forum members who are willing and able to initiate and support more lively, constructive, discussions.

There have been a number of discussions, both here and behind the scenes, culminating in some members of the board approaching those who are managing this forum.

I get the impression that the response that those board members received was essentially:

Who do you think you are? It's none of your business! We are the experts. We are in control. We will decide what needs doing. Go away and leave us alone!

Those might be the standard responses to preserve power and control and, despite lacking initiative and tact, it might have been understandable if there was some evidence, thereafter, of purpose and progress but it's hard to see any significant or meaningful changes in the intervening months despite the favourable circumstances and increased needs and benefits created by this pandemic.

The continuing decline of this forum is not a surprise nor an accident, it is the inevitable result of decisions being made or deferred by the present MyApnea forum management team.

This forum is dying because the people tasked with managing it are content to do nothing while it slowly languishes.

It could be saved and revitalized to continue supporting the global CPAP community and to preserve the vast wealth of experiences and advice contained in its threads but only the forum management team can authorize and enable that process.

I started a similar thread a year or so back and afterward, along with others, tried to initiate some actions to revive the forum but our efforts were rejected by what seems to be an obstructive and inept management team.

Dwindling Health

The only reason this forum has not faded entirely is because of the steadfast efforts that Sierra has put into the forum. If anything should happen to Sierra it would pretty much finish this forum.

This thread is intended as a wake-up call. Time is running out and it seems that, still, nothing is being done.

The p10 and the p30 use the same chart and the same disclaimer, that the manufacturer might produce something different to what the chart depicts, yet the difference between them with the machine off is profound.

The P30 has a vent at the junction on top of the head and another at the nose but both vents are very restrictive and it uses soft hoses which collapse and seal shut if the machine is off and you suck too hard on them, rendering the top vent inaccessible and blocking any additional air that might otherwise be accessible through the machine itself.

I have 3 CPAP machines here and they have all shut down from time to time so from my perspective this is a real issue.

I have 3 different nasal masks and the only one that I considered safe over a protracted period with a dead machine was the Fischer and Paykel Nuance and that was probably, in part, because it leaked so readily and was easily removed.

There must be a way to reduce the risk of these masks when the machine fails. Non-collapsible hoses and an additional one-way valve would be a lot safer than what I am currently using. These kinds of valves are often noisy but if it only operated when the CPAP failed being noisy might be a good thing.

Even if it was at the machine, if it was generous enough, the larger volume of air would reduce the proportion of rebreathed air.

Another option might be to improve the natural airflow potential of the machine itself. Enlarging the filter, fan, and internal airways so that more air can be sucked through the machine after it shuts down.

A more drastic option would be to split the main hose and create a cycle of air from the machine with a one-way inlet valve on the outgoing airflow and an outlet valve on the return flow which terminates at, or through, the machine. This would remove all vents from the mask along with most of the noise and would significantly reduce rebreathing at the mask and facilitate adaptation to an isolated airflow system.

Someone must have considered these and a thousand other options yet they continue to distribute products that are not safe.

I've lost too many neurons to be able to translate that chart into a real situation but what I do know is that if my machine shut down and I was not able to remove the mask within a short time there would be serious consequences even if it was only feeling really bad and losing more neurons.

I note, however, that all the manuals I have seen caution that the machine must be running to avoid excess rebreathing, presumably because the amount of air being breathed is significantly reduced thereby changing the proportions of rebreathed and fresh air. The manual linked above even states that the patient could suffocate.

I concur that this might be a rare event and usually compounded by other factors but how would we know?

I have a family member who passed away quietly in her sleep recently and nobody would have checked to see if the machine was still running or removed the data card to find out if it had shut down sometime during the night. She was old and unwell. Death was not unexpected but, if the CPAP did assist, shouldn't others be made aware of the potential risk? Ignorance is rarely a good choice.

My concern is not with my own safety but with an industry that designs, manufactures, and sells medical and life support devices yet seems to be largely unregulated when it comes to safety factors, and a forum that, in trying to remain positive, skirts around difficult and sometimes vital issues.

It seems to me that by trying to make masks quieter and more comfortable by minimizing the sound of air hissing through the vent and reducing the draft the manufacturers have overstepped the safety requirements to the point where a sustained shut down is more than just uncomfortable. It is a slow form of suffocation much worse than the Apnea that it was intended to alleviate.

There should be statistics detailing the airflow pressure and volume of the various functional components of these devices.

Thanks Apollo but I am more patient and persistent than that.

I use 2 different CPAP machines that both shut down from time to time. I haven't seen any direct cause as yet but I'm usually asleep when it happens although I move around a lot when sleeping.

RBD

I turned the machine around so the controls are out of reach and moved it well away from the bed to avoid inadvertently shutting it off but even so, I have awoken twice this week to find the Icon CPAP upside down.

It's interesting that both the ResmedS9 and the Icon continue to function upside down even with a full tank although the Resmed pumps all the water up the hose which is a bit alarming.

Topsy Turvy

I have the Airsense10 as well but I haven't used it yet. I hope to get to a safer place before I unpack that one.

I also have a few different masks. Unfortunately, the most comfortable mask is also the most dangerous but I continue to use it with a few improvised safety features.

Hi Apollo

The resmed airfit style masks with the main connection on top of the head feed air through the tubes that fun down over the cheeks and if you lie on your side you squash one tube which would be interpreted by the machine as an obstruction or pressure increase.

If it is capable of causing the machine to shut down then the risk of these masks is a even higher than I had anticipated.

Negative Input

Air Sucked Out

Hi JacRoc

I don't use a full face mask but I think the issues are the same for many CPAP users.

It seems to me that as you relax the nasal passages tend to close and applying pressure can either clear them or compound the problem.

I often use a nasal spray to clear at least one nostril and once the air is flowing properly it is usually self-sustaining.

If it's not too disruptive you could try switching sides for a few nights and see if that makes any difference.

Making a conscious effort to sleep on your back might also be worth a try.

Don't ask me to explain.

I know not why.

Hi RehabMomma

Was the machine still on when you were awakened and which mask were you using?

The Airfit type masks with the tubes running down past the cheeks would have this effect if the machine shuts down because the tubes suck closed so you can breathe out easily but when you try to breathe in all you can do is suck the air out of your mouth.