Mask cleaning question

Zaiforce wrote: ↑

Fri Mar 01, 2024 4:07 pm

We also have a residue buildup inside the hosing, I am unsure what it is but it has been there a long time and just keeps building up, we wash the tubing weekly but it is still there. (Pi

I don't know the water quality where you live but it might simply be minerals left after drying. Where we live we have water with a high mineral content or "hard" water and we get that sort of film quite often on dishes and glasses, etc.

Now I don't get it in my cpap hose but then I don't ever wash my hose either.

Yucky looking but harmless.

Where do you live?

The HEPA filter will only help if the contamination is coming in from the air. Black specs floating in the water is another sign of the recall.

You can get an inline filter that is made to go between the hose and the mask to potentially keep the bits from her lungs. I don't know the exact specs on those or if they are recommended with a bi-level machine.

That looks like a non heated hose and if that is the case you can just go buy another one if the yuck factor bugs you too much.

I would tell you to use distilled water for rinsing but it sounds like you might be somewhere in the UK or Europe and sometimes distilled water isn't so easy to come by or if found it's real pricey.

I don't know of any way to safely remove that build up (assuming it is minerals left from the water) that I would think would be safe to use on the hose. Lots of stuff removes mineral scale but it involves acids and I just wouldn't want to use it on my cpap stuff.
Besides........brand new non heated hoses are cheap. If you lived close to me....I have several you could just have but I am thinking you are a long way from Missouri.

I would be inclined to think that the film that appears in the tank and hose may not be related to the recall and breakdown of the foam. The black speck you found possibly foam breakdown.

Have you ever washed the tank? If not give it a wash with some mild dish detergent (Dawn is good is good if you have it) and hot water and let air dry well (not paper towel which could leave bits of paper). The hose can be rinsed out also. I put a drop or two of Dawn dish liquid in the hose and in a sink I fill it with warm/hot water and alternately raise the ends up and down to 'swish' the water in the hose. Rinse out the soapy water with warm water and hang to dry.
Speculating/guessing that someone previously may have used a baby wipe or similar to clean the tank that could have had an oil in it and it may have left a coating of an oil or something in the tank insides. You put fresh water in and all is good, but maybe heating of the tank through the night loosens the oil or substance which then leaves the film on the water surface. Impossible to know the history of that machine and who did what to it.

I'm presuming there are no vaporizers in your mum's room that would mist essential oils or similar about the room and be drawn into the CPAP machine(?)

Thank you again so much everyone for the replies, I really do appreciate you all!

To answer some of the questions:

The tubing coming out of the machine is heated I believe, but as long as the residue in the tubing is not harmful we are not worried about it, as we are receiving a new machine eventually anyway.

We use bottled distilled water in the machine water tray when using the machine, however when we wash the tubing and the water tray each week we just use regular tap water with some added fragrance-free soap to wash them, then rinse them with regular tap water and allow them to dry, so I guess the build up in the tubing could be related to that.

I have not noticed any black specs in the water itself that I can remember, only the film type substance, and that does seem a little inconsistent, it is there most days after using the machine overnight but for example today there wasn't as much as yesterday, but there was a lot of dust and small fibres on the surface of the water when I shined a light on it (i dont usually shine light on the water so it was surprising to see how much dust gets in there).

Mum does not use any purifiers or devices in her room that would emit any kind of oil or fragrance.

The water tray is cleaned weekly but I don't think we have ever cleaned in the compartment that the water tray sits in, which is where i found several little "black specs", so since we never clean it I guess that may not be foam and could just be regular dust, I am guessing no noticeable black particules in the water after use is a good sign?

I am stressing out quite a lot about this as I know she wont have her new machine for approx. 8 weeks...

We live in Australia on the east coast, it is a very hot and humid environment here which isn't great for the foam degredation I have read but at least here it is about to become cooler in the next month or so.

Sorry if I missed any questions and again I am very thankful for your help.

If mum didn't need this machine so badly I'd just stop her using it until we had a replacement machine but unfortunately its use is critical for her health (sleep test showed o2 sats dropping under 60% due to hypoventilation before BiPAP treatment and a sleep apnea rating of 48.5 on the scale!)

It is just worrying me so much that she has been using this recalled machine for the past 4 months and will need to for about the next 2 months, I hope it hasn't caused her any damage

Minerals in the water in my place are so bad that a single rinse will leave these little white "used to drops of water" marks in a hose. I too no longer rinse my hose, and when I have to rinse my masks, I to try make the final rinse with demineralized (distilled or filtered) water.

If the hospital that gave her recalled machine didn't even know there was a recall, can you trust them about anything?
Why do you have to wait for your mom to get her own machine?
I mean, is it unavailable or is this a case of having it paid by a some kind of health insurance?

Because if it's the latter, is there any way for you to afford buying you own machine once you have the correct script?
I realize it may be expensive, and if its absolutely beyond your means, then that's that.
But otherwise, try to look it at like this:
You're putting such a tremendous effort in trying to make your Mom as healthy as possible - how much would you pay to make sure she had a good Bi-Level machine that has not been recalled?

ResMed is an Australian company
I would consider writing them a letter, explaining your plight and asking what they can do to expedite the process for you.
You won't lose anything if you contact info@resmed.com.au - but I suggest you make sure you have the prescription on hand before you write them - no doubt it will help the wheels move faster - if they can budge at all.
See if you can get a doctor to support your request, preferably one who is not from the place that never heard of the recall.

And keep in mind that ResMed has an older excellent line of devices with the number 10 - the newer series is numbered 11 - and the Bi-Level in this series has only come out in the past week or two - given the machine you have now, I suggest you get whichever machine you can get sooner - the differences aren't that big between the two models.

ozij wrote: ↑

Fri Mar 01, 2024 10:47 pm

If the hospital that gave her recalled machine didn't even know there was a recall, can you trust them about anything?
Why do you have to wait for your mom to get her own machine?
I mean, is it unavailable or is this a case of having it paid by a some kind of health insurance?

Its been a very messy situation, basically my mothers respiratory condition (severe sleep apnea & hypoventilation) was undiagnosed and after being hospitalised due to a major car accident it all came to light.

During recovery from her accident she went into respiratory failure 3 times, requiring ICU admission each time.

They gave her an in hospital basic sleep test (not a full sleep test) and gave her a loan BiPAP machine to treat the condition until she can follow up with a lung specialist as an outpatient.

She is now out of hospital after 8 months but is still waiting to see the lung specialist, so officially her respiratory conditions are "undiagnosed".

We have been told that for her to get the script to get her own BiPAP machine that she needs a proper sleep test and proper diagnosis, which hasnt happened yet, and is quite difficult as staying overnight at the sleep centre will be tough due to her severe leg injuries.

Its just a very annoying situation, I will call the hospital on Monday and ask if they can organise a script to let us pay for a ResMed machine now, to save all this waiting, hopefully I have some luck, but I suspect they will tell me she will need to use the current machine until she sees the lung specialist and receives a proper diagnosis .

Zaiforce wrote: ↑

Fri Mar 01, 2024 11:07 pm

They gave her an in hospital basic sleep test (not a full sleep test) and gave her a loan BiPAP machine to treat the condition until she can follow up with a lung specialist as an outpatient.

Let's hope they're just being professionally careful.

She is now out of hospital after 8 months but is still waiting to see the lung specialist, so officially her respiratory conditions are "undiagnosed".

We have been told that for her to get the script to get her own BiPAP machine that she needs a proper sleep test and proper diagnosis, which hasnt happened yet, and is quite difficult as staying overnight at the sleep centre will be tough due to her severe leg injuries.

Let me ask again: is this "in order for health insurance to agree to buy it for you" or is this "in order for the company to sell you one"?

Because health insurance may want to make you jump through hoops (pardon the rather unfortunate metaphor), but a company that wants to sell may simply need any doctor's prescription to abide by the law (if any such law exists).
Maybe your report of her improved oxygenation even on this loaner, will help convince them that a sleep study isn't essential.
Good luck, and keep us posted.

Try to catch the eye of other people by creating a new thread titled:
Hypoventilation: wait for a sleep study or switch to ResMed from a recalled Philips loaner?

And then describe the messy situation like you just did. And add the info about the film and the pieces.

I know of at least one member who won't look at a thread called "mask cleaning" but whose opinion can be very valuable concerning the contribution a "real" sleep study can have, given the history of you Mom's accident, respiratory failure, etc.

My lay person's intuition is that there's a confusion here between "what is needed to have the machine paid by insurance" and "what is needed to get a machine" but I could be totally totally off. They did, after all, give you a loaner as an emergency measure. Given what you've told us about your Mom's breathing, and thc ICU visits, I would a) ask the hospital to set up the ResMed machine as close as they can to the loaner b) I would keep the appointment with the lung specialist c) I would be extremely wary of making any changes to the setup of any machine at this point - unless the loaner is "wide open".

And please tell us the exact model of the machine you have now - it's very important for us to help us understand what caused the improved oxygenation you reported on your "leak" thread.

Thank you ozij, I will take your advice and sit down and write out a new post a little later tonight.

Her machine is a Philips Dreamstation BiPAP AVAPS, manufactured in 2019.

It's pressure settings are 22 IPAP and 10 EPAP I believe (the hospital respiratory team told us she needs quite high pressure).

The machine seems to have been working fantastic for her, even in day to day life we can tell the difference its made, no more slurry speach, better oxygen levels etc and improved overall health, it was just finding out about this recall and that she is at risk of serious health issues using this machine that has scared us greatly.

She has been using the machine for 4 months already, so I am worried some damage may already be done, but so far she isn't showing any symptoms I don't believe.

Sorry I am not sure what you mean when you say "unless the loaner is wide open" ?

Zaiforce wrote: ↑

Sat Mar 02, 2024 12:29 am

[...]
Her machine is a Philips Dreamstation BiPAP AVAPS, manufactured in 2019.
It's pressure settings are 22 IPAP and 10 EPAP I believe (the hospital respiratory team told us she needs quite high pressure).
[...]
Sorry I am not sure what you mean when you say "unless the loaner is wide open" ?

You can ignore the sentence, the info you gave about the type and settings is very important and shows it's not. "Wide open" means nobody took the trouble to set it up at all. Given your Mom's severe condition that got her to the ICU a number of times I didn't think that would be the case, but I did feel a need to mention the possibility.

One of the reasons I suggested a new thread is that I have no idea how truly dangerous the present machine is, especially when compared to the improvements you see. Recalls are based on probabilities of harm, so don't let it spook you out too much.

And an VAPS (Volume Assisted Pressure Support) type machine is a special type of machine (actually called a non-invasive ventilator by the companies. It's more expensive that a simple BiPAP (or Bi-Level) machine.

I wonder if you could try to negotiate with the hospital for a newer machine that hasn't been recalled.

Just a quick question in regards to mask cleaning again...

Do people generally clean brand new masks when they purchase them prior to using them for the first time? Or are they safe to use straight out of the packaging?

Thanks all

Zaiforce wrote: ↑

Thu Mar 07, 2024 5:47 pm

Just a quick question in regards to mask cleaning again...

Do people generally clean brand new masks when they purchase them prior to using them for the first time? Or are they safe to use straight out of the packaging?

Thanks all

it'll be fine right out of the box.

unless you have a problem with plastic smell.

good luck!

zonker wrote: ↑

Thu Mar 07, 2024 9:16 pm

it'll be fine right out of the box.

unless you have a problem with plastic smell.

good luck!

Thank you!

And nah I don't think she will mind the plastic smell, her old mask still has a strong plasticy smell even after 4 months!