Recall with sevear apena. Fear of sleeping

[MartinGuitars]

My apnea was so bad I was waking many times during the night not breathing. Sometimes I would fall to the floor thinking I was choking before I realized I needed to take a breath. I lost my father to lung cancer and lived it. I am scared (admit it) to use my Phillips and I am more scared not to use it.

Transparency - A family member in the medical field gifted me the CPAP. I do not know how however I slept the 1st night on, never waking from these issues. I know it was a mistake and I know my unit may not be replaced.

Here are the issues - sleep studies required by the Medicare process are backed up like everyone else - some in my area 6-8 weeks. Add to that more time is needed because nearly everyone that makes units is 7-15 days behind on shipping due to demand.

Last night, the first night of knowing my wife and I talked about the pros and cons. She wanted me to use the Phillips because it outweighed me passing on in my sleep.

Tonight I will be unable to do that again. It makes me sick on my stomach. Understand before the big question - I am not scared of many things. I am a Vietnam Vet, I survived Melanoma and many other things. This for me takes the cake.

So the question finally. What are others with severe apnea doing? Life support in some cases like mine has been pulled and there is no option of getting anything fast. So are you getting an online prescription and a home sleep test to purchase a unit online? Even that - the fastest is weeks or a month away. ResMed rents so I may do that until I jump the Medicare hoops via my doctor. Are any of you considering or have already started forward on an oral device? I am interested in people who are in a real pickle like me with severe apnea, where we could easily be in real trouble by not waking up while we wait, not to mention will we get lung cancer from what Phillips has done?

I am hoping for a dialog of people who are in my situation. Perhaps one of us has something that will work. I did learn today there is no inline filter that can stop these toxins - as they are physical and airborne (if that makes sense) meaning that polyurethane can't be blocked by a particle filter.

So this journey begins - let's please talk.

[Pugsy]

Where are you located?

[MartinGuitars]

Charlotte NC -
Are you in a similar situation? I saw a link to a device, thanks but are you part of the recall and in this situation of being double damned? Scared to use the Phillips and more of not using and not waking.

[Pugsy]

I know of a couple of forum members who want to help people like you.
I was hoping you were close to one of those members.
Let me see if we can figure something out.

[Pugsy]

What model is your current machine?
If you don't know look on the bottom of the blower unit for a 3 digit model number. May have DS or REF in front of the 3 digits.
Also do you know your pressure settings?

[john.michael]

Hi,

I had exactly the same fear as soon as I heard about the recall.

My journey was this:
. Got my first VPAP for central sleep apnea (ResMed VPAP Adapt SV) in 2011
. After some months (if I recall correctly) of adjusting to it, finally had the effects of real sleep change my life for the better
. Learned awhile later that much smaller and quieter models were available
. Had to fight like crazy to get my DME to replace the original machine (which was a tank) sooner than 5 years, even though my insurance was willing to pay
. Finally did that and started using the Philips Respironics in 2014
. Used that machine every single night with literally less than 10 nights missed over all those years until hearing of the recall from NY Times article Aug 17, last week
. Got out the old VPAP Adapt SV and used it a few nights. Unfortunately, it made a loud alarm every few hours and woke me up
. Also made appt for new prescription and started search for new machine.
. Decided to use the Philips machine a few more nights since I wasn't sleeping with the old one.

!! This was the hard decision similar to what you are facing. I told myself a few things:

* "You've already used it all these years"
* There is zero sign of black material from foam
* I learned about ozone cleaners contributing to the problem, I had never used one
* I also learned the recall was way back in June, but I was using the machine without knowing
* I knew from experience my O2 levels go way low without treatment

I had quite a bit of anxiety that first night I went back to the Philips machine, but I did fall asleep fairly quickly and it was another night with very low AHI, almost none.

I count myself EXTREMELY fortunate that I got a replacement machine so quickly.

For whatever it is worth, when I saw my Dr he said they were strongly recommending that patients who never used ozone cleaners and observe no black foam particles to continue treatment.


I really feel for you having this fear of sleeping. I hope you find some relief one way or another soon!! I also hope reading what I went through help you or someone else in sone way. Of course, we are all different and maybe not much of this applies. But whether it does or not, I really do wish you the best!!!

[ChicagoGranny]

She wanted me to use the Phillips because it outweighed me passing on in my sleep.

She knows about relative risk. Any small risk from using the machine has already passed -

... Reports of incidents related to this issue are rare, and no incidents of harm have been reported in the UK.
... Release of volatile organic compounds (VOC) including Dimethyl diazene and Phenol. Evidence suggests these gases dissipate after 24 hours from first ‘out of box’ use.

https://www.gov.uk/drug-device-alerts/n ... slash-mhra

Listen to your woman.

[MartinGuitars]

Thank you - that is most interesting.
My wife bought me an ozone cleaner - I have used it less than 10 times perhaps - not sure. It is one of those units smaller than the middle of one's hand. Who knows if it even worked. Still, it is a problem to think about.

I found a video and I am sending you a link. My wife is heavy IT and is used to taking the smallest things apart. We are talking at dinner about doing this. Watch it, please. We would do much more than the cleaning he did - but his video is priceless. I learned that the stupid foam is falling to dust but it is easy to remove. Clean the unit by vacuum and by air - rebuild it - replace hose and mask - and possibly use this until I can spend the months it takes to do the medicare hoops, new sleep study - waiting for back-ordered equipment - fittings, etc.

Tell me what you think - good or bad but I think this might be a good video for many to see that removal of the cancer foam is not as hard as we thought.
Phillips perhaps should be sending people for a short time fix to a repair place in their area where the unit can simply be cleaned out of the foam.
You will see - please tell me what you think and if you like it provide for others in the same situation?

https://youtu.be/SQnJAF3bm98

[ChicagoGranny]

I would just keep on using it while looking for a ResMed machine to replace it.

Gramps cranked the JD lawn tractor Tuesday while I was standing beside it. I took in more volatile organic compounds than will come out of Philips machines in five years.

Ever got into a new car that had been sitting out in the sun? Did it kill you?

[MartinGuitars]

Thank you for your reply. Reasons for concern, Father died one year from my age now lung cancer. That is personal - 2nd I was exposed to agent orange and was not warned, everything around me out 100 yards was glad dead. I have had cancer twice already.

And so I am very concerned. Logic says to me this was nearly impossible to happen and yet it did. The machines have been feeding us toxic chems in physical and gas forms possibly for years.

My lungs have been tested - and the flu nearly killed me taking 3 rounds of heavy meds - and I was careful about Covid.

It is not a matter of current exposure to something, it is about the math. This company may be responsible for many deaths and yet they state "we have no reports of illness" Of course you have not you bunch of idiots. Agent Orange can take 20 years to kill you in six months.

They knew in 2012 - 2015 what was cancer-causing and yet here we are.. My concern is you are exposed to something in the air that is one thing - but to breathe through a tube for years upon years while toxic particles and gases broke through during the 7 hours you are breathing through the night - That is a complex exposure. I hope we do ok - I hope you do ok. I have just been through so much and I thought Covid was the worst. This has a possible outcome of being a news special 20 years from now. Peace

[chunkyfrog]

We will all die some day; but the best plan is to do the best we can with what we have,
Or can get. Never give up.

[jim22]

Is the machine in the video similar to the model you have? I have an older machine that i did take the foam out of. It is a little tricky getting it apart and back together, but doable. It was a spare machine for me, so not a disaster if i broke anything. It does leave the machine unsealed and some incomming air will bypass the filter and dirt could cause motor damage long term.

The VOC risk should be long over, that is a new machine phenomenon. You will be able to see what the physical condition of the foam is when you get it apart, mine was not showing signs of damage, just a little dusty from the incomming air. The machine works fine without the foam, and the procedure is reversible. I had never used an ozone cleaner.

I chose to continue using mine, with the foam installed, for a month or so while i arranged to have my new Airsense. Interestingly, i think i am sleeping better with the airsense.

There are members here who occasionally have lightly used machines for sale at very reasonable prices.

Jim

[MartinGuitars]

What a great post. I am on the move tonight but when home I want to read again - and keep this going - well done -

[ChicagoGranny]

Interestingly, i think i am sleeping better with the airsense.

That is the general experience of many members who have used both brands. The ResMed algorithm is more responsive to human breathing issues.

[Julie]

The vast majority of machines under recall by Philips Respironics were recalled I'm sure at the behest of their lawyers afraid to be sued not because you'll get cancer from the machine or foam, but because the machines will not work properly when the foam disintegrates = likely due to people using ozone cleaners.

You won't get cancer from using your Cpap, just end up with a messy machine that doesn't work when the foam clogs the parts inside.

A ittle common sense may be necessary here - spread it around if you can.