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Comment by sand500 | Hacker News Reader

The article doesn't explain how these machines caused the deaths but the FDA announcement hints to it

> A wide range of injuries has been reported in these MDRs, including cancer, pneumonia, asthma, other respiratory problems, infection, headache, cough, dyspnea (difficulty breathing), dizziness, nodules, and chest pain.

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Yeah the reason for the recall is the foam inside disintegrating and being blown into the lungs.

I have two affected machines (one for each place I regularly sleep, I bought two so I didn't have to keep dragging them around). One of them is so bad that if I let it blow through a facemask for a day, the inside is all black. The air also smells really awful, like plastic fumes. Strange enough the other one which I use a lot more regularly fares a lot better.

Unfortunately Philips still didn't bother replacing mine. They are an awful company to deal with. I registered them over 2 years ago. Only last September I got an email back asking me to confirm some details. Since then again nothing. They don't even bother replying to requests for a timeline.

I still use the other machine regularly but it's also starting to taint masks when I test it with them. The local health service (I'm in Europe) lent me another brand but I really need these replaced.

The disregard for their customers' lives is really appalling. Not surprised people have actually died.

I paid big money for them too, 800 and 600 euro roughly (one of them is a full auto, the other isn't). A lot of money for what is basically a pressure fan in a box.

You're still using it?!

Yeah of course. Especially while I didn't have an alternative yet. I have this machine for a reason and untreated sleep apnea is also dangerous long term. It's also very hard to live while sleeping so badly.

I'm not using the bad one though. The one that smells and blackens face masks. Only the other one. I regularly let it blow into a mask for a day to verify.

Have you considered the oral appliances? They don't work if your apnea is really severe but they're pretty awesome if it works for you.

I tried one before I had the machine but it gave me really painful teeth and didn't help enough.

I used to wake up with really painful teeth and I also felt them starting to misalign. Like they were pushing my teeth around like braces.

Yeah, oral appliances don't fix the actual problem: tongue slacking into the back of the throat. It's the same reason a chin strap will just make you choke.

Supposedly you can "train" your tongue to stay in position with tongue & jaw exercises, but I saw no effect.

Oral appliance worked for me. It was sufficient to get my jaw in the right position.

Not the OP, and I don't use a CPAP, but just living with sleep apnea is kind of horrible, and not harmless. It might be genuinely worth the small risks associated with the affected machines if the alternative is having to go back to untreated apnea.

I understand that some people can't afford to buy a machine on their own, but damn that would be $700 I'd totally spend. Buying a different brand in the US is super easy.

The problem is that I moved countries in the meantime and here it's not quite so easy buying one on your own :(

You should have a look at your local craigslist alternative (like OLX in europe) or facebook marketplace. Lots of people sell their CPAP machines.

Yes that's an option but I don't really like using a used one for hygiene reasons.

It's annoying that they're so restricted here with all the medical red tape. They can't even go high enough to do actual damage. It's not like a respirator.

You can probably order one from the US if you still have your old Rx somewhere.

I didn't live in the US though (In fact I've never even visited it!)

Or do they take foreign prescriptions too?

I'm honestly not sure, they are super lax about checking Rx in general though, so maybe email them?

Go to their secured email and email the documents including a current prescription for the appropriate machine (bipap vs autosv vs cpap etc). They have a call back number in the secure email, give them a call if needed. I got mine replaced after a lot of frustration but it was worth it.

I don't have a current prescription because the loaner machine was given to me instead. I did have one when I ordered the original of course. Though I lived in a different country back then.

But I can probably get a new prescription. Where do you find this secure email? I don't know what you mean, I only have the email address they emailed me from. Maybe that secure email is a US thing?

Yea, my perspective is as a US citizen living in the US so YMMV.

That's like really bad, long term is there a risk of lung tissue fibrosis? I would expect it. I have the resmed but honestly I think a dental appliance might be better.

I also have a resmed now on loan. Way better machine yes.

But I don't know how long I'll have the loaner for and I want safe machines (that I paid a lot of money for) so I don't constantly have to drag it from place to place. That's why I got two in the first place.

> That's like really bad, long term is there a risk of lung tissue fibrosis?

No idea to be honest. I'm not a doctor, just a patient.

> if I let it blow through a facemask for a day, the inside is all black

CPAP, you were the chosen one! It was said that you would bring balance to the respiratory system, not leave it in darkness!

This is literally killing hundreds of people.

Darth Vader is fictionally killing billions of people.

> One of them is so bad that if I let it blow through a facemask for a day, the inside is all black.

This problem seem easy to recreate in a workshop or lab. There is really no excuse for this.

It was recalled there too, right? and pulled immediately in Europe too after this became public?! Does that mean they don't have to fix it or replace it immediately? Even car manufacturers are quicker to deal with recalls, even for much less dangerous stuff...

Can you remove the foam if the only function is to reduce sound according to what I read? Or can you upgrade it to like a steel non-microbial mesh material?

There's a kit on Amazon for the Dreamstation that contains the same piece except without the silencing (poison) foam. I replaced the part about a year ago and the sound is not that much louder. It doesn't keep myself or my wife up at all, at least.

Also the black stuff in the facemask could be killing you, find a great personal injury lawyer and get that stuff tested. If it’s foam you might be in for a big payday for them damaging your lungs.

It does explain it, in the second, third paragraphs:

> The FDA said that since April 2021 it has received more than 116,000 medical device reports of foam breaking down ... amid reports they were blowing gas and pieces of foam into the airways of those using the devices.

The reporting in this leaves a lot of questions. I can understand pieces of foam, but that the machines were harming people by blowing _gas_? The air that we breathe is a mixture of gases. What other type of harmful gas could a CPAP machine blow?

Volatile organic compounds from the foam breaking down. Formaldehyde was mentioned in some of the reporting.

Polyester polyurethane particles which may or may not be visible to the naked eye. These particles can break down further into volatile organic compounds which are vapors. All of these are toxic and carcinogenic.

Can this subpar foam be taken out and replaced with a non-microbial metal mesh or something? The use case for the foam was noise reduction it said in the article.

While I'm not disputing that Philips Respironics are an evil bunch of cunts, half of those symptoms are strongly correlated with just having sleep apnea and/or being on CPAP, even without cancer foam.

Dirty water tanks/hoses can cause infections or cough. Having sleep apnea is often associated with having asthma. Exacerbation can lead to pneumonia, etc.

I'm assuming the FDA didn't just look at these patients in isolation, but compared them to non-Philips-CPAP controls and to untreated apnea controls?

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