My CPAP machine has been recalled and not supposed to use it

[nairotci]

So I have been on a CPAP machine for 15 years. I have Chronic Lyme disease which is the reason I have sleep apnea. I stop breathing many times an hour without a CPAP machine. I received a notice today from cpap.com and it said I should immediately stop using my machine and contact the manufacturer. I also have dementia and accomplishing this task on my own without help is impossible. I called CPAP.com since that is where I purchased my unit. No one answers the phone. So here's the deal. Should I just give up and die if needed? This is the worst customer service I have ever encountered. I am unable to reach the manufacturer. I am unable to reach CPAP.com as well. They don't answer the phone. My memory is so bad that if I can't talk to the right person, I won't be able to get the problem solved. I can't seem to reach anyone. They say to try this. Another customer is not going to be able to tell me how to solve my problem and who would want to mess with it? This is the worst service I have ever received anywhere in my life. No one answers a phone anymore. I have a doctor who knows nothing about CPAP machines. My old doctor retired. I have no idea what to do. I don't understand what the problem is with my machine. I wake up frequently because I stop breathing so often. I have to adjust my mask many times during the night. This CPAP machine wasn't cheap. I've only had it about 2 years and now I'm told I shouldn't use it. What am I supposed to do when I can't reach anyone to help me?

[Julie]

I think your family doctor should put you in touch with the Alzheimer's ... society, foundation, whatever it's called, and find you some ongoing help with things. You should not be trying to manage this alone.

Write yourself a note to call them... they will be able to help, if not immediately with the machine, then your overall circumstances. You don't need any referral for the Alz's Society of course - you just call the local one and talk to them... they will help you.

But millions are affected by the recall of cpaps, you're not alone. But unless you have actually used something like So Clean (or another 'sanitizer' with ozone in it) you could probably continue using the machine anyway bcause that's what the recall is about - there is some foam inside that can deteriorate from ozone and lawyers are telling the Cpap companies to do recalls so the companies won't be sued by patients who've used So Clean... all very maddening!

Just saw your previous post - now I don't know what to think - you talked about maybe having lung cancer 5 mos ago.... are you kidding? It's not like a cold, and doesn't just casually go away in a few months, but then you didn't bother to get it confirmed?
And you think natural ... what, herbs or something will cure it?

Why do I even bother.

[chunkyfrog]

Nice catch, Julie.

[Julie]

Ribbit

[zonker]

ladies?

please be kind to a dementia patient.

please?

[ILoveFlowers]

I'm sorry, this is a lot to deal with without someone to help you. Do you have a social worker or does your health insurance provider have a nurse that can help you with it?

The cpap suppliers must be getting hammered right now with calls and emails. This affects literally millions of people worldwide. I'm sure their phones have not stopped ringing.

There's really not much you can do about it in the immediate time, other than order a new machine that isn't affected by the recall, if you are able. Eventually our machines will get repaired but it's going to take time.

I didn't use my machine last night and wow, that was a terrible night's sleep!! that is not going to work for me. The articles I read said that using harsh cleaning products like SoClean or living in a very hot, humid climate are the main causes of the foam breaking down. I haven't used SoClean and it's not hot and humid where I live, so I'm going to make a judgement call and go ahead and use mine until I get the new one I ordered. Each person is going to have to decide how they can best deal with it.