Cpap, Bipap, Ventilator-Phillips recall

[Noor]

Hi Everyone,
If you have any breathing/sleeping device assist esp. Cpap, this is a serious recall.
This is a two part recall.

Phillips Recall

https://www.cbsnews.com/news/philips-cpap-machine-recall-ventilators/?fbclid=IwAR2Id_uGuJ1XEEQQDm1LANI7sAm7ZHOBkBpWSnz7WNhuFw5GOXUSgWUQNg8

 

[twister947]

Thank you

 

[Noor]

You are welcome! I am very concerned that people dont know how bad this is.

I had the black dusty stuff and a slight burning smell. I mistakenly thought my SoClean hose was breaking down or I hadn't cleaned it well enough and dust got in.
I have 3 rare disorders, and over the past 2-3 yrs , they have been getting worse. In the morning, I was coughing for about a 1/2 hr like I had something in my lungs and I was getting presyncope until the afternoon. I was also having random breathing issues. I actually found out about the recall when I tried to reach Phillips about the slight smokey smell.

I stopped using it, my sleep has been crap, and my throat has been sore. However, I am not coughing for 1/2 hr in the morning, though I do still have a cough, and I can do all these things I haven't been about to do for a long time, like walk around in the heat outside, no passing out, no breathing, I can drive fine even before noon. I react to VOCs with presyncope or syncope.

I still need sleep and I dont want to spend $800-1000 on a new machine, so my current plan until Phillips gets it's ass together is to use an inline filter between the machine and my headgear. I ordered some and they should be here tomorrow.
I also figured out a way to use my SoClean without ozone getting into the cpap part.

I am really not thrilled with Phillips. They definitely knew about this since May, and they have not been proactive in reaching patients. They have no plan at present except respiratory patients should stop using their devices except those on continuous airway equip (ventilators) and they should use inline filters.

I have had 4 Cpap over the years, 3 by phillips, and I cant find the 4th at this point. I am registering all 3 of them with the recall.

 

[Noor]

I've been using a Respironics for about three months. The water tank had a white (the recall mentions black) fluffy layer that I, mistakenly, attributed to calcium or remains of cleaning liquid. A couple of days ago, I was informed about the recall. I realised I was ingesting the insulation in minute quantities, everyday.

No idea what the effects are going to be in the medium term. It reminds me of the many people who inadvertently inhaled asbestos fibres and suffered many years later.

I've shut down the machine and look forward to sunny days.

I think the white fluffy air is actually mold or bacteria growing. I used to have that and the SoClean stopped it.

 

[Noor]

Your journey is a much more difficult one than mine has been. I would actually like to reduce my dependence on the ASV. I hardly have CAs and the OAs are intermittent. I cannot envisage using a support machine till my dying days.

I read somewhere that Philipps recommends a fine filter, for those who need the machine - as in your case. I am presuming a HEPA filter may work. It would reduce mask pressure, though.

In an aside, my physician once acknowledged that long-term use makes one dependent, to the extent that there is no way possibility of getting out of this dependency. This is no consolation to those with high AHI values.

My pre-syncope and syncope were more stress related, but the lack of sufficient oxygen is undoubtedly a problem.

Undisciplined as I am, I am making the odd attempt to exercise my throat/ tongue muscles to mitigate my OAs. I have denuded all forests in the vicinity for a while now.

I hope you find a suitable solution.

Thank you!

I don’t have osa, so my need for it is slightly different, also I don’t have regular cpap, mine only does pressure when I don’t breathe out enough.
What’s really weird is my o2 sats are higher without the cpa than it was with.

 

[Noor]

Thank you!

The higher O2 levels could be a pointer to deeper issues. There was a period when I had very high CAs. I did realise that some of it can be mitigated by the sub-conscious. Though it is not popular, in medical circles, mindfulness and conscious behaviour have a marked impact on the central nervous system. There is some public data in this connection. It may not alleviate all of the issues that have reached clinical stage.

In the case of type II diabetes, non clinical changes have known to be beneficial in mitigating and healing many pre-diabetic and diabetic patients.

I am now using it with a inline filter, and my 02 levels are good, and no more coughing when I wake up, plus my rare disorders are acting almost like I'm in remission. I am wondering how long inhaling the sponge bits and VOCs was causing flares.