What if your medical treatment was possibly killing you, and nobody told you?

Update:

I've made about 50 phone calls to the doctor's office, insurance company and my DME. Phillips in the Netherlands isnt answering questions and has hired a third party to screen concerns.

Here is what I've learned:
>Only Phillips and ResMed make the machines.

>Phillips will not be replacing their defective machines for months, maybe a year or more.

>ResMed has run out of machines to fill the gap, and there is no prediction when they will catch up to demand.

We users are stuck between a rock and a hard place, some worse than others, like me who have such severe sleep apnea (life threatening) that I have no choice but to use an CPAP machine that the manufacturer says "Could be life-threatening".

Today, it occurred to me that I could build an in-line filter which would remove any possible "degraded foam particles" which might get into my lungs.
But then, I searched online, and discovered that they actually already exist !

I ordered 3 from two companies, one that is actually made by Phillips!

1-H1605-inline-bacterial-viral-cpap-filters.jpg

Less than 10 bucks.

But be careful, as there is a warning on some of these that when used with heated humidifier, or with an ADAP machine with cfm less than 7, they might reduce therapeutic effectiveness of the machine. As for myself, I'm going to use them, anyway.

.To find one, google:
Inline Bacterial Viral Filter for CPAP Machines

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YamadudeXS650C said:
>Only Phillips and ResMed make the machines.

>Phillips will not be replacing their defective machines for months, maybe a year or more.

>ResMed has run out of machines to fill the gap, and there is no prediction when they will catch up to demand.
Click to expand...
Wonder what is being sold in the interim or are their other brands?
 
I forwarded you 1st post's info to my contact list. I had no idea that any of my friends use a CPAP but 2 do and didn't know about this.
I also got an email from Phillips yesterday from my Medicare with the recall notice. Better late, I guess. I'll also pass on your info for the filters.
Thanks Greg for posting all this information from my friends and myself.
 
More updates:

I am finding DME companies who have informed customers of the Recall.
My own company, AdaptHealth, continues to state that they "can't inform customers" which is bullshit. I suggest you stay away from them.
Lincare has put it in their website.

Here is the best update I have found as to what is going on:

https://www.respshop.com/philips-cp...JV7yYTDqjKe4ZdyK2rvyhzcfSgxzJc9xoCQPAQAvD_BwE

It looks like you can buy a Phillips DS2 outright, but getting it set up correctly would involve a sleep study:
https://www.respshop.com/cpap-machi...uto-cpap-advanced-with-humidifier-p-1551.html

The FDA has suggested that the use of an in-line filter could be considered:

FDA Recommendations for Caregivers and At-Home Users of Affected Ventilators:

FDA cautions ventilator users not to stop or change ventilator use until speaking with a health care provider.
  • Talk to your health care provider about using an inline bacterial filter, which may help to filter out particles of foam, as indicated in the Philips recall notification. At this time, the FDA does not have evidence of the safety and effectiveness of a filter for mitigating the foam risks, and the FDA’s evaluation is ongoing.
FDA also announces it is important to note the following considerations:

  • Filters will not help to reduce exposure to certain chemicals that may be released from the PE-PUR foam.
  • Filters may affect ventilator performance because they may increase resistance of air flow through the device.
  • Users should closely monitor for possible accumulation of foam debris on the filter or resistance-related problems in the breathing circuit after filter placement.

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Got the email of that just to day. One thing I notice it says:
If you would like to replace or repair your equipment, the supplier you bought the equipment from is responsible for replacing or repairing rental equipment at no cost to you when the equipment is less than 5 years old.

Wonder how that works if if since you got the equipment you changed to a different DME supplier due to problems with the one you originally obtained the machine?

I have registered the machine with Philips but so far no response from them!
 
kshansen said:
Got the email of that just to day. One thing I notice it says:
If you would like to replace or repair your equipment, the supplier you bought the equipment from is responsible for replacing or repairing rental equipment at no cost to you when the equipment is less than 5 years old.

Wonder how that works if if since you got the equipment you changed to a different DME supplier due to problems with the one you originally obtained the machine?

I have registered the machine with Philips but so far no response from them!
Click to expand...
Ken, Could you copy the whole email for us to see?
 
Jim said:
Sure Jeff. I'll even fwd it to you if you pm me your email. Here's the cut and paste version.


View attachment 197205
Click to expand...
Thanks Jim, this is good. My DME is denying all responsibility for everything. No Surprise.
The also say, "We have no machines"
All offices are closed at this time, so I'm going to followup tomorrow.
I'm wondering about the term, "Rental equipment". Not sure if I am techinically renting vs. purchased. Probably purchased.
 
Is there a thread about sleep apnea? I'm just curious because my wife claims I stop breathing when asleep then suddenly gasp and start up again. She claims I never sleep well because of this (or it's her holding a pillow over my face). During the day I will be doing something and them suddenly I gasp as if I haven't been breathing for a while.
 
Paul Sutton said:
Is there a thread about sleep apnea? I'm just curious because my wife claims I stop breathing when asleep then suddenly gasp and start up again. She claims I never sleep well because of this (or it's her holding a pillow over my face). During the day I will be doing something and them suddenly I gasp as if I haven't been breathing for a while.
Click to expand...
Paul, you are showing the sort of symptoms that might be sleep apnea. There are tons of websites about it, just google it.

It's estimated that one in 15 adults in the United States have obstructive sleep apnea, which equals 18 million people. Approximately 80% of these people are undiagnosed. Although men are at a higher risk of sleep apnea than women, both sexes can suffer from this disorder.
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Paul Sutton said:
Is there a thread about sleep apnea? I'm just curious because my wife claims I stop breathing when asleep then suddenly gasp and start up again. She claims I never sleep well because of this (or it's her holding a pillow over my face). During the day I will be doing something and them suddenly I gasp as if I haven't been breathing for a while.
Click to expand...
Paul,
Here are the primary symptoms of sleep apnea:

  • Loud snoring
  • Episodes in which you stop breathing during sleep — which would be reported by another person
  • Gasping for air during sleep
  • Awakening with a dry mouth
  • Morning headache
  • Difficulty staying asleep (insomnia)
  • Excessive daytime sleepiness (hypersomnia), falling asleep at the wheel
  • Difficulty paying attention while awake
  • Irritability
  • Nightmares
If you have a bunch of these symptoms, I recommend that you consult with your doctor. It could literally save your life. Sleep apnea can lead to car accidents, heart problems and stroke.
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Jeff
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Paul I don’t know how it works in the UK but here we have to go in for a “sleep study”, basically they record how many times you stop breathing and frequency. I stopped breathing 84 times in 8 hours with the longest being 10-11 seconds and I was diagnosed with “mild” sleep apnea. I started using my machine in 2003 and have never felt better since. Then the sleep Dr determines the pressure for your machine. Everybody is different.
 
Thank you guys, but last night things changed. I woke up to have a pee and couldn't keep my balance - Labyrinthitis. Now I can't go bike riding. I hope it passes in a few days. Having a shower this morning was tricky trying not to fall over bending to pick up the soap.......

Edit: My son came home today. He is a Doctor in a Hospital in North Wales so showed me some exercises to help recovery.
 
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