CPAPtalk.com

Kiralynx wrote:It may be time, not for phone calls or emails, but for real, physical letters.... these days, those have much more impact.

Kiralynx,

Writing letters goes far, but in my opinion, what really hits these companies is non-profit groups that represent hundreds or thousands of people using their products. I'm curious how many people here would be interested in starting just such an association. If enough of us are fed up with the tactics/antics from "resmodics" or "respirmedics" or whatever, we could release press releases to various health magazines, etc. to make a larger number of people aware of the challenges we face with:
a. insurance - find out why the costs paid for by most insurance companies seem to add up so that you end up paying more by going to a local DME through insurance than you would if you just bought the equipment on line.
b. the bogus need for a pressure prescription and the real need for better education of those who use the machines
c. making separate pieces available to patients, rather than making them pay for an assembly that includes the one piece you need.
d. a fairer way to pay for the services of a respiratory health professional then by not charging for time and overcharging per piece for machine parts. Charge per visit like any other health professional.
e. make machines available over the counter at any CVL/SmallMart/ etc.

I've made a poll here to start a new thread about it.
viewtopic/t41013/XPAP-Users-Association ... t-one.html

I'd love to hear feedback.

14 months for the Micro seal. Now it leaks . It is a bit ineven/warped looking perhaps strecthing out a bit because it was a bit too small to being with. But the next size larger was too large and leaked. Ordered a new one. Might try the Macks earplug trick to make it last till the new one arrives.

TheDreamer wrote:Yay...the ultrasonic cleaner I bought off of US eBay arrived today....though I probably won't try it until Sunday when I plan to do my weekend cleaning....

Well, I don't know....I cleaned the mask using ultrasonic cleaner yesterday...and last night I seemed to have nothing but trouble with leaks.

Guess if I still can't get it under control tonight, I'll pop into the DME before my doctor appointment tomorrow and get a new pillow.

The Dreamer.

dsm wrote:This poll is to try to gauge how long masks last & get used for.

It is something I haven't paid a lot of attention to but am wondering if the silicon seals really only last for about 3 months or so then weaken & start allowing leaking to take place. If this is true then it could explain why some of us seem to do really well for say 3-4 months then hit an otherwise unexplained downturn.

I have tended to just keep cleaning the mask each night & keep using it. Here in Aust we don't get any reimbursement beyond a one off payment of about $500-$600 (on the better health plans) PER 3 YEARS, to buy machines & set-ups costing between $AUD 1,500 - $AUD 2,000+

I have seen a pattern of good/bad results in my own therapy that may match the life of the most recent mask I bought !.

Anyone else wondered about this ?

DSM

#2 added some extra selections for the jokesters among us

I most often use a Probasics Zzz full face mask. The mask is simple and the seal cannot be replaced. The whole mask needs to be replaced. I recently replaced my Zzz mask with a new mask after slightly less than 6 months in response to increasing leaks (1.56 L/s then 2.02 L/s then 0.78 L/s) when my normal leak rates with that mask were around 0.12 to 0.24 L/s. With the new mask my leak went down to between 0.32 to 0.60 L/s. I am hoping my leak returns to numbers less than 0.2 again but I did notice slight changes between my old mask and my new mask and those changes may have altered how the mask fits me so time will tell. I am uncertain I really needed to go with a new mask but I thought I would try to see if it made any real difference. My real hope is still to find a nasal mask that works for me and does not cause nose bridge irritation.

Well, a late comment on the original question. IMO, this depends on the type of mask; full face vs nasal pillows vs nasal cushions, and their construction. Some masks by their design tend to flex a lot more during the normal use, and some material of the mask is much more long lasting than others. It depends on the user too --- removing the oil on the surface everyday early in the morning with gentle soap might prolong the life too.

I have been using SwiftLT nasal pillows; after about 6 months' daily use I do not see any deterioration whatsoever. I think the useful life is way under rated, perhaps a big reason behind this is the profit motives behind our consumption centered new business society. I did get a backup mask, but I have a feeling this would easily go for one or even two years.

Of course, Swift LT may be atypical, it is very light, exerts almost no pressure and very little flexing. With the strap stabilizers I had discussed here in the thread for that mask, the mask does not move around at all.. The only moving part I expect to break early (1+ years?) is the short 10" tube that attaches the mask to the main cpap tube, because that flexes when I turn from side to side.

DreamDiver wrote:

Kiralynx wrote:It may be time, not for phone calls or emails, but for real, physical letters.... these days, those have much more impact.

Kiralynx,

Writing letters goes far, but in my opinion, what really hits these companies is non-profit groups that represent hundreds or thousands of people using their products. I'm curious how many people here would be interested in starting just such an association. If enough of us are fed up with the tactics/antics from "resmodics" or "respirmedics" or whatever, we could release press releases to various health magazines, etc. to make a larger number of people aware of the challenges we face with:
a. insurance - find out why the costs paid for by most insurance companies seem to add up so that you end up paying more by going to a local DME through insurance than you would if you just bought the equipment on line.
b. the bogus need for a pressure prescription and the real need for better education of those who use the machines
c. making separate pieces available to patients, rather than making them pay for an assembly that includes the one piece you need.
d. a fairer way to pay for the services of a respiratory health professional then by not charging for time and overcharging per piece for machine parts. Charge per visit like any other health professional.
e. make machines available over the counter at any CVL/SmallMart/ etc.

I've made a poll here to start a new thread about it.
viewtopic/t41013/XPAP-Users-Association ... t-one.html

I'd love to hear feedback.

DD,

I don't disagree with any of what you said. In particular, I'd like a method of getting back-ups, so as to prevent the kind of fiasco I'm currently dealing with here:

viewtopic/t40925/Replacement-Schedules.html

However, as I said in your Association thread, nothing in that poll matched what I was considering.

I wished they would make the silicon cushions last longer than they do. I understand the recommendation is to replace them every 3 months. I find this extremely expensive as the ones I use cost around $AU65.00 a pair.

RipVW wrote:Bill, one last question (I promise): Do you use a special ultrasonic cleaning solution in the unit? Thanks!

I just use plain soap and hot water, letting the cavitation effect from the ultrasonic oscillation do the actual cleaning.

Cheers,

Bill

billbolton wrote:

RipVW wrote:Bill, one last question (I promise): Do you use a special ultrasonic cleaning solution in the unit? Thanks!

I just use plain soap and hot water, letting the cavitation effect from the ultrasonic oscillation do the actual cleaning.

Cheers,

Bill

Hmm, I've just been using water.

I'm still on my original nasal pillow.

2 weeks ago was the first time I tried it. I used distilled water and with the heat setting on. I had a lot of trouble with leaks the first couple of nights after that. So, the week after that I was back to doing hand washing, baby shampoo and warm tap water. This weekend, I tried the ultrasonic cleaner again. But, this time just regular tap water. And, I forgot to turn on the heat....

Didn't seem to have any problems with leaks last night.

I did stop into the DME this morning to try and get another nasal pillow, but its more because I'm going on my first trip on Thursday (Penguicon) And, I wanted to have a spare just in case. Unfortunately the DME didn't have Large nasal pillows (all the other sizes though), so it'll be a week before I can get it.

The Dreamer.

I've been on CPAP for 15+ years and just several months ago started using my 4th mask, Swift LT, keeping my Mirage Activa for a backup. I normally wash the mask 2 or 3 times a year but have never changed the seal. The first mask lasted 5 or 6 years before I broke the plastic frame. The LT may not last as long as they seem more delicate than any of the others. I/ve had good luck with all of my equipment. My first CPAP was a REMStar Choice which lasted over 10 years until I knocked it off a table and broke the impellar for which I was unable to obtain a replacement.