What does this mean?

[roster]

Three out of four cpap patients that I talk to cannot tell me the name (brand and model) of the mask that they use.

S.A. answers are OK.

[Wulfman]

Three out of four cpap patients that I talk to cannot tell me the name (brand and model) of the mask that they use.

S.A. answers are OK.

No S.A. answers from ME.

I know what you mean, rooster. I've encountered it before, too. I think it's kinda scary that something this vital to one's health is somewhat an "unknown" to so many. Not only the things you've mentioned, but I'll bet most don't even know what their pressure is, either.

Den

[Catnapper]

I bet they can't tell you what pressure, either.

[Alisha]

Rooster, you must be talking to patients who do not read this forum. If so, I find the same to be true.

Actually, before I started reading the forum, I propably couldn't have told you the mask or cpap I was using. That's because most sleep docs, DME's, and RTs don't tell us much about treatment, do little if any follow-up, and don't discuss the different machines and masks with us, IMHO. If they don't know they have choices, why pay attention to the names on their machine and mask.

And they say ignorance is bliss.

Regards,

Alisha

[Linda3032]

Ditto here. I'm the 4th person I know of on cpap therapy. The other 3 know squat about their machines, pressures, and masks. I've tried to educate them, interest them in the forum, etc, etc, etc,.. I guess they are just lazy.

I even make them hose covers - and they thought I was the so clever ... Did I tell them I didn't invent them? Of course not.

[deebatt]

i'm not really shocked. I work in the medical field and its one of those thorns in my side when i see so many people who know diddly squat about their own bodies, health and medical care. It never ceases to amaze me how many people have no clue what surgeries they have done or if they even have any thing surgically implanted in their bodies (im not nosey, its part of my job to screen patients for metal/implanted devices in their bodies). ..i would say a good 20% at least of people cant tell you what kinds of surgery they had on their bodies. Ok people...you let someone put you under anesthesia, cut you open, mess with your insides......and you have NO CLUE what they did? Oye.....so along those lines i guess it shouldnt suprise me that people have no clue what type of cpap equipment/mask they are using.

actually, come to think of it, a co-worker of mine started cpap a few months before me and she knows NOTHING about. I've tried to hook her up here but shes more interested in playing online poker all night online because she still cant sleep

[ca_hosehead]

I'm not surprised that the people that you talk to don't know what mask they use.

The people that frequent this forum are very different than the general public. They are taking control of their own therapy and are not simply "doing what the Doctor says." They like to (or in some cases, need to) tweak the therapy to get the best results. They don't get the support they feelthey need from their DME. They are better looking and dare I say it, sexier than members of the general population.

[bdp522]

I now several people on xpap. None know what mask, machine, pressure, or diagnosis! They simply say that they are supposed to use a machine at night. Note I said supposed to! Not one of them have used it for an entire night and they have all had thier stuff longer than I have(6 1/2 mos for me). I've tried talking to them, leading them here, showing them my stuff, and anything else I could think of. They have no interest. But while I'm doing more and feeling better all the time...They would rather sit around and complain about how tired they are.

Brenda

[Goofproof]

Some that post here also aren't aware of the machine they use or who makes it. It's kind of sad. Jim

I even checked out the defibulator, they put in me. It's my health, I've abused it in the past, trying to feed my family, but now we try to take care of me, too little too late. Jim

BTW: a defibulator Dr. is like the XPAP Dr., I ask them when they were going to send me my Magnet Card, they said I don't need one. (The Magnet is to put over the implant to shut it down, incase it decides to go crazy) So like XPAP, we aren't supposed to have control over the unit. Jim

[lyss]

I don't know about everyone else, but when I was set up with my machine she purposely showed me how to work around the menu and the set up, and told me that she didn't like the idea of a patient not being able to control their therapy. She explained everything to me very well. It will only have been a week on Thursday and she already called this morning to ask how it was going.

Myself, when something is wrong with me I like to know more about it, and what I can do for myself. I don't know anyone else on CPAP but I know plenty of people stupid about their health care. When asked why they don't know more about a certain condition that THEY HAVE, they say they weren't told anymore, when I ask why they haven't looked they say, in all seriousness "I don't want to scare myself." *blink*

Besides, I'm only 23, so what do I know?

[Slinky]

And then there are those muddled, befuddled patients who are still under the impression that doctors walk on water!

Grrrr! My husband is one. Whatever doctor says is gospel. Of course, since he isn't always happy w/what doctors says or scripts, or w/the side effects of what doctor scripts getting him to even GO to the doctor is like pulling hen's teeth! (There are none to pull).

[GaryA]

It's not surprising.

I'm newly on the therapy. Just started this week. My Dr picked out the machine and the mask, with offering no alternatives. It's only that I went on line and somehow found this forum that I began education myself. Then I started asking the DME questions. The DME really wasn't much help either.

I've learned a lot from reading past forums. Thanks to all who contributed.

I have one question. Neither my Dr and DME disused software or readers. I guess it's because they are not covered by insurance. It also seems that many members of this forum highly recommend this approach. Can you recommend the best packages and their advantages?

I believe my machine (Resperinics BiPap M Series) has a port.

Thanks.

[Goofproof]

It's not surprising.

I'm newly on the therapy. Just started this week. My Dr picked out the machine and the mask, with offering no alternatives. It's only that I went on line and somehow found this forum that I began education myself. Then I started asking the DME questions. The DME really wasn't much help either.

I've learned a lot from reading past forums. Thanks to all who contributed.

I have one question. Neither my Dr and DME disused software or readers. I guess it's because they are not covered by insurance. It also seems that many members of this forum highly recommend this approach. Can you recommend the best packages and their advantages?

I believe my machine (Resperinics BiPap M Series) has a port.

Thanks.

The software has to match the machine, You are fortinate, Yours uses the Encore Pro software, it's about $100 at cpap.com, it you ouder Filters or something to get the price over $100, shipping is free. You need the DT3500 card reader USB, Google "2Factors" I bought 2 so I can test if something fails. cpap.com also has the package software and reader.

On the 2Factors site you need to download the install for the DT3500 for Encore Pro, the one that ships with it is the wrong one.

THE BiPAP PLUS MODEL, doesn't record data!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[KimberlyinMN]

I have to say that if I hadn't found this forum, I probably wouldn't even have a clue that there would be other masks than what the DME offers. I think the only ones they had when I got my first mask was the Comfortfull 2 (full face) and maybe the Swift and Comfortlite 2.

When I was leaving after my sleep study, the technician made a point of telling me that I should research masks because there might be something out there that I really like. (Even though she couldn't tell me that I had sleep apnea, I kind of picked up the hint.)

I think that most of us here are way more informed just because we are sharing our experiences with masks, etc. I think of how much more I like the ComfortLite because I have the awesome cover made by padacheek. I never would have learned about the Aussie hose. (I'm sure the list could go on and on regarding what I've learned here.)

Kimberly

[Offerocker]

i'm not really shocked. I work in the medical field and its one of those thorns in my side when i see so many people who know diddly squat about their own bodies, health and medical care. It never ceases to amaze me how many people have no clue what surgeries they have done or if they even have any thing surgically implanted in their bodies

I've had a Caldwell-Luc and Harrington Instrumentation.

When I write that down on the 'Information List' at a Dr.'s office, you'd be surprised at how many times I'm asked WHAT'S THAT?

I WANT to know, else I'm just another little puppy that's doing what it's told - blindly. I'm finding out that more doctors are expecting that of their patients now, unfortunately.

My ortho didn't schedule surgery UNTIL I had no more questions to ask him!
His theory was that if WE do our homework, then there will be no surprises for me, as I'll know what to expect, and not worry about it if/when it happens. He wasn't cloned, unfortunately.

actually, come to think of it, a co-worker of mine started cpap a few months before me and she knows NOTHING about. I've tried to hook her up here but shes more interested in playing online poker all night online because she still cant sleep

Isn't that aggravating? Some people would rather complain than help themselves. I'm too curious, and have a need to be in control so that I'm NOT another sheep.

I will admit that I have a long way to go, especially in monitoring and knowing my 'numbers', but there is someone here 'nudging' me - where else can you find a friend like that?

THIS forum has done it all for me. I found it out of necessity, and have kept with it out of necessity. It is a tether to my well-being - I certainly won't get this kind of information or quality of help anywhere else.

The people here are the absolute BEST!

I am glad for the lucky few who DO have concerned activists looking out for them, as another poster mentioned. So Rare!

I have told the RT at the most recent DME that I'm dealing with about this site....do you think he's visited it YET? NO! So, he depends on whatever the manufacturers tell him, and is not "in the real world", nor is his information complete. So sad that they've lost the meaning of the word "therapy" in their job description.