Stop self adjusting your pressure.

StillAnotherGuest wrote:Oh yay, a puzzle!

I don't think this person is a DME because they wouldn't get $$$ from pushing CPAPPRO.

Wow, I missed that. Good point.

StillAnotherGuest wrote:I don't think it's an ASAA conspiracy

I never thought so, either.

StillAnotherGuest wrote:So clearly, the only remaining possibility is...

...a ladies clothing internet retailer!:

Who's bear1mdr?

SAG

OMG, how funny!!!! Who'd'a'thunk it.

As Snoredog said, "Good find", SAG!!

Actually, my bet is that bear1mdr is an RT who:

1. works, or used to work, for a DME.

2. uses cpap.

3. has a sideline business selling clothing on eBay.

4. sells cpap machines occasionally -- who knows how he/she acquires them...maybe they fell off the turnip truck. Good find, too by mommaw!!

5. is sincerely concerned about all the taping and twirling dials stuff he reads on this message board.

6. has lurk read this board for quite some time, growing more and more appalled until he couldn't stand it any more and exploded into saying something.

7. doesn't realize that his experience and opinion as an educated RT and cpap user isn't the only way to look at what works for other people.

8. sure got off to a poor start, coming across as ordering adults what to do/not do.

9. has a bit too thin a skin for message-boarding.

10. might have a bit of ego problem. A "What I say is the only way that's right" kind of attitude.

10's a nice round number, so I'll stop there.

10's a nice pressure, too, now that I think about it.

I for one am glad I change my own pressure with the help of software. For over a year after starting xpap therapy I was still extremely tired & falling asleep anytime I sat down. My first sleep study determined my pressure to be 8 cm. I was still extremely tired & requested another sleep study this study determined my pressure at 6 cm. Being totally frustrated I purchased the software. At 6- 8 cm my AHI was anywhere from 6- 12. I tweaked my pressure & now my AHi run between0-1 a big difference. My B/P has also dropped considerablely too. If I wouldn't have tweaked my pressure I would still be suffering. I thank every one on this board for my success. Stick around you may learn something new.

Talk about stirring up a hornets nest!!!! I think most of you misinterpreted my post as preachy because I was so concerned about the negative impact on your health that I didn't take the time to sugarcoat my post.

I will try to begin again by introducing myself and giving you a brief background so you can judge for yourself whether or not I have my head up my butt or not (great pic btw, I must have laughed for at least five mins.).

To start with I would like to say HI to everyone one the board and clear the air about a few misconceptions I have noted in some of your post. I am a RT who has spent his entire professional life in the home care/DME industry. It didn't take me long to figure out that most DME companies were strictly in it for the money and not really interested in helping anyone so I decided to start my own DME company to try to do what other DMEs should have been doing all along, improve health care through understanding and caring. I won't post the name of the company here because I don't want to give anyone the impression that I'm looking for new business.

(No, I was not flipping burgers just before I got my RT LIC., I was working nights as a security guard which might require even less skill then flipping burgers)

(No, I'm not an x employee of Nordstrom who ran off with a bunch of their inventory, my wife uses my user name on eBay to sell stuff and if the person who posted that link wants to know something about who I am or what I do, they can just ask me, I have nothing to hide)

(No, I am not a CPAP PRO sales person and I do not base my suggestions on whether or not it will make me any money, I base them on whether or not I think they will be helpful)

(No, I am not from any other board on the net and this should have been obvious to everyone by all the mistakes I have already made and the many more I will undoubtedly make in the future because I am new to posting on these types of boards "Way too many people don't understand online dynamics." Sounds like me to me)

I have been a CPAP user for about five years now and have personally set up, instructed, and followed more than 1,000 CPAP/BiPAP/APAP patients. Please do not think I'm bragging here, I'm just trying to give you some background info so you can decide for yourselves whether or not I have the experience to voice my opinion on your board.

One of the reasons I decided to start my own company was the lack of patient education and follow-up provided by other DME companies and the huge number of patients who failed to acclimate to PAP therapy simply because they did not get the information/attention they needed to be successful. The highest success rate I could achieve while working for someone else was about 70% which was totally unacceptable to me. Now that I have the power to dedicate the amount of time I think an RT should spend with each patient I can honestly say that more than 95% of the PAP patients we provide equipment to are successful with their therapy (again, I'm not trying to be a braggart).

I will have to cut my intro short for now, duty calls and my boss is a real task master. It’s kinda hard to get fired when you are your own boss so I guess that means “I’ll be back” (should be read with a strong Austrian accent).

My strange, oops, estranged husband, lives with a RT. She ordered him a bare bones cpap. He needs to lose weight, which would mean an adjustment in pressure probably, & has an navel hernia. No cflex for him! I think she's getting even for me!

My DME told me it was against the law!

I just for got to ask what and whoose law

Once the kind folks on this forum informed me to the fact that there was no law, I lost all respect for my DME.

Bear1mdr,

I have to give you credit for not slinking away and providing a thoughtful response. Yes, as has previously been noted the dynamics of internet forums are a challenge. It took me awhile to accept the fact that flame wars (unfortunately) do happen and it's not typically one person's "fault". It takes two to tango .....

I hope you'll take the time to "listen" thoughtfully to the frustrations of those of us who have had difficult experiences with docs and DME's. I'm one of the relatively lucky ones but have still gained much insight from the members of this forum.

Mindy

That sounds much better, bear. Thank you.

Glad to hear that my list needs some corrections:

1. is a DME

3. wife sells clothing on eBay

4. is selling own business's machines -- no turnip truck involved.

9. is hanging in here -- skin is sufficiently thick. Also seems to have a good sense of humor after all. That's good!!

10. what I was seeing as a possible ego problem may just be a genuinely strong opinion about safety-in-treatment issues. We all have strong opinions from time to time. I'd still tape and twirl dials, but I can understand that some people think that's wrong, wrong, wrong for everyone, no matter what. Difference of opinion.

Welcome to the board, bear.

It IS against the law for your DME company to change your pressure without a new prescription from your doctor but there is no law preventing you from changing your own pressure. Good idea or bad idea? I guess it depends on the patient and the available data and wisdom.

Just from my own personal experience I have interacted with two different DME's where I live and when I asked them about the Hans-Rudolph mask or the Soyala mask they both said, "What??" Further evidence that DME's are ignorant- they should at least be familiar with all the products on the market even if they don't sell them. Aren't there trade rags that have adverts for this stuff?

Keep in mind that PAP software is not intended for end-users and it's not because they think patients are a bunch of idiots who could not possibly understand how to read the data. Anyone want to venture a guess as to why?

I also would like to welcome Bear to the board. I would like to hear what you have for an alterative to taping (actually I use polygrip strips). Taping bothered me too much. The only alternative anyone has had so far is a full face mask. With the leaks, adjustment problems, clostraphobia, chin straps that don't work, the best i ever did with a Full face mask was AHI's in the 20's. With polygrip and the NA II I have not had but one AHI over 1 in the last 3 months. And I can tell the difference even if I could not read the numbers. As most have found feeling so much better is worth the risk of tapeing. If there was a safer alternative I think we would all jump at the chance. In this case what would you tell your patient.

Jerry

yea---because it comes with NO manual

bear1mdr wrote:Anyone want to venture a guess as to why?

Because it cuts the DME right out of the loop. It's ALL about the money.

There is more to it- medical device, license, etc. but that's the short answer.

btw - cars weren't intended to kill people, but they do.

rested gal, you might also be interested to know that the devices I sell on cpapauction.com are less than $50.00 over what I paid for them which is really pi**ing off my venders who have threatened to cut me off if I don't rise my prices. I guess that's what you get for trying to offer a reasonable price to the millions of people who don't have insurance or a trust fund.

bear1mdr wrote:Talk about stirring up a hornets nest!!!! I think most of you misinterpreted my post as preachy because I was so concerned about the negative impact on your health that I didn't take the time to sugarcoat my post.

Bear,

Thanks for sticking your head back into the "hornets nest." That says a lot about you. At least we know that you're a brave man.

As you can see, we're a pretty passionate bunch (so you'll probably fit right in), but when we're approached in the right way, we're more then ready to listen (even though we still may disagree. This forum tends to be made up of some pretty independent thinkers, but we do love a good discussion).

That being said, the past is now "water under the bridge" (Hey, we're on CPAP, so we sometimes have a very short attention span and quickly forgive offenses. ).

Welcome to the forum!