Frustrated newbie.

[plumtuckered]

I was just diagnosed with sleep apnea and got my first cpap machine a couple of weeks ago. I have just started reading this forum and have found out a lot that I was not told. I did not get to see my doctor after completing the titration study and when I called his office I was told that normally new patients needed to wait 3 months before seeing the Dr again! I was given a Resmed Escape II with H4i humidifier. I was charged over $1600 for the machine of which my part was $460 which seems a bit much after doing some research.

I am trying to find out how to get data out of this unit to see how I am doing. Also I would like to know how to check the settings. Currently, the only thing I can change is the ramp time. My pressure is set at 16 and I don't think the EPR is enabled as it is difficult to exhale. I am also having trouble finding a mask that does not leak. I am using a Mirage Quattro full face mask now, but seem to be having trouble with leaks after I have worn it awhile. It often wakes me up and I have to power off the Escape and reseat the mask each time.

I would appreciate any advice about the machine and dealing with my Dr and supplier.

Thanks

Mike

[drj130]

From the information that I've found on this machine, the only data you can get from it is compliance even if you use the software. Which means only usage data (how many days, how many hours, etc).

Take a look at this site here: http://www.cpap-supply.com/Articles.asp?ID=130 and you will be able to find out how to check the settings for your machine.

I hope that this helps you.

David

[plumtuckered]

Thanks for the great link

Mike

[drj130]

Here to help if I can.

Good luck on getting things set to how you want them.

David

[Pugsy]

Now is the time to push to exchange the Escape for at least the Elite II.
Then you will have a data capable machine. The Escape will not give you any information that is useful to you.

The longer you have the Escape, the harder it will be to get a data capable machine. You have already found out that you could likely have bought the Elite II for what you have paid for the Escape.

[millich]

The Quattro seems to be notorious for leaking at high pressures. My DME - like many others - has been really pushing that mask. I've tried it in 2 different sizes and never could come close to getting rid of the leaks. Very annoying.

I am having good luck with nasal pillows but I'm with you in the journey to find a better FF mask.

Welcome to the board!

[Muse-Inc]

I"m with Pugsy on this -- DITCH THE ESCAPE AND GET AN ELITE! I have the 'dumb' Escape because I was too dumb following my PSG to know I had choices...you cannot optimize your therapy without data. Swap for at least the Elite II; if I were you, I'd try for the AutoSet II, an APAP machine.

[plumtuckered]

Called my DME (American Home Patient) today and asked about the data capability of the Escape II and was told that it did have more data capacity than just hours used even though the Resmed website says different. I was told that I did not need the Elite II and it provided too much info that was just a waste of time. I told them I wanted to at least be able to check to see how I was doing with the machine and was told I did not need that information

He did finally tell me that I could download the software for free from the Resmed website and that the data card was just a standard SD card. I can find nothing about "free" software on Resmed site and the data card is NOT an SD card. I guess they don't even know the equipment they sell.

Also mentioned that I am having a lot of leaks with the Mirage Quattro full face mask at my setting of 16. I was told that that was the mask they used most for patients with high settings and that my problem was just adjustment. That if the mask was off by even a millimter that I would have leaks. Guess I am supposed to glue the mask on when I find the EXACT spot

Dr's office won't give me an appointment for 3 months even when I told them that I never got to talk to the Dr after the study and had questions. I am thinking about trying to go back thru the sleep lab since I work at the same hospital where it was done.

For now, I am just trying to read and educate myself as much as possible.
Mike

[DoriC]

Listening to these DME horror stories from all over the country makes my teeth hurt, I get so mad! The stories about the "support meetings" are no better. Lots of misinformation and downright lying! Why is there such incompetence in this field of medicine?? My own son who is a well educated Dr(did his training at Mt Sinai, NYU and Bellevue in New York) told me that he can only remember a 1hr course on OSA in medical school. Of course that was quite a few years ago but from the looks of things it hasn't gotten much better. Our own Primary Dr who is a respected Geriatric Specialist in practice for 20yrs, also admits that his knowledge of OSA is very limited, mostly some seminars and journal articles, although he did make an accurate diagnosis of my husband's OSA. I don't see how anyone out there who doesn't have access to this forum can manage their own therapy, and it worries me and makes me sad. I guess you can call this a rant which I've done before, but it's not making me feel any better. Sorry.

[plumtuckered]

Having worked in the medical field for 28 years, 7 at a training hospital with residents and interns, I have often seen how little some Doctors really know. Everything is so specialized now that many topics are only given one class session or less. Thus all Doctors only "practice" medicine. We all need to remember that Doctors are only human and prone to mistakes like anyone else, even if they won't admit it! I just wish some of them didn't act like they were infallible and everyone else just idiots.

I advise everyone to learn as much as they can and never be afraid to ask a Doctor questions. Sometimes, you may even get answers!

[Wulfman]

Called my DME (American Home Patient) today and asked about the data capability of the Escape II and was told that it did have more data capacity than just hours used even though the Resmed website says different. I was told that I did not need the Elite II and it provided too much info that was just a waste of time. I told them I wanted to at least be able to check to see how I was doing with the machine and was told I did not need that information

He did finally tell me that I could download the software for free from the Resmed website and that the data card was just a standard SD card. I can find nothing about "free" software on Resmed site and the data card is NOT an SD card. I guess they don't even know the equipment they sell.

Also mentioned that I am having a lot of leaks with the Mirage Quattro full face mask at my setting of 16. I was told that that was the mask they used most for patients with high settings and that my problem was just adjustment. That if the mask was off by even a millimter that I would have leaks. Guess I am supposed to glue the mask on when I find the EXACT spot

Dr's office won't give me an appointment for 3 months even when I told them that I never got to talk to the Dr after the study and had questions. I am thinking about trying to go back thru the sleep lab since I work at the same hospital where it was done.

For now, I am just trying to read and educate myself as much as possible.
Mike

I would RUN......not walk from those people.
Google the company and start reading. Here are some of the links from the brief search I did. I've been aware they were having (serious) problems, so when you mentioned who your DME was, I did some more searching.

It's not their position to tell YOU what machine YOU need for your therapy. They're trying to optimize their profits and lying to you (or at best, just completely stupid and incompetent), which is unacceptable.

Den


http://www.hmenews.com/?p=article&id=hm200903jZTnSY

http://www.nashvillepost.com/news/2009/ ... are_realty

http://topics.nytimes.com/topics/news/b ... index.html

http://www.tradingmarkets.com/.site/new ... s/2471742/

http://www.corporateinformation.com/Com ... =026649103

http://www.ahom.com/about/pdfs/10QJune2 ... elease.pdf

.

[jdm2857]

1. The Escape II only has compliance data.
2. The Elite II's efficacy data has proved very useful to many forum participants.
3. The ResMed S8 machines use smart cards not SD cards. (The optional (and discontinued) ResLink module uses a SmartMedia card.)
4. ResMed does not have software available for free download.
5. The doctor won't answer your questions.

Do you see a problem here? Find some competent heathcare professionals.

[babydoss]

Hi plumbtuckerd... my hubby has his cpap set at 19 pressure. He has used a Respironics ComfortFull 2 mask for the last 2.5 years. It has worked great. For the most part it does not leak. Although I am looking into trying the ComfortGel mask for him now, cause it looks a little softer.

I will tell you that when he first got it cpap in March 2007 it WAS a big adjustment. And this forum made ALL the difference for us. He had some problems at first. Since I sleep with him every night, who would know better than me? I could hear that he was still having some apneas with that "choking" sound.

I spent loads of time on this forum educating myself to the terms and different types of sleep apnea. I came to the conclusion that his pressure may NOT have been high enough. You see they started him out at a 15 pressure.

I went with him to his sleep dr appt and by then I was EDUCATED baby! I was throwing out the sleep terms left and right. I think the dr was shocked bec she asked me if I was a NURSE!!! This forum allowed me to learn ALL that I needed to know about my husband's condition so I could "argue" his case with the dr. I was not leaving there until we got a 2nd sleep study to confirm the required pressure. I was proved RIGHT! Damn them. To be honest, I was SO pissed at the dr that he has not been back to them. Hubby is doing great with his same machine and same type mask.

One thing I DID change. Now that we OWN the machine after "renting" it for a year (hell we BOUGHT it, but they call it rent) I do NOT buy any more supplies thru my DME or go thru the ins co. Hell, it is CHEAPER for me to buy the mask, filters, hoses thru either Ebay, http://www.cpapauction.com (my preference) or cpap.com than to pay the "DISCOUNTED" price thru my insurance co. Yeah right! The mask thru the ins co cost me $100 and about 1/2 on http://www.cpapauction.com.

I have a lady co-worker who has just been diagnosed with SA so we have the same ins co - United Health Care. I told her to HOLD off buying anything until she talks to me. Let her get her RX then I will help her shop.

Keep up with faith and continue educating yourselves!!!
Lee

[DoriC]

Yea, Baby! You found the secret!
After reading and asking lots of questions on this forum,it was very empowering to go all armed and ready for my husband's first visit with the sleep Dr. Once he realized that I was already going in the right direction as to settings,mask, adjustments,etc, and had the software, he didn't have much to say to me except "good job" and pat my husband on the shoulder. I think he was as surprised as I was by the semi-educated questions I was asking and the reports I brought him. At that early stage I wasn't even sure I had retained or understood anything I had learned here. Glad you're here. Dori

[plumtuckered]

Thanks everyone for all the advice and encouragement

An update. One kind soul on here gave me a link to how to get into the Clinician settings and I lowered the pressure from 16 to 12 as an experiment. Slept thru the night without waking up unable to breathe or mask leaking. Tonight, I am going to up the pressure to 14 and see how it goes.

I have also found out that the Dr I am seeing for the sleep apnea is NOT on the staff of the sleep lab, he is a pulmonologist. I am going to try to get my PCP involved as he is the one who started the whole thing. I really want this to work, just got to find the right person who will work with me and not just blindly follow some arbitrary protocol!

Mike