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New to Apnea Board - Frustrated with Fragmented Care
#11
One thing I'd like to mention is your mask leaking. You found some aloe vera stuff to use, and said you can't move a lot with it. As an alternative, you could try mask liners if you haven't done that already. I didn't know about that aloe vera stuff, and I don't think I'd want to use it anyway. My first week of cpap, back in February, was absolutely rotten... my full face mask leaked and squealed all night long... but then I learned about mask liners... "mask liners? what are they?" I thought, and immediately googled "cpap mask liners." I got some hits, and decided to try each kind to see what I liked best. I ordered the ones I couldn't purchase locally, and purchased another from my DME. They were a game changer for me, and I'm now making my own based on the liners I can purchase locally.
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#12
The one constant Doctors learn about me no matter what kind of doc or DME they are is my response to a statement like " No questions until Im done". Its a fairly simple response. It goes something like, " Guess what Doc. Your done now." Usually heard as I walk or crawl out of the door LOL.

Took me a lot of years and a few close Doctor induced close calls where they did something or prescribed something they should have known better to learn Im usually better off doing that and seeing someone else after ive educated myself as best I can on the specific subject im dealing with. Same with dealing with DMEs the internet is your friend, along with calling your insurance provider and discovering that cpap brick or apap loaded with all the zoomies are the same code and the DME gets paid the same money for either. They just make more per machine for every cheaper machine they can push off. Like a 300 buck profit per machine vs 800 bucks profit per machine. You aint gonna hurt em financially either way.
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#13
I'll add that I don't know how who started the rumor that the Mirage FX is a good mask for side sleepers. It isn't at all. Way too easily knocked out of position. Leaks are virtually guaranteed, in addition to loud, cold blowing exhaust against pillows. Definitely a good choice for exclusive back sleepers, but totally unsuitable for side sleeping. I recommend spending a lot of effort trying other masks. I did, and it definitely paid off with the Airfit P10.
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#14
Residing in the USA my pitifull take on our healthcare system leaves me stuck with a machine that a lame DME set me up with. Zilch for customer service when I questioned their choice of machine. Now the insurance company says because they converted my machine to a purchase from a rental I would have to get a note from my MD why an S9 would be better than an AFLEX. I've seen studies online comparing the algorityms and the S9 seems to be better. My care is being dictated by a numbers cruncher clear accross the country. I want to just take this AFLEX back and tell them where to put it.

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#15
Problem is that this is not just a US occurrence. Here in Canada, the experience Paige88 describes is just as common. You get a prescription and a brick with little to no support and, if lucky, 5 minutes to ask questions after you've been blasted with info for an hour.

Mask wise, it was a revelation to Mrs. Psycho when we changed DMEs...she actually said "You mean, there are options for masks?" She's getting a much better sleep now that she has found a mask that works better for her. I have found my best performance for leaks and AHI, but it doesn't mean I am done yet in my journey either.

To any new or prospective papper reading this thread: we know it is a lot to take in. For your sake, educate yourself before you go to the DME (place you get your CPAP from) about CPAPs and masks....there are differences between machines and no, there are not only 3 masks out there (pillows, nasal mask or full face mask). Those are three types or styles of masks, but there are literally tens to hundreds of variations of each type. If you've been placed on CPAP therapy, it is because you have a health condition that requires it, so demand to be more than an assembly line patient (or "slam, bam, profit ma'am")....it is your health, after all.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#16
(10-22-2014, 11:14 AM)sortlf Wrote: Residing in the USA my pitifull take on our healthcare system leaves me stuck with a machine that a lame DME set me up with. Zilch for customer service when I questioned their choice of machine. Now the insurance company says because they converted my machine to a purchase from a rental I would have to get a note from my MD why an S9 would be better than an AFLEX. I've seen studies online comparing the algorityms and the S9 seems to be better. My care is being dictated by a numbers cruncher clear accross the country. I want to just take this AFLEX back and tell them where to put it.

Welcome to the board.

I presume you have a PRS1 Auto CPAP. I don't think the S9 AutoSet has any clear advantage over the PRS1.

What do you think is better about the S9 machine.

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#17
(10-22-2014, 11:14 AM)sortlf Wrote: Residing in the USA my pitifull take on our healthcare system leaves me stuck with a machine that a lame DME set me up with. Zilch for customer service when I questioned their choice of machine. Now the insurance company says because they converted my machine to a purchase from a rental I would have to get a note from my MD why an S9 would be better than an AFLEX. I've seen studies online comparing the algorityms and the S9 seems to be better. My care is being dictated by a numbers cruncher clear accross the country. I want to just take this AFLEX back and tell them where to put it.
Hi sortlf,
WELCOME! to the forum.!
trish6hundred
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#18
Yes I agree that DME's and I believe sleep doctors are in cohoots. When I complained to my sleep doctor about the DME and some of the advice I was given which I knew to be incorrect and I am a newb at this, she just shrugged it off. If I didnt know any better I would have said she was getting a kick back from the DME for every machine they sold to her patients. So I wasnt at all surprised when I presented her with a printed prescription already filled out except for the pressures and wanting her signature. Told her I was going to USA in January and it was my intent to buy a machine while i was over there for a fraction of the price. Her response being I would have no warranty, the power supply was not the right one, would have to pay a heap of tax when I got back to Australia, blah blah blah. Anyway got the signature, scanned a copy and sent to Supplier #10 and now have a machine here, at a fraction of the cost and something I am in total control of now. I have learnt so much since joining this forum, and am amazed at the amount of support and advice members have for on another here. In actual fact, I feel as though the professionals are here and I am in much better hands here than my local DME and sleep doctor. For that I am truly grateful. I hope that as i gain more knowledge and experience here, I myself will one day be in a position to be able to answer questions for others.

Thank you one and all for the advice both now and in the future.

Chip
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#19
(10-22-2014, 11:14 AM)sortlf Wrote: I've seen studies online comparing the algorithms and the S9 seems to be better. My care is being dictated by a numbers cruncher clear accross the country. I want to just take this AFLEX back and tell them where to put it.

Hi sortlf, welcome to the forum!

The Philips Respironics System One Remstar Auto with A-Flex is a fine machine. If we are of the opinion that the AutoSet is better it is natural to feel disappointed about not having an AutoSet. But it is usually better to be thankful for what we do have.

Each machine has its good points. Some members who tried both preferred the PRS1 Auto. I think there is no clear "winner" between the two.

I think the ResMed algorithms raise the pressure more aggressively, but that is not always a good thing. It may improve the AHI, but it also may tend to awaken some patients. Also, I think people tend to have less aerophagia (swallowed air) issues with the PRS1 algorithms. But as is often said, everyone's different, and preferences vary.

Take care,
--- Vaughn
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#20
Hi Paige88

I feel your pain, as I'm in exactly the same situation. Ent doc does sleep test, 800 dollars for the home test. I'm told to try CPAP and given to business cards of suppliers. Went along to both, and neither wanted to see the sleep test results, just wanted to sell me a machine. I got lucky with the loan of a German machine for two weeks, had to buy a nasal pillow mask for 200 bucks, with no choice of pillow masks.

I went home and started my research, and purchased Airsense 10 Auto together with 2 different pillow masks, online. Then started therapy and with the help of this forum and another, I now have more confidence and am learning all the time.

Whenever there is a will there is a way!

Good luck and don't let the poor service levels put you off.
Failure is NOT an option.
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