*UPDATED with my paper*Please take this poll / college paper

[Dave908]

I was one of the "other" answers. I was diagnosed in 1993, and options were very limited at that time. My Dr. did not have a lot of options to offer me outside of the type of mask and the choice of using or not using a passive humidifier. He left a couple years into my treatment and I didn't like his replacement so I went it alone for a while until my insurance would not send me replacements without a new prescription. My new sleep doc, to her credit, did discuss all available options out there with me, and we decided together on my APAP.

[SleepyToo2]

Given an Escape. Found the other forum and learned that the machine wouldn't "cut it" for really knowing what was going on. Contacted the insurance company because the DME was in the wrong direction for me to get there before/after work. Found a great place who got me a Remstar Pro. Then I had to switch DMEs because of insurance companies changing. Got me a System One Pro (after a bit of a fight) which I now own. Rarely go to the DME because I buy my supplies (mostly) from the hosts of this site. Need to place another order - was waiting for news of the Wisp, but have learned that it may not be for everyone, so I'll stick with the Aloha ...

To get back on topic, I think there is a great need for docs and DMEs to really find out what it means to have sleep apnea. Masking up every night is a pain that they do not understand because they have never done it. However, it is a pain I will willingly put up with every night because the pain of not asking up is far worse. Maybe every sleep doc needs to do a sleep study and a titration study before they can get certified in sleep medicine. And every DME should be required to show documented compliance with CPAP before getting approval from the insurance companies that they work with. Maybe then we would get better care.

Feel free to quote me in your paper.

Good luck, and let us know how you get on.

[DreamStalker]

Hello everyone, I’m currently putting together a debate paper for a college course I’m taking about patient rights and I’ve chosen to focus on how people with sleep apnea are treated by doctors and DMEs when they are first diagnosed.

Could you please take a moment to vote in my poll so I can use the statistics to back up my claims. (Or to help me relize I'm wrong)
If you feel like discussing the topic below that would be great too. If you do post about your experience below, may I please have permission to use your quote in my paper?
Any participation or help would be very appreciated.
Thanks.

For a statistical discussion, what exactly is your claim(s) ... hypothesis?

I guess we should have asked this from the start.

[zoocrewphoto]

I think quite a few of us were given data capable and APAP machines from the start but not told about how to monitor our therapy or even that we could.

Exactly. I clicked "other" also.

Thanks for all the great feedback from everyone so far! I have taken the advice from several of you and added an option for getting an advanced machine but not knowing how to do anything with it. This did reset the poll though so if you wouldn't mind re-voting, I would appreciate it!
Thanks everyone!!

That's what I clicked. My doctor picked my machine and told me that he likes the software it uses. I joined this group the day I got my equipment and was pleased to learn that I could look at data and that I had a great machine. And my doctor is happy with me viewing reports. He didn't know there was a free software option for patients, and he was pleased with that. I suspect he may tell new patients now.

[kaiasgram]

Thanks for all the great feedback from everyone so far! I have taken the advice from several of you and added an option for getting an advanced machine but not knowing how to do anything with it. This did reset the poll though so if you wouldn't mind re-voting, I would appreciate it!
Thanks everyone!!

Glad the feedback helped -- I re-voted.

You mentioned this was for a debate paper -- when you have time would you tell us more about it? Sounds interesting.

[jnk]

Went something like this.

After my diagnostic PSG, I researched the heck out of OSA and PAP treatment before my titration. While getting wired up for the titration PSG, I asked the tech how he felt about bilevel. He got the hint. He noted that I fought the pressure until he tried bilevel that night. Techs are the unsung heroes of sleep medicine, in my opinion.

Sleep doc called me later to tell me my prescription was 16/14 bilevel. I said that Rx didn't jive with AASM recommendations of a 4 cm delta. So he said he'd change it to 16/12. So I "asked" wouldn't I benefit from autobilevel at those pressures. He said insurance doesn't like to pay for autobilevel. I said he should let me worry about my insurance. He ended up writing "patient may use auto" on the bilevel Rx (I assume that wording was to cover his butt). When DME delivered a non-auto bilevel, I made the argument that the word "auto" was on my Rx, so I wouldn't sign for anything else. At that time, all autos were efficacy-data machines. That's how I made sure I got data.

All in all, I think sleep docs mostly just want to diagnose and prescribe and leave the actual treatment-machine decisions to whatever the DME, patient, and payers work out among themselves. I don't expect sleep docs to get their hands dirty with specific machine instructions unless the patient asks the sleep doc directly to get involved.

When I was fighting with my DME (now my former DME) about masks, I called the sleep doc's office. The sleep doc called me back the same day to say, "Jeff, you just tell me what to write on the pad and I'll write it and have it faxed wherever you want me to fax it." Now THAT'S a sleep doc that managed to earn his take of the loot in the sleep-medicine process, in my opinion.

I assume that at least some sleep docs are just as willing to fight for what their patients need whenever their patients are willing to be vocal about their needs. Once a doc puts the instruction on the Rx, and a patient knows what the Rx says, an educated patient may then have just the weapon needed to fight an unreasonable, uncooperative DME company.

I waive all rights to the above words.-jnk

[MagsterMile]

I was given a basic cpap machine. The DME told me that medicare would only approve me for the basic machine even though I had many centrals and a few OAs. I was on it for 3 weeks and was in agony. I called to come back in and talk about it. Was sent to take a second sleep test. Changed me over to a S9 Vpap and was told that I had 'severe' sleep apnea. Its not easy getting the DME Tech to part with any information. I've had to do most of my research myself, was still feeling awful and ready to quit but was called back in to meet with the Dr. Dr encouraged me to keep trying to make it work since my readings were very severe. I've been busy trying to educate myself since the DME won't give me anything to work with. I've just downloaded the free 'Sleepyhead' software to try and interpret the readings on my own since the DME isn't going to help. I'm even having a hard time getting needed supplies. I've ordered a few items from Amazon (they do have the best prices from what I've researched - my income is very limited) to tied me over for awhile. I hope I've been helpful and not to 'chatty' as I am want to do at times.

[blakepro]

Hello everyone, I’m currently putting together a debate paper for a college course I’m taking about patient rights and I’ve chosen to focus on how people with sleep apnea are treated by doctors and DMEs when they are first diagnosed.

Could you please take a moment to vote in my poll so I can use the statistics to back up my claims. (Or to help me relize I'm wrong)
If you feel like discussing the topic below that would be great too. If you do post about your experience below, may I please have permission to use your quote in my paper?
Any participation or help would be very appreciated.
Thanks.

For a statistical discussion, what exactly is your claim(s) ... hypothesis?

I guess we should have asked this from the start.

I'm in early drafts at this point and part of the process is engaging in a debate with a fellow student who tries to point out weak parts in your argument or help you understand the opposite position better. Here is a sample of part of my opening statement draft.

...the problem is, most people don’t even know they have it. And what’s worse, when they are diagnosed, they are typically kept in the dark about the variety of effective treatment options available to them. Instead, they are just given a very basic solution without any way to monitor the success of the treatment. Doing this is like keeping a diabetic person from checking their own blood sugar levels. I believe the patient should be informed and empowered with tools and information that will allow them to be involved in their treatment rather than having to rely solely on an occasional doctor visit to find out if the treatment is working effectively.

After engaging in some debate on the subject, my opposition questioned how I could know this is the case. It was pointed out that I have no evidence to prove that this is what happens to a lot of Apnea patients. They were right, I don't have any scientific studies or legitimate information sources that support my claim. I knew it was the case with myself and every single person I've met in person with the condition... I have also been kicking around this forum long enough to know this happens to a lot of us... Still, I couldn't be sure that I'm not just making an assumption here. SO I wanted to get the voice of the people here to find out how close to the truth I am. This will either shatter my claim, or strengthen it. - Granted, this is a non-scientific study, but it should be admissible in my case here with what I'm trying to do.

I do want to say that I really appreciate the support you are all showing and I appreciate your participation. We have a good community here and it means a lot to me that you are all willing to help by submitting your personal stories for consideration.

[kaiasgram]

blakepro,
The official position of the American Sleep Apnea Association is reflected in the Terms of Use on their forum. While they do permit discussion of software monitoring, they forbid and censor attempts to discuss patients adjusting their own pressure settings. Since your general argument is that patients are not encouraged to be active participants in their therapy, I would think you could cite this in support of your argument (or at least keep it in your back pocket in case it becomes relevant to bring up :

Posts about CPAP adjustments:
Although the ASAA advocates being proactive in ones treatment, we can not advocate or encourage making pressure adjustments or other CPAP clinical adjustments without consulting with your physician. Please do not post instructions or how to guides for making adjustments or entering clinician menus to make adjustments. We thank you for your understanding. Do not post links to clinician menus or similar menus not authorized for access by manufacturers; these sorts of posts will be moderated.

[eeckel]

When your paper is done could you please post it here. Also let us know how the debate goes. We're cheering you on.

Like many others I was given a good machine but little education about its capacities. I learned that stuff here. In the beginning I was distracted by the harshness of the compliance expectations. My DME lied to me and exaggerated the expectations. When I learned what they typically are, I confronted her, she said she does it to "motivate" people on her case load.

[49er]

Hi Blakepro,

I checked the "other" option since I don't have health insurance.

My former sleep doctor did advise me to buy a data capable machine but other than that, I was on my own as far as what to chose. Thanks to this forum, I knew what not to get.

Because my doctor advised me I needed an autopap due to having a home sleep study that didn't have a formal titration, I decided to purchase a DeVilbiss Intellipap since it was one of the cheaper ones and had received good reviews. But in retrospect, I feel that was a mistake for various reasons even though it is a good product. Another post.

Anyway, this woman was totally worthless as far as helping me interpret the data since she felt all my difficulties in staying asleep on the machine were psych issues. She promised to call me back after reviewing my data but never did.

When I expressed concern about the machine being at the right pressure range, her response was that it would find the right pressure. Yeah right!

To make a long story short, I finally realized that by being able to study my own data, without wearing a neck collar, I had no chance in heck of finding a pressure that would get my AHI below 5 unless I wanted to go up to around 20. Why I need the neck collar is a mystery but I suspect that due to my petite facial features, that full face masks are causing my jaw to go backwards instead of forwards. Unfortunately, due to nasal congestion that may be only be able to be fixed by surgery, a full face mask is my only option.

After finally finding that a straight cpap pressure of 8.5 was the best for me after several stops and starts, I figured that wearing the neck collar was a minor inconvenience although I do wish I could throw it out the window

Anyway, my point is that no doctor in heck would have figured this out so it is damm good thing I knew how to take matters into my own hand. This forum gave me the impetus to do that. And without health insurance, I would have paid a heavy price literally and figuratively if I had depended on doctors.

Thank you for choosing this topic. Like everyone else, I will be interested in your final report.

49er

[Haztek]

Been on CPAP since May 2001. I don't know if data capable machines existed then or not. I used the same CPAP machine from May 2001 to Dec 2011! Only spoke with a sleep doctor once in all that time, and I was not impressed. Got a data capable machine in Dec 2011 and an using it in APAP mode.

[chunkyfrog]

In a sense, having insurance handicaps us, because it skews our options toward depending on doctors and DME's, whose motivation lies along other paths, not related to our health. We are much better off taking charge of our
own therapy, and when we shop online, we are able to see the REAL difference in cost between rich-data
machines and dumb bricks. We are much better off being able to make truly informed choices, and using the
information we gain here to optimize our treatment in ways that our doctors may not even imagine.

(permission to reprint, in part or entirety, is granted to anyone who will use it in the intent it was written)

[guestagain]

Been on cpap 14 years. Sleep Center set me up with DME.....DME gave me the cheapest crap. Took a month of misery to educate myself and buy a better mask and machine. Found a helpful website before this one was outthere. This web site is the best and most helpful and you should mention it in your debate or paper. Good luck in your efforts!

[StuUnderPressure]

Does anyone know the exact date this forum was set up?