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

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.

I got educated here on this forum before I went for my sleep test and seen the DME . I basically told them what I wanted and would take nothing else.

When I got my first machine no one told me anything about about data, machine options , or anything. I asked my DME if one brand or another made any difference and he told me that there wasn't much difference between brands. They had ResMed and Respironics. I was sent home with a brand new M series Bipap Auto set for straight Bi-level at 10 - 18. About a week later I found this forum and realized I lucked out and received a quality machine. The people here helped me find out that there were a lot of choices in masks, that software was available and that this could be made to work. I have only tried sleeping without my machine twice. Once I had a bandage from melanoma removal on my face keeping me from using my machine for one night (pure hell) and the second tine was for a new sleep study (even worse).

Mine didn't tell me anything about anything except that I had the second most severe case of OSA he had ever diagnosed and that I would have to use CPAP. They sent me home with a data capable CPAP but didn't tell anything about it being data capable or about anything at all except how to press the on/off button. So I voted the third option.

A couple of days later I had the great fortune of finding this forum and it changed my life.

Hopefully your term paper will conclude that all apena patients should become members of this forum before getting their equipment or at least as soon as possible after getting it.

Good luck!

I was lucky; Local information was poor, misleading, etc.
Informed here, I pointed out that I needed exhalation relief, and was sold an S9 Elite.
Apparently the S9 Escape was not yet available, because they wanted to sell me an S8 escape.
They pushed the Quattro and Micro off on me, even though neither fit.
Thanks to this forum, I found my (so far) ideal mask, and I was very hard to fit.
I also now have an S9 Autoset, (bought from CPAP.com)
which I find is far better for my comfort and treatment effectiveness.
I don't use the software all the time, but write down all the numbers displayed on my sleep report screen.
I record usage hours, pressure, leak, AHI, and centrals. Nice to see the trends as they occur.
(since June 2010) My notebook is very easy for my doctor to use.

For me, I was kept in the dark and given a basic non-data machine. I used it for 5 years until it broke. I stumbled onto this forum one day and started to learn about all the options and data / reports Auto machines... I was amazed and felt betrayed because my therapy had become less effective.

I now have a auto and pull reports and monitor and adjust my own therapy. I could never go back to a non proactive approach like before.

Why do you think doctors do that? Did your doctor do that to you?

Doc did not explain, nor ask. Just wrote a script for what was then a top of the line xPAP with auto and full data, although I got a prescription for straight pressure.

Further he warned me against using a xPAP forum to get information. He said if I wanted to know something, call his full time RT at the clinic. If one of them did not know, they would ask him and then the RT would get back to me, or get me an appointment as seemed best.

RT at my DME says that over 90 percent of her patients have a straight pressure, no data CPAP, and are perfectly happy with their machines, sleep.

If you want to worry about what to say. Keep in mind that it is widely believed here that the difference between the bottom of the line CPAP to a top of the line Auto with full data, (plus the change to BI -Level or Bi-Pap) is firmware, not the machine underneath. Plus some over the outside plastic differences. Meaning of course for the manufacturer's line. Like Resmed Escape at the bottom to the Resmed S9 VPAP. Although yes, there are some settings in a Resmed S9 Auto which are not in the S9 VPAP ( or so I am told) I often find some one comes along and corrects my miss-understandings and knowledge gaps after I say something.

Anyway. What I am suggesting is that as part of the marketing, companies create the group of basic machines, without full data or Auto to justify charging a higher price for model which is auto, or Bi-Level. I fully concur that they should be paid more for developing the firmware to make the better machine. Just that, since the firmware has been developed,they deliberately create crippled machines to justify the higher cost for the higher machines. This creates these huge problems with insurance policies and which machines they will buy. I suggest the manufacturers could sell the top of the line Auto Bi machines for nearly same price as the bottom machine, and get rid of all the detail that goes with their trying to get more money for (what is now) a Top of Line- State of the Art, machine.

I now see, some months after I suggested the same to Respironics, that cpap.com has a Respironics Bi machine for far less than they used to sell them. I do not know if that is because those same models are being phased out and the manufacturer is dumping them. Plus the bi Machines they are selling have feature settings which I do not know how they compare to other machines.

The problem with selling on top of the line machines, is that big manufacturers then have a problem competing against some companies which specialize in selling really inexpensive bricks, or low data machines.

All the DME people I have talked with have been good natured, generous with their time, knowledge and once or twice have been wrong about some details, usually billing things that I was told by those whose job at the DME did not include billing. Many, when they talk to the DME fail to realize that the DME has different parts, whose people have different jobs. The first contact person, a receptionist knows very little about what I am going to get, or billing. The second person is always a person who is to sign me up and get all the money details, like how I am going to pay. The third person will be a person who is to help me get the right mask for me, advice on this and that. That third person knows nothing about money, nor wants to know, they just want for me to get the sleep I need. The last person is a fully qualified RT, who talks to me very occasionally, but is there if I have a problem that the third can not solve. Then I get my supplies from a warehouse somewhere else, for which there is a go between that is to make sure I get the right supplies, and now is a person I must now initiate the call, and give them a reason why previous parts are no longer usable (Yellow cracked, broken.) If we patients/clients try to talk to the wrong type of person with a question, like asking a billing person about how to keep a mask from leaking, we are likely to feel frustrated, and like the DME is not helpful.

And then again, some DME's hire for such low wages that many are not competent to do what they are supposed to do, as well as being overwhelmed with numbers of patients.

Now I put on my NorEaster wear and hockey helmet to prepare to hear why I am wrong.

Did a lot of web research in the time between my sleep study and getting a machine. I chose data capable/rich because I believe I am most responsible for my health/medical care. Knowledge is power.

blakepro wrote:For me, I was kept in the dark and given a basic non-data machine. I used it for 5 years until it broke. I stumbled onto this forum one day and started to learn about all the options and data / reports Auto machines... I was amazed and felt betrayed because my therapy had become less effective.

I now have a auto and pull reports and monitor and adjust my own therapy. I could never go back to a non proactive approach like before.

Why do you think doctors do that? Did your doctor do that to you?

I've seen a lot of doctors during the past 10 years and noticed that everyone of them had a God complex and that their patients are too stupid or unworthy of understanding their ailments. Heck, I fired 5 cardiologists before I figured out how to take care of my own heart and overall health. I fired two endocrinologists and then let's not forget the sleep doc, fired his ass too.

If anybody is going to play God over my body --- it's going to be me. So any doctor that treats me has to understand up front that he/she works for me and not the other way around. If they advise me they also have to convince me of their advice ... pretty simple relationship.

Hi blakepro: I checked the "Other" category but it might be a good idea to revise the response options in your poll before too many people have voted -- 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. After I checked "Other" I saw that DreamStalker has the same story as mine and he checked the third option. You might get cleaner results if you include a response option that describes what DreamStalker and I both experienced because I think it's really common, maybe even the most common story these days. Otherwise our responses will be 'scattered' among the other options as just started happening with DS's and my responses. (Former researcher here, just wanting you to get the most out of your project. )

kaiasgram wrote: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.

ems wrote:

kaiasgram wrote: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!!

blakepro wrote:

ems wrote:

kaiasgram wrote: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!!

Done.

I came here first but I was so sleep deprived I didn't have clue what was being talked about. This in spite of being a well working software developer. I ended up with an S8 Elite luckily because after a week on it everything suddenly made sense and I wanted that data!

My doctor had no input in my choices he just handed me a sheet of paper with copies of a bunch of business cards on it and said "Go to one of them" and I went to the closest. Paid full price too for lousy service.

Given a non data machine. Kept having trouble and ex sleep doc seemed powerless to figure anything out. So I found this place and figured it out for him. Bought another machine from a member here. Still have the old one as a backup.