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

[blakepro]

Well done blakepro. Really, really nice!

Thanks!

Looks good. Was it just an one-page position paper or part of a larger document?

It was a 2-3 page position paper.


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I just wanted to let everyone know that I got a 97% on the paper.

Thanks again to everyone that took the time to participate and show some support. I really appreciate it.

[kaiasgram]

I just wanted to let everyone know that I got a 97% on the paper.

Sweet!

Congrats!

[khauser]

Very informative! I know, because I learned something from it (mostly about the position of ASAA). Thanks for sharing!

[ChicagoGranny]

Congratulations blakepro! Very good paper worthy of being published. I wonder who would publish it?

I suggest you PM Carolyn Goodman about adding it to the cpaptalk.com CpapWiki.

[SleepyToo2]

Blakepro, as a medical editor but not one associated with any journals/magazines, I can tell you I am impressed with your research and writing skills. Definitely should be encouraged. While this piece is well-written, it is rather short for a lot of journals to be interested - plus, you are disagreeing with the "establishment" thinking. Having said that, it may be worth submitting it to the health reporters associated with your local newspaper, or even the New York Times. Your thoughts deserve wide publication so that hopefully some action will be taken, but please don't hold your breath.

I have been thinking about my own situation a lot lately. During my titration study I slept entirely on my back. At home I sleep mostly on my side. The prescribed pressure wiped out all of the apneas and hypopneas while I was on my back. My situation at home is very different. My physician keeps telling me that I am doing great, but it is the rare day when I feel as good as I did after that titration. Also, SH tells me that I constantly have at least a few hypopneas and some centrals during the night, which seems to correlate with the *&&(^" feelings. Because I own my straight CPAP machine, and have done for 3 years now, I am planning to get my PCP to write a prescription for an auto machine that I will purchase online, since my sleep doc tells me that it is unnecessary. Mediocrity seems to be the standard that we have to deal with in our little world that most people seem to think funny - he snores like a train, ha, ha, ha! That is fine, until "he" (or "she") is found dead in their bed one morning, having passed "peacefully" in their sleep. You have helped me confirm that I do need a more advanced machine, and given me the "courage" to make sure I get one. So thank you for your poll, and your paper.

Edited to add: Just one minor point - you have 2 "unfortunately"s in the last but one paragraph - one should be deleted. Sorry, once and editor always an editor!

[Elle]

Good work. Congratulations.

By the way, my sister teaches people (sometimes older and some not very bright) how to do their own dialysis at home. That to me seems way more complicated and possibly dangerous. I think it would take a huge error for adjusting our own cpap pressures to make it truly dangerous. As many have mentioned leaving us uneducated and unmonitored is dangerous.

People monitoring and self dosing with insulin has been done for ages.

Thank you for presenting your paper.

[teachcsg]

Well done Blakepro! Short and to the point. Very well said and good arguments supporting your thesis. I am impressed.
As an RT that works for a DME I can tell you that most patients (when they come to us) do not have a clue as to what they are getting. Most have not talked with their doctor or bothered to find out anything about obstructive sleep apnea.
I tend to think I work for a pretty good DME company so we do our best to help them understand the therapy and we do explain that the machine they are getting has the data cards that will record etc..
Most have a doctors appt about a month after they receive the machine so the doctor can read the card and tweak the machine.

[chunkyfrog]

My DME made a good show of giving instruction, dumping a flood of minor stuff on me all at once,
while skipping the really important information, which I found here.
For a year or so, we attended the local cpap support group (free food),
but the group was sponsored by the DME's, so you can imagine how that went.
DH was compelled to speak up in front of the entire group when the speaker was spouting out-and-out LIES.
The group seems to be falling apart now, since the sponsors dropped out. No idea if there is a connection,
or if someone considered the sponsorship a bit unethical . . .

[BlackSpinner]

Well done Blakepro! Short and to the point. Very well said and good arguments supporting your thesis. I am impressed.
As an RT that works for a DME I can tell you that most patients (when they come to us) do not have a clue as to what they are getting. Most have not talked with their doctor or bothered to find out anything about obstructive sleep apnea.
I tend to think I work for a pretty good DME company so we do our best to help them understand the therapy and we do explain that the machine they are getting has the data cards that will record etc..
Most have a doctors appt about a month after they receive the machine so the doctor can read the card and tweak the machine.

You can say exactly the same thing about people diagnosed with just about anything. Diabetes is another example. Most people have heard "don't eat sugar" and "they need to shoot up stuff?" But there are good training systems in place, therapists and lots of info. People are not expected to walk in being diabetes specialists.

People with OSA, especially severe OSA, have difficulty learning new things - you know lack of sleep affects memory? So expecting an OSA patient to walk in all peppy and knowledgeable because they researched the subject is clearly a form of victim blaming and very abusive. Does the oncologist expect the patient to instruct hm on how the treat their cancer when they walk in? Childbirth - women have been doing it for millions of years but there are still prenatal classes being given - women are not expected to do all the research themselves.

[kaiasgram]

Most have not talked with their doctor or bothered to find out anything about obstructive sleep apnea.

I second what BlackSpinner said in response to your comments and would add this: In some cases (for example, at Kaiser), most patients are diagnosed, titrated and given machines without ever having contact with a sleep doctor. They may not even have one-on-one time with the RT and instead are herded through the system in small classes. I would flip your statement around and say that more often than not the sleep professionals don't "bother" to provide information and explain treatment options and choices to their patients. blakepro's survey reflects this.

Early on I tried to speak with my primary care provider about my OSA treatment. She asked me what AHI is -- so why would you expect newly diagnosed OSA patients to be armed with good information before their first point of contact with a sleep professional?