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I have a dream for CPAP use that I announced in a previous blog posting on this site that has sparked a fair amount of controversy which I did not anticipate. The agenda was as follows:

• Users should use their machines at least 5 hours a night, almost every night
• Users should use data-capable machines whenever possible
• Users’ AHIs should be <5.
• Users’ leak rates should be within manufacturers’ established ranges for the masks they are using
• Users’ masks should be comfortable for them
• Users should try an auto-adjusting machine or a machine that provides some comfort feature, such as exhalation relief, if they are having a hard time using a machine without these features
• Once users have data-capable machines, they should have their data closely analyzed at least every week, and a clinician should intervene if the standards are not being met, and work with the user on a mutually agreeable solution

Criticism 1
One clinician wrote: "what can of worms are you trying to open here?" She continued, "Why do
you think everyone needs a data-capable machine? Yes, they are nice, but treatment is the issue, not all the bells and whistles."

My response
My plan is a sensible one that is patient oriented. It is unfortunate that in our broken health care system, such an agenda is met with hostility. As for data-capable machines, they are not merely "bells and whistles," but integral parts of the very treatment you advocate -- without access to the data about how our machines are working, we have no idea how to make adjustments to optimize our treatment.

Criticism 2
"Not everyone's AHI can be gotten below 5, since there is a thing called central apnea, which a cpap cannot treat.

My response
I am aware of central apnea, and that not everyone can reach an AHI below 5. That said, the vast majority of sleep apnea patients have obstructive sleep apnea. And my goal for an AHI below 5 is certainly attainable for most OSA patients, and is the very goal established by the American Academy of Sleep Medicine for treatment.

Criticism 3
"I do believe that people should have mask options, but right now we are all at the mercy of
whatever contract our insurance has negotiated with the manufacturers."

My response
I don't like your victim mentality. You'd be surprised what can be accomplished when you don't accept whatever the doctor says and push actively for something as radical as, heaven forbid, a mask that is comfortable enough to use!

Criticism 4
"My doctor's office does not have the capability to see me every week, nor would they have the equipment to read data from so many manufacturers."

My response
I agree. It is not realistic for the doctor to see you every week to check the data from your machine. That's why I advocate a data-capable machine, so that you can keep track of the data yourself, and raise a red flag when something is off to discuss with a clinician.

Conclusion
My solution for CPAP treatment was shut down right off the bat by someone too frightened to venture out of her "box" to challenge the status quo. I've said it before and I'll say it again: we don't have the luxury of sitting idly by here and hoping that whatever process our doctor puts in place for us is going to work. Why? It probably won't, and another thing: our lives are at stake. Take responsibility for your own health and stop listening to whatever is convenient for your doctor to tell you.

Views: 121

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Comment by Mike on December 26, 2008 at 7:12pm
You're the best!
Comment by Melodie on December 26, 2008 at 7:09pm
Mike - Great! I was hoping you would be up for it! I am pretty much homebound with all my various illnesses, so I have nothing BUT TIME!!!!!!!!!!!! I can help work on it if you get the basics down and saved into some kind of PC-friendly format.
Getting people to sign our petition will be the LEAST of the challenges in my viewpoint, getting something passed into Congress and run to the new President-elect will be the biggest challenge - but if we are both up for it, it IS worth doing and think of all the people it will benefit!

Thank YOU for being so proactive - again!

Just let me know what I can do to help. I am in for the long-haul my friend!

By the way, you can just call me "Mel" as all of my close friends do........:)

Talk soon I hope!
Melodie (Mel) Aultman-Morris
melodieamorris@hotmail.com
Comment by Mike on December 26, 2008 at 6:57pm
Melodie, I'm in -- let's do it.

I'll set up a new blog post on SleepGuide.com that will form the basis of a petition that, when complete, we'll send to the President-elect, executive director of the American Sleep Apnea Association, director of the American Sleep Medicine Association, and others. The challenge will be getting enough people to sign it. We need to send people a link to the petition, everyone we know who might care about Sleep Apnea, to sign it. I'll set it up right now.

Mike
Comment by Melodie on December 26, 2008 at 6:51pm
Mike,
I am NOT afraid to step outside the "box" and if you want to get some kind of petition going that we could sent to Congress - I am all for it and would be more than willing to participate in any way possible.

If our physicians are not going to do anything further, meaning more research and better care, than it is definitely up to us as patients to take the bull by the horns and force our government to do something to help us. Also, we should contact the AMA and other associations, specifically the ones that are in direct relationship to our conditions, and petition THEM to do MORE for us as their patients!

Let's get serious here people! Our lives depend on the equipment and the kind of medical care we receive. We need to do something to make the medical arena and the government wake up and take action.

I am truly sincere in suggesting that we petition both the government AND the medical associations - so if you are up to it, just contact me and we will take it as far as possible.

A fellow sleep apnea patient!
Melodie Aultman-Morris
Cleveland, Tennessee
personal email: melodieamorris@hotmail.com
Comment by Melodie on December 25, 2008 at 12:28am
Mike,
I use a Bi-PAP Auto SV unit and I have the central sleep apnea, but I totally agree with your suggestions! Why should we sit idly by and just "hope" that our doctors are giving us the best treatment for us as individuals? We ARE talking about OUR OWN LIVES HERE!!!!!!!!!!!!!!! I wish someone would do something drastic to improve our poor health system in the USA. Other countries do NOT have the problems we have here and they get better care also, such as in Canada, just as an example. Our medical insurance premiums, co-pays, and prescriptions are out of control - and God forbid if one does not have any insurance! We Americans need to make a very strong stand to get our government to take some very drastic measures to take care of our people - they give away medical care and other things to all the illegal aliens that enter our country, but do not take care of the tax payers! Do not get me started..............

Anyway, I think you have a great idea going and should send some input to whomever your Congress man or woman is and let's all join together and see what we can get done to change the current ways in which we are treated as patients and demand better care!

Thanks for posting and being so proactive!
Melodie Aultman-Morris
Cleveland, Tennessee
Comment by amy on December 24, 2008 at 9:18pm
I'm just to tired to try all these things! just kidding-i think your approach is sound and giving me a 5 hour a night target is do-able- no one ever told me that is acceptable- and i am a black and white person- can't wear it all night? never mind then.
thanks for the great pointers!
Comment by The SleepGuide Crew on December 24, 2008 at 7:47pm
Sue, I think oxygen therapy alone cannot treat obstructive sleep apnea; I think positive airway pressure of some sort is required. You might seek out a doctor who specializes in sleep to give a second opinion on what your doctor has prescribed. I certainly agree that the technology is not user friendly. It's my impression that the medical community isn't comfortable making the technology too user friendly, for fear that people will start to take control over their own therapy without going to the doctor for advice.
Comment by Sue on December 24, 2008 at 5:58pm
They need to put more technology to work in the CPAP machines. They really are not user friendly. They also should make one that doesnt scare the crap out of your partner. No, but serious with all the technology we have they have put very little into these non user friendly machines. How many people do you think just dont use them and say they do because of the comfort issue. I told my Dr I could not see myself using this machine every night. The respiratory therapist suggested oxygen therapy. Im trying that now, its a lot better than the bulky mask so if this works, why wouldnt this option be used?

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