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