Post
by alnhwrd » Sat Jul 26, 2008 8:58 pm
This post is not for the original poster, but for the new cpap user who might be here just starting on his journey.
No one, not a Dr., sleep tech, or DME employee will care as much as I do about my health. Therefore, I am the one to decide the best course of action in regards to my health. I, and almost everyone on this site, have the intelligence and determination to make valid informed choices, knowing full well the risks, (which are minimal, I have yet to read an obituary that says "Poor Bob, he died because his cpap pressure was set too high"!) and benefits of adjusting our own pressure. Successful Cpap treatment is an art as much as a science. Its not like treating an infection where you take a pill three times a day for two weeks and you are cured. Its a work in progress for many, with lots of variables that each individual must adjust to maximize the benefit of his or her treatment.
IMHO, it is far more dangerous to drive than change ones pressure, but we do it everyday. I drive 30 miles to work. My car is going 70 MPH one way and I am about 10 feet away from a couple of hundred cars going 70 MPH the other direction. A few minutes inattention or malice on someone's part would result in chaos and death for dozens. And yet, knowing all this, the state lets me and everyone else out on the road drive, and we make the informed decision to do so and accept the inherent risk. If I can be trusted to operate a two ton vehicle at 70 mph, why can't I be trusted to change my own cpap pressures? Your argument is akin to someone going to a travel site and demanding it be taken down because people are encouraging others to drive their cars, putting themselves and others at risk from death by a motor vehicle accident. The same argument can be made for making house repairs, skiing, hunting, boating, or just leaving the house. All of these activities have some risks, most far more than changing pressure on a cpap machine, and yet intelligent people make informed potienal advantage versus possible risk based decisions to participate in them every single day.
Consider how unwieldy and ineffective it would be to actually do as you propose. One would need a weekly visit from a nurse/Doc/sleep tech to check data and make adjustments for at least the first three to six months, if not longer, and then two to four visits a year for the rest of their life just to maintain. The sleep medicine industry is not capable of supporting this level of care, not to mention the cost to the insurance system and consumer. There are not enough health care professionals to get the job that you, and others like you who insist their way is the only way to do things, want them done.
No one is obligated or coerced into doing anything on this board. Anyone who wants to is completely free to do just as you say and make appointment after appointment with their Doc until they get it just right. The reason most people don't is because that way doesn't work. Making one's own adjustments at home does. I have read countless times on this board about people who have adjusted their pressure and suddenly things are working for them. I have also read many posts from people who kept at their prescribed settings for months getting little or no benefit. Which is better? I think the former is.
In my own case, I increased my pressure a bit, my numbers improved, I increased them a bit more, they were still ok, I increased them more and they got worse so I knew where my ceiling was and I have kept my pressure below that ever since. I and others will continue to safely experiment with our settings, looking for that perfect mix of pressure, EPR, mask and humidity, and if that makes you crazy or angry, that is no one's fault but your own. CPAP therapy is the gold standard of treatment for simple obstuctive sleep apnea, and self management of care is, in my humble opinion and the opinion of many others far wiser and smarter than I, the gold standard of CPAP therapy. I am confident that time will prove this to be the case.
A final note to the original poster. This site is, in the host's own words, dedicated to the support and encouragement of CPAP users and respectful discussion of issues relating to Cpap use. It is not a place to spew venom and use foul language. If you feel the need to do so, PM me and get it all off your chest, don't put it on a public site.
