[Pressure] Danger Involved - Changing your own CPAP pressures

[Sleepster]

A lot of doctors say they want their patients to take some responsibility for their own care, but when it comes down to it they can't be bothered to help. Burn out is an occupational hazard in any occupation.

[Shastzi]

If it's too hot in the kitchen then it's time to get the hell out.

[jgjones1972]

I think it should be obvious that the danger of getting inadequate therapy is far greater when you allow someone to determine your therapy pressure by examining one night's data.

It's a racket and the racketeers are fighting a turf war mainly against the very people they have taken an oath to help.

[Tipiford]

Chip and ClockPuncher, et al., I might mention that a year or four ago, doctors and healthcare practitioners moved up from fourth place to third in the leading cause of death in this country; further, the last time I looked at the healthiest countries in the world (WHO.com--and dependent upon which study), we were either 42nd or 21st in line as the healthiest nation. Much of this is all determined by where these individuals get their training: at a pharma-college.

[alby_c]

can't resist a good flame war. I know it was probably a troll but - cannot resist!

Anyway - I am newly on the hose.
I had my first study in early April which gave an AHI of 27.
This was considered so trivial that it wasn't until the end of July that I could get the second study with the CPAP to set my prescription level.
NO- I could not just buy an auto machine and go for it, I had to wait for the study and suffer more months of no treatment (you bet your socks I am bitter).
no - they would not tell me the pressures after the study - I had to wait another 2 weeks for the report, then book an appointment to get the prescription (another week and a half).
Finally get my prescription - now I have to buy a machine through some supplier that wants to charge a fortune so I can get my "free" consulting with them.
Or I can "rent" a machine that for a year will cost more than buying it outright off of them but with further supervision etc and other patronising goodnesses.
They still wouldn't give me a copy of the study and I had to get my ENT (Ear, Nose, Throat specialist) to request a copy, whereupon she gave it to me.

I bought a machine on line "gently used" which to my IT brain means run in and unlikely to fail upon delivery for one fifth (that's right - 20%) of what the local shysters wanted to relieve me of, admittedly for a new machine. It arrived and is immaculate and works fantastically. Resmed do make good stuff even if their international pricing regime is disproportionate in Australia.
I am so much better. I could have been this much better in April!!

I am totally P*ssed off with the whole sleep industry in Australia and cannot see why I should entrust my precious health to them, much less my hard earned $$.
I accept I cannot monitor it as well as a titration study and that I will no doubt need these occasionally but that's where the line gets drawn for me.

The days of the demagoguery of doctors is over. I rejoice in this.

I am talking to my GP - he is avidly following my learnings but he is not a source of information to aid me, mind you he happily admits his limits and does research them and sees no reason I should not use an auto machine and tune the pressure ranges. He is one of the good ones.

BTW, this is on a background of other run-ins with Doctors. I tore the ligaments in my right shoulder, the Hospital doctor diagnosed I had a psychiatric condition, not in real pain - I had to pay for my own ultrasound to prove the ligaments were actually torn. the Doctor wouldn't even have the ultrasound done to check. I could rant on, but suffice to say Doctors are people - good, bad and indifferent. Some are great. Some suck. I intend to be informed so I know when I am getting one or the other and take action if I get stuck with one of the latter

[Sleepster]

can't resist a good flame war. I know it was probably a troll but - cannot resist!

Yes, it was a troll. Around here we try to stop flame wars before they start, but I do know what you mean.

I am totally P*ssed off with the whole sleep industry in Australia and cannot see why I should entrust my precious health to them, much less my hard earned $$.

It's not really any different in this hemisphere, either.

[TiredinFL]

What seems to be missing in this thread is what that it's not usually one way or the other. I went through 2 sleep studies that took too long to get through. I got a petscrption from a sleep doctor I never saw but had a great sleep tech who I believe got a good result. Then I had to wait a week and a half for the sleep doc to produce a report saying the same thing as the tech that I needed a 14 for pressure. The another week of getting the report to my primary care doctor and back to the sleep clinic and finally to the DME. All of this took forever!

But I have to say all of the people I met were nice and I felt that they were trying to help me get better. Ok so now I have my Auto PAP set to a 14. The respiratory therapist said once I follow up with my primary doc to tell him I want a perscription for a range and then he would show me how to change it. He thought a single pressure wasn't best for me.

Not wanting to wait 30 days to use the Auto PAP the way it was designed and the way the therapist thought it should be (he needed a perscription from my doc who is no CPAP expert) so I hit Google and found out how to set a range around the 14 setting I was perscribed. How does that put me in danger? I simply cut 30 days off the process that took 2 months as it was.

[alby_c]

I agree with starting with a CPAP study. I have read of cases where a person had the test study in the first half of the night, was put on CPAP for the second half and went home with a prescription and a loan machine until they could buy/rent one. If they truly believe not having your CPAP right is life threatening then I would expect this to be standard for everyone diagnosed, or at least some alacrity in getting it sorted. But they do not do this - actions speak louder.

My point was they were willing to let me have NO therapy for 4 months to go through the process, then have the gall to tell me adjusting my therapy slightly, in accordance with results from their starting point (not a randomly chosen number), both from monitoring software, and my own body's response will suddenly harm me. Will it do more or less damage than the extended period of non treatment? I know what I think.

[kdbonline]

Glad to be part of a community who help each other. We are, after all, the reason they (the Dr's, PA's etc.) have a vocation. Doctor's are not perfect, they are people. I had one have the gall to tell me "I don't mind if you participate in your healthcare decisions" to which I immediately replied "You don't understand. I don't mind if YOU participate in my healthcare decisions!" Needless to say, I had a great relationship from then on as we understood each other. Mutual respect is the key.

[MobileBasset]

I just read through this thread and feel like I have had an emotional workout. Thanks to Supersleeper and the other "apneaboarders" who took the time and effort to so carefully and thoughtfully rebut the challenges made to our self advocacy philosophies. This is a couple of years old but I decided to give it a boot anyway.