Doctor says therapy has been effective.Quit or continue ?

[kaiasgram]

Gabylady, in this case your RT (resp tech) knows more than your doctor. You asked how could your doctor be wrong, but he is simply wrong to tell you that you don't need treatment anymore if he has no basis for that conclusion. And without another sleep study (using no machine), there is no basis. So whether he's planning another sleep study or not, he's already wrong -- what he told you based on just looking at your cpap data (and "after much thought" ?) is WRONG. Irresponsible, in fact.

[Wulfman...]

I couldn't find where it had been asked, but just what report (?) was your doctor looking at when "......he says the therapy has been effective and I don't really need the CPAP but I can continue if I prefer (??!!!)."

In your profile, you don't seem to have your equipment or settings listed.
Do you have a data-capable machine?
What are all the settings?
What mask? If nasal mask, are you leaking too much of your therapy air out your mouth while you're sleeping?

And, along the lines of what Robysue wrote, your "condition" may have been caught in the earlier stages and could continue to get worse over time.......leading to other (serious) health problems.


Den

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[kaiasgram]

shaner, We are on same wavelength. I don't believe that Tommy Douglas envisioned universal health for Canada this way. Originally it was separate from government manipulation. Tired under paid doctors who are told how much time they can spend with each patient regardless of need.
Usually I don't need to spend much time in the system but my luck ran out this time. I will be looking for a referral but have little hope. there are only two overbooked sleep clinics in this city and their doctors and techs know each other very well. Who knows my luck may return.

You know, you have an Autoset. You can look at your own data to see what's going on each night. Do you have the clinician manual? Go to the Apnea Board website (see link below in my signature box). Unless you have unresolved complications you ought to be able to just keep going without the need for another sleep study or more doctor visits (unless required just to show you're compliant).

[Wulfman...]

In my opinion, your "treated" apnea AHI of 2.2 is NOT all that exceptional. And, if your leakage was significant, it can affect the numbers significantly........along with the amount of sleep time which went into that AHI number.


Den

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[Gabylady]

yes my machine is data capable. My res. tech. controls all but hose temp. and humidity. I did go to the Airsense website and downloaded all the data I could but I am not in control.
I have nasal pillows and if I am reading things right leakage is around 23.
I am going to access my data on my own, I don't like not being involved. I have been somewhat awed by "compliance" and the appearance of data being too complex for my mundane brain.

[bwexler]

If a scuba diver was breathing successfully for 20 minutes under water does that mean he can now breathe successfully under water with out the scuba gear.
Stopping your therapy is the same thing.
It is time to educate yourself and take control of your own therapy. No one cares more about your successful therapy than you. Get a copy of your full sleep test report with all the details. Post it here and people will explain it to you until you understand it. Then download Sleepy head software and learn to use it and understand the reports. You can get plenty of help here until you are one of the pros helping others.

[kaiasgram]

yes my machine is data capable. My res. tech. controls all but hose temp. and humidity. I did go to the Airsense website and downloaded all the data I could but I am not in control.
I have nasal pillows and if I am reading things right leakage is around 23.
I am going to access my data on my own, I don't like not being involved. I have been somewhat awed by "compliance" and the appearance of data being too complex for my mundane brain.

You can be more in control if you wish to. Even if you're not comfortable with the idea of adjusting the prescription pressure settings (you may or may not even need to), you can certainly make adjustments to some of the comfort feature settings (temp, humidity, EPR [exhale relief], and Ramp). There is no reason that your resp tech should be "in control" of those comfort features.

And if you're reading your leak rate settings correctly, you may also need to work on mask fit and leaks.

You can definitely learn how to understand the data your machine provides. We're here to help.

* The website data is much more limited than the data you can get from your machine, using your computer and the free SleepyHead software. Again, we can help get you set up with this.

[Julie]

Hi - If I could deal with the techs and appalling MD/hospital sleep clinic in NS years ago, you can deal with everything in Ontario (where I worked in teaching hosps for years before going east). I and others will help you to get it done, one thing at a time. Just remember it's your body, business, legal right to all reports, etc. etc. and the ignoramuses wouldn't have jobs without you.

[Tatooed Lady]

yes my machine is data capable. My res. tech. controls all but hose temp. and humidity. I did go to the Airsense website and downloaded all the data I could but I am not in control.
I have nasal pillows and if I am reading things right leakage is around 23.
I am going to access my data on my own, I don't like not being involved. I have been somewhat awed by "compliance" and the appearance of data being too complex for my mundane brain.

Take control of your own therapy. Don't let some stranger tell YOU what makes you sleep better. Armed with charts and graphs available in software like SleepyHead, you can figure out (with help on this forum, of course) different ways to improve your comfort AND therapy. That's the whole point, right?

(Old news to many members, but helpful (?) to a newbie thinking the Doc and DME are in control, period.) Many forum members here have read my rants over having my machine controlled remotely, or being yelled at by the DME that I can't just change my machine settings! *Pthffft!!* I can, I will, and I HAVE. AND I told them that if EVER I had my settings changed remotely without my prior knowledge AND consent, I was removing the modem and would supply them with the nightly info some other way. I got an apology AND they haven't touched anything since. Even when I changed from the original APAP to a Bi-Level machine WITHOUT doctor's prescription, consent or knowledge. If they don't like it, they can BITE ME. It's MY therapy, it's MY sleep, it's MY health. And I'm monitoring my results daily.

Read up, educate yourself, and IF YOU FEEL COMFORTABLE DOING SO, twiddle a bit with the settings to help yourself. Ask for help when needed. Unlike at a doctor's office, you aren't limited to 5 minutes or 3 questions, whichever comes first.

[The Choker]

shaner, We are on same wavelength. I don't believe that Tommy Douglas envisioned universal health for Canada this way. Originally it was separate from government manipulation. Tired under paid doctors who are told how much time they can spend with each patient regardless of need.

Take this up with Julie. When we were debating Obamacare for the U.S., she was persistent and insistent in telling us we needed a wonderful system like you have.

But I digress. Carry on with the important business at hand and best of luck.

[Julie]

[Gabylady]

choker,
as it was initially set-up UNIVERSAL Health Care Canadian style was and is forward thinking and a godsend to all of us.re:Tommy Douglas. Unfortunately those who supposedly know better chose to access the cash cow. Cow is being drained dry and milk diverted. It has caused discontent on all levels. Sad ,we should be an example to the U.S. of what to avoid and what works. We blazed the trail. Improve on it. Nuff said.
Thanks for your encouragement. Taking control of my own health is the deal before me. At my age I can use and appreciate technology but it is frightening on occasion. I shall persist.

[Gabylady]

Julie,
I did not mean to step on your toes.re: Universal Health Care.Please read my response to choker. This is my first time in a forum and I hope to learn proper behaviour before alienating those who can help me. I need direction and encouragement if I am going to help myself. Patience too, mine and yours.
I feel that I must continue in therapy and my res. tech. agrees. Doctor? we will see in May. I can fight and be very persistent. If another opinion is needed so be it.
thank you

[Gabylady]

tatoolady, kaiasgram, I am taking note of your advice and links. I must leave, there is a hockey game and we are now entering finals.

[Julie]

My toes have hardened a lot here and there, no problem. It's maddening that we all can't make things 'just work' but at least we're trying. I hope you get your stuff sorted out and feel free to bother us anytime (or PM if you'd like). Wouldn't it be nice if T. Douglas (and for that matter cool son-in-law Don Sutherland) came back and fixed it all?