CPAPtalk.com

deadhead77,

I like your latest post and get the feeling that you are going to gradually take control of your own therapy. Good for you and I hope you listen and learn more quickly than I did. In hindsight, I wish I had not waited nearly a year to get a machine with software in order to start doing self-titration.

As far as being unhappy with our medical system, one needs to understand the high expectations we hold. If something is 97% good and 3% bad, we spend 99.9% of our words talking about the 3% and 0.1% of our words talking about the 97%.

deadhead77 wrote: "My pressure has been at 10, 7, and then 19, all by prescription from those professionals with "thorough knowledge of my illness". At least they did not kill me during those days."

That suggests to me, a newby, that death is a possibility if someone gets stuff wrong.

Death from sleep apnea is a possibility if the CPAP therapy is not effective. That is why I insist on software to monitor the effectiveness of my CPAP therapy.

rooster wrote:If something is 97% good and 3% bad, we spend 99.9% of our words talking about the 3% and 0.1% of our words talking about the 97%.

That might be a little high for DMEs, but overall, I'd say a pretty good estimate of overall accredited sleep laboratory performance.

Muffy

Muffy wrote:overall, I'd say a pretty good estimate of overall accredited sleep laboratory performance.

Oh look. A pair of overalls.

Muffy

Muffy wrote:

rooster wrote:If something is 97% good and 3% bad, we spend 99.9% of our words talking about the 3% and 0.1% of our words talking about the 97%.

That might be a little high for DMEs, but overall, I'd say a pretty good estimate of overall accredited sleep laboratory performance.

Muffy

Would you estimate that they titrate an optimal pressure for 97% of the simple OSA cases?

DoriC wrote:

deadhead77 wrote:

rooster wrote:

deadhead77 wrote:

As a knackered, recently diagnosed, long term sufferer of osa just getting my head around the illness, I would have preferred a better presentation than the one I got, which would have included references to sore noses, sleep debt, and the hundred and one other things discussed on this forum.The sheer relief of knowing that I can get cured and feel better would have been massively enhanced by a better delivery of information at my diagnosis. This could only have been done as a set of steps I would have to climb..

That's the point I think is trying to be made. Because "delivery of information" is so sadly lacking and most of us could not even find the first step on the staircase, we only found help here by taking the informed recommendations(and tips and fixes) of all the experts here who have lived the cpap experience. Even if we had found that "set of steps" you speak about and started the slow climb, I know my husband and I would have given up at that early difficult stage if not for some expert guidance here that gave us a little hope that we could succeed on this journey. Sad but true, here and in your country.

Dori, If that avatar is a photo of you, your old man is one lucky bugger! Who would not feel better looking at that lovely face.

Where can all us blokes get one...

I can only agree with you about this site love, It made all the difference to me I can tell you.

Mind you, the natives can be a bit savage!

-SWS wrote: You always say it so well, carbonman. I often turn to your uplifting writings when I need a nice morale boost.

and thank you for helping me along the way.

Through this group, this incredible cpap journey is beneficial in SO many different ways.

rested gal wrote:If I were brandnew to "sleep apnea" and "CPAP", this is what I'd read to start with:

LINK to Mile High Sleeper's great information resource for cpap users.
http://www.smart-sleep-apnea.blogspot.com

Thanks RG. I had never read that excellent blog until now. That's what I will start recommending to all the newbies I come in contact with. It will also get them into cpaptalk.com with all the links.

rooster wrote:Would you estimate that they titrate an optimal pressure for 97% of the simple OSA cases?

For simple OSA cases, I wouldn't be surprised at all if that were so.

On that night, and probably quite a few other nights, anyway.

Just been trying to make love to my latest attempt at a perfect mask.

The Mirage Liberty.

Went to appointment at hospital this morning...

The London Eye was quiet, Westminster bridge traffic quiet, for a change I got strait on the train at ... and got off after a lovely prat free journey into Waterloo East which was also quiet. The Thames was rolling along with just a hint of wintry sun glinting off the wash of a few boats...The London eye was turning, with the first tourists snapping away. freeze framing the moment.

I enter St Thomas' hospital which is having the front entrance improved.

The houses of parliament stood opposite, proud like a massive pile of ornate incompetence, introduced by the time full yet timeless Big Ben who confirmed that I was a half hour early.

I could prattle on....

I left with my new mask, confident it was just what I was looking for, me and the lovely young tech girl who helped me try the thing on, were both laughing when I left..


Then I got home and trie it on there...

I sure as hell will have to work on this mask, I feel pooped off, I just can't see how this thing is supposed to fit now I have got it home and am on my own .


NEVER EVER SAY OR FEEL PLEASED THAT SOMETHING LOOKS GOOD AND FEELS AS IF IT IS RIGHT!

Bloody kiss of death.

deadhead77 wrote:Just been trying to make love to my latest attempt at a perfect mask.

The London Eye was quiet, Westminster bridge traffic quiet, for a change I got strait on the train at ... and got off after a lovely prat free journey into Waterloo East which was also quiet. The Thames was rolling along with just a hint of wintry sun glinting off the wash of a few boats...The London eye was turning, with the first tourists snapping away. freeze framing the moment.

I enter St Thomas' hospital which is having the front entrance improved.

The houses of parliament stood opposite, proud like a massive pile of ornate incompetence, introduced by the time full yet timeless Big Ben who confirmed that I was a half hour early.

I could prattle on....

Why stop? I felt like I was traveling beside you and enjoying the sights. How nice. But it is also nice in North Carolina and John is coming by at 3:30 and we will start a very pleasant trip by car.

deadhead77 wrote: I left with my new mask, confident it was just what I was looking for, me and the lovely young tech girl who helped me try the thing on, were both laughing when I left..


Then I got home and trie it on there...

I sure as hell will have to work on this mask, I feel pooped off, I just can't see how this thing is supposed to fit now I have got it home and am on my own .


NEVER EVER SAY OR FEEL PLEASED THAT SOMETHING LOOKS GOOD AND FEELS AS IF IT IS RIGHT!

Bloody kiss of death.

Oh yes, those lovely young tech girls. The mind goes into another dimension and you forget you came there to get a mask.

BTW, you acquired the wrong mask. The Hybrid mask, hybridmask.com, gives you more options. The Liberty was a copy of the Hybrid and leaves out some features to avoid patent infringement issues.

But some people prefer the Liberty and hopefully it will work for you. Here are some tips on using the Hybrid and maybe some of the tips will be useful to you for fitting and adjusting of the Liberty. viewtopic.php?t=14422&highlight=

deadhead77 wrote:Just been trying to make love to my latest attempt at a perfect mask.

The Mirage Liberty.

NEVER EVER SAY OR FEEL PLEASED THAT SOMETHING LOOKS GOOD AND FEELS AS IF IT IS RIGHT!

Bloody kiss of death.

Maybe because you're trying to make love with the thing instead of putting it on your head? Sorry. Couldn't resist.

While I did enjoy your description of your trip to your destination, I have to admit that I'm still trying to figure out what your point was here. Did you just do the fitting too quickly to be done with it, and now find that it really doesn't fit? Or do need help to remember how to put it on and fit it again properly? I've just decided that the Liberty is my best bet for a FFM, all things considered and balanced out, so I would be happy to make suggestions if you need any, and if I understand your questions.

plr66 wrote: Did you just do the fitting too quickly to be done with it, and now find that it really doesn't fit? Or do need help to remember how to put it on and fit it again properly?

Maybe in tomorrow's posts deadhead will describe all the pubs he had a drink in on the way home.