What Would You Change in Your xPAP Experiance?

Todzo · Post by **Todzo** » Thu Mar 28, 2013 4:22 pm

If you could go back to a more perfect world, what would your xPAP experience have been?

What would you have changed?

How would you have been treated?

How would you have gotten to where you need to be (healthy) in a better way?

chunkyfrog · Post by **chunkyfrog** » Thu Mar 28, 2013 4:25 pm

I would have been diagnosed in 1991, when the HMO FAKED my negative sleep study to save money.

Todzo · Post by **Todzo** » Thu Mar 28, 2013 4:32 pm

chunkyfrog wrote:I would have been diagnosed in 1991, when the HMO FAKED my negative sleep study to save money.

Hi chunkyfrog:

Well I suppose that just because you may be paranoid it does not mean that they were not after you.

I believe that OSA, especially in the early stages, is not there every night. I know it varies a lot from night to night from my nightly data.

Many think that UARS precedes OSA. I think that is often the case.

But yes, after feeling the contempt constantly streaming from our puffed up profit motivated very fallen American Medical Empire it is honestly hard to see their motives as helpful.

Have a great week anyway chunkyfrog!

Todzo

chunkyfrog · Post by **chunkyfrog** » Thu Mar 28, 2013 4:35 pm

I have special contempt for HMO's as I believe they are the worst approximation of healthcare.
(with the obvious exception of Dr Mengele, of course)

Todzo · Post by **Todzo** » Thu Mar 28, 2013 4:40 pm

chunkyfrog wrote:I have special contempt for HMO's as I believe they are the worst approximation of healthcare.
(with the obvious exception of Dr Mengele, of course)

So the first thing you would have changed is to get a proper diagnosis off the bat. Very valid and relavant!!

What would be next?

Stormynights · Post by **Stormynights** » Thu Mar 28, 2013 4:59 pm

Proper mask fitting. I was just handed a mask and told here is your mask. It was just awful. I never could use it. Then we had cpap auctions so it was easy to buy cheap and try them out. I went through a lot of different styles. Most of them I gave away. It was certainly trial and error finding something that worked. I miss cpap auctions.

quietmorning · Post by **quietmorning** » Thu Mar 28, 2013 5:02 pm

Actually - I'm starting over. . .I must have been somewhere else when I read this post. :-/

I would have definitely stayed on top of my data last year.

I had my mask picked for me by the tech at the titration study - I would have asked to try some other masks as I didn't know what was truly comfortable and well fitting as opposed to what I had. I think I would have liked to know what the tricks of THEIR trade are in order to catch the subtle manipulations - lol. . .I wish I had a book called: So, you've been set up for a sleep study, here's what you need to know before you go and before you leave - and have it cover all their tricks. . . the machine, the mask, everything . . .so that when I got the oxygen for the first time in forever, I would stop and think.

There. . .

That's what I would change. That and the heating in this house.

Todzo · Post by **Todzo** » Thu Mar 28, 2013 5:05 pm

Stormynights wrote:Proper mask fitting. I was just handed a mask and told here is your mask. It was just awful. I never could use it. Then we had cpap auctions so it was easy to buy cheap and try them out. I went through a lot of different styles. Most of them I gave away. It was certainly trial and error finding something that worked. I miss cpap auctions.

Boy do we need education about options!! Great post!

Denial Dave · Post by **Denial Dave** » Thu Mar 28, 2013 5:18 pm

since I can't ask to have Pugsy or one of the other resident experts in the room with me when I was told I had OSA.

my wish is for some discussion about mask fitting followed by suggestions on humidity levels.

Todzo · Post by **Todzo** » Thu Mar 28, 2013 5:33 pm

quietmorning wrote:I would have kept up with the data better during the first year.

How did you learn about data?

What do you believe the results of you using more data be if it had happened that first year?

quietmorning wrote:I would have had an educated primary care physician and a cardiologist that would have sent me for a sleep study early on.

As one whose Obstructive Sleep Apnea was “discovered” by a shelter bunk mate I strongly second this!!! 10 to the 100th +

quietmorning wrote:I would change the fact that no one really thought sleep was necessary and thought the body didn't need it . . .a left over from earlier evolution or something - in the 70's, 80's and early 90's.

All very good points.

Thank you quietmorning!

Todzo

Todzo · Post by **Todzo** » Thu Mar 28, 2013 5:40 pm

quietmorning wrote:Actually - I'm starting over. . .I must have been somewhere else when I read this post. :-/

I would have definitely stayed on top of my data last year.

I had my mask picked for me by the tech at the titration study - I would have asked to try some other masks as I didn't know what was truly comfortable and well fitting as opposed to what I had. I think I would have liked to know what the tricks of THEIR trade are in order to catch the subtle manipulations - lol. . .I wish I had a book called: So, you've been set up for a sleep study, here's what you need to know before you go and before you leave - and have it cover all their tricks. . . the machine, the mask, everything . . .so that when I got the oxygen for the first time in forever, I would stop and think.

There. . .

That's what I would change. That and the heating in this house.

My daughter's long term vision has been to set up and manage a non-profit to do equine therapy. She is now in process for her Ph.D. She still has this in her sights.

Perhaps what we need is a non-profit Sleep Apnea patient advocacy group. The medical community is way too much of a monopoly. We need an equalizer, or two, or three!!

Thanks!

Todzo

Todzo · Post by **Todzo** » Thu Mar 28, 2013 5:43 pm

Denial Dave wrote:since I can't ask to have Pugsy or one of the other resident experts in the room with me when I was told I had OSA.

my wish is for some discussion about mask fitting followed by suggestions on humidity levels.

My wish is that we could find someone to work with Pugsy to produce some good educational materials (probably videos) to help us all.

chunkyfrog · Post by **chunkyfrog** » Thu Mar 28, 2013 6:22 pm

I would have benefited from an Intro to cpap class, maybe meeting for several nights @ 2 or 3 hours a shot.
Of course, this would start BEFORE the inferior equipment hand-off, and continue into therapy for a while.
The class would have no connection to any DME's, and be conducted by experienced SUCCESSFUL patients,
preferably like the heretics I've met here (love you guys). There would be Q&A, and handouts of web resources,
and alternate supply sources for the un-(or under)-insured. It would of course be free.
Data-friendly docs and therapists would be welcome, and manufacturers would be welcome to bring samples
try-ons, and treats.

Todzo · Post by **Todzo** » Thu Mar 28, 2013 6:25 pm

chunkyfrog wrote:I would have benefited from an Intro to cpap class, maybe meeting for several nights @ 2 or 3 hours a shot.
Of course, this would start BEFORE the inferior equipment hand-off, and continue into therapy for a while.
The class would have no connection to any DME's, and be conducted by experienced SUCCESSFUL patients,
preferably like the heretics I've met here (love you guys). There would be Q&A, and handouts of web resources,
and alternate supply sources for the un-(or under)-insured. It would of course be free.
Data-friendly docs and therapists would be welcome, and manufacturers would be welcome to bring samples
try-ons, and treats.

I really want to see this come to be!

chunkyfrog · Post by **chunkyfrog** » Thu Mar 28, 2013 6:37 pm

Maybe something like KickStart or Indie-Go-Go to get a non-profit started?
I would consider an existing organization, but I have doubts about their philosophy.
Do all the existing non-profits adhere to the "line" we so like to cross?

What Would You Change in Your xPAP Experiance?

What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?

Re: What Would You Change in Your xPAP Experiance?