CPAP Basics - 1

[John from Brookston]

To establish nightly gathering and several times a week use of the PAP flow data to modify lifestyle and deal quickly with any problems that will crop up as the therapy is used.

I disagree. Cart before the horse. Efficacy data gathered while there is significant leakage (or other variance) is practically meaningless. That's a basic tenet of any process control.

The flow data would show the leak, the problem would be quickly seen for what it is, a direction for solution would be quickly taken.

I very strongly disagree with you on this.

Last time I checked only 20% of those medically commended to PAP treatment are able to use it for more than four hours per night at the one year mark. I think your attitude is the largest contributing factor in that horrible truth.

Please change your mind!

Todzo

Uh, I've been on PAP about 6 weeks and I consistently rack up at least 5 hours a night. Last night was 7 hours 41 minutes w/a 5 minute piss break after 2 hours. I agree that attitude will make or break how you get along with it. That and mask fit.

[Drowsy Dancer]

Last time I checked only 20% of those medically commended to PAP treatment are able to use it for more than four hours per night at the one year mark.

Citation please?

Able or willing?

This study has different numbers, so I don't think it's the one you're thinking of: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2972705/

This study covers some of the same ground, and is quite interesting as well. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3058118/

And this retrospective study shows a truly dismal adherence rate at one year overall, bur breaks out a number of subgroups: http://www.hindawi.com/isrn/otolaryngology/2011/943586/

[Wulfman...]

What should be the number one concern for a new CPAP patient?

In one word......"Education"......about the condition, the therapy, the equipment, the terminology......EVERYTHING!

AND, that includes finding this forum.

I've often said in postings that the vast majority of people will find out more about the electronic gadgets and other things they will buy in their lifetimes, but they come into this life-saving therapy (something they need to sleep with every night for the rest of their lives)......totally unprepared......which is ludicrous considering the vast amounts of information available on the Internet.

Once a person gets educated about all of this.......the mask, machine, insurance, doctors, dealing with DMEs, psychological issues, etc., etc.......will all fall into place in their priorities.


Den

.

[Todzo]

Last time I checked only 20% of those medically commended to PAP treatment are able to use it for more than four hours per night at the one year mark.

Citation please?

Able or willing?

This study has different numbers, so I don't think it's the one you're thinking of: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2972705/

This study covers some of the same ground, and is quite interesting as well. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3058118/

And this retrospective study shows a truly dismal adherence rate at one year overall, bur breaks out a number of subgroups: http://www.hindawi.com/isrn/otolaryngology/2011/943586/

Hi Drowsy Dancer!

I actually heard the numbers listening to an interview of Dr. Carl Stepnowsky by Dr. Stephen Park (see: http://doctorstevenpark.com ).

Anyone who reads much medical research knows they play with the numbers a great deal. In spite of that it is safe to say that long term PAP therapy does not work for most.

If I had not learned to monitor my own data and respond to the problems indicated it would not be working for me right now.

We need to constantly and regularly (a couple of times a week) be looking at our own data. For lifestyle management and to know right away when to contact the doctor or make another change. We simply do.

Have a great week!

Todzo

[Sheriff Buford]

You guys have got to be kidding! When I read the title of this thread, my first thought is that no one will agree on anything... after about the second or third entry, it satisfied my original assumption. You can't narrow (or nail) cpap therapy down. It's a journey. Goodness sakes... we had a thread last week about someone contemplating suicide. I still say it was spam.

Either way, I'm game for the discussion. My two cents are that most folks that start cpap therapy are so friggin' tired and feel so bad for so long, that they will try anything to get relief. They can get a glimpse of relief and they go for it. They go thru the sleep study (usually two of em'), and attempt to wear a mask all night. Then they start the mask journey: finding one that is comfortable, doesn't leak and getting it to work for you. If it doesn't work, THEN the head games start. All types of thoughts and frustrations begin....

Just my thoughts...it too unique and personal to try a one size fits all strategy. If it could, it would have already been done...

Sheriff

[Denial Dave]

+1 on everything Wulfman said!!!!

#1 EDUCATION

I had my sleep study... went back 3 weeks later, was told I had sleep apnea and given a machine and sent home.

if it weren't for my finding this forum; the machine would be in the closet collecting dust.

#2 Attitude

#3 finding the right mask....

[MagsterMile]

I've already forgotten the original question. However....I wasn't prepared for the high pressure blasting in my face that first night. Nothing like the sleep lab. Other than being prepared for the wind tunnel, the biggest thing to overcome is the mask. Up and down a lot of nights adjusting and readjusting the mask to find some bit of comfort and a way to stop the leaks.

[NotLazyJustTired]

+1 on everything Wulfman said!!!!

#1 EDUCATION

I had my sleep study... went back 3 weeks later, was told I had sleep apnea and given a machine and sent home.

if it weren't for my finding this forum; the machine would be in the closet collecting dust.

#2 Attitude

#3 finding the right mask....

I should like to point out that #2 and #3 are a natural outflow of #1. Yes, I would put Education on the top of the list. An important part of this is learning the experiences of others who have made the trek ahead of you. That will assist in the attitude and understanding the ramifications of finding the right mask, pressure, software, etc. All doctors should prescribe a list of URLS to the newly diagnosed, one of which should be cpaptalk.com. Where else can you read the candid accounts of others who are going through the same challenges? Not from the Dr., sleep lab, or DME, that is for certain.

[Jimster]

Good Morning All !

(First this note: …What I have posted here is like what NotLazyJustTired posted, but since I had already written this using Mic. Word I’m going to go ahead and post mine anyway.)

...
This Thread, or Post has seemingly hit home for a lot of folks, and nothing that I have read so far seems to be off base. I have to say that The World of PAP is very interesting to say the least.

When I started with CPAP I had no idea that any therapy could have this many Nooks and Crannies. My Doctor did say that he has prescribed CPAPs for hundreds of his patients only to find out that his advice wound up in the bottom of one of their out of the way closets.

Sheriff Buford certainly, like others has a good handle on the World of CPAP…..Also what about Todzo’s idea of an X-PAP College? That gets my Vote, where do I enroll?.... Then along the same lines, no one can argue with Wulfman’s one word “Education” assessment.

I have always said that not everything in life has a well defined starting point. In other words when Starting Out we may think that we need to start here, only to find out a little further down the road, that we should have Started in a different location.

I think everyone here is on the same page of, “Just get Started, and Stay with it even if you have to Start Over”.

I will say that I would not be as far along with my PAP therapy if it had not been for CPAPtalk.

Jim
,,,

[LinkC]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

[MagsterMile]

[quote="LinkC"]I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

Funny you should say that. My DME RT shakes her head every time I mention that I would like to know what my numbers all mean. She told me that that's what she is here for. I had mentioned that I was thinking about installing the Sleepy Head software to see my daily numbers. Perhaps I do have too much time on my hands.

[Drowsy Dancer]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

One percent?

[LSAT]

I don't think having/using data is nearly as important as we'd like to think. The VAST majority of CPAP patients get relief of symptoms and good sleep without knowing their AHI from their... you know!

We are the geeks about it. But don't kid yourself. There are those out there who get the same results or better with a brick and an annual Dr visit. Any idea what percentage of OSA patients monitor their data? My doc provided an anecdotal figure at my last visit. I was shocked. What's your guess?

I agree 100%...I went my first 4+ years with a brick and no data. I was doing fine. Now I have a data capable machine. I HOPE I don't start following my data daily.

[NotLazyJustTired]

If it ain't broke, don't fix it.

OTOH, if it is broke, there ain't nothing wrong with trying to fix it yourself, if you know what you are doing. If I have a migraine, I am not going to wait for my annual appointment for the doc to tell me to take a pill. While SBD is a little more complex situation, the concept still applies.

[LinkC]

That would have been my guess, DD. Let's get a few more guesses before I tell you what my doc said.