What cpaptalk does

[krousseau]

That CPAP research item up in the news corner-cognitive therapy is just what goes on here. So wonder if someone did research on C-papers who stay around cpaptalk for awhile are more compliant than folks who don't stay. Kind of hard to followup on those who don't stay.

[rested gal]

Thanks for calling attention to that news item, krousseau!

Since the streaming CPAP and Sleep Apnea News links change daily, I'm going to include a link in my post here...to the particular article you mentioned:

http://www.eurekalert.org/pub_releases/ ... 051007.php
New research helps overcome major CPAP problem -- May 10, 2007

There was a study done in Great Britain some years ago that showed a similar degree of much better "compliance" in people who received extra help and education in the beginning days of their treatment, compared to ones that were given a machine and mask, and sent on their way.

It was interesting that the intervention in the Australian study began even before the sleep lab titration. That's great!

Sink or swim is too often the norm. Hope more studies like this will be done.

[Bonnie]

From RG's link.....

The intervention required participants to attend two one-hour sessions in addition to the usual treatment. It included a 15-minute video presentation featuring real-life CPAP users who described their personal experiences of learning to manage CPAP.

Didn't need a study to figure this out I love the line "real life Cpap users"...

I believe all of us who have been on Cpap for quite a while would agree, especially by the posts we see here from newbies, that without help from users rather than medical professionals or DMEs compliance would be very low to non exsistant. I know, I was a newbie once and without Cpaptalk I would never be where I am if I had to rely on my sleep doc and Apria. There is a lot of information on the Internet about OSA but for solutions to actual problems there is none better than our "experts" at Capaptalk. Here, one can post a problem and pretty much be assured of multiple responses immediately. If only there was a way to let everyone who is diagnosed with OSA know that there is a place on line where great help will guide them through the early stages, when it is the most critical, to help become compliant. Then hooking up would be just another night time routine.

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CPAPopedia Keywords Contained In This Post (Click For Definition): video, newbie, CPAP

[Born Tired]

That CPAP research item up in the news corner-cognitive therapy is just what goes on here. So wonder if someone did research on C-papers who stay around cpaptalk for awhile are more compliant than folks who don't stay. Kind of hard to followup on those who don't stay.]

I know how discouraged and uncompliant I was for the first few months on CPAP before I found this forum. I came very close to giving up on many occassions. It was still almost a year after finding cpaptalk before I found the right setup for me and knew for certain that PAP therapy really made a difference for me. During that time I was often encouraged by many of the great people on this forum not to give up. Often it was words spoken to someone else but encouraged me as well. I have been very compliant for over a year now, and I'm certain that would not have happened had I not found such a helpful place to hangout. My thanks to all of you!
Esther
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[Bamalady]

<snip>

In order to establish and maintain a long-term adherence to CPAP, the parameters also recommend that trained health care providers conduct follow-up of patients, especially during the first few weeks of treatment. Patients should also schedule annual follow-up appointments with a sleep specialist who can troubleshoot problems and make any necessary adjustments to their air pressure level.

<snip>

http://www.sleepeducation.com/Article.aspx?id=187

The bold is mine. This is from the American Academy of Sleep Medicine over a year ago. It is obvious these recommendations are not being followed since folks still find Cpaptalk and let us know that they are not. Until such a time comes along, I am very glad that this Forum exists.....and I am not holding my breath until the Health Care System begins to understand that this therapy requires more follow up than something such as a script for a bottle of pills.

[MLefholtz]

It was interesting that the intervention in the Australian study began even before the sleep lab titration. That's great!

I'd have to agree with the above statement. I discovered the cpaptalk forum before I even saw my sleep doctor for the first time. I've learned so much here and especially value the experiences of others.

I feel that I have a very low tolerance for being "messed with". Were it not for having a fairly broad overview of what to expect, gleaned from this board, I'm quite sure I would have taken the slipshod approach of my doctors much more personally.

Instead, I have been able to flow with the process, as inadequate and offensive as it has been. My sleep doctor is in a practice with 5-6 other doctors, pulmonary specialists, who do sleep work on the side. I've had three appointments to see "my doctor", but instead have seen a new doctor each time.

My first sleep study and my titrating study were conducted in a satellite clinic in a house converted to a sleep center, next to an all night gas station that sells diesel, on the main highway through a small town here in E. Texas. There were active freight line railroad tracks a half a block away.

After my titrating study and before my next appt. with "my doctor", I got a call out of the blue from a local DME, who had my report (before I did) and was calling to set up a time to bring a machine and mask out to me. I asked which machine he had in mind. This dufus says, "a Remstar M Series." I say, "which model?" He says, "there's only one." Then I say, "I do not want the mask I used in my titration study. I want a Comfortlite 2." He says, "you know that's a full face mask don't you?" I said, "I'll pass thank you."

When I had my appt. with "my doctor", I told him I wanted my prescription and a copy of the full report. This guy was actually reasonable, not offended by my knowledge of sleep apnea stuff, and cooperated with me fully.

I promptly ordered the cpap machine of my choice from cpap.com, along with software, reader, hose cover, and the short hose described by RG in her modification instructions for the mask I wanted.

While I would say my adjustment to my machine and mask is still a work in progress, thanks to you folks, I've been "compliant" since the first night I had my machine (April 23rd) and am getting more and more comfortable with the whole deal. I feel so fortunate to have read so much information about masks, that my first choice is working out really well. I'm sleeping comfortably with an AHI of 2-5 and I started taping five days in, so my leak rate is right down there.

I truly do view cpaptalk forum as a very worthwhile "intervention", even though my involvement is voluntary and of my own doing. I believe that I will continue with cpap as a really useful part of my health care and look forward to more experience and sharing on this forum. Sorry this has gotten so long, but some things ya just gotta say.

Mike

[rested gal]

Very interesting post, Mike. Loved how you related your encounter with the DME and your smart decision to "pass on that." LOL!!

Welcome to the board. Hope we'll see a lot of posts from you as the "work in progress" progresses. Sounds like you've got it going right.

[JohnMudie]

....
While I would say my adjustment to my machine and mask is still a work in progress, thanks to you folks, I've been "compliant" since the first night I had my machine (April 23rd) and am getting more and more comfortable with the whole deal.
.....
Mike

Yeah Mike, welcome. I had a rough time starting but persisted in using it because of the encourgament from this board. They told me just to keep on using CPAP. They told me to get an APAP and Encore Pro. I did and eventually it all came together. My AHI is now down in the 1's, my leak rate is beginning to look respectable.

And I am coming back alive.

Its the little things like not collapsing on the floor after taking a shower in the morning, like waking up without panting, like looking forward to the day rather than dreading it.

And I have made some friends on this board too.

So welcome Mike. I too have benefited a lot from this board.

John M

[Catnapper]

I must add my words of thanks to the members of cpaptalk for helping me deal with and finally adjust to this therapy. I know people who use CPAP who don't get help here, but I can't imagine how they manage to do so.

My first 6 weeks before I found cpaptalk (thanks to a former member here who told me about it) were truly horrible. I read so many posts that were answers for other people but helped me. After learning more about the dangers of sleep apnea I am relieved to be able to prevent more damage to my health and happiness. What I learned here helped me help my son and daughter who also have sleep apnea, and eased their transition to successful therapy. Any parent will understand the value of that.

Thanks, cpaptalk and all the members - past, present and future.

Catnapper

[sharon1965]

hi mike! welcome to the boards...i enjoyed reading your post--no need to apologize for its length...glad to hear you're feeling supported

i, too, am grateful for having found this forum (although i wish i'd found it before my titration study)...other than returning unsuccessful masks to the supplier, i've had no contact with them, though they do say to call or come in 'any time'; so everything i've learned, i've learned here. because of that, i've been completely compliant other than the month my ENT told me to take off after nasal surgery...i'm still waiting to feel better, and i still feel like i'm struggling, but it's been a journey of discoveries since dec. 2006, and there are so many layers to my sleep disorders that it's been much more of a process than i anticipated...again, with help from the people here, i've been able to manage that, too...

if i had been alone, as i would have otherwise been after my titration and first set-up/fitting, i can't imagine how i would've managed; it's one thing to be committed, it's another all together to feel empowered and supported along with your commitment, and that's what i've felt since finding this forum

sharon1965

[MLefholtz]

Hey Sharon, thanks for the welcome.

I've followed along with your nasal surgery progress. Hope it works out for you. I had the same surgery about 20+ years ago. Way pre-stents. My surgeon packed my nose with plain ole gauze, about a mile of it. When he removed it, I was done. The usual precautions of not blowing my nose, etc.

The improvement was rather immediate and lasting, to this day in fact. May you continue to heal and feel better.

Mike

[MLefholtz]

Hi John M. Thanks for the welcome.

I too know what it's like to come alive again. I have a more serious condition (than OSA) that I've been being treated for, for quite some time. The treatment is very draining. On top of it, my OSA emerged during the course of treatment. It hasn't been too long ago when I had very little energy, almost no stamina, and slept 2-4 hours a day, in addition to my night's sleep.

I'm currently taking a break from that treatment, and my OSA is coming under control. I'm almost feeling like my old self. I'm in the process of upping my activity level and working on my physical conditioning so I will be in better shape before another round of treatment, which seems pretty likely.

Pleased to meet you John.

Mike

[sharon1965]

mike said

I've followed along with your nasal surgery progress. Hope it works out for you

mike
thanks! it's certainly going well now, and i'm breathing freely for the first time in my life...i'm not even suffering any of the allergy symptoms i usually have this time of year (all year 'round, really)...of course, i'm knocking on wood as i type this

mike said

May you continue to heal and feel better.

thank you, that's very kind, and i'd like to extend the same sentiments to you...take care

sharon1965

[Bert_Mathews]

Mike welcome;
Being and OLDFART -- I just don't have time to be hassled!

I also was lucky enough to find this forum before dealing with DME wright&filippis I have been on the machine starting back in 1/08/07 [so I'm a newbie!]
The mask from the DME was a JOKE & it's replacement not much better SO I'll have three to place on the trade boards........
Using CL2 and have cut my BP meds in half and stoped going to the Dr's office [he has a new car from his charges!] The DME hasn't called or checked once on my progression BUT not missed charging my insurance co.

This group has been more HELP than anybody in the medical field [ I'll exclude my wife who is an RN.]
So THANKX TO ALL!


BERT

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CPAPopedia Keywords Contained In This Post (Click For Definition): newbie, DME

[DeltaSeeker]

I must say that followup is so important and I'm grateful that more studies are recognizing it (and mask fit) as the most important ingredients in CPAP success and compliance. Couldn't believe how my RT was complaining that compliance was only 40% when they had the nerve to put me, a new CPAPer, on a 6 month call back. And only so they could remind me to order a new mask and hose since my insurance pays for one every 6 months.

The only reason I was there was because I had heard on these forums about the "standard" of care should be 3 days, 10 days, 30 days, and every 3 months thereafter to check on compliance, questions, difficulties, etc. Yeah, I wish. Oh, sure there's a 24 hour number. But how many people are going to call that?

I'm so grateful and thankful for the people here for educating me and helping me out. Words can't express how I feel about everyone here.

Thanks so much!

Linda