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Questions about Long Term OSA Damage, Reversible?
#11
I'm not talking about myself as I'm having no problems with therapy, I only found this site because I googled how to change settings on my S9.
I'm sure there would be some first time users who come here looking for words of encouragement but instead find more words of negativity.
Would it not be more beneficial that when people join the forum and welcomed by the moderators that they be encouraged to read the personal success threads so they can see that not everyone who joined this forum has only 'doom & gloom' stories to tell.
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#12
(11-22-2012, 05:35 PM)Allen Wrote:
(11-22-2012, 12:17 AM)zonk Wrote: its important to take care of your own treatment ... the odds are stacked against you from the start
the odds are staggering ... 50% dropouts

Some people who find this site are looking for answers and encouragement with their cpap therapy, but quite often what they are getting are negative statements like the one above.

How is that supposed to help the people who are looking for encouragement?

People struggling need to know that they are not alone. When I started CPAP therapy I was alarmed at the difficulties I was having and I thought there must be something wrong with me.

Learning that others have problems too, and that there's a 50% dropout rate, was a comfort to me. I persevered, I stuck with it, and I succeeded.

It's a comfort to me to know that I accomplished something that a lot of people find difficult. I enjoy the benefits of CPAP therapy, but I don't enjoy the CPAP therapy itself, and it's important that other people know that and understand it.

We come here for support because we know that support is critical to our success. We appreciate the support we got from others and we want to pass it on.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#13
I couldn't agree more; Sleepster expressed my feelings exactly!
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#14
Can someone please give me the link to where the 50% drop out rate came from because I am unable to find any definitive drop out rate in the information I have been reading
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#15
(11-22-2012, 08:49 PM)Allen Wrote: Can someone please give me the link to where the 50% drop out rate came from because I am unable to find any definitive drop out rate in the information I have been reading
you,re welcome ... 50% might not be the actual numbers ... numbers can spun in any which way
anyway this Canadian article might gives us some clue:
http://www.apneaboard.com/forums/Thread-...Compliance

Support and Education for cpap Patients can Improve Compliance

MONTREAL -- The dismal compliance of sleep apnea patients with continuous positive airway pressure treatment could be significantly improved with simple measures such as education and support, according to several experts.

"We need to advise, educate, and empower these patients," said Dr. Philip Westbrook at the Eighth World Congress on Sleep Apnea. "They need to know how to treat their illness, they need the tools to monitor their treatment, and they need to be aware of the risks associated with their disease," he said.

A study presented elsewhere at the meeting showed that patients' 5% annual dropout rate from continuous positive airway pressure (CPAP) therapy was mostly the result of the equipment being noisy and cumbersome.

Out of the 221 patients who were initially prescribed CPAP, 35% refused treatment, and 41% of those who initiated treatment discontinued it over the 8-year follow-up.

"What's the use of having a thousand-dollar machine sitting in the closet when all it takes is a nurse or a respiratory technician to say the reason it's not working is because of the wrong mask or because the pressure is too high?" said Dr. T. Douglas Bradley, of the University of Toronto.

Dr. Bradley was principal investigator of the CANPAP trial, which studied the effects of CPAP on cardiovascular function and mortality in heart failure patients with central sleep apnea (N. Engl. J. Med. 2005;353:2025-33). The trial achieved an 85% CPAP compliance rate, partly because of "the zeal of the investigators," he said at the meeting.

"It's a question of how much energy you put into it," Dr. Bradley said in an interview. "It's one thing to say, 'Here's the CPAP machine, see you later.' But it's another thing to say, 'I'm going to see you in a week from now, I am going to phone you to make sure you're using it properly, I'm going to download your compliance, and I'm going to make you feel guilty if you don't use it.' If you do that, you get very good compliance."

Arming patients with information about their condition and its treatment can empower them to take responsibility for it, Dr. Bradley said, and that's the best recipe for compliance with therapy.

In addition to simple tools such as bathroom scales and blood pressure cuffs that allow patients to monitor their own progress, he also believes in more complex tools. "I can imagine a CPAP machine that gives the patient feedback. We have focused on systems that give the sleep specialist information on how the patient is doing, but then the patient has to learn from the sleep specialist."

Machines that provide patients with information about their average pressure, time on the machine, mask leakage, and their respiratory disturbance index for the past night or the past week will all encourage patient involvement, he suggested. Such machines also might allow patients to alter the pressure themselves.

Patients should be provided with vital information about the risks associated with their disease, in particular the potentially lethal effects of opioids, said Dr. Westbrook, who is retired from clinical practice and serves as chief medical officer for Advanced Brain Monitoring Inc., which markets a home-based diagnostic device for sleep apnea patients.

In addition, all physicians dealing with sleep apnea patients should be given details of both the diagnosis and treatment--and spouses should also have this information in case of an emergency, he added.

Patients should bring their CPAP machines to the hospital if they are being admitted, especially if they are scheduled for a procedure that involves general anesthesia, sedation, or pain relief medication, Dr. Westbrook said.

Patients also should be aware that alcohol, smoking, sleeping pills, being overweight, and sleeping at high altitudes can all worsen the effects of sleep apnea, and that the sleep deprivation resulting from their condition could make driving and operating machinery dangerous. And patients should be checked annually for diabetes and hypertension, both of which are more common in people who have sleep apnea, he explained.


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#16
(11-22-2012, 05:35 PM)Allen Wrote:
(11-22-2012, 12:17 AM)zonk Wrote: its important to take care of your own treatment ... the odds are stacked against you from the start
the odds are staggering ... 50% dropouts

Some people who find this site are looking for answers and encouragement with their cpap therapy, but quite often what they are getting are negative statements like the one above.

How is that supposed to help the people who are looking for encouragement?

I see nothing wrong with that statement. It is a truth and meant to show the reality of it. Would you rather we tell people it is easy as pie and they will succeed? Then when they have problems, they will see themselves as a failure.

The biggest encouragement we can give is the truth. Then we show them how to beat the odds like we did and are still doing each night.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#17
Thanks for the info Zonk.

After reading that I can see how fortunate I am to be a patient of the sleep centre I go to.

The following link is to the information page of the sleep centre I go to in Queensland, Australia. It is a state government hospital site, it is not a commercial link.

http://www.health.qld.gov.au/qhsdp/asp/s...ntacts.asp
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#18
I'm sorry this turned into a bit of disagreement. I will continue my therapy, especially now that I have good machine. I certainly don't want anyone at odds with each other, especially as a group who has a lot to share from experience and different perspectives.
Tim
Finger Lakes Region, NY
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#19
(11-22-2012, 09:54 PM)2Tim215 Wrote: I'm sorry this turned into a bit of disagreement. I will continue my therapy, especially now that I have good machine. I certainly don't want anyone at odds with each other, especially as a group who has a lot to share from experience and different perspectives.

It's not really a disagreement as I understand the need for support for those who are having problems with therapy. My concern is that some people may join this site as I did in the first place to download the clinicians manual for their cpap machine, when I first joined I had been for my second overnight sleep study and had ordered an S9 autoset after reading all the brochures of the different makes and models available. I came to this site with a positive attitude as my night on the cpap machine was a positive experience, but it didn't take long to start doubting whether I was going to succeed after reading numerous negative experiences. It has been over 2 months now since i started therapy and I am very happy with my results.

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#20
Heck, if we got pissy with each disagreement, we'd never get anywhere!

We each have different philosophies on how to act and react. I would much rather say it and hear it un-sugar coated. But that doesn't mean that's how other folks like to say or hear it. Thank GOD we are not the same!
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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