myapnea dot org

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msla
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myapnea dot org

Post by msla » Fri Oct 31, 2014 9:23 pm

What are your thoughts on this effort? https://myapnea.org/ I'm not looking to upset anyone, just curious.

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Re: myapnea dot org

Post by Wulfman... » Fri Oct 31, 2014 9:59 pm

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49er
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Re: myapnea dot org

Post by 49er » Sat Nov 01, 2014 1:45 am

msla wrote:What are your thoughts on this effort? https://myapnea.org/ I'm not looking to upset anyone, just curious.
Hi msla,

I am trying to keep an open mind on this site even though ASAA is involved and it is from their board that I was banned. I signed up but haven't participated in the forum. Dr. Redline, one of the physicians involved, seems to want to hear from patients but obviously actions speak louder than words and only time will tell exactly what will happen.

49er

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msla
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Re: myapnea dot org

Post by msla » Sat Nov 01, 2014 7:16 am

49er wrote:
msla wrote:What are your thoughts on this effort? https://myapnea.org/ I'm not looking to upset anyone, just curious.
Hi msla,

I am trying to keep an open mind on this site even though ASAA is involved and it is from their board that I was banned. I signed up but haven't participated in the forum. Dr. Redline, one of the physicians involved, seems to want to hear from patients but obviously actions speak louder than words and only time will tell exactly what will happen.

49er
Yes. After a snotty PM from a board moderator on the Asaa forum, I banned them.

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Last edited by msla on Sat Nov 01, 2014 7:23 am, edited 1 time in total.
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msla
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Re: myapnea dot org

Post by msla » Sat Nov 01, 2014 7:23 am

Wulfman... wrote:Previously discussed here:

viewtopic/t101787/viewtopic.php?f=1&t=9 ... rg#p929869


Den

.
Thanks, Den.

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49er
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Re: myapnea dot org

Post by 49er » Sat Nov 01, 2014 8:05 am

msla wrote:
49er wrote:
msla wrote:What are your thoughts on this effort? https://myapnea.org/ I'm not looking to upset anyone, just curious.
Hi msla,

I am trying to keep an open mind on this site even though ASAA is involved and it is from their board that I was banned. I signed up but haven't participated in the forum. Dr. Redline, one of the physicians involved, seems to want to hear from patients but obviously actions speak louder than words and only time will tell exactly what will happen.

49er
Yes. After a snotty PM from a board moderator on the Asaa forum, I banned them.
I remember you mentioning that. I never got snotty PMs but I did get snotty responses probably from the same moderator who sent you the PM.

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JQLewis
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Re: myapnea dot org

Post by JQLewis » Sat Nov 01, 2014 10:18 am

It seems like a worthwhile effort, imo. The goal however is for you to help them, not the other way around. They want your data to assist with their research. If you think that will eventually work to your benefit, then why not participate? They're not going to advocate for better patient/doctor relations, though. They're not going to improve how DMEs and insurance companies treat people. They're not going to attempt to empower patients in any way.

Just to indulge in my favorite sport, dead-horse flogging, I still find it amazing how many people distrust the ASAA and yet passively accept the current state of affairs. There was a recent thread about a patient who was threatened and treated like a criminal by their doctor for daring to adjust their pressure settings. "The doctor's a jerk", was the typical reaction, "get another". Riiight. Everyone here know how easy it is to find a caring, responsible doctor to work with them.

IMO, nothing will ever change for apnea patients unless they band together to insist on change. If AIDS patients hadn't "Acted Up" they'd still be mired in the same lousy conditions that prevailed in the eighties. Passive victims remain victims. The only hope for empowerment is to be a loudmouth. Just my two cents.

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bwexler
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Re: myapnea dot org

Post by bwexler » Sat Nov 01, 2014 12:13 pm

Some of us are too shy to be a loud mouth.
Others come here and get better into than most doctors or DMES offer and just don't bother to go back.

The people at the top who matter build walls to keep us away from them.

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Re: myapnea dot org

Post by chunkyfrog » Sat Nov 01, 2014 12:31 pm

Since I do not have the funds for endless litigation, I do what is practical.
When I was young, I was an activist. It was thrilling and satisfying, but an uphill struggle.
I learned how much trouble it can get me in, and decided it was a luxury I could not afford.

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asleep@thewheel
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Re: myapnea dot org

Post by asleep@thewheel » Sat Nov 22, 2014 8:58 am

Hello All,

viewtopic/t101787/viewtopic.php?f=1&t=9 ... rg#p929869

Let me see if I can clear up a few issues. I am the volunteer chief operating officer of the American Sleep Apnea Association. The ASAA is now a patient only organization. We have moved our sleep professionals into a newly formed Medical Scientific Advisory Council without voting privileges. We plan on inviting healthcare professionals from all arenas that connect with sleep fragmentation to join our advisory council so we can learn from each other in a bidirectional manner. Our executive director is a now patient with 20 plus years experience of being on bipap for mixed central apnea and has a ton of experience of running a forum. She was the founder of talkaboutsleep.

Have mistakes been made in the past? Yes. Are we doing our best as a volunteer organization to help those undiagnosed? the answer is we are trying. We can do more inclusively together to right the wrongs. For example, Let's propose and do validated research together on patients monitoring their own data and titration settings. We have to live with this treatable disease and yes cureable disease if treated early in pediatrics. Imagine if we were all treated earlier and avoided those 7-10 years of misdiagnosis experience that most of us share.

The opportunity that we all have to come together at http://www.MyApnea.Org is unprecedented in today's learning healthcare system. We are the glue that connects to all of the comorbidities represented inside PCORI, patient centered outcomes research network. The Two major focus of their charge is to focus on diabetes and obesity. The HealtheHeart allinace, creaky joints, COPD, mood disorder, crohns, and many others chronic disease cohorts make up the Patient Powered Network that is being funded by the ACA. We have a chance to share our knowledge and identify all of those cardiovascular, anxiety, inflammatory patients that are still suffering inside of their healthcare system. Let's break the silos. Not one disease defines any of us.

I invite you to come and lend your voice, your knowledge, your expertise, your experiences, and your passion so we can help others avoid going through the struggle we went through in the past or are currently dealing with. This site was a major influence in helping me learn to navigate my treatment. I learned a lot and also made plenty of mistakes after all we are human and sleep deprived.

Please sleep well,

Patient investigator
@sleepapneabook
Adam Amdur

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49er
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Re: myapnea dot org

Post by 49er » Sat Nov 22, 2014 9:16 am

asleep@thewheel wrote:Hello All,

viewtopic/t101787/viewtopic.php?f=1&t=9 ... rg#p929869

Let me see if I can clear up a few issues. I am the volunteer chief operating officer of the American Sleep Apnea Association. The ASAA is now a patient only organization. We have moved our sleep professionals into a newly formed Medical Scientific Advisory Council without voting privileges. We plan on inviting healthcare professionals from all arenas that connect with sleep fragmentation to join our advisory council so we can learn from each other in a bidirectional manner. Our executive director is a now patient with 20 plus years experience of being on bipap for mixed central apnea and has a ton of experience of running a forum. She was the founder of talkaboutsleep.

Have mistakes been made in the past? Yes. Are we doing our best as a volunteer organization to help those undiagnosed? the answer is we are trying. We can do more inclusively together to right the wrongs. For example, Let's propose and do validated research together on patients monitoring their own data and titration settings. We have to live with this treatable disease and yes cureable disease if treated early in pediatrics. Imagine if we were all treated earlier and avoided those 7-10 years of misdiagnosis experience that most of us share.

The opportunity that we all have to come together at http://www.MyApnea.Org is unprecedented in today's learning healthcare system. We are the glue that connects to all of the comorbidities represented inside PCORI, patient centered outcomes research network. The Two major focus of their charge is to focus on diabetes and obesity. The HealtheHeart allinace, creaky joints, COPD, mood disorder, crohns, and many others chronic disease cohorts make up the Patient Powered Network that is being funded by the ACA. We have a chance to share our knowledge and identify all of those cardiovascular, anxiety, inflammatory patients that are still suffering inside of their healthcare system. Let's break the silos. Not one disease defines any of us.

I invite you to come and lend your voice, your knowledge, your expertise, your experiences, and your passion so we can help others avoid going through the struggle we went through in the past or are currently dealing with. This site was a major influence in helping me learn to navigate my treatment. I learned a lot and also made plenty of mistakes after all we are human and sleep deprived.

Please sleep well,

Patient investigator
@sleepapneabook
Adam Amdur
Adam,

Are you now saying that ASAA welcomes patients actively monitoring their data and changing pressures if necessary to improve their treatment as long as they understand what they are looking at?

I appreciate your post but I am still not sure you understand why people on this board are extremely leery of my apnea.org since ASAA is a big part of it. Would JediMark be welcomed back after he was banned for what I felt was bogus reasons? Would he be allowed on my apnea.org?

By the way, I tried to post on my apnea.org but it didn't go through for some reason. What I wanted to say is in spite of seeing several sleep doctors, I didn't learn anything about my condition from them. Everything I learned is due to this board.

49er

asleep@thewheel
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Re: myapnea dot org

Post by asleep@thewheel » Sat Nov 22, 2014 9:51 am

49er wrote:
asleep@thewheel wrote:Hello All,

viewtopic/t101787/viewtopic.php?f=1&t=9 ... rg#p929869

Let me see if I can clear up a few issues. I am the volunteer chief operating officer of the American Sleep Apnea Association. The ASAA is now a patient only organization. We have moved our sleep professionals into a newly formed Medical Scientific Advisory Council without voting privileges. We plan on inviting healthcare professionals from all arenas that connect with sleep fragmentation to join our advisory council so we can learn from each other in a bidirectional manner. Our executive director is a now patient with 20 plus years experience of being on bipap for mixed central apnea and has a ton of experience of running a forum. She was the founder of talkaboutsleep.

Have mistakes been made in the past? Yes. Are we doing our best as a volunteer organization to help those undiagnosed? the answer is we are trying. We can do more inclusively together to right the wrongs. For example, Let's propose and do validated research together on patients monitoring their own data and titration settings. We have to live with this treatable disease and yes cureable disease if treated early in pediatrics. Imagine if we were all treated earlier and avoided those 7-10 years of misdiagnosis experience that most of us share.

The opportunity that we all have to come together at http://www.MyApnea.Org is unprecedented in today's learning healthcare system. We are the glue that connects to all of the comorbidities represented inside PCORI, patient centered outcomes research network. The Two major focus of their charge is to focus on diabetes and obesity. The HealtheHeart allinace, creaky joints, COPD, mood disorder, crohns, and many others chronic disease cohorts make up the Patient Powered Network that is being funded by the ACA. We have a chance to share our knowledge and identify all of those cardiovascular, anxiety, inflammatory patients that are still suffering inside of their healthcare system. Let's break the silos. Not one disease defines any of us.

I invite you to come and lend your voice, your knowledge, your expertise, your experiences, and your passion so we can help others avoid going through the struggle we went through in the past or are currently dealing with. This site was a major influence in helping me learn to navigate my treatment. I learned a lot and also made plenty of mistakes after all we are human and sleep deprived.

Please sleep well,

Patient investigator
@sleepapneabook
Adam Amdur
Adam,

Are you now saying that ASAA welcomes patients actively monitoring their data and changing pressures if necessary to improve their treatment as long as they understand what they are looking at?

I appreciate your post but I am still not sure you understand why people on this board are extremely leery of my apnea.org since ASAA is a big part of it. Would JediMark be welcomed back after he was banned for what I felt was bogus reasons? Would he be allowed on my apnea.org?

By the way, I tried to post on my apnea.org but it didn't go through for some reason. What I wanted to say is in spite of seeing several sleep doctors, I didn't learn anything about my condition from them. Everything I learned is due to this board.

49er
Patients should always be an active participant in our own care if we are cognitively capable.
So yes monitoring data is what MyApnea.Org is all about. changing pressure is technically considered illegal since under current law it requires a physicians oversight. However if that is where you want to see the dial change then MyApnea.Org is the venue to make that happen. You are only preaching to the choir here. The FDA, CMS, AHRQ, ASPE, ONI, PCORI, NIH, etc are all in the room as partners. Let me assure you that this is a first. There are no guarantees for success. Not participating will get our community nowhere.

There is more and more data generated every day. PCORnets mission is to find ways to make this data aggregation improve our quality of life. Not how many hours you used your machine. We can move the bar and be a tipping point on many fronts. MyApnea.Org is a research platform for the network of networks. The question is what is in it for the patient? What is the value proposition? Peer to peer mentoring which goes on this site is great. We support that. We want as diverse of a patient population as can be so we can find out once and for all what's in the patients best interest.

As I said the ASAA forum is under new leadership. I don't know exactly what went on in the past. All I am concerned about is getting people help no matter where they choose to go for that knowledge. As an experienced patient please understand that we are building this research network. It is an iterative process. The foundation and infrastructure have to be built in a healthy manner.

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Re: myapnea dot org

Post by squid13 » Sat Nov 22, 2014 10:54 am

asleep@thewheel wrote:changing pressure is technically considered illegal since under current law it requires a physicians oversight.
Could you show me in writing the law that say's I can't change my pressure settings. I've never been able to find it.

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Re: myapnea dot org

Post by nanwilson » Sat Nov 22, 2014 11:08 am

squid13 wrote:
asleep@thewheel wrote:changing pressure is technically considered illegal since under current law it requires a physicians oversight.
Could you show me in writing the law that say's I can't change my pressure settings. I've never been able to find it.
My guess is that he means they ( the professionals) "THINK" its TECHNICALLY illegal to change pressures unless its under the guidance of a professional. Of course they (the professionals) will get paid every time they are consulted ...... its a $$$$$ directed "THINK" not a legal one .
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Re: myapnea dot org

Post by OkyDoky » Sat Nov 22, 2014 11:21 am

In the home care settings there are a lot of "Technical" things taught to the patient or caregiver such as injections, changing IV fluids, catheteriaztions and others. I feel that monitoring data and optimizing tx with pressure changes if necessary fits in this category.
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