MarkHanson

I worked for a time in a study as 'patient support;, meeting with new CPAP users and following up with them by email and phone periodically. While the study did not show 'significant' improvement in compliance from the support, my own impression was that it did help. For one it helped me to better understand the range of issues experienced by new CPAP users. And the meaning of 'compliance'. And the care one must take to protect patient confidentiality. I have heard/read of studies that were far more successful with the 'patient support' model and hope to see more studies undertaken so that 'patient support' becomes a regular part of care.
One way I improved my own use was to become attentive to comments by others and notice that just about every group I am in has some number of folks with sleep issues. That usually includes some number of folks who do, and others who do not,use CPAP.

My machine got adjusted because there were several months when I was sending in SIM cards. My machine now can get adjusted remotely because my newer machine apparently has wi-fi access both ways! The compliance rate is low for a number of reasons.
I wonder how much follow-up is done as I bet it is not reimbursed as billable time. No proof just as suspicion.

Fears are not irrational until you understand them and then they may be if you let them. I feared using CPAP because I was not briefed on the system well enough to really understand it. I was convinced that I was at risk if I did not - so I did. Years with CPAP convince me that it is the mask - not the machine - that is the issue for most folks, myself included. I am lucky. I am able to sleep with my mouth exposed, so I never had to deal with a full face mask, I used nasal buds. I now use a dental appliance because I was crushing my teeth, so my mouth is occupied.

I was luckier still to be at a conference in Denver and be shows a newer sort of mask - which is great --- for me. Respironics Dreamwear Nasal Mask Frame Medium and Softwraps It is wicked comfortable and very light weight. When my original one wore out I found I could buy a replacement on Amazon, so I did.

It took months for me to become comfortable using the CPAP. A major inducement was the support of my wife who remarked that with it both I, and she, seemed to sleep better. No snoring. After years of use and a machine upgrade after about four years I am committed to using mine at night -- and napping. I travel with mine.

Give yourself time and be patient.

Sierra I am interested and I do look at the detail - with my sleep doctor. I pay more attention to my affect after I have slept. I also discuss my sleep with colleagues in the sleep apnea community where anecdotal evidence is it. It would be great to have a strong community of patients advocating for sleep, not just for the dangerous conditions like apnea, but treating sleep like diet --- a fundamental of good health. I participate in part to encourage others to speak up and join in! Thanks for lending your voice. Mark

Sierra I tried the link you provided and it caused a browser error. Please see if yo can find a good link to the article.

This discussion has encouraged me to ask myself,"What do I want (ideally) related to my Sleep Apnea therapy?" Thinking this over I find that I do not want to rely on my own know-how and technical intervention to be the key to my health. I cherish the collaboration and interaction with the team that supports my health. I live in Boston and I am at most fifteen minutes from any of the doctors, health centers, or hospitals I need. It is not luck - it reflects the value my family places on quality health care. My PCP, sleep doctor, urologist, neurologist, cardiologist and dentist are key. Many have become friends over the years. That said I find myself the most critical link among these great individuals because we do not have a unified medical records management system. So ... Reflecting, on the article, I decided some time back to NOT use tools like Sleep Head but rather to focus my efforts on becoming

1. A better listener when interacting with my doctors.
2. A diligent participant in my own care by following the guidance I receive.
3. A thoughtful patient, communicating early and often when I have a question or concern.
4. Mindful that how I behave is modeling more powerfully to my kids and grand-kids more than anything I say to them.

Several of my colleagues do not live close to the medical providers and services they require. Not by their choice, I am sure. There are many places where population density or the requirements for specialized care do not match economically. Yes, telemedicine and other emerging technologies mitigate some of the distance and limited resource issues. Often however the question is one of cost rather than quality or effectiveness of care. Sometimes it is the complexity of the condition. We as a people need to move beyond these limitations through however many steps it takes to ensure the best healthcare for everyone.

IMHO the key dynamic is how the general public, the medical community, employers and governments view the importance of cooperation and collaboration between these groups. Awareness, education, a lot of listening, and removing barriers has proven very effective in arenas as diverse as industry and social justice. The voice of the customer and the voice of the 'minority' bring new vitality and perspective to the discussion. Realize that the dependencies among groups and individuals matter. Believing that improving efficiency, effectiveness, and focusing on quality-of-life needs to be the goal for everyone in the community, not just those with the deepest pockets or the loudest voices. Such focus, give patients, persistence, and perseverance, over time, brings unexpected amazing results.

I had a whistle on my ResMed the other day. My wife heard it easily so I knew it was not my hearing things I found a quick fix. I move the CPAP to a less congested part of the stool it was on, Then I took the reservoir out and re-seated it, And the whistling went away. I suspect I had not fully seated the reservoir when I had refilled it for the night.

Thank you to those who have participated to date. I have a newer CPAP and it includes the wi-fi function, uploading the data to a ResMed server each day. I subscribe to MyAir so I can see the patient-directed view of the data by logging in later in the day. While the info is not extensive, it is something. But I was the one sleeping so it does not tell me more than I would recall if I had a poor night's sleep. I get good marks from the MyAir tool because I, at the urging of a colleague who is also a CPAP user, use my CPAP while I nap. I strongly recommend that broader use of the CPAP; I 'feel' it improves that part of my sleep.

I wonder how often a sleep professional checks on my status between my annual visits using the log on that ResMed server? My annual is coming up. I plan to ask.

Apparently one could make a change that disabled the very mechanism that one wants to function. A power failure would do the same thing. Neither very likely.

Our group came across this provocative article about Sleepyhead, a tool that enables the patient to access and change their CPAP settings. https://motherboard.vice.com/en_us/article/xwjd4w/im-possibly-alive-because-it-exists-why-sleep-apnea-patients-rely-on-a-cpap-machine-hacker

I for one am very interested in hearing from the community about the potential and already realized benefits and risks discussed. Let the discussion begin.
Mark Hanson

This happens to me when I am in an unintentionally meditative state. I have read about this happening to folks practicing yoga but I am not a practitioner, just a thoughtful person. I notice this and after it happened a few times I was able to calm myself and not see this as dangerous. BUT I suspect it is. I am not worried and trust that if I stay in that state I will take a breath soon enough. And so far I have. Probably not the best attitude but that is mine.