Why do we abandon ship?

[Todzo]

Todzo.
A sister-in-law went through 3 labs without being titrated. They sent her home with a bipap. No experience. No support! After a 3 month struggle she gave up, and gave it back to the DME. Swears she would rather die in her sleep than wear the thing.
If people don't have the positive attitude, perseverance, courage, and support And willingness to do what it takes to make this work. They may fail. Sometimes they have all of the above but don't have support. It feels like they are the only one going through this OSA thing. They may give up.

I have to admit that I am one of those that didn't have big issues with being a hosehead for life. Being a rotating factory shift worker had already trained this body to sleep under some trying conditions. Yes, there was the initial trial and error in finding the right headgear. But the second one was the charm...
My father was a great teaching example. In the mid 80's I heard him struggling to breath while sleeping. The 3rd heart attack killed him after 5 days of his lungs filling with fluid because his heart was so damaged.

I keep coming back to this form because I learned sooooo darn much here.... and still do To the point of embarrassing my Neurologist /Sleep Dr Specialist.... because I knew more about my machine than he did. And that convinced him to buy one for himself.
People here are very helpful. And that's felt and appreciated deeply. They've also walked that mile in your shoes and know what it can be like. Where your Dr and RT most likely has never been there and are clueless. That comes across to many people whether they are consciously aware of that... or not.
The key word for me is support... And I get that 100% from people here.
Bless you all!
Cindy

Hi Cindy!

Thinking about why my own titration was initially successful I think it had a lot to do with the fact that I was living in a bunk bed shelter environment:

1. It was pretty public. Not a great deal of difference between bunking with 150 men vs at the hospital - wired up like a Christmas tree with cameras and all the night. About the same "exposure" feeling either way.

2. The CPAP meant that I would bother my bunkmates less. That was a major stress reducer and stress appears to me to be the major factor in how well my CPAP has worked historically.

I think the whole “one night in a lab” thing needs to change to a “several nights in your bed at home” experience regarding sleep testing and titration. We do not sleep in a lab so testing and titration done there is indeed unscientific and of very limited use and effectiveness as the actual use numbers indicate. Testing and titration need to be done in the native environment of the person being tested or titrated – and to take into account the fact we do not sleep the same every night so several days of data and confirmation of pressure setting are needed to work well in my opinion.

I am glad to know you have found some good support here.

Have a great weekend!

Todzo

[Todzo]

To Todzo: What kind of a unit do I need for it to be a "Breathing Aware" PAP Sorry, I'm a little slow today. Might be the damaged brain tissues clashing.

Hi lazer!

I recall that Dr Barry Krakow mentions several models as being breathing volume aware in this interview: http://doctorstevenpark.com/expert-inte ... leep-apnea

I am setting up to re-listen to the interview and hope to post back in a while the specific area of the interview where he does that and mentions CO2 maintenance issues.

TTYL

Todzo

Todzo,

Are you talking about the ASV machines?

49er

Hi 49er!

As I listened to the linked interview (above) I noted that Dr. Krakow does mention that several ASV class machines are "breathing volume aware" that is - they control by breathing volume and so also help with "CO2 maintenance issues". He also mentions that even he "has no idea what is in them" since that is proprietary. The doctors are now proscribing us - they know not what! What a crazy scary world!!

However, I also noted that you have to pretty much fail out of all the other machines before you would qualify for the $6,000.00 ASV machine. Like most things they have for OSA - you cannot afford it - it may not help you - no one knows what is in there - so forget it and go die somewhere - I guess. I am glad I found breathing volume awareness and eucapnic breathing retraining - with my Post Traumatic Stress (PTS - used to be - PTSD) added to my Severe Obstructive Sleep Apnea (OSA) with Extreme Hypoxia I would have been a gonner!

I hope we do find a way for all of us!!

Todzo

[49er]

Hi 49er!

As I listened to the linked interview (above) I noted that Dr. Krakow does mention that several ASV class machines are "breathing volume aware" that is - they control by breathing volume and so also help with "CO2 maintenance issues". He also mentions that even he "has no idea what is in them" since that is proprietary. The doctors are now proscribing us - they know not what! What a crazy scary world!!

However, I also noted that you have to pretty much fail out of all the other machines before you would qualify for the $6,000.00 ASV machine. Like most things they have for OSA - you cannot afford it - it may not help you - no one knows what is in there - so forget it and go die somewhere - I guess. I am glad I found breathing volume awareness and eucapnic breathing retraining - with my Post Traumatic Stress (PTS - used to be - PTSD) added to my Severe Obstructive Sleep Apnea (OSA) with Extreme Hypoxia I would have been a gonner!

Todzo,

With all due respect, you're greatly confusing the issues. The machines work when used for many people (not all).

In my own situation, during the rare times I was able to stay asleep on the machine for 4 hours, my productivity at work soared. It was like I had received a brain transplant. Imagine how productive I would have been if I had slept 8 hours.

The issue is and the primary reason for the failure of cpap treatment is the followup. In my situation, my first sleep doctor blamed my failures on mental health issues because of my stupidity in disclosing my psych med history which will never ever happen again. She refused to look at my machine data and wanted to pawn me off onto a psychiatrist.

Fortunately, this is an extreme case but other people don't get good followup care at all. The doctor rushes them in and out without giving a darn about how they are doing. So people who still feel like crap in spite of using the machine are so out of luck and are forced to find solutions on their own.

That had absolutely nothing to do with the cpap titration failures in the lab. What you are proposing would not change that or people's situations with doctors and would be very costly and expensive. And I say that as one who is not as leery of government as other folks on this forum.

What needs to be reformed is the followup care which is a whole other post.

49er

PS - Apologies as I forgot to thank you for the response and went off on my own tangent.

[Todzo]

Hi 49er!

As I listened to the linked interview (above) I noted that Dr. Krakow does mention that several ASV class machines are "breathing volume aware" that is - they control by breathing volume and so also help with "CO2 maintenance issues". He also mentions that even he "has no idea what is in them" since that is proprietary. The doctors are now proscribing us - they know not what! What a crazy scary world!!

However, I also noted that you have to pretty much fail out of all the other machines before you would qualify for the $6,000.00 ASV machine. Like most things they have for OSA - you cannot afford it - it may not help you - no one knows what is in there - so forget it and go die somewhere - I guess. I am glad I found breathing volume awareness and eucapnic breathing retraining - with my Post Traumatic Stress (PTS - used to be - PTSD) added to my Severe Obstructive Sleep Apnea (OSA) with Extreme Hypoxia I would have been a gonner!

Todzo,

With all due respect, you're greatly confusing the issues. The machines work when used for many people (not all).

As one who has used CPAP for over nine years I know that it can work. The numbers are telling us that, at a year, it is true for only twenty percent of the people and that only looks at machine use.

I would not in any way shape or form characterize that as “many people”.

In my own situation, during the rare times I was able to stay asleep on the machine for 4 hours, my productivity at work soared. It was like I had received a brain transplant. Imagine how productive I would have been if I had slept 8 hours.

The issue is and the primary reason for the failure of cpap treatment is the followup. In my situation, my first sleep doctor blamed my failures on mental health issues because of my stupidity in disclosing my psych med history which will never ever happen again. She refused to look at my machine data and wanted to pawn me off onto a psychiatrist.

Please listen to yourself:

In my own situation, during the rare times I was able to stay asleep on the machine for 4 hours

Imagine how productive I would have been if I had slept 8 hours.

my first sleep doctor blamed my failures on mental health issues

She refused to look at my machine data and wanted to pawn me off onto a psychiatrist

With my proposed “Sleep Lab in a Box” system you would have had both the titration changes and constant monitoring necessary to keep you using the well tuned PAP as many hours a night as you wished 100% of the time!!! You would not have needed to talk with your willfully ignorant oppressive doctor at all. It would have followed your changes and monitored you in detail and you would have the full sleep lab capability with you for six or so weeks!

The monitoring would be ongoing and continuous. Very, very slow titration would be ongoing. I believe you would have been using the machine 100% of the time, all the time, to the present time.

Fortunately, this is an extreme case

The numbers indicate to me that your experience is common.

but other people don't get good followup care at all. The doctor rushes them in and out without giving a darn about how they are doing. So people who still feel like crap in spite of using the machine are so out of luck and are forced to find solutions on their own.

That had absolutely nothing to do with the cpap titration failures in the lab. What you are proposing would not change that or people's situations with doctors and would be very costly and expensive. And I say that as one who is not as leery of government as other folks on this forum.

What needs to be reformed is the followup care which is a whole other post.

49er

PS - Apologies as I forgot to thank you for the response and went off on my own tangent.

I believe that testing and especially titration need to take place over several nights. We do not sleep the same the lab anyway and it is way to expensive to use for several nights.

The reason I am suggesting that this be a government program is that they have the start up capital of millions to develop the hardware and infrastructure necessary to replace the many billions of dollars you would have to spend to try to do the same thing with our current infrastructure. What is overwhelmingly expensive is the current infrastructure because it is not working and so the people continue to get sicker, fall from our workforce into our hospitals and kill people on our roads. I also think a government is likely better able to overcome the legal issues that frustrate the development process.

We absolutely agree about the follow up thing. We need the data from our PAPs to be monitored all the time for the time we need to use the PAP. I also think we need the feedback from this data to help us manage our lifestyle for better health.

Thank you for the reply 49er – always a pleasure!

Have a great weekend!

Todzo

[chunkyfrog]

Pigeonholing needs to be included in the definition of malpractice.

[49er]

Pigeonholing needs to be included in the definition of malpractice.

So true Chunkyfrog.

It is a disgrace that disclosing certain medical history can lead to horrific care. This needs to end.

Believe it or not, there are alot worse cases than my own. There are people who had medical conditions that were begging for attention but were blown off because they were taking psych meds. I swear I am not making this up.

49er

[Todzo]

Pigeonholing needs to be included in the definition of malpractice.

So true Chunkyfrog.

It is a disgrace that disclosing certain medical history can lead to horrific care. This needs to end.

Believe it or not, there are alot worse cases than my own. There are people who had medical conditions that were begging for attention but were blown off because they were taking psych meds. I swear I am not making this up.

49er

Hi chunkyfrog and 49er!

The way I see it psych is used as a scapegoat. Rather than get down to finding and curing the real problem they send you to a shrink. After that they feel no more responsibility to help you. I have experianced it, I have seen it happen to others, I have seen it on these forums.

Thier own failings are placed on the back of the person and he is lead off into the wilderness never to return.

Perhaps we do need to sue. They have proven they will not listen to me or you!!!

Yes you are right 49er - This needs to end!!!

Have a great weekend all,

Todzo

[Todzo]

Pigeonholing needs to be included in the definition of malpractice.

Hi chunkyfrog!

I think it indeed is. First because they passed over the real problems that are within thier scope of responsibility. Second because the first call they made (the act of pigeonholing) was simply wrong because the real problems are physiological.

Always the poignant point from you chunkyfrog!

Have a great weekend!

Todzo

[Todzo]

Todzo.
A sister-in-law went through 3 labs without being titrated. They sent her home with a bipap. No experience. No support! After a 3 month struggle she gave up, and gave it back to the DME. Swears she would rather die in her sleep than wear the thing.
If people don't have the positive attitude, perseverance, courage, and support And willingness to do what it takes to make this work. They may fail. Sometimes they have all of the above but don't have support. It feels like they are the only one going through this OSA thing. They may give up.

I have to admit that I am one of those that didn't have big issues with being a hosehead for life. Being a rotating factory shift worker had already trained this body to sleep under some trying conditions. Yes, there was the initial trial and error in finding the right headgear. But the second one was the charm...
My father was a great teaching example. In the mid 80's I heard him struggling to breath while sleeping. The 3rd heart attack killed him after 5 days of his lungs filling with fluid because his heart was so damaged.

I keep coming back to this form because I learned sooooo darn much here.... and still do To the point of embarrassing my Neurologist /Sleep Dr Specialist.... because I knew more about my machine than he did. And that convinced him to buy one for himself.
People here are very helpful. And that's felt and appreciated deeply. They've also walked that mile in your shoes and know what it can be like. Where your Dr and RT most likely has never been there and are clueless. That comes across to many people whether they are consciously aware of that... or not.
The key word for me is support... And I get that 100% from people here.
Bless you all!
Cindy

Hi Cindy Lou Who!

Posts like your caused me to write the “why we do abandon ship” thread.

I have been watching how effective or not PAP therapy has been for people for years. When the real number finally got though – that only 20% can use it more than four hours a night at one year – I wanted to see more clearly why. When I saw answers like yours it simply solidified what I thought I knew and spurred me on to come up with a plan.

In my plan class time will be part of what all experience. Those with disability will be provided special support. People will be constantly monitored (actually by software designed to check how the therapy is really going night to night) and problems through this will be noticed and corrected with celerity.

I believe that people have trouble with PAP therapy because it does not work. As a system I would expect it not to work.

The original test is critically flawed by taking the person “out of his native sleeping environment” and by the need to look at several nights since we never sleep the same any two nights.

Titration as it is currently administered is also critically flawed by the same limitations.

Then there is virtually no monitoring or ongoing titration to follow the changes that will occur over time in any human body.

I think that the current emphasis on positive attitude, perseverance, and courage may prevent people from listening to what their body is saying to them. The therapy needs to work. If it is not working the body will tell and we need to hear what it says!

Thanks for the post!

Have a great week!

Todzo