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Knowing now what I do-What would a Sleep Doctor have done?
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readyforsleep Offline

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Location: Lawrenceburg, Indiana

Post: #11
RE: Knowing now what I do-What would a Sleep Doctor have done?
Back to your original question:

When I first started with my brick, I knew nothing. They gave me
the brick and a nasal pillow mask and only checked for
compliance. I never knew about mouth breathing, auto bipap,
data, etc. I couldn't believe I was left on my own with this battle.
Contacting the dme with questions or to get supplies was
impossible, frustrating, unbusinesslike. I would go to the sleep doctor 1 year later and he would
ask how was I feeling? I was great so decided that was a waste
of time and did not go back until I was feeling lousy. I still had
the brick, but had done some research. I knew if I went back
he would say how are you feeling? I would say lousey and
then who knows- I guess he would start playing with the pressure on
my machine. This process could take forever. So I borrowed
an autopap from the Dme so I had data to show the doctor,
bought a S9 Auto and I wish I could say my my pressure
tweaking is over, but it is not. Until I get in maintenance mode,
my visits to the doctor are needed. I am realizing that the
doctor is only looking at averages, they do not look at the day
to day trends like we do. So when I do go I will have my
backup data available in the event I do not agree with his
analysis.

2010 sleep study 63 AHI, 2014 3.0
06-08-2014 03:08 PM
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robysue Online
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Post: #12
RE: Knowing now what I do-What would a Sleep Doctor have done?
(06-08-2014 01:30 PM)Sleepster Wrote:  
(06-08-2014 01:03 AM)robysue Wrote:  What would the doctor have done if you showed him the card so he knew you were compliant, but your answer to "How do you feel?" was "I still feel lousy."??

If it's a doctor who prescribed your machine, and he or she didn't insist on a data-capable machine, then it would be an opportunity to educate that doctor on the benefits of having the data available.
Sleep doc #1 knew about full efficacy data machines. And I specifically ask for a scrip specifying a full efficacy data machine at my one and only meeting with the idiot.

He told me to my face, "You don't need a full efficacy data machine because you will be feeling better in two weeks.''

I tried my best to push back, but he just would not relent and tell me he'd write a script for a full data machine. *sigh*

Two weeks after starting CPAP I had gone from a functioning adult with no problem with daytime sleepiness to a walking zombie who was micronapping on her feet while trying to teach Real Analysis (at least I think it was Real Analysis) ...

Fortunately I had gumption to tell sleep doc #1 that no, he could not simply fax my script to the DME next door (who I already knew supplied bricks), and that I would let him know when I found a DME that I wanted to work with. It took three or four weeks to find the DME, but when I did, I found one that set all their new patients up with their choice of a S9 Autoset or a PR System One Auto.

And sleep doc #1's PA who actually dealt wtih me for the next 8 months was willing to look at my data and discuss it with me. Unfortunately I was one of those whose PAP therapy on paper looked good (low AHI, no leaks to speak of, and full compliance) but who felt about 1000 times WORSE after starting CPAP for several months.

If I had NOT had a machine that could show me that it was doing its job, I would never have made it to long term PAPer status. And if I'd given up back in 2010-2011, hubby would never have become a paper this past spring ....
06-08-2014 03:22 PM
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ShelaghDB Offline

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Post: #13
RE: Knowing now what I do-What would a Sleep Doctor have done?
Interesting reading all of your stories.

What surprises me is that the insurance companies are still paying out in full for Sleep Apnea, as is.

What i mean is that it must be costing them all a fortune handing out these Escapes or other non data type machines yet I wonder how many people actually follow through with them? Not a lot I bet..

As ready to sleep says, they just hand you this machine and expect you to just understand and grasp it. Many don't. Hubby is a great example. 5 minutes and he was done.

I have another girlfriend that had 3 brain tumours over the course of 20 years, and a few other diseases and has fought to live and she too was given an S8 escape I think it is and she gave up. She tried a couple of times a few years ago to use it and kept pulling it off of her head in her sleep and finally gave up.
I can't think of anyone I know that i bet might need it as badly as she might but they just left her to her own devices, floundering........and this is a woman that has taken all of her health issues and looked after each one better than the docs but this one she can't seem to get wrapped around. The help just isn't there for her ;-(


Without these forums, I am not sure what many people would do.
06-08-2014 05:17 PM
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Rycharde Offline

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Other Comments: On cpap since Dec, 2009: Type 2 Diabetes: Cancer survivor: 3 lead pacemaker/defib:

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Post: #14
RE: Knowing now what I do-What would a Sleep Doctor have done?
(06-08-2014 05:17 PM)ShelaghDB Wrote:  Interesting reading all of your stories.

What surprises me is that the insurance companies are still paying out in full for Sleep Apnea, as is.

What i mean is that it must be costing them all a fortune handing out these Escapes or other non data type machines yet I wonder how many people actually follow through with them? Not a lot I bet..

As ready to sleep says, they just hand you this machine and expect you to just understand and grasp it. Many don't. Hubby is a great example. 5 minutes and he was done.

I have another girlfriend that had 3 brain tumours over the course of 20 years, and a few other diseases and has fought to live and she too was given an S8 escape I think it is and she gave up. She tried a couple of times a few years ago to use it and kept pulling it off of her head in her sleep and finally gave up.
I can't think of anyone I know that i bet might need it as badly as she might but they just left her to her own devices, floundering........and this is a woman that has taken all of her health issues and looked after each one better than the docs but this one she can't seem to get wrapped around. The help just isn't there for her ;-(


Without these forums, I am not sure what many people would do.

The figures I have heard/read say that there is somewhere between 40% to 60% failure rate for CPAP in the US.
Had I not found this forum almost 5 years ago, I would have been one of the failures as well. I was habded a brick like so many have been, but asking questions, that should have been answered at the DME level but I was so ignorant to not know the questions to ask, those questions were answered here. Went back to DME and asked why no data capable machine? What good did having one do if no one could see what was happening? Answer was, "that's what a yearly sleep test is for"! I'm still with that DME for supplies etc, but I'm a bit of a squeeky wheel, and referred many patients to them with implicit instructions to ask for data capable machines. Noe that DME doesn't stock bricks anymore, just APAP machines when CPAP is prescribed. I've been trying for a while now to be a patient advocate for the DME, so that I can talk to new and other patients about the day to day ritual of PAP therapy, and easing there way into the lifestyle. The DME hasn't quite taken me seriously yet, but some of their RT's have called with questions that their patients ask about what happens after they leave? I'm not an RT by any means, but locally the RT's from this particular DME refer some of their patients to me by giving my phone number to them, with my blessing of course.
I figure that if I can get this accepted as a way for new PAPers to get started, then maybe other DME's may start doing the same thing and compliance rates would go up.
And maybe I've been so deprived of oxygen for all those years before CPAP, that I'm just plain crazy! Dielaughing
What do you think?

I-love-CPAP Rycharde
06-08-2014 06:33 PM
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Gabby Offline

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Post: #15
RE: Knowing now what I do-What would a Sleep Doctor have done?
Shelagh, sorry for butting in here but I have been trying to find a site where you may have mentioned how you night times have been going with your Autoset.
Have you got all your numbers sorted yet?
Would love an update.
I finally have a chance at buying a new machine. I am about to post a question.
I really hope you have sorted the Auto out.

Sleep Tight...
Gabby
(This post was last modified: 06-08-2014 07:21 PM by Gabby.)
06-08-2014 07:20 PM
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readyforsleep Offline

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Posts: 233
Joined: Mar 2014

Machine: Resmed S9 AutoSet for her
Mask Type: Nasal pillows
Mask Make & Model: Swift FX for her
Humidifier: attached
CPAP Pressure: 14.6-17.4
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Lawrenceburg, Indiana

Post: #16
RE: Knowing now what I do-What would a Sleep Doctor have done?
Rycharde,
I think what you are doing is great. What a resource you are
to all these newbies!

2010 sleep study 63 AHI, 2014 3.0
06-08-2014 07:21 PM
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Gabby Offline

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CPAP Software: SleepyHead

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Location: Sunshine Coast, Qld., Australia.

Post: #17
RE: Knowing now what I do-What would a Sleep Doctor have done?
(06-08-2014 06:33 PM)Rycharde Wrote:  
(06-08-2014 05:17 PM)ShelaghDB Wrote:  Interesting reading all of your stories.

What surprises me is that the insurance companies are still paying out in full for Sleep Apnea, as is.

What i mean is that it must be costing them all a fortune handing out these Escapes or other non data type machines yet I wonder how many people actually follow through with them? Not a lot I bet..

As ready to sleep says, they just hand you this machine and expect you to just understand and grasp it. Many don't. Hubby is a great example. 5 minutes and he was done.

I have another girlfriend that had 3 brain tumours over the course of 20 years, and a few other diseases and has fought to live and she too was given an S8 escape I think it is and she gave up. She tried a couple of times a few years ago to use it and kept pulling it off of her head in her sleep and finally gave up.
I can't think of anyone I know that i bet might need it as badly as she might but they just left her to her own devices, floundering........and this is a woman that has taken all of her health issues and looked after each one better than the docs but this one she can't seem to get wrapped around. The help just isn't there for her ;-(


Without these forums, I am not sure what many people would do.

The figures I have heard/read say that there is somewhere between 40% to 60% failure rate for CPAP in the US.
Had I not found this forum almost 5 years ago, I would have been one of the failures as well. I was habded a brick like so many have been, but asking questions, that should have been answered at the DME level but I was so ignorant to not know the questions to ask, those questions were answered here. Went back to DME and asked why no data capable machine? What good did having one do if no one could see what was happening? Answer was, "that's what a yearly sleep test is for"! I'm still with that DME for supplies etc, but I'm a bit of a squeeky wheel, and referred many patients to them with implicit instructions to ask for data capable machines. Noe that DME doesn't stock bricks anymore, just APAP machines when CPAP is prescribed. I've been trying for a while now to be a patient advocate for the DME, so that I can talk to new and other patients about the day to day ritual of PAP therapy, and easing there way into the lifestyle. The DME hasn't quite taken me seriously yet, but some of their RT's have called with questions that their patients ask about what happens after they leave? I'm not an RT by any means, but locally the RT's from this particular DME refer some of their patients to me by giving my phone number to them, with my blessing of course.
I figure that if I can get this accepted as a way for new PAPers to get started, then maybe other DME's may start doing the same thing and compliance rates would go up.
And maybe I've been so deprived of oxygen for all those years before CPAP, that I'm just plain crazy! Dielaughing
What do you think?

Excellent work Rycharde, I have an Escape at the moment and I just cannot see the point of them, other than the obvious, but other than that the patient has not got a clue what is happening if it is doing the job or not, useless piece of rubbish.
They should be completely taken off the market.

Keep up the good work!

Sleep Tight...
Gabby
06-08-2014 07:30 PM
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Sleepster Offline
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Post: #18
RE: Knowing now what I do-What would a Sleep Doctor have done?
(06-08-2014 05:17 PM)ShelaghDB Wrote:  What i mean is that it must be costing them all a fortune handing out these Escapes or other non data type machines yet I wonder how many people actually follow through with them? Not a lot I bet..

I doubt that only furnishing data-capable machines would increase compliance rates. Support is also needed, even though many people won't take advantage of it.

I just don't understand how people can think it's ok to go to sleep without a CPAP machine, when they know that they'll stop breathing in their sleep!

I also don't understand how people can not monitor their own progress, but there are many people who are compliant and don't, either because they have a brick or because they just don't care.

Bricks will soon be obsolete, I think.

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06-08-2014 07:46 PM
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robysue Online
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Post: #19
RE: Knowing now what I do-What would a Sleep Doctor have done?
(06-08-2014 07:46 PM)Sleepster Wrote:  Bricks will soon be obsolete, I think.

I wish I were that optimistic.

But the manufacturers regard the DMEs as their customers, not us. And is seems that the majority of DMEs want to sell bricks and nothing else unless a script requires them to sell a nonbrick. And most docs don't write "efficacy data" on the script.

Hence the demand will stay high for the manufacturers to make the bricks because that's what their customers (the DMEs) want to buy from the manufacturers.
06-08-2014 09:08 PM
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SleepyDreamCatcher Offline

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Post: #20
RE: Knowing now what I do-What would a Sleep Doctor have done?
(06-08-2014 07:46 PM)Sleepster Wrote:  
(06-08-2014 05:17 PM)ShelaghDB Wrote:  What i mean is that it must be costing them all a fortune handing out these Escapes or other non data type machines yet I wonder how many people actually follow through with them? Not a lot I bet..

I doubt that only furnishing data-capable machines would increase compliance rates. Support is also needed, even though many people won't take advantage of it.

I just don't understand how people can think it's ok to go to sleep without a CPAP machine, when they know that they'll stop breathing in their sleep!

I also don't understand how people can not monitor their own progress, but there are many people who are compliant and don't, either because they have a brick or because they just don't care.

Bricks will soon be obsolete, I think.

My father has been using a "brick" CPAP for about 20 years. He can't remember when he started using it when I ask. At the time I don't think there was anything but "bricks". He was set up, started using it, felt better almost immediately and has never looked back. He went around 10-15 years before he was even aware that he could get another machine. When he did get it replaced it was replaced with that companies current brick.

When I ask him about what he is using or settings or efficiency he hasn't a clue what I am talking about. It works and that is good enough for him. Lately it hasn't been working as well and I have finally convinced him that he should see someone to be sure the settings are still appropriate for him. He is supposed to be doing that sometime this month. But I don't think he will ever push for a full effiency machine. He believes that the doctor knows best. If whoever his new doctor is wants him to have a full efficiency machine he'll get it, but even then I doubt that he will monitor his own data. He just comes from a different generation ... And one that trusted doctors a lot more than I do.
06-08-2014 11:40 PM
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