The total cpap experience continues

First and foremost, let me say....with a new degree of appreciation:

THANK YOU! THANK YOU! THANK YOU!

Johnny, for this forum.
Everyone on this forum that has helped me take my life back.
You are the best.

A.W.A.K.E......oh, I'm AWAKE now.

The theme of this meetings was to be, understanding your sleep study.
Presenter was the director.....let me emphasize that....director of the
sleep center in this hospital. This is where I had my study.

There were about 30 people there. It began w/a round the table,
introduction and why are you here tonight.
Most were there for:
mask problems,
vendor problems,
therapy not working,
combinations of all of the above.

I was the only one there to experience an AWAKE meeting.
With that explanation, I got some really strange looks.

After listening to all these complaints, as the questions where slowly dying,
I raised my hand, I had a question.......
"...ah, how many people here have data capable machines and
monitor their leak rates, AHI and events every night?"

YIKES
One guy turns to me and very angry explains that he is not close to his vendor
and can not afford to drive there everyday to have his data read.
YIKES
Everyone else just starred at me. What are you talking about???

Quickly, the director, did I say the presenter was the director of the sleep ctr.???
explains daily data.....I am not making this up.

"Only the newest, most expensive machines, that can be connected to the internet or
modem have that capability. Then your doctor can read your data everyday.
BUT, they are very expensive and Medicare or insc. will not pay for them."
She gave me a look that said, "end of subject."
WOW
I was completely blown away.
I thought about Wulfman's wondering what it would be like to be
thrown out of one of these meetings....I thought, well, maybe this is it.

I looked around the room and thought, these poor people don't have clue.

So, we finally start the presentation of the sleep study.
There was a first page of a study for everyone to look at.
She started explaining each thing, line by line.
No one had a clue what the terms were:
apnea, hypopnea, central apnea, AHI.....no clue.
I was astounded.
Next came an explanation of titration.
How they begin to increase the pressure to lower the AHI.
The next few pages showed a decreasing AHI as the cpap pressure was increased.
She kept saying as we increase the c-flex pressure the patients AHI begins to decrease.
I thought, cflex pressure, what is she talking about?
.....then, I saw it....at the top of each page that showed a pressure change was listed

******C-FLEX PRESSURE 6cm/H2O********
next page
******C-FLEX PRESSURE 7cm/H2O********
next page
******C-FLEX PRESSURE 8cm/H2O********
next page
******C-FLEX PRESSURE 9cm/H2O********

...I don't think she knows what CFLEX pressure is.

This pretend patient had best AHI at 8cm of cflex pressure.
When it went to 9cm, the AHI went up...........

now, wait for it.......wait for it.........

"...and this is why, when your therapy is not working,
you need to have your doctor refer you for another sleep study,
and your pressure can be readjusted."

I was pretty much done at that point.

I wrote out some quick references to cpaptalk.com from my daytimer,
tore them out, and quickly slipped them to the people that I thought really
needed to know.

It was an emotional roller coaster for me.
I was outraged at the presentation and just total crock of the
familiar brown substance that had been spread on these innocent, desperate people.
I was dying inside, looking at the fatigued, frustrated faces.
I was so disappointed because I was expecting so much more.

Conclusion:
If not for this group, I could very easily HAVE been one of those innocent, desperate,
brain dead, clueless victims.

Did I mention........THANK YOU!

Thoughts/comments/suggestions

Hi Carbonman

I know how difficult it can be to confront a so-called expert in a public forum.

What I have to do is say to myself that it doesn't matter how anxious I might be, it doesn't matter if the anxiety shows, it doesn't matter if I am embarrassed. What does matter is me being true to myself in not allowing this rubbish to go unchallenged.

I pay am emotional price for this, but afterwards I know it has been worthwhile.

I am talking about me here, not you.

I do not know if there are AWAKE meetings in Australia, I must find out (and likely get myself into more trouble).

Thanks for the posting, it was interesting, frustrating and sad all at the same time.

Best Wishes

Mars

Carbonman, sorry you were disappointed. Not surprised, just sorry.

Can't tell you what to do, but seems to me to be an open door for a bit of enlightenment to shine through. While I don't hold out much hope that it will be received well, I think this would put me in serious letter writing mode. You express yourself very well, so surely something you would say would strike home. The AWAKE meeting leader may now be without a clue, but she would then be without excuse. Shouldn't have to be this way.

First of all, thank you Carbonman for referring me to this group. I was one of the "clueless, brain-dead" people to whom you handed a slip of paper with the cpaptalk website URL on it. Thank you. I anticipate lots of support and answers to my questions in this forum. Your referral to this group was probably the best outcome of the evening - but from my perspective it wasn't a total bust. Far from it.

I was there. I am a newbie, having trouble with compliance because of some issues which I think are easily addressed. I was surprised that the group included - on the one hand - new people such as myself, and - on the other - some who had been using CPAP for well over a decade. I have taught at the postgraduate level, and it's difficult indeed to make a single presentation to a group that ranges from neophytes to old-timers. One way to address that range is to encourage experienced users to help the newbies - but tonight that didn't work for me. The talk among the users wasn't helpful to me except to reinforce my sense that once I have solved the fairly simple problems that prevent me from using my machine all night, the results may very well be dramatic. I expected a presentation on understanding my sleep study report, and I got it.

The presentation did help me understand the report, and it began to make sense. I was grateful for it. I can't imagine how it would be helpful to someone who already well understands the terms and numbers in a sleep study report. So I do understand your frustration, particularly when you tried to offer helpful comments and felt shut down.

I don't know enough about what's out there to have an opinion on the cost or availability of internet-capable machines, but I do know that I don't have one. And nobody else in the room admitted to having one. This was a new idea to me - and probably to the other patients. If the machine you have is of good quality, is affordable, and is covered by most insurance, please share information here.

In some cases throughout the presentation, I don't think I heard what you heard. I did hear her say (not in so many words) that increasing CPAP pressure doesn't necessarily lead to improved AHI and might actually make it worse, as was the case with the sample patient record we were looking at. And I understood her to say that a doctor needs to order changes in pressure. She said if a person's therapy isn't working, a new sleep study may be indicated; that seems a perfectly reasonable assertion to me. I didn't hear her say (maybe she did, but I didn't hear it) that the particular report we were all looking at - where a modest increase in pressure caused a deterioration in the AHI value - was a case that should be referred back to a doctor for another sleep study.

As to knowing what C-Flex is, I can't claim extensive knowledge but I'm told that C-Flex is a trademark for a technology that senses exhalation and responds to it so that the user doesn't have to exhale against pressure. However, the term C-Flex seems to be coming into use to describe a CPAP machine that has C-flex technology built into it. Respironics' website includes a paper titled "CPAP vs. C-Flex for the Treatment of Obstructive Sleep Apnea" - giving the impression that CPAP and C-Flex are competitive systems. There is a sense in which that is true: the term C-Flex can be used inclusively for a C-Flex-equipped CPAP machine, whereas in this Respironics paper the term CPAP is used to describe a machine without F-Flex technology built-in. The printouts for the sample study, as well as for my own sleep study report, have the legend, "...C-FLEX PRESSURE __ cm. H20..." I take that to mean that the sleep center was using "CPAP with C-Flex therapy enabled," which is how Respironics defines "C-Flex Therapy." Thus, they use the term C-Flex Pressure for values obtained by such a machine.

Meanwhile, I'm trying increase my own compliance, as I still believe that using CPAP will give me dramatic results. Now, if I can just get this blasted mask to fit...

Carbonman,

My respect for you as a 'doer' in he world just rocketed up 10 points (was kinda of the opinion you were a 'doer' anyway so consider you are 10 points better than where you were before which was pretty good anyway ).

Referring people here was an act of kindness and the act of a 'doer' and you were taking some risk allowing for the event you went to.

I doubt that anyone who follows up on the link will regret you being 'forward' in approaching them.

As for the story you related to us - what makes this world survive - it surely isn't the way we humans conduct our medical industries (hmmm that should have been a )

Thanks for relating this episode & bring new folk here to learn what they are willing to .

DSM

uncrafty,
If you tell us what mask and machine you use we can give you lot's of tips.
An internet capable machine is not needed, just a machine that collects and displays data, or one that collects data and allows us to read the data card. With data we can decide if we need to change a pressure and see the results of that change. C-flex also has settings of 1-3, some find that a change of c-flex settings makes a huge difference in treatment.
You also need to know that the billing code for data capable and non-data capable machines is the same.The cost to the insurance company is the same for both machines. Check out cpap.com and compare to what your insurance paid for your machine, you may be quite surprised.

Brenda

Wow Carbonman, what an experience. (Unfortunately sometimes perhaps) I agree with your stance wholeheartedly - never was one to shut up & play dead when others perhaps would. Playing the game politically not my thing really. What's that saying - "if you are not part of the solution, you're part of the problem". What the world needs is more people willing step out of their comfort zone and stand up for what they believe, whatever the forum or level.

Hard to believe they were supposed to be the industry 'experts'. Does sound like the desperation of the sleep industry to continue to hold the power balance at any cost is ongoing.

Uncrafty, welcome to a great group. Make use of them, they are very experienced, and more than willing to assist.

Mars, if you find out if there's any meetings in Australia anywhere near Sydney, I'm with you. Happy to go and either be - hopefully - pleasantly surprised and learn, or alternatively raise merry hell!!!!

uncrafty, welcome!
Thank you! for your thoughts and observations.
They are incredibly important to me and my personal cpap education.
They are also an important part of my quest for the total cpap experience.

Please don't be offended by my discription of brain-dead, clueless people.
Having been one of those people, I speak from experience and empathy.
viewtopic.php?f=1&t=41514&p=364762&#p364639

I really appreciate your perspective of the meeting.
I can see your point about speaking to a range of "neophytes to old-timers".
Excellent point.

For me, as an educated cpap user, the information that was not presented,
and information that was actually covered up, is unacceptable.
That presentation was nothing more than marketing propagada to
keep uneducated patients, uneducated, and to insure future business for the sleep ctr.

I hope you register here.
Ask your questions and become informed about your therapy.
And when some period of time has passed,
I would like you and I to have this same discussion about that meeting.
I would like for you to convince me that my assement is wrong.
I'm all ears.

All the best, it's a journey.

dsm wrote:Carbonman,

Referring people here was an act of kindness and the act of a 'doer' and you were taking some risk allowing for the event you went to.

I doubt that anyone who follows up on the link will regret you being 'forward' in approaching them.

Thanks for relating this episode & bring new folk here to learn what they are willing to .

DSM

DSM, thanks! I hope that the other people that I approached will come here.
After what I experienced last night, I'm just getting started.
If we don't take it to the streets, it's never going to change.

I recall a while back the thread that lead to your cpaptalk signature.

You are indeed a leader of the movement carboman.

What a great story. I have stayed away from those AWAKE meeting simply because I expected the exact same experience you described.

However, your clever Trojan Horse approach of slipping the cpaptalk.com web site links to the members is brilliant!

Now I have a different attitude about those local AWAKE meetings and will look into when there will be one near me.

Sisters and brothers ... a movement it is!!

uncrafty wrote: I don't know enough about what's out there to have an opinion on the cost or availability of internet-capable machines, but I do know that I don't have one. And nobody else in the room admitted to having one. This was a new idea to me - and probably to the other patients. If the machine you have is of good quality, is affordable, and is covered by most insurance, please share information here.

Meanwhile, I'm trying increase my own compliance, as I still believe that using CPAP will give me dramatic results. Now, if I can just get this blasted mask to fit...

Hi, and welcome, uncrafty. It is interesting that the misleading "internet capable" machine took root. That is not a term I have heard on here. It seems the assumption was that only doctors could or should look at the data. Data capable as we talk about here means gathering the data (usually using a smart card) from the machine and transferring it to a PC with software that is available through a limited number of sources. Because of this "doctors only" the software is not intended for patients and not supported for people other than docs or DMEs. So people aren't told about it or are actively discouraged from looking at it. In my case, I asked when I picked up my machine about data and software the tecchs told me not to "waste money on it," that I couldn't buy it, that my using would erase all the data so the doctor couldn't see it or cause them to do extensive calculations, that it wasn't important, that patients shouldn't have it. They did not encourage me to (and consequently didn't show me how to) view my nightly data on the display of my machine. They also didn't like the idea of me being able to check my settings (which of course they made a couple of mistakes on that I noticed later after getting info from this site).

When I finally saw my doctor, who actually owns the DME that provides my equipment, he told me that he did not mind at all that I had the software and liked that I was involved in my therapy. He seemed to wish that more patients would be involved in their therapy. He sighed at a couple of things I quoted his employees as saying.

In a couple of conversations with him I have been impressed that he is good with an informed patient and willing to discuss my therapy options - and very happy that he strognly recommends only data capable machines. However, I am slightly disappointed that he is not a little informed about what is available now in the marketplace and that his staff reflect that . I am even more disappointed that some people on his staff are perpetuating the "doctors (or DME) only" access to data.

There are some internet things available now, but for data to track and be informed about therapy the internet is not necessary (except maybe to get on this site). There is at least one machine that will display on the screen a code you can enter on an internet site to generate reports without buying software, but the machine needs no internet connection - you can just write down the code and enter it using any internet connected computer. It is not one of the more expensive machines on the market. Far from it.

There are many data capable machines available that fit your criteria. They are not always the most popular for some DMEs to give out, but they are certainly available and can be written into your prescription.

In regards to the mask, you are absolutely right. Wouldn't be nice to have that be talked about more strongly with new cpapers? I was told I could return the mask within 30 days, but only as a passing comment. Everyone seemed very surprised when I did return the mask and non-plussed when Iwanted to buy a second one out of my pocket in order to increase my options. It seems like there could be a better way to keep new people from being extremely frustrated in dealing issues regarding what is probably the biggest factor regarding compliance?

Anyway welcome.

It is great that a cpaptalker gave this site address out. Maybe business-type cards made with the site on it should be made and some sent with every cpap.com order. Johnny Goodman, this might be a fairly cheap way to get the site traffic increased. (And it probably wouldn't hurt cpap.com's traffic either.)

Hi, uncrafty, and welcome to the forum.

Brenda's post dot the i's and crosses the t's as to how misleading that presentation was.

1. A machine can be at a pressure of 6 cms/h2o, and have a CFLEX setting of 1 or 2 or 3. The same for a pressure of 7, 8, etc. So, a sleep center reporting you had a" CFlex pressure of x" is saying something confusing and meaningless to other professionals. And what's more, if they titrate you on "CFLEX" they seem to be trying to tie you to Respironics machines from the first step. Dreadful, because some people cannot tolerate CFLEX at all - and that is just adding more problems to the titration.
2. Data capable machines have been around for more that 5 years - having them connected to internet to leave your doc. in control is a newer invention.
3. DME's = and that presenter must be in cahoots with one - are reimbursed equally for data capable machines, and bare bones ones. So of course they'd like nothing better than selling you a cheap one.
4. Pressure-wise, there are 3 kinds of machines:
   1. Fixed pressure machines
   2. Self adjusting machines, also know as automatic machine
   3. Bilevel machine BIPAP - some of which are automatic, some of which are not.
   Nowadays, each one of those can be data capapbel-- all you need is the software and hardware to read the data - and yes, they do add to the price, but many of us have found the data priceless in making our therapy work.

I too hope you will register and join us.

O.

Carbonman,
Thank you for taking the time to attend that meeting. I found this site by a stroke of luck when I was dx'd with OSA. I am so thankful that I did. I am one of the very lucky ones that have adjusted to CPAP very easily (so far). I pause now and think what my experience would have been had I not found this site. The sleep center, the DME, the whole thing was done in a way that did not give me a choice of mask or machine, I didn't even get results of my sleep studies. Only by having read and researched on here, did I know what I had to ask for and how to interpret my CPAP data results. I was lucky also that I knew by reading on here what machine I needed, and that just happened to be the one that the DME brought out. I was glad to not have to argue with them. My titration prescription was not working for me, the ramp feature was torture, and I would have had no clue what to do if I hadn't been digging around on this site and asking questions.

I am appalled with the treatment of those of us that need CPAP.....the Doctors and DME's act as though this is so important, but yet delay treatment by sending people for more sleep studies, rather than using the data and making adjustments. They don't want us educated, they would lose control; but on the other hand, they don't have the human resources needed to handle the demand of patients that need more attention and help. They won't hire those people because they don't see the need for it and the greed is driving them. Then, from what you witnessed at the meeting, they aren't taking the time to delve into the problems and learn the machines and the possibilities of correct adjustments without sending for the expensive sleep studies. I know that there are complicated situations for some patients, and those are necessary, but even with that thought, it cries out for more people to work in this industry and take better care of those in need.

Ugh, I am upset even at the treatment I received.....I felt like cattle being herded from one place to another, with no explanation. Imagine all those others out there..........

Wow carbonman
Just makes me want to attend a local A.W.A.K.E meeting and do the same thing

[quote="carbonman"]uncrafty, welcome!
Thank you! for your thoughts and observations.
They are incredibly important to me and my personal cpap education.
They are also an important part of my quest for the total cpap experience.

**Thanks!
** I can't figure out how to get the typeface to change to bold - it just inserts the term [bold]. Any suggestions there? Or is this not WYSIWYG?

Please don't be offended by my discription of brain-dead, clueless people.
Having been one of those people, I speak from experience and empathy.
viewtopic.php?f=1&t=41514&p=364762&#p364639

**No offense taken. I admit being clueless. As to being brain-dead, it's one of the symptoms...

I really appreciate your perspective of the meeting.
I can see your point about speaking to a range of "neophytes to old-timers".
Excellent point.

**Actually I was surprised that anyone with years of experience would want to attend a forum entitled "Understanding Your Sleep Study Results." It sounds so... well... elementary, on the face of it.

For me, as an educated cpap user, the information that was not presented,
and information that was actually covered up, is unacceptable.
That presentation was nothing more than marketing propagada to
keep uneducated patients, uneducated, and to insure future business for the sleep ctr.

**I don't know enough to respond, except to say that as a neophyte I found the information helpful.

**It does sound like the sleep center is "locked in" to machines with C-Flex. That feature seems to work for me but I realize it's not for everybody.

** Maybe I didn't hear correctly, but I really thought I heard you refer to "internet capable" machines. That would explain the presenter's response. My machine is indeed "data capable" and remarks from others indicated that theirs were, too. Of course it may well be that the "professionals" don't want patients reading their own cards (or other stored data), or messing with the controls. I would be interested in how to obtain the software (and presumably a card reader? or is there a port on the machine that plugs into USB? I haven't looked). I fully intend to discuss this with my doctor, as once my mask problems are addressed I think I'll be able to provide a full night's set of data.

I hope you register here.
** I registered with the name "crafty." When I attempted to post my response to your first post in this thread, the system said "crafty" was in use. So I switched to "uncrafty" - which probably showed up as an unregistered user. We'll see how this one does.

Ask your questions and become informed about your therapy.
And when some period of time has passed,
I would like you and I to have this same discussion about that meeting.
I would like for you to convince me that my assement is wrong.
I'm all ears.
** we heard different things, through the filter of our own needs and experiences. Honestly, I got what I came for - a much clearer understanding of my sleep study results. But you have raised important questions that I very much want to pursue.

** thanks to others for your encouraging notes in this thread. I'll get back online in a while with info about my own equipment and the issues I'm having with it.

** final notes: I mentioned in last night's meeting that I was having terrible customer-service issues with my equipment provider. (Is that what you-all mean by "DME"? Durable Medical Equipment provider?) There's a lot of alphabet soup in this forum and I'm going to ask a lot of newbie questions...) I have tried being confrontational and it's not helping. I've discussed alternatives with my doctor, but there are insurance issues, contract issues, and - as I learned last night - a host of other providers in the Denver area whose customer-service records are less than sterling. Is there a "consumer reports" for these folks? For me, the main issue is addressing my health problems and, as carbonman puts it, "getting my life back." It sounds like a lot of people in this forum have a deep mistrust of the professionals - likely for good reason. But as a practical matter I've tried being confrontational/adversarial with such people and it's not a particularly effective strategy. I usually know the difference between being assertive and being confrontational. Maybe this is a whole new topic for a whole new thread, but I'd be interested in talking about dealing with doctors, vendors, and service providers in a way that gets patients what they need: not "winning an argument" but "getting their lives back." Thanks for listening!

All the best, it's a journey.

** Thank you so much!
** uncrafty (or crafty, whatever)