What can you do anyway?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Dave Hargett
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Post by Dave Hargett » Mon Feb 07, 2005 12:59 pm

At the time I tried C-flex, I talked to the Respironics rep in my area. He says that my opinion was similar to almost anyone who had been using CPAP for a while-- they found C-flex harder to use and uncomfortable. So I'm not totally alone on that issue.

First time users may find it more helpful because they never knew anything else.

I'll try to make my personal positions more clear, in case there is some perception that my comment is on behalf of the American Sleep Apnea Association.

We (the ASAA) did recently support the assignment of a separate code to APAP devices in the medicare system, but Medicare has chosen not to do so as of yet, indicating that there is not enough research evidence to justify it.

The ASAA supports all forms of treatment that have some scientific basis and proven effects. We want patients to be diagnosed and treated effectively.

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rested gal
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Post by rested gal » Mon Feb 07, 2005 2:06 pm

I started out on straight cpap for over three months, fall 2003. I was able to use it fine.

I switched to an autopap (PB 420E) in Feb. 2004. Bought it and the software online. I found autopap to be much more comfortable - varying the pressure as needed, instead of using one straight pressure at me all night.

In the early fall of 2004, I purchased a bunch of equipment from a lady who had been having success with a dental applicance (TAP II) and no longer needed her cpap supplies. In the very good low priced bunch of stuff, was her less than a year old Respironics REMstar Auto with software. That machine worked every bit as well for me as the 420E had.

In January 2005 I decided that even though I had not had difficulty breathing out against pressure with any of the three machines I had used (straight cpap, and two autopaps), I'd try the new Respironics REMstar Auto WITH C-Flex from cpap.com. That machine took the comfort I'd already been getting from autopap to a whole new level for me. I hadn't had trouble exhaling against pressure, but I sure did like the feeling of less pressure to breathe out against. Quite a difference as far as I was concerned.

Dave, you're absolutely right about different machines suiting different people. I've had four machines now that all treated me well. I've felt equally rested after using each one. So, do I really need my current autopap with C-Flex as opposed to just that first straight cpap? No. Do I need it compared to the two autopaps I had? No. Do I like the comfort I get on every exhalation from the autopap/C-Flex combo? You bet. For every person that doesn't like C-Flex when they try it - at least on today's modern machines, I'd venture a guess than many more do like C-Flex once they feel the difference.

I don't doubt that at the time you tried C-Flex and spoke to the Respironics rep, it probably was not as smooth as it is now. Nor was it combined with an autopap back then.

You're doing fine (and many other people are too) on straight cpap. You're satisfied with it and are apparently getting good treatment, so there's no reason for you to try anything else. I think that's great. That's saved you a lot of money.

As a side note, Medicare also recently decided not to reimburse for "at-home sleep studies". I think they were wrong about that too. My personal belief is that some decisions are more a reflection of effective, influential lobbying efforts for or against, than of anything scientific. I'm sure you've seen studies (some well done, some not) that come up with different findings regarding any number of issues in the sleep field.

Other than price and what insurance companies will or will not cover, I don't see any reason for a person to settle for a straight cpap machine when any of the major manufacturers' autopaps can be run in straight single pressure cpap mode if the doctor or patient finds autopap not to their liking or not effective treatment.

The patient will then have a machine that can be run either way - as a cpap or as an autopap. Very useful if a person using a single pressure that worked well for them for months begins to feel symptoms returning. Switch over to autopap, take a look at the data for a week, and one often finds that an adjustment up a notch or two of that single pressure is all that was needed.

Does that patient really need the more expensive autopap, if he's going to be running it in cpap mode all the time? No. Can money be saved in the long run (not to mention hassle for the patient) by not having to get another sleep study...by finding an optimum pressure with few nights running the machine as an autopap? In many cases, yes.

I doubt that I'd have liked autopap or C-Flex if I'd tried them back at the same time you did - in the machines of a few years back. Luckily I came to them later. But I did use straight cpap at the beginning. I got along with it fine, and know what it felt like compared to what I'm using now. Also, I particularly wanted a varying pressure machine with software so I could see for myself how my treatment was going. Bottom line, I felt good; but I still wanted to see what was happening.

Not trying to argue at all. Just looking at it from the perspective of someone who didn't need to change from straight cpap as far as how I felt in the mornings. If autopap or, now autopap with C-Flex, had not made me feel equally good, I'd have ditched them in a heartbeat. Well, actually I'd have just set the auto on straight cpap.

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wading thru the muck!
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Post by wading thru the muck! » Mon Feb 07, 2005 2:25 pm

Dave,

Your Respironics rep needs to read his own companies clinical studies on C-flex.

Two studies were conducted, the first one involving individuals that have been on cpap for at least 6 mo. with a clinically acceptable response to the therapy. Ninety percent of participants rated the comfort offered by C-flex a 4 or 5 on a scale of 5 and said they believed C-flex is a very comfortable method of trreatment. The second study was aimed at a group of highly experienced cpap users. This group gave C-flex an average rating of 7.7 on a scale of 10 and ninety percent said they would choose C-flex over standard cpap therapy.

You are certainly free to have your own opinion, but to me, it's counter-intuitive to think Respironics would take to market a piece of equipment in which the prefered response was contrary to the intended result. I doubt they could have gotten FDA approval if that was the case.
Sincerely,
wading thru the muck of the sleep study/DME/Insurance money pit!

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loonlvr
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Post by loonlvr » Mon Feb 07, 2005 6:00 pm

The one thing about sleep apnea is that the patient is not aware of it. It is usually the symtoms(sleepiness etc) or a partner that gives us a clue that there is a probelm.So what happens if they suspect you have apnea. You spend one nite hooked up to machines and THEY decide what your pressure should be. Then its set. Who says that its the best? THEY do. Why anyone would want a straight pressure machine with no software to monitor their sleep is baffiling to me. As i ve said repeatetly, we spend 1/3rd of our life on these machines. So good luck Dave. Hope all goes well for you.

Dave Hargett
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Post by Dave Hargett » Mon Feb 07, 2005 6:35 pm

wading thru the muck! wrote:Dave,


You are certainly free to have your own opinion, but to me, it's counter-intuitive to think Respironics would take to market a piece of equipment in which the prefered response was contrary to the intended result. I doubt they could have gotten FDA approval if that was the case.
As we know from Merck and Vioxx, studies can prove anything to the FDA!

Seriously, I think that rep's comment to me was purely based on the reactions he had gotten from some experienced patients in his immediate area. It was his own anecdotal comment. I did not mean to imply that Respironics thought that at all.

Dave Hargett
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Post by Dave Hargett » Mon Feb 07, 2005 7:16 pm

loonlvr wrote:The one thing about sleep apnea is that the patient is not aware of it. It is usually the symtoms(sleepiness etc) or a partner that gives us a clue that there is a probelm.So what happens if they suspect you have apnea. You spend one nite hooked up to machines and THEY decide what your pressure should be. Then its set. Who says that its the best? THEY do. Why anyone would want a straight pressure machine with no software to monitor their sleep is baffiling to me. As i ve said repeatetly, we spend 1/3rd of our life on these machines. So good luck Dave. Hope all goes well for you.
Quite often it is the spouse or partner that brings the patient in, but there are definitely patients who identify the problem in themselves on their own. And there a few intelligent physicians who recognize the symptoms that their patients tell them about and send them to the sleep center, with or without spousal recognition.

If you go into your doctor's office and have your blood pressure monitored, they decide whether you need medication or not and which medication. Most of us do not then spend a lot of time checking our own blood pressure at home, although there are some that will.

If you go in for an angiogram and they find blockages and send you straight to cardiac bypass surgery, essentially they make the decision for you based on perhaps an hour of observation in the cath lab.

These decisions are based on the best medical observations and tests that are available to them in their facilities and their training in their field, hopefully coupled with discussion with their patient on their options.

That doesn't mean that every doctor always makes a right decision. Neither does every patient. And technology comes along and updates things periodically. I have two small incisions in my leg where they took a vein for my bypass surgery; my father's leg (4 years earlier) was sliced from groin to ankle. Does that mean that my father's surgery is invalid because they didn't have the latest equipment back in 1996? No way -- he's still kicking because they gave him the care he needed.

I've been on CPAP for 10 years. I've had two machine in that time frame. I'll probably get a new machine this year. I'm about due.

Will I consider an APAP? Yes I will, given the dialogue on this board, but if I'm doing fine with CPAP, I'm equally fine with getting another CPAP. I'll take a look at all the technology and make my decision on various factors. My insurance will also help drive the decision. Like anyone else out-of-pocket funds are always short!

And let me be explicit here:

My personal opinion on which machine I prefer for myself has not ever, and will not ever, influence any decisions I make with regard to equipment recommendations at the ASAA. The ASAA is for awareness and access to care. We want patients to be diagnosed and treated effectively no matter what the form of therapy.

chrisp
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Post by chrisp » Mon Feb 07, 2005 7:23 pm

Get an Auto Dave. If you dont like it you can always run it as a straight cpap !
Now how can you beat that. And if you choose to sell it later maybe you will find a buyer .

Cheers,

Chris

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Post by Guest » Tue Feb 08, 2005 12:39 pm

Well I am going to have to register with a name soon now that I have found this CPAPtalk site. Being able to read others opinions on a topic is very helpful for me, although has left me a little confused at the same time. I was never able to locate a user group so don’t have too many opinions on this whole CPAP subject. Thanks for being out there everyone.

So ok, here is my situation. I am a new CPAP user, having started in late December 04 (Merry flippen Christmas!). I don’t remember all of the terminology but know I had 83 apneas an hour on my sleep study, which my Pulmonary Doc said was severe and that I needed a CPAP machine right away. My DME place provided me with a ResMed Lightweight S6 with heated humidifier and the Doc said needed to be set up to 13.

Due to a job change, my insurance is only good till the end of Feb so I could continue to rent my same equipment for my new full cost ($125/month) or buy something. The buyout from the DME provider wants $1695 which after looking on-line is outrages.

So now we come down to CPAP or APAP. I am not going back to my Pulmonary Doc now that I don’t have insurance, so it looks like I need to make some determinations on what to get. At first I thought just going the cheapest route (the S6 is only $325 on one of the sites out there) was the way to go, but after reading everything on this post, well now I’m not sure. I’m kinda stuck using this thing the rest of my life I guess, so I should probably invest in what works for the long haul (does anyone know which machine is the best for life expectancy?). I have gotten used to using my CPAP every night and do see the positive affects from it, but struggle with the air gaps and dry mouth every night. The humidifier is a problem too for it is either not enough or too much where water runs down my face. As someone pointed out in an earlier post on this same topic, they notice a difference in pressure when laying on their side and I notice that too.

So what is the opinion of others out there with my circumstances (keeping in mind I have to pay the full price of the machine) a CPAP or APAP?

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Liam1965
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Post by Liam1965 » Tue Feb 08, 2005 12:58 pm

Someone who's hiding their identity wrote:So what is the opinion of others out there with my circumstances (keeping in mind I have to pay the full price of the machine) a CPAP or APAP?
Well, except for the extra $100 or so, I'd say go with an APAP machine. Most, at least, can be run in CPAP mode, so if it turns out you do better with straight CPAP, you haven't harmed yourself any, except for the extra few bucks.

On the other hand, if you go CPAP and decide you need Auto, then you're out a whole new machine (unless you bought the S7 Elite from ResMed, in which case you're out like $200 for the software upgrade).

As to CFLEX, I can't decide on my opinion of it. With it turned on, it's definitely easier to breathe, but I find the little odd "puff" of pressure just before it kicks back to be off-putting, and I feel like I'm breathing too hard, because I naturally try to breathe hard enough to overcome the pressure, only to have the pressure drop, and I find myself forcing the air out of my lungs in a big WHOOSH.

But unless you're comfortable with the CPAP you've got, and think you'd be perfectly happy with it in perpetuity, probably best to spend a FEW extra bucks and have the flexibility.

(Still doesn't give you the flexibility to try the different APAP algorithms, but hey, if you could have everything, you'd never have a place to put it all.)

Liam, who thinks CFLEX makes him even MORE of a blow-hard.

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Post by Janelle » Tue Feb 08, 2005 2:16 pm

If your insurance runs until the end of the month, do this. RUN do not walk to an online store (shop around, prices vary, shipping varies). Buy what you want and send the bill to the insurance company. They will deduct what they have paid to that date on rental and pay you up to the difference between what they would pay the DME (and believe me it is not nearly what they are billing). Might as well take advantage of the insurance while you still can.

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Post by Guest » Wed Feb 09, 2005 6:20 pm

Before I RAN to buy something online, I made a call to my insurance company and they said they would not pay a portion of anything I bought and that my deal with them is simply rent to own. Oh well, thanks for the suggestion.
I did check with my DME provider and they did not have any APAP machines for me to rent. I hate to plop down $800 for an APAP when a CPAP is really hundreds less. Oh well, back to searching and deciding.
Thanks for the help.

Guest

Post by Guest » Wed Feb 09, 2005 7:02 pm

hhunt, If your insurance will run out soon you will pay your portion of a rental for the time being. Purchasing out of pocket still looks like the most cost effective option for all concerned. And you will be getting treatment now. You can purchase a plain cpap for $299. Auto for $545.

Waverly

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rested gal
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Post by rested gal » Wed Feb 09, 2005 7:37 pm

Want a specific recommendation about what machine to get, what mask, what kind of humidification? Everyone has their favorites. This is what I use and what I'd recommend to everyone newly diagnosed with OSA:

1. Respironics REMstar Auto with C-Flex and heated humidifier

Why that particular machine? That one machine can be operated in any of these four modes:

As a CPAP - one single pressure

As a CPAP with C-Flex - one single pressure, with a drop in pressure each time you exhale.

As an AUTOPAP - varies the pressure within the range you set; senses from your breathing how much pressure is actually needed to keep the throat open.

As an AUTOPAP with C-Flex - Varies the pressure as needed, with a drop in pressure each time you exhale.

The heated humidifier with that machine - Many people prefer at least a bit of warmed humidified air rather than cold air blowing into their nose or mouth. If you find you don't want any humidification at all, simply turn the humidifier off and let it be a "passive cold water" humidifier. If you don't want even that, simply connect the main air hose straight to the autopap, bypassing the humidifier chamber completely. But you will at least have a heated humidifier available if you do need it. Most do.

2. Mask that suits you - the most difficult piece of the puzzle to fit into place for comfortable, effective treatment. With that in mind, I'd suggest getting one or more of these three masks (if you are able to breathe through your nose:

a) Puritan Bennett Breeze with nasal pillows - get nasal pillows "larger" than you really think you need, "larger" will seal better without having to be crammed up inside the nostrils.

b) ResMed Mirage Activa - nasal mask (covers the nose) that for most people is unusually leakproof and comfortable - is worn with the straps almost floppy loose.

c) ResMed Swift - comes with all three sizes of nasal pillows. A noisy mask but does not cover the eyes - can wear glasses with the mask on. (Not leaky like the "Vista" mask that is touted as good for eyeglass wearers but many find to be leaky up at the top near the eyes.)

Why so many masks? I like what christinequilts said: "You don't wear the same pair of shoes every day." Having at least one or two good masks to switch between from time to time can make for a comfortable change. We need all the comfort we can get in this kind of treatment. For awhile we're trading the disruption of apneas for a new kind of disruption - all this stuff we have to wear. Disrupted sleep is disrupted sleep, no matter what the cause. It's hard enough to get used to sleeping with a mask on. Difficulty sleeping with a mask that hurts or leaks can leave a person more worn out than before treatment. The whole adjustment period can go easier if you start with a really good mask or two instead of what the DME (Durable Medical Equipment) provider usually hands you.

d) ResMed Ultra Mirage FF - full face mask. I think every cpap user should have one good full face mask in the arsenal regardless of what "regular" mask they prefer.

Why a full face mask? There will be a nights when a person has a cold or stuffy nose; absolutely can't breathe through the nose. A full face mask (covers just the nose and mouth, not the entire face) lets you breathe easily through your mouth.

3. Encore Pro software and card reader - the software is not necessary unless you want to take more control of your own treatment. You will be able to see the data from the "smart card" in the machine. See for yourself what pressures the machine used during the night (running in autopap mode or autopap with C-Flex.) See any events that happened (apneas, hypopneas, flow limitation, snores.) See when air leaks happened and what degree of leak. The software gives you a lot of information that will help you and/or your doctor decide what, if anything, needs to be changed in your treatment.

4. Aussie heated hose - not necessary but an excellent "extra" to use along with the heated humidifier for the best way possible to prevent "rainout" that can disturb sleep. Rainout is condensation when warm humidified air hits the cold plastic of a hose or mask, releasing water droplets that cause gurgling sounds in the hose or spray/drip on your face.

That sounds like a lot of equipment, but if you get all those specific things right from the start, you'll be well treated from the beginning and for years to come. You won't have to wonder, "Is the pressure they prescribed for me right?" You won't have to wonder how to deal with wakes-you-up rainout.

I'm not a doctor. I've never been in the health care field. Just a very satisfied autopap user that remembers how it was to wonder, "What machine/mask should I get?"

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loonlvr
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Post by loonlvr » Wed Feb 09, 2005 9:00 pm

Good golly missy molly rested gal. I just got the same machime, the software, and the ultra mirage. I m one happy camper I d advise everyone to get the same equipment even if they have to live poor for awhile. Its the only way to go for years to come.