CPAP Designer asks: What changes would you like to see made?

Ah, yes! The Desk Dragons. You find a good doctor, one you respect and who respects you. One who actually takes an interest in your health - and darn if he/she doesn't have a desk dragon who thinks that doctor is her personal property to protect "their" doctor from his/her evil patients!!!

Dear CPAP Designer

Being a distrustful old coot that i am, i have to question your motives such as whats in this for you, i have no proof that you are a student or whatever, (hell you could be the cpap police for all we know ha! ha!) what are you going to gain eventual $$$$ off us poor hoseheads i say do as we do and figure it out for yourself.

Dale

Darn Bert -- I thought that last bit sounded familiar!!!

Papoose - you need to find a new doc!!!!!!!!! That's an absurd situation!!!!

I've had 3 excellent doctors in the same office -- all but one have left for one reason or other -- usually personal......

The office staff is abysmal, but I'm not being seen or cared for by them.

We just work around them(wife and I have same doc -- she's an RN in the same medical system). When they gave us a song and a dance about how the hospital was the cause of all the problems (apparently not knowing wife worked in the ER at the hospital), she went to the hospital CEO/Director and asked about the issue to find out why it was a problem......needless to say, when we call now, it's yes sir, no sir, how high sir, what color sir........
But, unfortunately, it doesn't solve the overall problem!!!!

It's all a process and for the most part it takes too damned long!!!! Peoples health deteriorates further while waiting for the doctors, DME's, RT's, etc. to get off their a**'s and treat the diagnosed or suspected problem!!!!

After reading a lot of the experiences folks here have had, I feel soooooooo fortunate (though it took 7 months to get the machine after the original doc said to see the neurologist!!).....

cheers
goose

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CPAPopedia Keywords Contained In This Post (Click For Definition): DME

[quote="shippy"]Dear CPAP Designer

Being a distrustful old coot that i am, i have to question your motives such as whats in this for you, i have no proof that you are a student or whatever, (hell you could be the cpap police for all we know ha! ha!) what are you going to gain eventual $$$$ off us poor hoseheads i say do as we do and figure it out for yourself.

Dale

goose wrote:Darn Bert -- I thought that last bit sounded familiar!!!

Papoose - you need to find a new doc!!!!!!!!! That's an absurd situation!!!!

I've had 3 excellent doctors in the same office -- all but one have left for one reason or other -- usually personal......

The office staff is abysmal, but I'm not being seen or cared for by them.

We just work around them(wife and I have same doc -- she's an RN in the same medical system). When they gave us a song and a dance about how the hospital was the cause of all the problems (apparently not knowing wife worked in the ER at the hospital), she went to the hospital CEO/Director and asked about the issue to find out why it was a problem......needless to say, when we call now, it's yes sir, no sir, how high sir, what color sir........
But, unfortunately, it doesn't solve the overall problem!!!!

It's all a process and for the most part it takes too damned long!!!! Peoples health deteriorates further while waiting for the doctors, DME's, RT's, etc. to get off their a**'s and treat the diagnosed or suspected problem!!!!

After reading a lot of the experiences folks here have had, I feel soooooooo fortunate (though it took 7 months to get the machine after the original doc said to see the neurologist!!).....

cheers
goose

THANKX - Goose my wife is also a nurse BSRN with over thirty year -- Her complaint is now a days NOBODY listens to the patients & they are in a rush so they have a per concieved answer or response.

Back to the DESIGN SUBJECT if this string is still alive??
The machine manufactures make great bags to carry their equipment -but- don't make a compartment to put your MASK ??? So you end up with what looks like HILLBILLY Luggage & storage a pain........

Bert

I had been misdiagnosed with deprression for 10 years. In the beginning I was thin and athletic. Over those 10 years I became overweight and sedentary. I had started to develop some of the secondary co-morbidities like high blood pressure. One day my gp looked at my throat. I was there complaining that my recent change/increase in depression meds wasn't helping. I still couldn't get out of bed or out of my chair (these and irritibility were my primary complaints).

He said, "You have huge tonsils. I think it may be possible you have sleep apnea." Three months later I have had those tonsils out and have gotten a bad case of silent GERD under control and my pressure needs have gone down from 16/12 bipap to 10/7. I'm only 35 years old, female. My depression evaporated and I weaned off of anti-depressants.

My titration was annoying because it was like a bad hotel with thin walls and stingy with the AC. I could hear the tech with the other patient. A man. Whome I had to share a bathroom with. I find that unacceptable. I did a split study. Nothing like being groggy and having a previously-never-before-seen mask strapped to you in the dark in the middle of the night.

My sleep doc doesn't even have a smart card reader or give a flying crap about my data. That is also unacceptable.

Like many others said I will drive home a few points:

NO led lights are necessary. Use a braille system if necessary. I rarely punch any of the buttons anyway.

Battery backup for power outtages needs to be addressed.

Exhalation ports need to be in hard plastic to make the sound softer. Soft masks are louder.

Headgear materials and so forth. I love my swift but hate the headgear. A plastic buckle digs into the back of my head each night. The "swoosh" on the side of it that touches the face is abrasive and is causing me to develop acne where it touches--and yes I clean it frequently.

Make masks for different facial geometries. Due to the nature of having a receded chin contributing to smaller airways, many of us here have receded chins. There needs to be full face masks designed to accomodate this! I cannot successfully wear any one on the market now. Having the lower jaw pushed back in the plane of the face requires tremendous pressure on the nose or whatever the upper limit is on the mask (liberty= top lip). Pain is not a facilitator of sleep. Deep welts and sores on the nose are not going to contribute to compliance!

So, this leaves me in the category of having to wear a nasal mask or pillows or prongs. But there is nothing on the market to address mouth leaks. This is something that really needs to be addressed. People should not have to tape their mouths shut in order to receive proper therapy. But there are many who do because they are out of options, like I am.

I CANNOT BELIEVE how many times I have been told that taping is crazy and that no one should do it because it is dangerous. Where is the ALTERNATIVE?

Check out the DIY mouthguard thread for more discussion of the above topic and a prototype design that other lab ratters figured out and many of us here copy.

viewtopic.php?p=209429#209429

Why do we use humor to help us with this affliction?

Because there is no one out there to help us. We are isolated and alone. There are few stories here of great doctors or sleep studies or RT's or DME's. This is like gallow's humor. We are bound together in our sameness of experience. If we didn't laugh, we would cry and no one wants that.

That is my opinion.

Jen

Well said, Jen. And even at that you weren't able to touch on all that is wrong w/the sleep profession and sleep professionals much less the equipment.

1. Improve the sleep doctors - too many have jumped on the money bandwagon
2. Improve the sleep techs
3. Improve the evaluation and titration scorers
4. Improve sleep lab conditions - including bathrooms & showering facilities
5. Improve DME RTs knowledge of equipment and sleep apnea problems
6. Improve DME service
7. Improve DME knowledge of their equipment and supplies
8. Improve insurance coverage
9. Improve masks
10. Improve mask availabililty
11. Make data available to patients
12. Recognize patients are reasonably intelligent individuals
13. Respect for patients and their needs by all in the sleep profession

They make custom fit mouthguards for football and other sports, custom insoles for shoes, why not custom masks? It fits the medical profession model. It will take longer, require a custom fitting, cost more. Why haven't the DMEs come up with this? They could require three more doctor visits, maybe another sleep study, it is all good.
It would be worth it for a mask that fits.

Daddysaur wrote:why not custom masks?

I don't know what the situation is in the US, but there is at least one custom CPAP mask maker here in Australia.

See.... http://www.sleepapneamasks.com.au/

Cheers,

Bill

socknitster wrote: Why do we use humor to help us with this affliction?

Because there is no one out there to help us. We are isolated and alone. There are few stories here of great doctors or sleep studies or RT's or DME's. This is like gallow's humor. We are bound together in our sameness of experience. If we didn't laugh, we would cry and no one wants that.

That is my opinion.

Jen

Well put --- Not JUST your opinion..
Just received a new Goodknight 420E Auto CPAP Machine from our host and it was shipped overnight {great job - It replaces the one that was auto shuting off?} THANKS!

The point I wanted to make is the new Goodknight 420E Auto CPAP Machine dose NOT have the glowing dam blue lights and the case is big enough to carry a mask and BP cuff / oximiter - extra cords ect.
So it can be done...................
Software loaded so easy my wife could of done it!
Bert

Yes, Bill, I was fascinated when I read about those customized masks. BUT - one has to go to Australia to be fitted and the COST - $2000 as I remember it. I would LOVE to make the trip to Australia, something hubby, daughter and I have wanted to go for many years - but - by the time I traveled to Oz I wouldn't be able to afford the mask anyway! *sigh*

At the time I visited that website there were two versions of a customized mask. I really liked the lesser of the two. The other seemed just a bit too much mask for my liking. I sure would have liked to try the one that appealed to me ....*sigh*

I'd like my machine to dispense beer.

No, no! Beer is NOT good for apnea free sleep!

For me, a new user, keep in mind I have not read this entire thread, which may include some of my thoughts -

I would like to see a "Ramp" button or a way to turn the ramp on near the mask end of the hose; without having to grope around for the machine. I can find my mouth & nose with my eyes closed, just not the machine

A small footprint is important.

The button lights on at night don't bother me cuz I close me eyes. But a display that can be read in the dark would be useful. An on/off feature may help others who don't want illumination. I like to know what pressure I am at when I get up (morning or nite).

A better (more useful) user interface:
The display should show recent data, (maybe up to a week or a month); which is currently only available on the smart card. The card can be retained for transporting data to the doc, dme or long term storage (pc). But nightly events, pressure, leaks, duration, even respiration rate should be available to the user without having to perform any vodoo. Maybe even a USB connector?

I guess a combo machine is currently avail:
meaning you can turn auto-pap into straight cpap. Maybe, A straight cpap that can ONLY be programmed by the dme should be dirt cheap. But an auto machine should be the standard not the exception.

As for a custom mask:
This is the hard part. I think the face is like fingerprints; everyones is slightly different. In fact, I think the contour of my face changes after I secure the mask for take-off! My press. is 17cm and I feel my cheeks deform when getting suited up and prob. change again after I fall to sleep. Then what about weight loss/gain?
Maybe just a better sealing mask?

Oh maybe a replaceable gel battery? But that would increase the weight. Just thinking about a/c power surge & spike protection. Something that is versatile but durable. For travel or power outages?

Of course, the more bells & whistles you put on something the more complicated it would be to get it working. So that IS the other side.

Personally, I don't think I would have a problem with something complicated but as we get older & technology changes, well it can get overwhelming. Thus retaining the dme programmable units may be important. Units that can be changed or programmed over a phone line may also be useful.

Maybe having an optional input to check/record blood oxygen levels would be helpful?

Those are my thoughts for now. Hope this brain storming event is helpful for some designer or manufacturer, even if s/he is going to make money at it. We would benefit from any improvements.

HTH,
GumbyCT

I had a whole list worked out but then I read Jen's post... so no point in saying all the same again but with less eloquence. Jen really hit pretty much every point I could think of....

About the only thing I can think to add is that for what these masks cost they ought to be a tad more durable than they are. OK many masks hold up fine but unfortunately one of my current favorites doesn't. There are many things I like about the Mirage Liberty... but... after only a couple of nights the quick disconnect elbow broke. I had a choice of forking over another $26 for a new elbow or trying to fix it myself. I chose to reinforce it with a strip cut off a heavy tourniquet, and it has worked well enough since. But my point is that a mask costing $209 (out of my pocket no less) shouldn't start breaking within 3 or 4 nights.

And though it has been said a thousand times... my single biggest irritation with CPAP manufacturers is their obssessive need to keep us in the dark. It's OUR therapy. It's up to US to make it work. The sleep professionals and insurance companies make it hard enough to get successful treatment. We need the data necessary to make intelligent decisions about the quality of our therapy. Even if you are one of the few blessed with a good doctor, etc. the data still helps you to have productive conversations with your doctor.

Without knowledge we're all bumbling around blind hoping someone will show enough interest to guide us out of the maze of sleep apnea. Throw me a dang flashlight and I'll get myself out!