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

Simplest headgear for masks possible.
I have always wanted a remote control for my machine-that way I can turn it on after I've gotten into bed and under the blankies!!

[quote="CPAPDesigner"]Incredible.
I have begun to compile your thoughts.
I have broken the process down into 12 or so steps.
And I have begun to place your comments in the appropriate step.

But i have notices most of your comments have been related to the sleep evaluation, machine, mask and DME and Insurance companies.
Could you all comment on your initial experiences. Perhaps how you became aware, or the visit to the Doctor who might have sent you to the sleep study. How well educated was he/she on the topic. Did they educate you at all.
How were you educated on the topic? Sites such as this? Through Sleep technicians? Other?

Tell me more about how you enrolled your Significant Other into the process. How have they reacted. Supportive?

Humor seems to surround this topic, despite the fact it is a medical condition. Is this just the easiest way of dealing with the situation.
Everyone on cpaptalk.com seems to have such a great sense of humor about the situation. Explain this phenomenon a bit to me.

thanks again....KEEP POSTING. I AM READING and COMPILING!

dieselgal wrote:I am not sure I see how this pertains to the design of equipment? Maybe I didn't understand the thread I thought you were asking what we needed or wanted out of our equipment because you were a Designer.

You need to read/re-read his first post a little more closely.

CPAPDesigner wrote:I am design student who is looking to redesign CPAP machines and equipment.

He doesn't say he's working for anybody that's involved in this industry or has any intentions of making anything happen.
He's a "student".....probably working a thesis.

Den

Good question dieselgal...
I understand it might seem unrelated from the design of CPAP equipment.
But in reality it isn't. I could be in a position to not only dictate the physical design but also the entire experience. If I were to design the box, or the mask in a vaccuum without understanding of what your went through in the entire process it would be irresponsible. It gives me further insight when you relay thoughts on nearby topics.
Your bedmate can be affected as much as you are by the noise of a machine, or the light given off by a display or LED. Knowing their position is important.
Also sleeping and rest are very personal vulnerable times. So emotions play a very large role. Is the humor a cover for embarassment? Or actually good natured humor. Could a design play off of humor your bring to the table. Celebrate rather than hide away embarassed.
Just my early thoughts.
Thank you again

I am a student. Yet my project is sponsored by a manufacturer. My findings and final designs will be presented to lead designers and engineers. Prototypes will likely be made. My work will very much reach the very people you hope it will reach.

I didnt know diddley-squat about sleep apnea. What I DID know was that I hadn't been sleeping for beans since a whiplash. My family doctor had died and I was doctor shopping in the middle of all this. Having had a real life Marcus Welby for a family doctor and having had a lot of experience at Mayo Clinic in Rochester, MN w/parents, step parent, grandparent and hubby plus being Dx'd there for Crohn's disease myself I KNEW what a GOOD doctor was and was not willing to tolerate anything less.

I was able to see a sleep neurologist as I suspected neurological problems from the whiplash were the cause of my lousy sleep. But she diddled around with Desyrel, Klonopin, neuropsychological testing, etc., etc. so I finally just said to heck w/it and managed to talk my way into a sleep study at our local hospital's sleep lab. (My insurance didn't insist on a referral or I talked a good enough story the hospital just took my word for it as a referral when I gave them the name of a doctor to send the results to).

I didn't get any real education on sleep apnea, nor even much information other than you need a CPAP and a local DME calling me w/my supplies. Two and a half months or so of fighting w/a mask (I adjusted to the mild pressure okay) I went to the local DME to ask about a more comfortable mask. They said my insurance wouldn't pay for another mask and that I'd have to pay for a new one myself (this was 1998 or so). I returned the mask and equipment telling them in no uncertain terms what they could do with them. My insurance had NEVER refused to pay for ANYTHING up to that point in time so I figured that local DME for a liar. (I wasn't THAT far off as it turned out). It never occurred to me to contact the hospital sleep lab about the problems I was having w/the mask.

Do you see a lack of education and communication here??

So I struggled for the next 8 years or so. During this time I was Dx'd w/COPD. Eventually I made an appointment w/a pulmonologist I had met once and liked. He was not just a pulmonology and critical care doctor but also a sleep specialist. I went to him for the COPD but he recommended a sleep study. I was less than impressed but since I hadn't been sleeping for beans for so many years I agreed to the sleep evaluation. The evaluation indicated mild sleep apnea and a titration was recommended but the scheduling fell during my annual trek out of town so I put it off. I wasn't impressed w/the dictated results (written by another sleep pulmo, not the one I had seen) at no time had I indicated I had problems staying awake whilst driving and I sure as h*ll didn't need to lose weight at 5'4" and 110 pounds!!!

When I got back from my trip I didn't call and reschedule the appointment w/the sleep pulmo I liked OR the titration study. Instead I asked my family doctor to script an overnight oximetry for the COPD. That resulted in my being scripted 2L of 02 overnight. Eventually the sleep pulmo called me and asked if and when I wanted to do the titration as the evaulation study indicated. I told him that I had opted to go w/2L of 02 overnight instead. He said he was glad I had opted to do something for my COPD and sleep but suggested that it would be wise for me to call him back after I had been on the 02 overnight for three solid months and he would script an overnight oximetry to make sure that the 02 was sufficient. I agreed to do so. Meanwhile, he suggested and scripted an EEG, PFT and ABGs. Which I also agreed to. NOW he was acting like a pulmo rather than a sleep pulmo!! Which I had made clear from the get go was WHY I had made the initial appointment w/him so many months previous.

The overnight oximetry indicated I was still having desats tho doing much better than prior to the 02. Meanwhile I had found cpaptalk and the apneasupport forums and was starting to get an education on sleep apnea. The rest is pretty much history. The sleep titration went badly but that wasn't the fault of the sleep lab, I just didn't sleep enough and had to do a second titration at which I also slept badly. I had a great sleep tech, an even greater sleep lab manager who really knows her stuff and does the scoring and a good sleep pulmo as well.

All the problems I encountered after starting CPAP can be laid pretty much directly to the local DME supplier. The SAME ONE from years ago!! They hadn't improved thru the years at all. Their DME is less than truthful, didn't know her equipment (or was darn good at playing dumb), their mask exchange was "less than desirable" to put it politely, as for service? What service? She even managed to sabatage the loan of an autoPAP scripted by my sleep pulmo. It took 3 weeks to get a mask cushion, didn't have, couldn't find a mask part that was needed (the DME's EMT found the mask part needed). She couldn't or wouldn't provide a humidifier, much less a heated humidifier. ......

My sleep lab manager, she who also does the sleep study scoring, is skilled at mask fitting and knows how to do it right. I sure can't say the same for the DME's RT!!! In addition to which the DME doesn't provide the proper facilities and equipment for her to do so if she did know how (which she doesn't).

By the time I was able to determine that I could go to another local DME I was too far into the capped rental for the CPAP but, bless my 02 DME, they were understanding when I made it clear how much I hated my CPAP DME and they were willing to take over my CPAP supplies and masks. Thanks to them I was able to try several masks and I quickly found the one that works for me, the Respironics Simplicity.

Nov 9th I am out from under the capped rental w/the sheister DME and my Resmed S8 Elite will be mine (my sleep lab made sure I got the Elite, not some bare-bones, compliance data only, CPAP). My sleep lab has the Resmed and the Respironics software. As does my 02 DME. My sleep lab manager is available to help w/any problems when my sleep pulmo isn't (he's only at the lab every 3rd week and I prefer to work w/him instead of the other two). They ENCOURAGE me to contact them w/any problems.

The sheister DME supplier covers a 3 state area. My good 02 DME supplier only covers about 3/4 of our state. But they are far and away MUCH MORE SERVICE oriented, a pleasure to work with and a just a phone call away. They deliver the same or next day. And as an added bonus they are closer to my house so that I often just drop in for supplies and pick them up myself. No appointment needed a few days away like w/the sheister DME.

I failed to mention, a month or so after the auto loaner and slight raise in CPAP pressure an overnight oximetry indicated I needed the 2L of 02 supplementation as well as the increased pressure.

[quote="Anonymous"]Good question dieselgal...
I understand it might seem unrelated from the design of CPAP equipment.
But in reality it isn't. I could be in a position to not only dictate the physical design but also the entire experience. If I were to design the box, or the mask in a vaccuum without understanding of what your went through in the entire process it would be irresponsible. It gives me further insight when you relay thoughts on nearby topics.
Your bedmate can be affected as much as you are by the noise of a machine, or the light given off by a display or LED. Knowing their position is important.
Also sleeping and rest are very personal vulnerable times. So emotions play a very large role. Is the humor a cover for embarassment? Or actually good natured humor. Could a design play off of humor your bring to the table. Celebrate rather than hide away embarassed.
Just my early thoughts.
Thank you again

The very basics start w/a sleep doctor who really is interested in SLEEP PROBLEMS, not just sleep apnea but all forms of sleep disturbance.

Since the majority of sleep problems do involve sleep apnea the sleep doctors should also be familiar w/the capabilities of the various xPAP machines.

Sleep doctors should ensure that the sleep apnea patients receive ONLY a FULLY DATA CAPABLE xPAP unless no insurance, poor insurance and patient financial circumstances prevent that. And they should be ready to go to bat for their patients to see to it that they do get a FULLY DATA CAPABLE xPAP whenever possible.

Sleep doctors or their staff should be ready, willing and able to adequately educate and inform their patients and be ready, willing and able to follow up their patients, ASKING if there are any problems and supplying the necessary support.

Then come the DME suppliers. Again, their RTs should know the equipment they provide. They should know the software for the various brands. They should have access to the software for the various brands. They should provide fully data capable xPAPs for all but the most financially underinsured patients. They should be truthful, COMPLETELY truthful, with the patients. They should followup w/their patients. ASK if there are any problems and if there are help to get them resolved, either thru their own office or thru the sleep lab/doctor. They should understand that it can sometimes take up to 2 weeks to realize that a mask leaks too much, causes sore spots or a bruised feeling at the bridge of the nose. They should know how to properly fit a mask and should be provided w/the facilities and equipment to do so.

Sleep lab, sleep doctor and DME suppliers must understand that despite how much education they try to provide to their patients it is a LOT to absorb in the limited time available and be willing to reiterate information, repeatedly if necessary, until the patient does understand and retain.

Instead of being antagonistic to these sleep forums and the information provided they should try to work with their patients to utilize the forums and to help patients realize that not everything they read is gospel but rather shared experiences that may or may not apply to that patient. They should recommend the better apnea forums to their patients. Heck, it would lighten their load considerably to do so!

Anonymous wrote:I am a student. Yet my project is sponsored by a manufacturer. My findings and final designs will be presented to lead designers and engineers. Prototypes will likely be made. My work will very much reach the very people you hope it will reach.

Nothing personal here, but this is a scary thought, it is how we ended up with the current mostly dysfunctional M series Remstars.

have it designed by someone who does not have OSA and/or has never used therapy before design your next machine, it is how we patients ended up with a machine that:

1. Uses high-tech BLUE LED's that light up the whole bedroom at night. Complete opposite of what research studies show for ideal sleeping conditions.

2. Design a machine with the air delivery port coming out the back towards the bedroom wall requiring a restrictive 90-degree elbow to make it functional. Then when you find the swivel elbow leaks moisture, remove that elbow from the machine completely so you don't get sued for water damaged furniture.

3. Design it with a LCD display that you cannot see in the dark, then cover it up with a solid cover and leave the button LIGHTS exposed.

4. Make the machine very small, then design the humidifier so it sits along the side of the machine for even a larger footprint than the model it was to replace.

Hopefully, from your presence here you won't make those same mistakes so you are already ahead of the game.

By the way: I always thought Off meant Off. So WHY when I turn my Resmed S8 Elite OFF, do I walk in the bedroom later and the *$%^ button lights are on? Do you have ANY idea of how many times I turned the *$#% Elite ON in an attempt to turn the *$^% lights OFF??? Now I'm wise to the *&$% thing and ignore the lights. But .... WHY?

OFF means OFF according to the dictionary! Ever read it? The definition of OFF, I mean.

Snoredog, can I add a #5?

Why not design a machine that we can claim is so much lighter than the others, for travel etc. Great adverising gimmick. Then we add a separate power supply with a gaggle of wires that get tangled in everything. And make sure we don't mention that the M-Series PLUS power supply actually weighs more than the other one???

You ask how & why we got started........... Each has a story -- the real point is we were put throw a night from hell then ask to make decisions and pick equipment "right after some body has proven we had lack of sleep and impaired memory problems"??? All so DME's, Insurance Companies, and some Doctors can make more $$$ before we learn....... How many FAIL to get in our position also found on this forum ????? -- Stop treating your patients/clients/customers like they're morons. (Personally, I don't really have that problem, but I know there is an unacceptable number of folks out here that deal with less than acceptable performance from their DME/Insurance Company/Doctors).....
Bert

SleeplessinCLE wrote:Why not design a machine that uses the little oxygen cannulas? Then there's no fitting of masks, no bruising, no headgear, and we'd be able to read, talk, watch t.v., and roll over.
<snip>

The Oxygen canulas only need to place oxygen into the air in stream, then have no requirement to inflate someone's airway which is what xPAP needs to do.

Canulas are not designed to operate at pressures that xPAPs do

Cheers D

Using the CPAP (with all its discomforts) has actually been the BEST part of my sleep apnea experience. The doctors have been the worst. It took five years of complaining before my primary doctor ordered a sleep study. Even then, he insisted I didn't have sleep apnea -- the study was just to shut me up! Apparently, I didn't fit the profile, and he attributed my complaints to normal aging, menopause, and "hypervigilance."

My initial sleep study indicated severe OSA, but my doctor waited six months before ordering a follow-up titration study. After that, it took him another six months to write a prescription for CPAP. Altogether, it took six years from complaint to treatment.

My primary complaint was that I was awakening at least a dozen times a night. After five months of CPAP therapy, I wake up only about 6 times per night. I fall asleep immediately but can't sleep longer than 90 minutes. I am disappointed because I expected more restful sleep. When I last saw my primary doctor, he was unable to answer my questions about sleep apnea, so he referred me to the pulmonologist who interpreted both my studies. This doctor did nothing but order pulmonary function tests, the results of which were "consistent with sleep apnea." I was also told that nothing could be done to alleviate my fragmented sleep, so I should just get used to it.

I strongly recommend that you invite a few doctors to your presentation, and make them aware that they are big part of the obstructive sleep apnea problem.

Papoose,

It sounds like you need a new doctor!

You can shop for doctor's just like cars. You need to find one that you can trust, and that listens to you. It's not supposed to be an adversarial relationship (you leave that for the office staff... a whole other issue for me, but I have left decent dr's if they're staff drove me too far over the edge).