Support meeting last night

[Tired Linda]

I went to my first quarterly "support" meeting last night, which was put on by the hospitals/sleep labs in the area. There were about 100 people in attendance. There were drawings for masks and a door prize. The refreshments were awesome. There were a couple of equipment reps there. The speaker was from a local DME (who also used a CPAP).

I left stunned and feeling sick. I truly felt sorry for some of the people asking questions, because they obviously had been handed a machine and were told to use it with very little or no education or support. The topic was cleaning, replacement of supplies, and travel.

The speaker stressed the need for the use of distilled water, and when asked why and what "distilled" meant, could not answer. (answered by 3 or 4 in the crowd)

Of course, the question arose as to whether CPAP equipment is considered a carry on in an airplane. Could not answer. (answered by 3 or 4 in the crowd) AND speaker travels, but apparently he crams everything into one carry on bag, probably because he didn't know the answer. Absolutely nothing about making sure to stay with your machine while it is going thru security, or the fact that we have the right to request fresh gloves when security handles it, etc. To his credit, though, he did suggest obtaining a copy of your prescription before traveling, and a lot of people in the crowd were amazed that you could just call the doc and get a copy.

A question came up about using the ramp, and when he started the speech "that's why we lock you out, only your doctor and DME know and can change your settings" I sort of tuned out, mostly to save whatever sanity I had left.

As he talked about replacement of machines and parts, he put a chart (Medicare guidelines) on the screen. I'm still wondering about the woman who asked what she needed to do to get her machine replaced at the end of 3 or 5 years...instead of telling her it depended on her insurance coverage, the doctor's recommendation and probably another sleep study, he gave some convoluted answer that made my head spin. She asked a few more questions in an effort to get it clarified...I started listening to the guy mumbling in front of me....but finally heard "doctor and sleep study", so hopefully she got put on the right track.

Fortunately, about that time, the meeting was over. I knew there was a problem with the education/use of CPAP equipment, but if what I saw among the 100 or so people present is representative of any sort of the xPAP population, it is by far worse than anything I could possibly have imagined. Sad, indeed. That doesn't even include my discussion with a ResMed rep, which may be another thread.

[chunkyfrog]

At last 'support group' meeting (a couple of weeks ago); I casually mentioned something about my S9 Elite to a competing DME's rep.
Apparently, this company carries several brands and the ResMed rep told him the S9's weren't even out yet.
He was stunned when I told him I'd had mine since April. Love to be a fly on the wall. with him on the phone the next day!

[Sillyme]

I left stunned and feeling sick. I truly felt sorry for some of the people asking questions, because they obviously had been handed a machine and were told to use it with very little or no education or support.

From my experience, the majority of people don't want the details or personal control. How did the people on this board get educated? They went online and looked for information. The fact that these people actually went to a meeting means some of them may just need a little direction or are plain intimidated. Maybe we should go to these meetings and hand out flyers with usefull links (like this one). All you can do is lead the horse to water.

[DoriC]

Welcome to the world of sleep apnea! Not surprising but very sad. I'm glad you enjoyed the refreshments! I think when some folks go to their meetings they quietly hand out slips of paper with this website written on it.

[chunkyfrog]

I SO wanted to do just that!
I just can't wrap my mind around the idea that saddling folks with equipment that is insufficient for their needs; and without the help needed to ensure they can and will USE it--isn't illegal; or at least definable as a tort--anybody a lawyer, here?

[Breathe Jimbo]

It resembles a failure to obtain informed consent, but not really.

[Slartybartfast]

From my experience, the majority of people don't want the details or personal control.

I think you're right. A lot of people are too sick, too debilitated, too old, or just too passive to take the time to proactively seek out the information that is freely available here. When I was venting about the hoops I had to jump through to get the CPAP I wanted, and not the one the sleep tech wanted, my RN-wife told me that from her experince, people with my attitude are out on the fringe; most people are happy to unquestioningly follow what their doctor tells them to do. The concept of Doing It Yerself doesn't extend to the realm of healthcare for most people.

[elena88]

I know its shocking, but the more people I found out I knew who had sleep apnea, they didnt have the slightest interest in researching it..

Even if it wasnt working!

Most of them did not know what brand of machine they had, their pressure, and no way did they want to know how to find out data.

The had no idea what their ahi was, anything about their sleep study results, and most didnt know if they were mild, moderate or severe!

It just floored me! One guy wears his fifteen minutes every night while he is awake before he goes to bed.. then he takes it off..
and he is severe!

another guy wears his a couple nights a week when his wife tells him he is snoring..

another guy has been wearing it ten years, on his second machine, and he doesnt have a clue if its working or not, and he a college professor..
doesnt know a think about what it does, how it works, and could care less.

I think we are NOT the norm..

[DoriC]

Reminds me of the time we were in the DME office waiting for a new replacement mask and this hotshot exec-type was on his phone giving intricate instructions about something to his assistant. When he finished his call we started talking and he showed me the mask he was using for 8 months with duct tape holding the forehead bracket together. It broke 3wks after he started cpap and he was here now "hoping" he could get it replaced. He didn't know the name of the mask but it looked like a ComfortGelFF to me. He also didn't know the name of his machine or what pressure he was using, and didn't feel any better than pre-cpap. He was "thinking" about making a followup appt with his Dr. I was just getting ready to "educate" him a bit when they called him into the back room. I've always wondered what happened to that guy.

[Muse-Inc]

...I was just getting ready to "educate" him a bit when they called him into the back room...

Business card with the name of this website & your avatar name or real name & phone number...easy to hand out, quick too. Could add "largest apnea peer-to-peer mentoring/support group on the 'net" or some such. I admit I jump in like a zealot whenever I hear someone who needs help getting this therapy working or complaining about symptoms that might be caused by apnea -- there're too many undiagnosed and ignorant who could be helped. I figure my part is to pass along the info I've learned here...each one save one and all that.

[Tired Linda]

Business card with the name of this website & your avatar name or real name & phone number...easy to hand out, quick too. Could add "largest apnea peer-to-peer mentoring/support group on the 'net" or some such. I admit I jump in like a zealot whenever I hear someone who needs help getting this therapy working or complaining about symptoms that might be caused by apnea -- there's too many undiagnosed and ignorant who could be helped. I figure my part is to pass along the info I've learned here...each one save one and all that.

Muse, great idea. Cheap and easy, too.

[Sillyme]

I think we are NOT the norm..

And we're Troublemakers

[elena88]

My last visit to the sleep doc office, and this poor guy was getting nailed with a sleep study.. he made the appt, we started chatting..

he asked me if I had already had one, I told him I had, but there was a huge learning curve.. so I wrote down this site on a piece of a paper
and handed it to him.. HE refused to take it..

He walked away, and said he wasnt "into that stuff"

what stuff? I just said it was a forum where you can find all the answers you could possible want about apnea and cpaps..

are some people AFRAID OF INFORMATION OR WHAT?

[DoriC]

Muse, great idea about the business cards, that's someone I might have helped if I had a card to hand him as he left the room. I don't know why that encounter has always stayed with me,I guess it was the picture of this high-powered, successful person holding a broken mask in his hand.

[Junebug999]

WOW.....that was amazing....and but for accidently finding this website I would have been one of the crowd....not knowing what the heck was going on, leaving it up to DME (who told me this Intellipap was not data capable) among other suspected misleading statments, and leaving it up to sleep doc who will not return my call......

I do think there are some patients who just don't inquire about things though, but none of us are that kind, are we?

Thanks for reporting on the support group meeting Tired Linda. I was considering joining one, but I think I can't until I feel much better.