The total cpap experience continues

Crafty,

Welcome to the forum. Hopefully, more of the others will make it here, too.


Den

Carbonman,

I have also been attending AWAKE meetings locally for about 8 months - total of four meetings. There are two other cpaptalk members who attend these meetings.

We have the same experience as you. Most of the attendees are just about totally in the dark about their CPAP therapy and the medical professionals sponsoring and presenting at the meetings do not want to hear about patients reading and interpreting their own data.

We have tried to patiently pass the word around about controlling your own therapy. There are a couple of good ways to do this. The medical professionals have been working all day and often are eager to go home after the meeting. If approached, a few of the patients will hang around and we can "preach the gospel" without interference from the medical professionals.

One of the cpaptalk members and I stayed a long time after the last meeting just talking between the two of us. Before the meeting had broken up, I wrote cpaptalk.com on the board (without permission). After the meeting the other cpaptalk member commented how little people know if they are not members here. He concluded the best (and maybe only) thing we can do at the meetings is get people to become active in cpaptalk.com.

From me, the medical group sponsoring the meetings has heard that they need to adopt the "diabetes model": the patient is educated, takes his own blood-glucose readings, adjusts his insulin or drugs, adjusts his diet and exercise, and routinely reports in to the clinic to discuss how he is doing. They will briefly hear that from me at every meeting. I would like to avoid getting thrown out because this would thwart my first goal to spread the word about cpaptalk.com.

I need to talk to the admins about some of those cpaptalk brochures to hand out at every meeting.

Spread the word. The next generation needs to come along quicker than we did.

Best regards,

Oh another thing at the last meeting that burned me. When I spoke in the meeting about software for the patient, the medical professional running the meeting said if your pressure is not correct you need to have another PSG because your machines are not as accurate as the sensitive sleep lab equipment.

My retort was to ask her how much a PSG cost. She did not know but said probably about $2800. I was cut off before I could state that a good CPAP machine, card reader and software could be purchased for permanent use for about $700.

I think when this comes up again, I will squeeze in a different argument:

"For measuring and titrating CPAP pressure, my home system is more accurate than your sleep lab equipment. Your sleep lab only has one night to get it right and the patient is sleeping in a strange way in a strange environment. He is unlikely to sleep anything nearly like he does at home.

With a CPAP and software at home, the patient is sleeping the way he usually does and he has many nights over which to diagnose and titrate. A home titration is more accurate! Do you want me to tell you the bloody miserable story of the three nights I spent in sleep labs and how they totally botched the titrations and how I eventually got it right at home with patient software?" (I hope I can leave the "you SOBS" out of my comments. Actually that lady running the meeting is a sweetheart and I would not mind taking her home with me to demonstrate my equipment in the bedroom. But she better not tell me how to manage my CPAP therapy!)

I have been thinking a lot the past two days about being an educated cpap user.
I do believe that it does, in fact, carry a responsibility.
Especially in the face of the "formal" support structure that is out there.

rooster wrote: Spread the word. The next generation needs to come along quicker than we did.
Best regards,

If it is ever going to change, this is the method of change.
We have to take the information and the fight to them.

Imagine, 50 people a day...yea...I said 50 people a day,
walk'n into their DME, sit'n down and changing their pressure,
and walk'n out.

I just remembered that I wanted to relate to you all a conversation I had last week when we were waiting at the DME for our new mask. There was a gentleman waiting also in nice business attire apparently just finishing giving instructions to his secretary/assistant on his cellphone so I gathered he was an executive of some kind. He asked us why we were there, I said "to pick up our new replacement mask", he said, "Oh, I'm only on cpap 9months, I think I have to wait a year or so for a new one, I'm still using the first one they gave me and I hate it". (Didn't know the name of his mask). I then asked him why he was there, he said to pick up his machine that he had brought in the week before for "repair". It was making "strange noises". I asked him what kind of machine he had, he didn't know, and didn't know his pressure setting and never saw a copy of his sleep study done 1 yr ago. I swear I'm not making this up! I was just about to give him a few quick tips and steer him to cpaptalk but they called him in. We even waited a few minutes after we were done hoping I'd see him again but when I asked the receptionist about him she said he had already left. I can't stop thinking about him.

DoriC wrote: ......... I can't stop thinking about him.

Dori,

Well you leave me mystified.

Are you thinking about the "poor clueless patient" ?

Or are you thinking about the "gentleman in the nice business attire" ?

carbonman wrote:........Imagine, 50 people a day...yea...I said 50 people a day,
walk'n into their DME, sit'n down and changing their pressure,
and walk'n out.

I also have big trouble to escape the sixties!

My darn kids have more hours of music in their IPODs than I could dream about. But they don't know the good stuff.

carbonman wrote: . . . JNK, you sick, twisted, guitar play'n, mask wear'n freak.....
I love this place, too.

You know, speaking of the cpap experience, we, you and me,
we're coming up on 1 year. I know I'm not the same person that
stumbled in here, I don't think you are either.
Man, are we a couple of lucky so and so's.

So.....where is the party going to be??? . . .

This is a milestone party year for me in three ways--June 18 will mark one year on PAP, September will mark 25 years in NYC, and November will mark 20 years of marriage. On June 18 my wife and I will be on the road to NC, then later in the year we go on a cruise and then a trip to Jamaica, where my wife is from originally.

Remember when I posted "Let's all of us midyear08-ers vow to be there for each other in the coming years!"? ( viewtopic.php?f=1&t=33601#p285450 ) This first year has sure flown by, hasn't it? But thanks for still being here for me, and for us all, carbonman. Your posts have a realness that refreshes and empowers. You connect by expressing self-awareness without sounding self-conscious. Don't sell yourself short on what your posts accomplish with your methods of communication, my friend.

I personally don't think I could manage to sit through a meeting of the sort you and rooster describe. I am rarely comfortable in real life whenever I am not the center of attention.

jeff

NOTE: Here is a repeat of the location of the brochure anyone can print out to use at future cpaptalk-evangelist preaching opportunities: cpaptalk.com_brochure.pdf

DoriC wrote:I asked him what kind of machine he had, he didn't know, and didn't know his pressure setting and never saw a copy of his sleep study done 1 yr ago.

But, I'll bet this "clueless suit" could tell you everything about his other technological "toys". (cell phones, digital cameras, ipods, TV, etc.)

I'm always amazed that so many people know more about that stuff or will thoroughly investigate it before buying, but haven't got a clue about what's supposed to be keeping them breathing at night.


Den

Exactly! that's why I gave his description because I was thinking the same thing. He was Mr. Hot Shot!

Rooster, come to think of it he was kind of handsome in a stuffy,boring sort of way, not my type at all, I'm a poultry gal! And you're a devil!

JNK -- thanks for posting the link to the brochure. I had not seen that. I printed it out -- want to make copies to give to some friends. I showed a friend this week how he could get info from his smart card -- and he asked me to make a copy of a couple of pages to show his sleep dr at his visit this week. Another friend had an app't at a sleep dr this week -- want to give him a copy of the brochure. Another couple of people I have talked to have a cpap but don't seem to know much about it. I think a brochure would help them. It will help "spread the word."

Eureka wrote:JNK -- thanks for posting the link to the brochure. I had not seen that. I printed it out -- want to make copies to give to some friends. I showed a friend this week how he could get info from his smart card -- and he asked me to make a copy of a couple of pages to show his sleep dr at his visit this week. Another friend had an app't at a sleep dr this week -- want to give him a copy of the brochure. Another couple of people I have talked to have a cpap but don't seem to know much about it. I think a brochure would help them. It will help "spread the word."

You're welcome, Eureka. Glad to help out where I can.

I have pointed a number of people to this forum and have convinced a few to ask for a sleep test.

One of my lifelong friends, a bass-player I've written a few songs with, is my age, is thin, and has a small neck, but he mentioned to me in passing that his wife had complained about his snoring and that he hadn't been feeling so great lately--feeling down and anxious. When he said that, it clicked in my mind that he had told me years ago that his dad had suffered from obstructive apnea and also that he had died of complications from esophogeal cancer. Those clues were enough for me to print out a study for him to hand to his doctor in order to ask for a referral to a sleep doc. My friend's family doctor told him he thought it was 'highly unlikely he had sleep apnea,' since he 'didn't fit the profile,' but that he would agree to refer him to a sleep doctor just to humor him. The sleep doctor told my friend that he, too, 'doubted he had sleep apnea,' but that he would arrange a sleep study 'just to be sure because of the family history.' You guessed it! My friend was just diagnosed with moderate obstructive sleep apnea and is about to go in for his titration in a few days! I loaned him my bed wedge in the meantime.

I hope he never shows up in this forum, though, because he has a lot of dirt on me!

Keep spreading the word, Eureka. Who knows how many lives may be saved and improved!

jeff

Now we're playing "can you top this"? My husband's nephew is a Senior Tax Attorney for the IRS in NYC and has all the toys you can think of plus, he uses a cpap but "can't be bothered with all the technical stuff". He just turns it on and "lets it do it's thing". In April the aides at his dad's nursing home told him his father needs a new electric shaver. He's still "researching" for the best one to buy on Consumer Reports, etc.

DoriC wrote:Now we're playing "can you top this"? My husband's nephew is a Senior Tax Attorney for the IRS in NYC and has all the toys you can think of plus, he uses a cpap but "can't be bothered with all the technical stuff". He just turns it on and "lets it do it's thing". In April the aides at his dad's nursing home told him his father needs a new electric shaver. He's still "researching" for the best one to buy on Consumer Reports, etc.

I can't top that!

I think steering people to this forum is a great idea. To that end, for anyone who's able to attend these AWAKE meetings, it might make sense to hit a site like http://www.vistaprint.com, where you can get free business cards made up.

A simple white card might look like this:



*I created this "prototype" on Word and added the moon/star there, so that isn't available from vistaprint. But there are many designs to choose from, ranging from a fairly plain white card like this to something a little fancier. I think it would be a lot easier to have a business card with the pertinent info printed on it to hand to someone at a meeting. And they're free.