Reactions of other less informed c-pap users.

[blakepro]

Since I was first diagnosed with Sleep Apnea, I have met a wide variety of people that also have the condition. I'm going to call them "apneans" just for simplicity. Many of them are close friends, co-workers, and family.

I have noticed something strange though, and I'm wondering if its just me, or if many of you also experience it...

It seems like most apneans I know don't want to talk about sleep apnea, treatment options, or anything on the subject.

Now, I'm not an aggressive person. I'm not beating peoples doors down on a crusade to inform the masses about c-pap stuff, but when the situation is right for it, I'll occasionally bring up the subject. Seems like whenever I do though, they are completely uninterested.

It makes me feel bad because most of the apneans I have met are completely in the dark, using whatever non-data machine and mask the DME threw at them and never seeing or hearing from their doctor again. These apneans I know are completely compliant, but I know their treatment could probably be better. Especially the ones that have gone years and years with the same pressure and machine without ever looking at a report or speaking to a doctor to see how their treatment is going.

Do any of you experience this same thing? People that just aren't interested when you tell them about all the great treatment and reporting options that are out there?

I guess the reason it bothers me is because I was in the dark like they are now for 5 years.. using a non data, very basic machine... perfectly compliant but not knowing things could be so much better.. - It wasn't until my machine broke that I finally stumbled upon this website and had my eyes opened.

I'm really grateful for this place and all of you that have shown me kindness and helped me with my silly questions.

So is it just me? or do some of you experience this too?

[Llama]

I have not met a single apnean in real life that gave two hoots about their machine or their treatment; they all have placed all their eggs in the baskets of their prescribing doctor and DME and none of them have a fully data capable machine. Weird and scary.

[WearyOne]

The only other person I know who has been diagnosed is my husband and he's on cpap. He could care less about numbers, data, changing his filters, washing anything, etc...unless he starts having a problem. THEN he asks me stuff! Never goes back to his doc and since we don't have insurance, if he ever decided to buy a replacement seal, it will be online (with me handling it, of course). He does wear it every night, though, and takes with him on his numerous leisure trips out of town.

I think it partly a personality thing. I have a friend that I just know if she had OSA she would know everything there is to know about it and then some, and be checking her data all the time, etc. Other people, like my husband, figure as long as they're feeling better, who cares about the other stuff. Not saying I agree with that; just my take on it. I fall closer to my friend, but at this point in my treatment (over three years now), I don't check the data near as much as I used to.

[brazospearl]

Blakepro,
I didn't vote, because I didn't see a choice that matches my thoughts on this. I know several "apneans," and most of them don't talk about it. There's one friend who uses her machine "occasionally" when she feels like she "hasn't been sleeping well." She's a lovely woman, well-educated, great at her job, and can talk at-length about other health issues, but doesn't seem to get it when it comes to her CPAP therapy. A few of my apnean friends don't discuss personal health matters much at all, so for all I know they're completely aware of their optimal therapy. Or not. There are others who don't appear to be able to discuss it, and give me blank looks if I mention things like AHI or leak rates. This makes me think they didn't do much research, took whatever machine was handed to them, and hope for the best Then there are some friends who tried CPAP in the past, were unsuccessful, and think I'm crazy to say I feel so much better now that I'm breathing all night. Takes all kinds to fill the freeways, I guess.

[Froro]

I didn't answer either as i don't know or have met many with OSA.

When I was first diagnosed, I got the software, learned everything I could and checked my data everyday. After about 6 months I knew things were working well so i only started checking the data maybe once a week or every two weeks.

Now? I checked it last week for the first time in months. If I feel bad in the morning I check the stuff off the machine but that's it.

I think it's important at the beginning to be educated and understand what is going on with you and your body, data etc, but once you know things are on track I don't dwell on it. I'm the best judge of how I feel so if I feel like hell...I look at the stuff and then see if there is a pattern. I've sent a few people to this board though to get better educated themselves.

[GumbyCT]

I guess the reason it bothers me is because I was in the dark like they are now for 5 years.. using a non data, very basic machine... perfectly compliant but not knowing things could be so much better.. - It wasn't until my machine broke that I finally stumbled upon this website and had my eyes opened.

So they behave just like you did but now you think that is odd? Do I have that right?

My theory is that many folks like to think they are no longer "Perfect" if they have been dx'd with 'anything' much less some silly breathing disorder. So they don't like to discuss their faults with anyone, maybe even not with their doc. Two people you need to be honest with - your doctor AND your lawyer. Ok three- yourself.

Most just want to know how to turn the machine OFF. They feel if they have used it - they have done their part.

I like to tell everyone I know - I can't multi-anything. But then, I am only an man.

I can't even sleep AND breath at the same time. Far from perfect.

[timbalionguy]

I am a ham radio operator. One day last week, I was openly discussing my situation and treatment route on the radio with someone else who was interested in what was going on. A friend of mine happened to monitoring that conversation later called me and upbraided me for discussing health problems over the air. He could not understand why I would be so willing to discuss something like health issues in a venue where many other people could hear the conversation. I had to explain to him that for some of us, we have really nothing to hide, and there is no harm done in publicly discussing health problems like sleep apnea. Especially with someone who showed some interest.

In responding to the poll, I selected 'some do, some don't' because that has been the response I have received from other apneians (great new word!)

[GumbyCT]

Since I was first diagnosed with Sleep Apnea, I have met a wide variety of people that also have the condition. I'm going to call them "apneans" just for simplicity. Many of them are close friends, co-workers, and family.

I have noticed something strange though, and I'm wondering if its just me, or if many of you also experience it...

It seems like most apneans I know don't want to talk about sleep apnea, treatment options, or anything on the subject.

Now, I'm not an aggressive person. I'm not beating peoples doors down on a crusade to inform the masses about c-pap stuff, but when the situation is right for it, I'll occasionally bring up the subject. Seems like whenever I do though, they are completely uninterested.

It makes me feel bad because most of the apneans I have met are completely in the dark, using whatever non-data machine and mask the DME threw at them and never seeing or hearing from their doctor again. These apneans I know are completely compliant, but I know their treatment could probably be better. Especially the ones that have gone years and years with the same pressure and machine without ever looking at a report or speaking to a doctor to see how their treatment is going.

Do any of you experience this same thing? People that just aren't interested when you tell them about all the great treatment and reporting options that are out there?

I guess the reason it bothers me is because I was in the dark like they are now for 5 years.. using a non data, very basic machine... perfectly compliant but not knowing things could be so much better.. - It wasn't until my machine broke that I finally stumbled upon this website and had my eyes opened.

I'm really grateful for this place and all of you that have shown me kindness and helped me with my silly questions.

So is it just me? or do some of you experience this too?

Many of the new folks posting here don't like to discuss their health either when asking for help. It seems they want an online diagnosis (or opinion) without providing any info (at all) sometimes. I think this fits with your theme here.

Is this wide-spread? Apparently so.

To me it is also a sign that their treatment is not effective and their brain is still low on O2.
This becomes evident when reading some threads/posts here.

Did I mention that OSA impacts the way we think? Reason? Process our thoughts?

[sleepycarol]

Almost everyone I have encountered that is using cpap have no idea which machine they are using, the name of the mask nor the size they use, etc.

When I start talking data, they look at me like I am speaking an alien language.

I tell them that they should check to see which machine they are using, and most never do.

[dsm]

I voted that few want to talk about it. At least at cpaptalk there are a lot that do (not everyone mind you ).

Cheers

DSM

[blakepro]

I guess the reason it bothers me is because I was in the dark like they are now for 5 years.. using a non data, very basic machine... perfectly compliant but not knowing things could be so much better.. - It wasn't until my machine broke that I finally stumbled upon this website and had my eyes opened.

So they behave just like you did but now you think that is odd? Do I have that right?

My theory is that many folks like to think they are no longer "Perfect" if they have been dx'd with 'anything' much less some silly breathing disorder. So they don't like to discuss their faults with anyone, maybe even not with their doc. Two people you need to be honest with - your doctor AND your lawyer. Ok three- yourself.

Most just want to know how to turn the machine OFF. They feel if they have used it - they have done their part.

I like to tell everyone I know - I can't multi-anything. But then, I am only an man.

I can't even sleep AND breath at the same time. Far from perfect.

I can see how it probably sounded that way, but it wasn't the case with me. As far as talking about it with other people, those 5 years were even worse for me because I wanted to learn more but every time I spoke of it with other apneans, they didn't have much to say and I blindly accepted that. I felt like I was getting the best treatment that was available. I thought I had a fancy machine because it had a humidifier. When I had my sleep study done, I asked for a print out of all the data. I thought it was fascinating even though I didn't understand it very well. I thought that the only way to get data like that was to go through another sleep study which is expensive on my insurance. If even just one of those people had told me there were ways to get reports using a machine at home I would have been very interested in talking to that person to learn more. I guess thats why I find it a little hard to understand and a little surprising.

Its nice to have a place like cpaptalk.com to discuss things in a open and usually friendly group.

[Muse-Inc]

I voted the some do some don't option. I freely admit if I hear anything that smacks of apnea, I speak up...loudly and long with details and suggestions, I hand out my business card and write the name of this forum on the back, I suggest home studies/overnight recording oximeters as well as PSGs, I warn of the dangers of untreated apnea. So far, no one's taken offense, or at least not mentioned it, and some come join the conversation. Some have had their lives changed for the better. Still working on the gal who takes my checks at Public Storage (you don't wanna know and no I'm not living there yet ) who's been been wo insurance for while & just getting some, she's chunky with a lot of fat around her throat, has resistant hypertension, lousy sleep...her old doc (she's getting a new one) said she wasn't a guy so she couldn't have apnea *sigh*.

[Captain_Midnight]

Good and interesting question.

From my observations, many apneic patients are a little intimidated by the unfamiliar terms and the technology (sort of like how old uncle Horace never wanted one of those newfangled cellphone gadgets.)

Additionally, I suspect that most apneics don't appreciate the severity of the disorder or understand the value of monitoring and optimizing their therapies. Sadly, sometimes inertia plays a part, as well. These patients are willing to learn the "minimum", and not much more.

No, I don't blame the docs or the DMEs. From my own experience and observations, the information was likely given to the patients, or the patients can surely find it. Some folks might do well to take some additional responsibility for their own health; on sleep apnea matters and also on all matters pertaining to good general health.

.

[cpapernewbie]

well - as usual the answer is: it depends

in my early days as cpaper, I asked guidance for 2 long time users. these 2 did not even know what their pressure and machine. Pathetic.

However due to my circumstances, having no insurance I dealt with many in Craiglist and auction sites. These people are knowledgeable since most are selling and buying through informal channel, they need to know much more than those who depend fully on the medical professionals/technicians.

[ChestBump]

No, I don't blame the docs or the DMEs.
.

Sorry Captain but I do. Not all, but some. After having to fight with my DME for a machine that is fully data capable, then fight for another machine that actually works only to be faced with the fact that no software comes with this S9. So I have been everywhere including this very site trying to find the software so I can monitor my own health. I know when something did not go well with my CPAP treatment the morning after, but I'm supposed to wait 3-4 months to take my data card in so that my doctor can say that something is wrong? I'm going to keep trying until I find the software because my health is too important to me to wait to act on something 4 months later!