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How Many of Us Are 100% "Compliant"?
I would count myself in the ranks of those 100% compliant -- meaning that, with very few exceptions, I use my machine every single night, all night, and whenever I take a nap.
Hopefully I'm not alone. What about everyone else?
Hopefully I'm not alone. What about everyone else?
Views: 395
Replies to This Discussion
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Permalink Reply by Sian Davies on
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Hi Judy - You're amazing!!! I hadn't heard of aerophagia before. Curiously, when I mentioned the shoulder pain which accompanies the stomach pain, to the physiologist, she couldn't explain it and yet I've just googled aerophagia and it mentions shoulder pain!!! My GP doesn't want to refer me to have the polyps removed. He said without knowing what causes them, they will probably grow back. I've been using Nasonex for about 18 months. It's taken that long to get referred for the Apnoea, because the GP said I was too 'small' for sleep apnoea, even though my symptoms matched. It's so hard to take these things forward.
I don't understand this sentence:- "If you are not getting any response from your sleep doctor enlist your local DME supplier's RRT's assistance in getting thru to him/her and getting you some relief for the aerophagia" What is DME and RRT please?
One other thing - I asked whether it can be dangerous to fill with wind like this? It shows no sign of escaping and my stomach distends and stretches until the skin is very, very tight. This might be a silly question, but can anything burst?
Judy said:Sali, have you considered having those polyps removed? There is such a thing as "silent reflux" very common w/CPAPpers. And you obviously are encountering "aerophagia" given all the gas and pain you are encountering. If you are not getting any response from your sleep doctor enlist your local DME supplier's RRT's assistance in getting thru to him/her and getting you some relief for the aerophagia. And give some SERIOUS consideration to having those polyps removed and maybe they can even do some correction of the damage to your nose. A good ENT should be able to provide some answers about that and the polyps.
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Permalink Reply by susan mccord on
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Sali, have you given any thought to seeking treatment from a different GP? Yours doesn't sound like he's particularly tuned in to your stated needs. Re: polyps, that would be an ENT's call, not your GP's, seems to me....you can insist on a referral to a specialist even if the GP doesn't think you need it. Trust your gut sense about this. Some MDs are territorial about their patients, (?) why, but they don't have a right to keep you from seeking another opinion.
Susan McCord :-)
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I use mine every night-all night and with naps. Always, no exceptions. Now that is not to say that I started out that way... It took a month or so to get used to the machine and be completely comfortable. I have been using my machine for 3.5 years and I even took it to the hospital when I had my twins. When one twin was in the hospital last year I took the machine. I can't even fall asleep on the couch because I don't have my machine.
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Permalink Reply by Lala on
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I'm 100% compliant. I wear my nose pillows every night and every time I take a nap. I do it because I dont want to wake up feeling hungover, sick to my stomach, and exhausted, like I used to before cpap. What I dont do is clean it the way I'm supposed to. Sorry, it's just plain ole laziness and I just dont feel the need. I havent gotten sick from not cleaning it, I havent caught any horrible flesh eating bacteria, or had any kind of nose fungi infection. I dont recommend this, what's the old saying, "do as I say and not as I do"......ya, that. But its probably my immune system, made of steel, I eat lightning and crap thunder! Oh, and I drink day old water that's sitting on my night stand too. Sometimes, when I'm feeling really naughty, I wear the same jammies 2 nights in a row. I know, I know, I'm a sick puppy!! Geez!! I cant help it. But I do wear my mask every single night, every single nap.
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Giggle. Maybe we should rename this thread, "Confessions of an Apnean", Lala!!!
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LOL......I like it!
Judy said:Giggle. Maybe we should rename this thread, "Confessions of an Apnean", Lala!!!
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Permalink Reply by Clueless in Redwood Shores on
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Similar to Lala's confession -- I have been 100% compliant -- including anticipated naps (fell asleep on an airplane -- not much I would want to do about that)-- but I clean the masks (I rotate 2 copies of the same Quattro mask) only with alcohol wipes . My rationale is that I have not been able to find additive-free detergents and fear doing more damage than good to the masks.
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I try to be compliant, but sometimes in my sleep I will pull the mask off. Plus I just found out that the insurance company feels that when you have an air leak, it is non compliant. Which really upset me, I am in between mask sizes, and also need the chin strap. It feels like I am in traction. ,,,,, I just dont know anymore !
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I thought I was compliant, but my doctor told me I'm supposed to obtain new sleep pillows every 3 months due to breakdown. I did not know that. I also havent changed that lil filter in the back of the machine yet. Geez, I know! That's horrible, but I just forget that its even there. I know the RT told me a good way to remember to do it is by remembering there are 2 things that need to be cleaned everynight and 3 things every month, or is it 3 things every night and 2 things every month????? I cant remember. My memory is terrible. Anyway, I thought I was being compliant because I do wear the mask all the time, but I would guess being compliant is also changing the filter and getting new masks in a timely manner?
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Permalink Reply by Leslie Scott on
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My husband even wears his when he naps. When I did his last study, I was going to just start him on cpap (I knew I would be increasing his numbers, but he didn't believe me). At 1:00 am he was still awake cuz he couldn't sleep without his cpap. I finally got him to let me put it on... and I was right, turned him up (he was snoring at home wearing his mask)
We went on a cruise this summer. He forgot adapter for the back of his remstar and had left the humidifier home. I ended up going to medical to try and find stuff to be able to connect his tubing on the machine (got real creative with a oneway valve from a cpr mask ;) but it worked) That is one thing that I would think they would have on those ships, cuz I am sure he is not the first one to ever forget his adapter. (a whole nother post)
I was about 95% compliant when I was on cpap. When I wasn't, it was only cuz I fell asleep watching TV or something like that.
Les in CO
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Permalink Reply by Mary Z on
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Leslie,
My DME says there are two kinds of people (basically- a big generality) on CPAP. Those of us who are zealots, keep up with equipment changes, cleaning, doctors appointments, and call in with problems and questions. Then there are those who turn in a machine, or he takes it back because the person can't/won't use it, and when he looks at the usage it's two hours! Admittedly some people just don't tolerate CPAP and aren't willing to get the help to adjust. He said he often gets a call that there is a new vent patient for him and lo and behold it's that person that didn't/couldn't use his/her CPAP machine.
I'm lucky my DME is always there for me. Now about that- as a nurse and patient I learned that messages often get lost- you have to stay on top of things and call back if you don't hear from someone (Doc or DME after a reasonable length of time. Give them time, but don't ever settle for "they didn't call me back". Let the nurse of receptionist know if the problem is urgent or an emergency and don't be shy about standing up for yourself. Don't get mad until there is a good reason. We are important members of the care team, but kindness and explanations (e.g. I'm worried and think this may be important) go a long way to helping get what you need.
Not meaning to talk down to anyone, or preach. I just know some of us are shy about making our needs known.
I have to struggle to make a call to my psychiatrist if something is going awry.
We are all important!
Mary Zimlich
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Permalink Reply by Tim on
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I consider 100% compliant to mean that I wear my mask 100% of the time that I am sleeping; and that includes naps.
Yes, there are technical compliance numbers that use some number of hours daily; those numbers are just a fake metric that is used because there is no way to know how long the patient actually slept.
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