New and Desperate...

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Lori Dawn
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Re: New and Desperate...

Post by Lori Dawn » Wed May 11, 2011 7:18 am

causticcompliance wrote:
So is that mostly what those terms mean? Or is someone going to be following me around and my insurance coverage cancelled cuz I fell asleep before strapping on my "Vader" face?
I have been following your thread and I just thought I would tell you that I have BCBS, too, and they have never asked for compliance data. I quit using the machine two years ago after two months, and BCBS rented the machine until just recently when it was mine. I just had to get a new study, a new RX and a letter of medical necessity in order to get a new machine two weeks ago.

If your insurance company doesn't require compliance information, the DME won't even bother with it. Only me and my sleep doctor will be downloading my data. No one else cares.

I'm glad you found the site before you got your machine! When I realized that I was given a "dataless brick" (as Robysue would say!), I had to go through all the red tape, which the nice people here who are helping you, guided me to do. Wished I would have found the site two years ago, or even seven years ago when I was first diagnosed, I know I wouldn't have quit and I would already have a NEW LIFE!

Good luck in starting your therapy! I hope you will be feeling better very soon!

Lori "QF" Dawn
Lori "Queen of the Fog" Dawn

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robysue
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Re: New and Desperate...

Post by robysue » Wed May 11, 2011 7:23 am

causticcompliance wrote: So is that mostly what those terms mean? Or is someone going to be following me around and my insurance coverage cancelled cuz I fell asleep before strapping on my "Vader" face?

Yes I understand to those who are going to say, "don't fall asleep before strapping that on..." but here on planet earth we humans make mistakes ...from time to time of course
For most of us, once the insurance company has fully paid off their share of the machine, not even the DME gives a hoot about compliance data. Sleep docs may look at it at yearly (or even less frequently) follow-ups as an ersatz way of measuring quality of therapy. (I wonder: Do these docs just simply believe that we hoseheads can simply tolerate sleeping with the dang hose on our nose most nights, then we must automatically be getting decent quality therapy?)

But there are some OSA patients who never are fully freed from the CPAP police in terms of compliance data. The largest, most visible group are professional drivers (i.e. truckers). My understanding is that truckers with OSA have to regularly prove they are in compliance in order to maintain their professional license, and if they can't do that at their required annual physical exam, they cannot drive until they are back in compliance.

And in NYS at least, there are provisions for medical suspensions of driver licenses for ordinary folks that can be initiated by forms filed by (a) a police officer, (b) a physician treating the driver, or (c) a member of the public who is concerned about the driver. So it's within the realm of possibility that if you either cause an accident (or near accident) because you fall asleep at the wheel, get pulled over because you are driving irratically, but seem too sleepy and there's no evidence of alcohol in your blood, the cop might well file a form suggesting that you are medically unfit for driving. And if during the investigation your untreated or undertreated OSA showed up in the form of not enough compliance data, then you could lose the license. How often does this happen? I haven't the foggiest idea since I'm a mathematician, not a lawyer.
I am going in this morning to get all my results and the prescription for my stuff. Will post back as soon as I can...
oh and I know I say thank you a lot out here but all of you have been so very helpful to a stranger and newbie (even as ornery as Robysue has been, she was so very helpful too <wink> - (That was just a loving ribbing Robysue - Big Hugs to you - your efforts really are greatly appreciated - LOVE your detail when you post) so allow me to continue to say a sincere and very heartfelt thanks to everyone. Talk to you all soon.
First, best of luck with getting the equipment. And DO make sure the machine is EXACTLY what you want. (Sorry for the cynicism, but there are just too many newbies posting way too often about "bait and switches" in my humble opinion. Of course, in my not so humble opinion even ONE newbie post about a "bait and switch" by a DME is too many ....)

And yes, I admit it: I'm ornery at times. It's the insomnia talking. Or my basic ornery personality showing through. Heck if I wasn't so ornery, I'd have abandoned this therapy sometime back in October or November I think. But I'm too damn stubborn to be beaten by a machine ....

And I'm glad you appreciated the detail in my posts.
The Swift FX at least looks to be the most comfy.
If you go with the Swift FX and have trouble getting/maintaining a seal, POST your problems ASAP. There are lots of people with quality tips on how to fit this very comfortable, but somewhat finicky mask here. As an FX user, I've been lucky and have had no problems right from the start with good seals and no real leak problems. But I also lucked into an RT who properly fit the mask: It's supposed to be worn quite loose: I can easily get a finger or two under the upper strap and (for me) the trick with the back strap is to get it tight enough to keep it from slipping DOWN onto my neck. If it slips upward (even to the point of almost, but not quite falling off), this mask is remarkably stable---for me---and I do sleep on my side. But I seem to be an exception on that last part.

Again---best of luck in learning to sleep with the hose quickly! And may you be feeling MUCH better VERY quickly!

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causticcompliance
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Re: New and Desperate...

Post by causticcompliance » Thu May 12, 2011 5:16 am

This might be a long post...I apologize ahead of time but there is just so much to say and so many questions...

Ha...thats funny on the divorce evidence. You truly may not be far from the truth Archangel. I can see it happening too.
I do drive as part of my job (no CDL required) but I have never had mine make me so sleepy that it was as dangerous as driving a semi, thankfully its been caught in time...Im sure its no less risky though if I don't use the treatment.
I guess I will just deal with the "compliance" stuff as necessary. That was a good point that either way its helping me feel better so compliance really shouldn't be the issue at all. Oh and also, BCBS is making me rent for 10 months <shrug>...I think that's a little long but who cares as long as I get the right machine and it works.

FYI - I found out yesterday a little more detail from the respiratory doctor that my apnea is considered mild to moderate...my interruptions are at 11 until I hit REM (all stages) then they go up to 30...so another blessing and maybe the reason I am only feeling just down and out and not falling asleep at my desk, I am at least getting some sleep. That may very well be the reason my titration went so well also. All I needed was some good old fashioned restorative REM sleep.

Robysue, be careful, I think I am starting to like you lady Thank you so much for the kind words of encouragement and the tips, and I most certainly will post any troubles, that I am positive of. This is way too valuable of a resource out here. God bless the people who put it up and maintain it. You are (as well as everyone that contributes here) in my prayers. Special winks to Pugsy too

By the way, I have noticed a slow and steady decline in how I feel since my titration...I am almost completely back to the way I felt before I went in...it took a couple days but its all back. Mild depression, bags under my dark circles under my eyes and just a heavy physical exhausted feeling <icky>... Makes me so excited to get my CPAP even more now for tonight.

So I went to the respiratory doctor yesterday and I don't think he liked me being informed. He wasn't mad but I got the feeling he was insulted and concerned at the same time. No proof on that, just a feeling. He told me everything I have already learned here and in my research. I finally stopped him and said "I think you're preaching to the choir here doctor; so far you confirmed everything I have found out from new friends in a forum online and in my research"... --pause-- --double-take-- and the "God complex" seemed to melt away. Good conversation after that. He didn't seem to like me getting my own data though. I thought that was odd after what you all said but I pushed back until I got my way. He insisted "we will take care of that for you..." ... nah nah nah I said, "you and I will take care of that for me..." he grinned and agreed. I don't care how many years at a college someone has had, I am only worried about the "machine" I deal with on a day-to-day basis...and nobody knows how it feels to be in this thing like I do. <herumpf>

One thing you all deserve some big credit for and I need to be thankful to those that I may have insulted when I mentioned "cynics" in my earlier post...you saved me from being a victim to the DME with the info you gave me. Explanation...I was just talking with one of the office nurses from my family doctors office and mentioned what you all said about DME's being stinkers...she didn't miss a beat and said "watch them very carefully, they can make things pretty sticky" I was shocked. This is a medical supplies company for heavens sake, I know they have a bottom line but to gain at the cost of others health, not to mention their lives just makes me sick. Literally sick to my stomach... She did say "not all of them are like that but there are a few". According to her the one I found the S9 at is a pretty good one and they get good feedback on them. I go into today at lunch to get the machine and try some masks.

I think between what you two said (Pugsy and Robysue) I am gonna focus on the FX nasal pillow one. That just sounds like it's a good place to start anyway. Of course I will try others but you all haven't steered me wrong yet...and even if it seems you do in the future, I remember its different for everyone

I have a few questions now...some of these common sense tells me the answer but I really respect everyones advice out here...plus, I am a human and thus by nature a sinner <sigh> ... so be gentle.

1) I am a smoker. The doctor OF COURSE says "quit now" and I do have a plan but are there any ex-smokers (or even current ones) that have some input on CPAP and smoking?

2) I also like to partake o' the fruit o' the vine now and then too (beer, wine and an occasional jack and water), any issues with CPAP and a drink (or 4) once or twice a month?

3) Talking with my fellow employees on the CPAP, a couple of them have said I may not actually get a full 7 or 8 hours with my CPAP at first (I think Robysue or someone out here mentioned that too) because my body will say I have had enough rest and I just won't be able to get back to sleep...at least in the beginning according to them. The explanation was weird and wondered if anyone else out here has had that and why that happens? or at least a good guess would work for me

Thanks again, love talking with you all.

Regards,

Cc
"If I can see farther than others, it is only because I am standing on the shoulders of giants"

cflame1
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Re: New and Desperate...

Post by cflame1 » Thu May 12, 2011 5:21 am

causticcompliance wrote: 2) I also like to partake o' the fruit o' the vine now and then too (beer, wine and an occasional jack and water), any issues with CPAP and a drink (or 4) once or twice a month?
All the more reason to get an Auto and make sure that your top number has some 'room' on it.

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causticcompliance
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Re: New and Desperate...

Post by causticcompliance » Thu May 12, 2011 5:51 am

cflame1 wrote:
causticcompliance wrote: 2) I also like to partake o' the fruit o' the vine now and then too (beer, wine and an occasional jack and water), any issues with CPAP and a drink (or 4) once or twice a month?
All the more reason to get an Auto and make sure that your top number has some 'room' on it.
Maybe I am missing something but can't I adjust that "top number" myself or allow the machine to do it or is the Doctor/DME gonna set it and I can't have the machine adjust it. They set my pressure at a 9 so does that mean the machine, even though it is an auto, will only top out at that?

That concerns me a bit...
"If I can see farther than others, it is only because I am standing on the shoulders of giants"

mayondair
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Re: New and Desperate...

Post by mayondair » Thu May 12, 2011 9:13 am

A straight CPAP would be set at a single number, 9 for example, no variation. Auto Paps can be run in this mode, single number no pressure variation. Auto Paps can also be set as a range, 8- 12 for example, with the pressure varying wiithin the range to meet your needs. So, have a glass or two and get an auto pap Get the soft wear and monitor your therapy, change as needed by looking at your data over time, no need to depend on the DME to do this
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causticcompliance
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Re: New and Desperate...

Post by causticcompliance » Thu May 12, 2011 9:51 am

So does that mean I don't need the Dr Rx to say I want it set with a range (I am getting an APAP S9 Autoset)?
"If I can see farther than others, it is only because I am standing on the shoulders of giants"

HoseCrusher
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Re: New and Desperate...

Post by HoseCrusher » Thu May 12, 2011 9:59 am

Cc, I suggest that you make your efforts to quit smoking a top priority. This can be a "significant" challenge...

One of the "aids" to quit smoking is visualization. As you go through your day, make an effort to visualize a day without smoking. As you are drifting off to sleep, visualize a day without smoking.

This is an effort to reprogram your habits to exclude smoking.

Only about 99.9999999876% of the people I know find their first attempt to stop smoking a failure. Don't become discouraged by this, just try again.

There are so many different triggers involved with smoking that it is difficult to give general advice. The common thread is that when you finally decide to quit, you will.

A drink (or 4...) is not an issue, unless it interferes with your sleep and health. To drink responsibly you need to remain hydrated. The best way to do this is to follow each drink with a glass of water.

Now, if you don't want to spend all night running to the bathroom to pee, you should probably stop drinking early in the evening.

The best way to track your sleep is to keep a sleep journal. In it you can note the hours of sleep you get, and how refreshed you feel in the morning and throughout the day. The body has a lot going on inside it and we usually don't respond as machines and get the same amount of sleep each night.

Once again, right now the best thing you can do for your health is to quit, or greatly reduce, your smoking. We are all here to offer encouragement, so feel free to lean on us and we will help in any way that we can.

It is good to list a series of goals to get an idea of what is ahead of you, but you can't stop there. You then need to sort the list and place priorities on the various goals. You also need to figure out a way to measure progress and celebrate your accomplishments.

Remember that every journey begins with a single step.

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Pugsy
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Re: New and Desperate...

Post by Pugsy » Thu May 12, 2011 10:02 am

causticcompliance wrote: 3) Talking with my fellow employees on the CPAP, a couple of them have said I may not actually get a full 7 or 8 hours with my CPAP at first (I think Robysue or someone out here mentioned that too) because my body will say I have had enough rest and I just won't be able to get back to sleep...at least in the beginning according to them. The explanation was weird and wondered if anyone else out here has had that and why that happens? or at least a good guess would work for me
Hard to describe but sometimes the body is just so used to getting by with poor sleep in general that it may respond by thinking 5 hours of so much better sleep is that enough rest has been obtained... Sometimes we just wake up for any number of reasons, obviously this can create potential problems because any fragmented sleep messes with overall restorative sleep... Sometimes some people put the mask on and do get that magic 7 or 8 hours of sleep right away. I tend to think that the majority of people probably fall somewhere in between. Body adjusts to getting more and better sleep and gradually time slept increases. Partly because the body realizes it needs and wants more sleep and partly because we no longer wake up so often because of just the alien thing on our face.

You may be getting APAP but it likely will be set in straight CPAP mode. I would suggest that you start out with what has been prescribed and not jump into fiddling with things immediately. Gotta start somewhere. Get used to the mask, get the leaks under control, watch the reports and after you have a good handle on things, then if you want to experiment a bit or the reports show that maybe a change is needed, you can make informed choices as to what change you might want to implement.

APAPs will try to fix leaks by increasing pressure which can in turn create more leaks...vicious little circle and could not only disrupt sleep greatly, it can give the impression that more pressure is needed to treat events when it is actually trying to treat the leak.

I hope they don't supply the APAP set at 5 min and 20 max. Should that happen let me know and I will elaborate on why this is recipe for disaster especially for a newbie.

Did someone give you the tutorial on using the software? And do you have the software now?

Smoking and CPAP... Well it is often stated that smoking makes OSA worse but I haven't actually spent any time studying the whys. I will offer one suggestion and not harp on the dangers...cause you already know what they are.
Instead, if you must smoke try not to do it immediately prior to going to sleep. The nicotine and drugs in cigarettes can act like a stimulant and possibly delay sleep onset. Anything that delays sleep or messes with sleep needs to be avoided or limited as much as possible. Just common sense really.

Alcohol... In moderation probably not a problem at all. Remember that even though we might think we sleep really well, it actually acts like a stimulant in the long run. Some people it may affect things, others see no difference at all. It won't take you long to see where you fall in that regard.

In theory anything that has the potential to cause airway collapse (relaxation) is to be avoided as much as possible.
We can't stop our lives entirely and sometimes things happen. I have bad, bad arthritis. Sometimes I need a pain pill. While in theory they can make OSA worse, I have a choice... sleep with pain pill and maybe make the OSA a little worse, or no sleep at all due to pain... Guess what I choose? In reality I have found that I see no difference in the reports. I rarely ever drink alcohol so I offer my pain pill observation. Just use good old fashioned common sense and you will be fine.

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Re: New and Desperate...

Post by robysue » Thu May 12, 2011 10:03 am

causticcompliance wrote:So does that mean I don't need the Dr Rx to say I want it set with a range (I am getting an APAP S9 Autoset)?
The DME is going to set the machine exactly how the doctor's Rx says to do it.

What you choose to do with the machine in your own home, however, is a different can o' worms altogether.

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mayondair
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Re: New and Desperate...

Post by mayondair » Thu May 12, 2011 10:52 am

Ditto Pugsy, get used to the mask, get leaks under control, get some data. Get started and sort out any problems as you encounter them. Always lots of help here and unlike DME and MD, open 24/ 7
Any landing you walk away from is a good one; if you don't break your airplane it's excellent.

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causticcompliance
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Re: New and Desperate...

Post by causticcompliance » Thu May 12, 2011 3:00 pm

Wow...great stuff...Thank you all. I received that very well and will keep the CPAP 9 setting that my APAP currently has for a while.

By the way, I DID NOT get along well with the DME...actually (and this is not exaggerating) there was a LOT of screaming early on. They told me how it was gonna be from the git-go and I did not get a chance to see this post before I went to know I could change it later. So I argued with them and almost didn't get my CPAP. I am not a hot head...but I don't take well to people telling me how its gonna be when I have to live in this body. Especially with all that you guys have told me. I am much more "compliant" if asked and worked with as part of a team. They could have simply said, how about we work with this for a week or two then change it to APAP?, like you guys all did...So long story short the DME apologized for starting it (thank God cuz I really wanted to take this thing on vacation...whew)...and they did by screaming first. I of course was a bit ornery and asked way more questions of what I knew from all of you than I believe they liked. All in all I am just now calming down...I know I am probably gonna get in trouble from you all but ...well...doggone it, that made me mad. <sigh>

Anyway, I do understand all the dangers of smoking even without Apnea so I knew I would get a good talking to about quitting asap and I plan on it. Good advice with the picture it idea. Also, Glad to know I can at least partake of a drink now and then fairly safely...unless I want to pee all night long (that made me lmao)

Thank you all so much and I plan on being here in the morning to cheer or vent on how my night goes tonight with my new CPAP.

Cc
"If I can see farther than others, it is only because I am standing on the shoulders of giants"

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carbonman
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Re: New and Desperate...

Post by carbonman » Fri May 13, 2011 6:46 am

causticcompliance wrote:I of course was a bit ornery and asked way more questions of what I knew from all of you than I believe they liked. All in all I am just now calming down...I know I am probably gonna get in trouble from you all but ...well...doggone it, that made me mad. <sigh>
Cc
cc, it has been fun to follow your progress.
I realize that when you're living it, it's not fun.
Been there, done that, have the T.

It took me almost 2yrs to "calm down".....so, you're good.
I have, in my militant days, advocated for the organization
of the Unruly Mob, equipped w/torches and axes to accost the DMEs.
I have since distanced myself from all that and have mellowed,
and will leave this to the newbies as they discover their path.

This cpap business is an amazing journey.
Education, patience, perseverance equal success.

All the best.
See you on the road.
"If your therapy is improving your health but you're not doing anything
to see or feel those changes, you'll never know what you're capable of."
I said that.

DaveMunson
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Re: New and Desperate...

Post by DaveMunson » Fri May 13, 2011 6:01 pm

You did the first right thing: ask here.

Read old posts here. Try to understand.

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