Major Concerns?

I have some major concerns about my future with my VPAP machine. I've had it for about a month, and have yet to be able to go more than an hour with it on. I've tried doing daytime desensitization (which I learned about here), meds to help me get to sleep with the mask on, etc. Still, no luck. Plus, I've been fighting some respiratory issues that make it tough to breathe with the mask on. That, in and of itself, has me really torqued out. Now, I find that I may be in jeopardy of losing the machine because I guess I'm not meeting the compliance reqirement for Medicare. I know I need this machine to keep from having more health issues. What I don't know is what to do about possibly losing the machine. There's no way I could afford to buy a machine outright, even a used one.

I guess I'm wondering what I can do to get things turned around before I lose this machine, or could it already be too late? Also, would it even be better to just admit defeat, turn the machine in and figure out another way to deal with this.

Sorry if this sounds like I'm whining. I'm just really frustrated right now and just don't know what else to do.

Thanks so much for listening (reading).

Greg... Go now to the User Ctl panel on the left just above the postings, do not pass go, click and go to Profile, then fill in the full name, etc. of all your equipment (and pressure settings too if you can). That way we'll know each time you post what you're using and can try to help you. Right now I want to know what mask you have and/or have tried - it's almost always the problem (whatever the problem might be).

gregkIN wrote:I have some major concerns about my future with my VPAP machine. I've had it for about a month, and have yet to be able to go more than an hour with it on. I've tried doing daytime desensitization (which I learned about here), meds to help me get to sleep with the mask on, etc. Still, no luck. Plus, I've been fighting some respiratory issues that make it tough to breathe with the mask on. That, in and of itself, has me really torqued out. Now, I find that I may be in jeopardy of losing the machine because I guess I'm not meeting the compliance reqirement for Medicare. I know I need this machine to keep from having more health issues. What I don't know is what to do about possibly losing the machine. There's no way I could afford to buy a machine outright, even a used one.

I guess I'm wondering what I can do to get things turned around before I lose this machine, or could it already be too late? Also, would it even be better to just admit defeat, turn the machine in and figure out another way to deal with this.

Sorry if this sounds like I'm whining. I'm just really frustrated right now and just don't know what else to do.

Thanks so much for listening (reading).

It's the least we can do. Fortunately, you have come to a good place to have folks listen.

If I remember correctly, you have a Resmed VPAP Adapt SV unit. You will need to talk with the DME to see what the situation is regarding medicare and complaince with the unit. Medicare has that rule in place to be certain units are not purchased and then not used.

No doubt, there is an appeal process. But you will need to PROVE that you are trying to use your unit.

And here's where both this forum and your DME can come to play. Talk wiht the DME. Be friendly. Remember, they can help you work the system, if they can and if they feel motivated. And trust me, DME's who have to deal with angry patients tend to not feel very motivated. Can't say I blame them. So, whenever possible try to become a real person, who's struggling with the therapy. They may be able to make some suggestions and help.

Some ideas that come to mind ... and pardon me for not remembering the details.

Do you have a humidifier? Do you use it? You should. It can help.

Do you have a full face mask? You should, since an ASV unit suddenly ramps up the pressure when you stop breathing. Over 15 to 20cm H2O, most nasal masks fail to work, since the pressure increase causes you to loose pressure through your mouth.

If you have a full face mask, does it leak a lot? Is that the reason you only use it for an hour? You might need to work to adjust the mask to minimize the leaks.

Why do you only use it for an hour? Do you take it off and not remember it? If so, the unit has an alarm that would wake the dead (if properly set). Do you take it off and turn off the machine? If so, no alarm will help.

So, why do you only use it for an hour at a time? Honest answers will help us help you. TRUST ME, I do understand how difficult it can be to use an ASV unit. I often fight sleep because of issues with the machine and mask. But we do want to help you be successful and healthy. As you've noted, failure to address your sleep problems WILL cause long term health issues. Many of us know first hand that is true. And none of us want to see you face further problems.

Don't give up Greg! you are here because you need help and good health, and you are worth it!
Best wishes, good sleep. Praying for your health (if that is OK)

Thank you all for your input. I really want this to work. It just seems like I keep hitting these obstacles, but this too shall pass.

John F. You are correct. I do have the Resmed VPAP Adapt SV and use an F&P Forma Full Face Mask. I am developing a little problem with leaks in the mask, so I've ordered a replacement liner to fix that problem. As far as the humidifier, I do have one and do use it. I currently have it set at around a 3.

I'm finding that I only use it about an hour at night simply because, after that amount of time, I get frustrated at not being able to fall asleep and the mask starts to get uncomfortable. Sometimes I'll take it off and have no problem falling asleep. If I wake up during the night for a bathroom call, I'll often put the mask back on when I get back in bed. Sometimes I can fall asleep again, but most often not.

I have tried the desensitizing technique of using the machine for a couple of hours during the day while I work on the computer, etc., but haven't tried using it at night yet. That will come in a few days.

The other issue that seems to be contributing to this issue is respiratory issues. I'll get everything all set, turn the machine on, lay down in bed and my nasal passages immediately block up. No nasal spray (even one prescribed by my dr.) will touch it, nor will OTC medications. I'm also having a hard time getting a deep breath on occasion, so these 2 issues combined make me feel like I'm suffocating with my mask on.

As far as the issue with Medicare possibly taking the machine away, I've not had any notification that I'm in jeopardy at this point. I'll just deal with it if and when it happens.

sometimes the nose will clog if the humidifier is too high, and sometimes it'll clog if it's not high enough... try experimenting with it. Maybe that will fix your sinus problem greg.

Julie wrote:Greg... Go now to the User Ctl panel on the left just above the postings, do not pass go, click and go to Profile, then fill in the full name, etc. of all your equipment (and pressure settings too if you can). That way we'll know each time you post what you're using and can try to help you. Right now I want to know what mask you have and/or have tried - it's almost always the problem (whatever the problem might be).

Julie, I thought I'd done that but apparently it didn't get saved. I've done it again, hopefully right this time.

Greg,
When I was switched to ASV I absolutely hated it. It took me well over an hour and sometimes two to fall asleep with it (finally passing out from frustration and exhaustion I think). After about six weeks of forcing myself to leave it on, I now fall asleep very quickly most nights. I still wake up with leak issues a couple of times a night, but the one or two nights that I've slept without it I woke up more frequently than that.
Ya just gotta force yourself to leave the *(&^% thing on. Good luck.

gregkIN wrote:... I'm finding that I only use it about an hour at night simply because, after that amount of time, I get frustrated at not being able to fall asleep and the mask starts to get uncomfortable. Sometimes I'll take it off and have no problem falling asleep. If I wake up during the night for a bathroom call, I'll often put the mask back on when I get back in bed. Sometimes I can fall asleep again, but most often not. ...

Greg, I agree with Bons (sometimes even with the tone! 8^)

Getting used to it while you are awake is a good (and important) start. But the ASV comes with the extra kick of pressure to help you ride through a central sleep apnea. And that HUGE push of extra pressure takes a LONG time to get used to it. As Bons said, you just need to put up with the danged thing. You will slowly but surely adjust to using the ASV unit. It took me about two months before I did not notice it as much any more.

Of course, I've had a run of a few days where I find myself fighting sleep. So, don't think it's not an ongoing issue. It takes "True Grit". Of course, if John Wayne comes to kick your butt to get you to shape up ... well, let's just say you would need more than an ASV machine!

But the point is that you will have to push yourself.

You might want to ask your doctor about the use of one of the sleep medications, such as a short acting one. The generic of Sonata does not stay in the body long, but would allow you to get to sleep faster. So, there is that as an option. I used it for a few months. I don't need it now, but it did help.

You may also need to tinker with pillows and such for the nasal congestion. I find that my Quattro Full Face Mask pushes down onto my sinuses. It takes a lot of tinkering to get the fit "just right". Also, you are new to xPAP therapy. You might need to try dropping the humidity level (lower the heated humidifier setting). Or perhaps increase it. Too much moisture can cause congestion, as can too little.

And just facing the pressure swings from the ASV can cause the congestion. It's part of why I switched to a full face mask. I will start breathing through my mouth when my nose no longer allows me to breathe.

Anyway, hang in there ... and keep slogging. It takes time to adjust.