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Permalink Reply by Jan on October 28, 2009 at 9:32pm

I think that you are on to something with the notion of an advocate...now to think of a way to do that on a national level! I've read about so many issues with DME's, doctors etc on here. Of course, the complaints are self selecting in that most people having an easy time of it generally don't post. BUT, what really makes me sad hearing all of these stories (and living some of it) is that it comes at a point when people are just so exhausted and depleted. By the time I dragged myself to a doctor to find out what was wrong with me I was just so tired and so uncharacteristically overwhelmed.

In addition to lots of other things, physicians, DME's and others dealing with people with this condition need to be educated to understand the physical, emotional and mental toll this condition takes.

BeeAsleep said:

Judy, I wish you could come to Colorado and be my xPAP advocate. (No, really :>D) When I read your post I feel so lucky to had found a place with real answers, but I feel soooo overwhelmed. I am sooo not technical, I can barely work the TV remote control.

Do I call my ResMed provider and tell them what I want or do I call my doctor and tell him what I want and have him write out a prescription for the provider? In my experience, doctors don't like being told what do do. (Understandably). I don't quite know how to approach getting the right machine. Do I take a list in to the doc and say, "This is what I want." ?

All I know is I feel like I am drowning when I use this machine. At night I eventually make myself calm down and force myself to breathe against the machine...but it is NOT a rest inducing experience. I want to make this work, I am committed to pushing through the problems. My level is set at an 11 and it does ramp up to that point.

Thanks so much.

bee

Judy said:

Forgive me, BeeASleep, but when I first saw the subject of this thread I had to giggle. A little story about why. I had been on xPAP for quite a while and was doing well altho we didn't have my Leaks under control as yet. One night I was STARTLED out of sleep by a loud, piercing whistle!!! I had no idea what it was and lay in bed waiting for another or some other sound worth getting out of bed and checking for. But nothing so I just snuggled back down and was dozing off when there was another whistle, not as loud or piercing but still as strong as when you are whistling for your dog. So I lay there aware again waiting for .... whatever. When all was quiet and nothing else occurred I snuggled back down again and dozed off, except that there were two more soft whistles. IT WAS ME! It was air escaping from the corner of my mouth!!! Now, I'd experienced the "lip flutters" a few times before - and since - but that was the ONLY night I whistled!!! And thus, why I snickered and giggled when I saw the subject of this thread.

1] Make sure you have secured your humidifier lid tightly. It should snap when you close it securely.
2] Check your hose for leaks
3] Roll or turn the barrel of your Swift LT a bit or swizzle the pillows a bit in your nostrils
4] You should NOT have to force air out on exhalation. You either need an xPAP w/EPR or your pressure lowered.
5] If you have mixed apnea you are a candidate for a special type of bi-level, an ASV
6] Most insurances will not pay for a bi-level until you have "failed" CPAP therapy.
7] Try real hard to get a fully data capable APAP instead of that Escape. An APAP would serve as a good backup device for a bi-level ASV.
8] A properly set APAP w/EPR (Resmed S8 AutoSet II) should do very nicely to alleviate that struggle to exhale and if you can drag things out w/an APAP for the term of the purchase of your APAP before giving up and having a bi-level titration for the mixed apnea you might end up w/the APAP as paid for and yours AND a bi-level ASV.

Altho I didn't plan it that way that was what I encountered. I have COPD. I was started on CPAP. It was a struggle but it helped. I bought an APAP out of pocket. I did bug my sleep lab and sleep doctor during the first year on CPAP and then just got discouraged and spent the next 6 months adjusting pressure settings myself. I did better than the sleep lab had. But - I still wasn't doing as good as I should nor as I wanted. So - I decided to give the sleep profession one more try. I ended up w/a bi-level titration and an insurance paid bi-level (plus my insurance paid CPAP and self-purchased APAP). I wanted a back up bi-level so I sold my CPAP and searched carefully for quite awhile at cpapauction.com until I found a lightly used bi-level auto and purchased it outta pocket. All in all insurance purchased a CPAP and a VPAP Auto (bi-level) for me and I self-purchased 2 APAPs and one bi-level auto.

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Permalink Reply by simanc on November 23, 2009 at 6:44pm

So BeAsleep, I realize that you started this thread back in April and I've read all the responsed you've received. What was the resolution for you? I have the same mask and I am experiencing the same sound as you.

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Permalink Reply by BeeAsleep on November 23, 2009 at 9:25pm

Well, It was just getting the nasal pillows seated securely in my nose. I have been using a Headrest mask most recently. It works much better for my needs.

simanc said:

So BeAsleep, I realize that you started this thread back in April and I've read all the responsed you've received. What was the resolution for you? I have the same mask and I am experiencing the same sound as you.

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