Threatening letter from DME - noncompliance

[NewlyDiagnosed]

I got a letter today from my DME, saying that my device usage has not been up to the standard.  On the first reading, I thought that they were saying that I would not be able to continue under my insurance program.  On a second reading, they may just be warning me that I am not using it enough.  I just got home from work and it is too late to call them.

I got my machine and my "mask fitting" exactly 30 days ago.  I put "mask fitting" in quotes because it was pretty much worthless. I was given only one mask and there was not much in the way of getting it to fit.  It didn't work at all, and after reading posts here I decided to try the Dreamports (not provided by my DME).  I have only had them for about 2 weeks, learned on the first few trials that I was mouth breathing, ordered tape.  I've only had everything for a few days. 

So far, I haven't had good experience.  I have not been able to sleep for more than an hour with the system running.  I have been advised to use the system during the day, while awake, but that's not so easy.  Hooking up the DreamPorts is quite a process.  It usually takes me about 20 minutes and multiple tries, and once the ports are applied, they can't be removed and re-applied.  Also, I don't have a lot of time to sit quietly even on days when I'm not at work.  I'm hoping that eventually I'll get used to the system, but at the moment it's just causing very broken sleep, and I'm discouraged.  Some nights I have to sleep without using it so that I can get a decent amount of sleep.  At this point, I'm so tired that I can barely function at work and should probably not be driving.

I will call the DME tomorrow, and see what they say.  It doesn't seem reasonable to count the first 20-something days as the compliance period.

Oh, and the letter said that the information has been sent to my doctor.  My prescription came from a Lofta doctor who is 3000 miles away.  I have an appointment with a sleep specialist here in mid-December (first available when I called in February) and I have an appointment with my primary in early June.  My plan was to bring Oscar data so that she could write a compliance letter, and give me a prescription to get supplies from a different DME (most carry Dreamports; mine sells them in their direct sale division but won't provide them under insurance).

[OpalRose]

Your DME should be more accommodating with fitting a mask, at the very least, most will allow a mask change within the first 30 days.  You have to be the one to ask, they're not just going to offer it.

You will find that finding the right fit and having leaks under control will make or break your therapy and compliance.

Most insurance companies follow Medicare guidelines concerning compliance.

Compliance:
Medicare requires that a patient use CPAP for more than 4 hours per night on 70% of nights (21 nights) during a 30-day consecutive period any time in the first three months of use.
Patient must also have a face to face appointment with their doctor any time after the first 30 days, but before the 90 days expires.

It's important you do whatever it takes to meet the above requirements, as they can take your machine away.

[staceyburke]

Compliance is considered 4 hours a day. You said you had been told to use it during the day. I would suggest that also. Use another mask ( one has to be on while in use or they can tell by pressure) but they can’t tell if you are awake or asleep.

I had to do the same thing for about 2 months until I could sleep with it on for all night. Read book, watch tv or tie flies for fishing…. Anything that you can get the time in. Hopefully you can get use to it quickly and can sleep all night with it on.

[NewlyDiagnosed]

OpalRose, thank you. That's more or less what I've been told, but it's not clear to me whether I can choose the 30-day period, or they can choose it. Can you tell me which it is? I've been assuming that I will be able to make the requirements in the next 30 days, before my appointment with my doctor.

I did tell them that the full face mask wasn't working, and they sent me a nasal mask. By then I'd decided to try the Dreamports, so I ordered those on my own and have been working with them. I haven't opened the nasal mask yet.

Great idea, staceyburke. I can use the full face mask or the nasal mask they sent me for daytime wear. That solves one problem.

[Deborah K.]

StacyBurke hit it on the head.  Then use your Dream Ports for sleeping.  They are a bit fiddly to learn to use, but soooooo worth it once you catch on.  For me, the trick is when I am clipping on the hose attachment I have to push down hard on the round part of the dreamport that is closest to your face, on the front, back, and each side.  Usually, they click, but not always.  You can tell you have done this right if you can block both openings with your fingers and no air leaks out anywhere.  

Have you watched Stuart (Bleep's owner) put the parts on?  He (and I) cut off part of the elongated side of the tape.  I keep those cut-off parts and use them to patch any sticking-up parts of the tape.  It's easy to accidentally create a sort of tunnel while applying the tape.  When this happens place one of the small pieces to overlap wherever the tunnel has formed onto your skin.  The tunnel does not have to reach the end of the tape, because when the pap pressure is on the tunnel usually extends to the end and leaks.  

It's harder to explain both of these tips than to do them, but they do work.  Don't be discouraged.  You'll get it!  

[NewlyDiagnosed]

Deborah, Thank you! I am usually able to get the DreamPorts hooked up eventually, and it's great when it happens and it's suddenly quiet. I have practiced quite a bit with the ports not attached, so I get the basic concept, but I have trouble working with the two pieces when they are so close to my face. It's as if there isn't enough room for my fingers. My manual dexterity is pretty good but I am still awkward working with them.

I have watched Stuart's videos, multiple times, and he was kind enough to do a Zoom meeting with me. I'll try pushing down on the DreamPorts - do you mean that you push down on the ridge that is closest to the nose?

I am pretty sure that I've never had a tunnel in the adhesive material. At least, I have always been able to get a seal. At first, I had leaking from my mouth. Tape solved that, but last time I used it I was trying a different way to use the tape, and it came off in the 3rd hour and I had major leaking.

[OpalRose]

.... but it's not clear to me whether I can choose the 30-day period, or they can choose it.  Can you tell me which it is?  

Yes, you can choose the 30 day period, but.... why would you do that?  

Even those of us that have been using Cpap for a while have not so good nights.

This is pretty strict.  You must use 4 hours per night on 70% of nights (21 nights) during a 30-day consecutive period any time in the first three months of use.  

The problem with "choosing" is that you can be compliant for 21 nights, except for one night where you only had 3 hrs!  My point is, do this early on so that if you screw it up, you still have time to get it done.

[NewlyDiagnosed]

OpalRose, My intention is to get CPAP working as soon as possible, and use it all the time. I'm not planning to deliberately not use it. My question had to do with whether the DME could choose to evaluate compliance during the first 30 days, when it was impossible for me to meet the requirements. I have a doctor's appointment 30 days from now, and I'm going to try my best to meet the requirements before then.

[OpalRose]

My question had to do with whether the DME could choose to evaluate compliance during the first 30 days...

As much as I don't like DME's, I don't think they are choosing to evaluate your compliance within the first 30 days.  Don't you think that maybe they were just giving you a heads-up?  Yes, they could offer more assistance, but remember that they want to be paid by your insurance... which won't happen if you fail the compliance period.

Hey, I don't make the rules.  Most of us don't like it any more than you, but sometimes you have to play along until compliance is met.

We here on AB want to see you succeed.  Use whatever mask gives you the least grief.  

Before bedtime, try reading or watching TV while using the Cpap.  You can do this for an hour or two to log in some time and will also help you adapt.

[NewlyDiagnosed]

Yes, it might have been a heads-up. Hard to tell from the letter. I'm going to call tomorrow.

Yes, my only hope of succeeding at this is this forum, and I am so grateful for all the help.

I have been wearing the DreamPorts for 1-2 hours before trying to go to sleep but haven't been managing more than that. I have not been able to sleep in them for more than an hour. Sometimes I wake up after an hour and go to sleep again for another hour. My problem now is that I am more tired than ever, and I've had to take some nights off just to get sleep. But I will try to work at home as much as possible in the next few weeks and wear the conventional nasal mask then.