CPAPtalk.com

Posted: **Thu Sep 11, 2008 2:22 pm**

fortomorrow wrote:. . . I have a very bad feeling that my doctor (who is a control freak) wrote a specific machine and mask on my Rx, in which case I am going to have to fight with him.

And then I'll probably have to get a new doctor. . . .

OR, he will be so impressed at seeing in action one of the rare patients willing to do research to get what is needed, that he will never again try to control you. Your efforts will prove to him how important it is to you that you have the equipment you can use to be compliant with the therapy he prescribed.

I think sometimes sleep doctors write specific machines and specific masks down in an attempt to keep you from getting ripped off by the DME, because of things the doctors have seen. Or the doc may have heard his patients say they do well with certain masks or machines. Or the sleep techs the doc works with may have mentioned certain machines and masks. So even if the doc wrote specifics, it may be out of an attempt, however misguided, to be helpful. I truly doubt the sleep doc wants to submarine your efforts, even if he is one of those control freaks we all run into. He has nothing to gain if you get a crappy machine. That's between you and your insurance and the DME.

My doctor wrote a spefic machine and a list of masks on my perscription. But when I left a message about the DME, he called me and offered to write whatever I asked him to as instructions to the DME. (Have I said recently how much I admire that man?)

DME's are scared to deviate from what a doctor writes. And rightly so. Doctors don't play. And neither do insurance companies. But if you can find a way to get what you need, you win. So let them see you want to go about it in a way that leaves all their butts covered, and they all may very well try to work with you, not against you.

After all, hey, you're on a roll--you already found a helpful and kind person at a DME! That's more than I've ever accomplished!

And to restress what is being said by the experienced ones here: It is much more important to get a machine that gives you data than it is to get an auto. (Though autos have their place) True data-capable (not just compliance!)That is one battle you can't lose. Follow the suggestions from this forum to be sure you get the right machine. Don't sign for the machine until you know you can get the data you need.

jeff

Posted: **Thu Sep 11, 2008 2:27 pm**

Justification? Ask him why people with Diabetes use glucose meters. THEY monitor their therapy......why shouldn't XPAP users be able to monitor their therapy with a data-capable machine?

Den

Posted: **Thu Sep 11, 2008 2:29 pm**

I'm having trouble figuring out which machine though. I'm a Mac user, and it looks like all the software is Windows only. (No Mac bashing please, I'm well aware that I suck )

Are there machines that will show my data on the machine itself?

Posted: **Thu Sep 11, 2008 2:31 pm**

While you are at it, ask your doctor to write "mask of patient's choice" on the prescription. Mine has that and I can go in and try on a dozen if I want to and I can take home one or two at a time and if they don't work, switch them out for two more. Eventually you will find one that doesn't hurt and then you can start fine tuning it to fit comfortably and not leak. THer eare all kinds of hints here from people who have the same mask and everyone is happy to share what works for them.

Keep coming back, even if only to vent.

Bev

Posted: **Thu Sep 11, 2008 2:36 pm**

jnk wrote:
fortomorrow wrote:. . . I have a very bad feeling that my doctor (who is a control freak) wrote a specific machine and mask on my Rx, in which case I am going to have to fight with him.

And then I'll probably have to get a new doctor. . . .
OR, he will be so impressed at seeing in action one of the rare patients willing to do research to get what is needed, that he will never again try to control you. Your efforts will prove to him how important it is to you that you have the equipment you can use to be compliant with the therapy he prescribed.

I totally agree w/this approach. I used this w/my doc and he didn't even hesitate.

jeff

Posted: **Thu Sep 11, 2008 2:38 pm**

Hi,

I can't give you any better advice then you've already received but if not for this board and the smartcard reader I would have given up on the cpap.
Three months of cpap just about destroyed my mind, I was in a fog. THe full face mask left me with painful sores on the bridge of my nose.
If crying would have got me to sleep I would have.
With the nasal pillow I would wake up with air roaring out of my mouth.
By reading this board on a daily basis and using the suggestion things are slowly starting to turn around. I started cpap January of 08

Posted: **Thu Sep 11, 2008 2:39 pm**

fortomorrow wrote:
Are there machines that will show my data on the machine itself?

Send a PM (personal message) to Slinky.

Or maybe someone else can tell you which machines give you detailed efficacy data on the screen. My ResMed does that, but not all ResMeds do.

It takes software to get the detailed timelines, but getting a lot of data from the machine's screen sure is a handy thing, in my opinion. I hope to get software for the timelines one day, but I'm happy reading from the machine's screen for now.

Posted: **Thu Sep 11, 2008 4:25 pm**

Yeah, I went round and round at the DME, until they finally put me on the phone with the "woman from out of town". My argument was that I wanted to monitor my progress day by day, and wanted to be able to change the settings to try to get my apnea index down. She was giving me the same old argument that we hear so often here on this forum. Only the doctor can change the pressure settings. Well, I had been on this forum for several weeks and knew better. I told them that all my friends, without exception, were actively involved in their own therapy and tweeked their own settings. I was beginning to fight back. Knowledge is power. Everyone in the office stopped what they were doing and listened as I talked to "the woman".

Finally, I told her that my doctor had told me I should try more than one model, and so I told her I wanted to try the Resmed Autoset II, and if they couldn't get me a Resmed, I would just leave and go to some other supplier. She said for me to give the phone back to one of the office workers. I have a Resmed Autoset on the way. I tried a m-series with C-flex, but I am not completely satisfied with it. So when I got back on the phone with the "other woman", I told her that I would only accept the m-series w/Aflex or the Resmed Autoset II, and that was that. So I thanked her for her cooperation and said goodbye. So now the guy at the DME knows that if he messes with me, I'm back on the phone with "her." (I've got to meet her sometime). He will call me as soon as the Autoset comes in. Although he said, "We'll still have to do a two-week sleep study, and see which machine works for you best." Well, that's fine with me, I'm still leaning toward the Resmed, based upon what I've read here. That is, all things being equal, I'd still rather go with the nice, blue, less imposing, non-blue lights, minus the big ominous brick thing that falls off the nightstand all the time, machine. Not to diss in any way the m-series w/Aflex that is so popular here.

How did I do, Slinky?

Bye,
Jay

Posted: **Thu Sep 11, 2008 6:44 pm**

IStumbleN wrote:I rarely post on the board. I'm mostly a reader/lurker but I do feel your pain. One thing that I wanted to mention is have you spoken with someone about your mask? When I first picked up my machine, they had the same mask ordered for me, however, I told them that I would prefer to have something a little smaller that I can wear while watching TV in bed before going to sleep or while reading so I got the nasal swift which other than a little irritation around my ears, I really like. If you haven't maybe you should talk to them about the mask.Also I do feel your pain. I had the hardest time adjusting to my CPAP machine. I can't tell you how many mornings had me waking up so tired I could barely function, however, now I really like using it. While then I would put off going to bed which didn't help becuase I wasn't getting enough hours of sleep, now I look forward to using it. I've even taken two trips to visit friends and have taken it with me. As difficult as it is to do, keep with it and eventually you'll get use to it.Sharon

Don't know about the rest of the 'boarders' here, but this missive from Sharon struck me as poignant. Sharon, not telling you what to do, but I, for one, would appreciate hearing more from you. I'm 'new' here, but the wealth of information has me addicted to this format and this group. I believe that you would add a 'weave' to the fabric of this community.
Virt

Posted: **Thu Sep 11, 2008 6:48 pm**

ANOTHER UPDATE!

I went by my doctor's office this afternoon to get a copy of my rx and my sleep study, and also to leave a letter that I wrote explaining exactly what I wanted and why I wanted it (he doesn't have voice mail and I don't trust the receptionists to take a detailed enough message).

The copies were brought out by his assistant, who told me I should be getting a new machine and a new mask after a mask fitting soon. And I certainly hope so, because the mask I was prescribed is a small and according to the fit chart on cpap.com I need a medium. But the small was what they used in the sleep study, so I guess that's what the doctor deferred to.

I should get my Breeze on Monday and if it allows me to sleep then I don't mind paying out of pocket for it.

I have no idea what most of the words in the results of my sleep study mean. I'll poke around a bit and try to figure it out.

Total recording time 193.0 minutes. Total sleep sleep time 133.0 minutes. Sleep onset latency is 13.5 minutes. No REM latency during this recording. Sleep efficiency is 68.9%. The patient had 19.2% stage I sleep, 65.8% stage II sleep, 15.0% stage III/IV sleep and 0.0% REM sleep. Low oxygen saturation is 82.0%. The patient had 51 respiratory arousals with a respiratory arousal index of 23.0, 8 spontaneous arousals with a spontaneous arousal index of 3.6, 5 obstructive apneas, 46 obstructive hypopneas, 48 respiratory effort related arousals. The overall calculated apnea plus hypopnea index (AIHM) 23.0. Overall calculated respiratory disturbance index (RDI) 44.7. Periodic limb movements were 12 with an index of 5.4. Based on this evidence of severe obstructive sleep apnea with oxygen desaturations and lowered sleep effficency, the patient was place on nasal CPAP per protocol. Results of that nasal CPAP titration will be discussed in the next section.

Total recording time 272.9 minutes. Total sleep time 233.0 minutes. Sleep onset latency is 23.0 minutes with a REM latency of 30.0 minutes. The patient was started on nasal CPAP, 5cm water pressure, recorded for 44.4 minutes, but slept only 21.5 minutes. Efficiency was low at 48.4%, therefore titrated to a higher pressure.

CPAP at 8cm water pressure recorded for 109.5 minutes, slept for 106.0 minutes, sleep efficiency 96.8%. Entered REM sleep supine, 1 mixed apnea, 1 respiratory effort related arousal, fairly well-maintained oxygen saturations. Tried a 10cm water pressure with equally good sleep efficiency at 87.4% (EDITOR'S NOTE: How are 96.8% and 87.4% equal?), entered REM stage sleep, only 1 central apnea, 4 respiratory effort related arousals, well-maintained oxygen saturations. Also tried 12cm water pressure, excellent sleep efficiency of 93.1%. Patient was supine. No obstructive sleep breathing. Appeared to do best at this pressure. Significant reduction in periodic limb movements, down to 2.3.

Again, thank you for your help, everyone. I'm not sure what I would have done otherwise.

Posted: **Thu Sep 11, 2008 7:10 pm**

Well I'm a newbie to this CPAP world, and I am amazed by your story. My sleep study and Rx identified a machine and the mask I chose the night of the study. But on my first appointment with the Home Health agency I chose, they let me try on 4-5 masks, and have let me return every one that has not felt right after several nights. I thought this was standard. Tonight I have brought home the one I hope will be a keeper. I just wonder about the folks you are dealing with, and hope you will challenge what they are saying to you!

Posted: **Thu Sep 11, 2008 11:41 pm**

Seems like its always me who adds the following:

Repspironics rep. on a chat said this:

We recommend using mild soapy water on a daily basis for optimal results for any of our masks. Avoid soap with moisturizers. Cushions tend to interact to natural facial oils, so be sure to wash your face each night before use. Your seal and comfort can be compromised if cushions acquire build up on the cushion surface. For those with sensitive skin, it is a good idea to soak ANY new mask you use for 30-60 minutes in mild soapy water.

I've been doing it with every mask or nasal seal since the first one caused carpet burns on my face.

The Breeze was the mask that moved me from utter frustration, to being able to go through the therapy, to loving it.

But even the Breeze, soaked, and used with KY Jelly (a Resmed recommendation on a chat) caused pressure sores on my nose by night 3, and my RT recommended a 2-3 night break. I think one night was enough.

Our nostrils have never had anything in them and suddenly having something touch them all night long may cause irritation. Don't let that discourage you.

And here is an excellent "How to set up your Breeze" thread.

Good luck
O.

Posted: **Fri Sep 12, 2008 12:09 am**

And here's a link to Lab Rat fixes...several for the Breeze, in case you need to do some modifications beyond the great adjusting tips in the link ozij provided.

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

Oh, and I might as well throw this in. A link to many, many, many topics about the Breeze. It was my favorite mask for over a year:
LINKS to Breeze nasal pillows / nasal mask topics
viewtopic.php?p=31202

If you haven't already rigged up a way to hang the main air hose overhead to keep it from tugging on mask or headgear, you might want to get a hose hanger ready:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

Posted: **Fri Sep 12, 2008 6:40 pm**

Another update, one less promising.

I just got a call from my neurologist's assistant. He wants to see me in his office to discuss the concerns I had in my letter to him. But he's out of the office all next week so my appointment isn't until the 25th.

The DME won't let me refit my mask because he prescribed a specific mask, even the size of it!

I am going to have to justify to him my reasoning for wanting a new machine. I asked for an AutoPAP or at the very least a machine that's data enabled. I want to be able to see what's going on with my therapy to see if things are getting better. So far all he's done is throw a barebones machine and an ill-fitting mask at me and that's it. The machine I have doesn't even have a card in it so he can see if I'm being compliant. And my followup appointment with him wasn't even scheduled until the end of October.

I am going to go to this appointment on the 25th and if he does not give me what I want I'm going to have to find a new doctor. I have no idea how to go about that, but it looks like I'm going to have to find out.

The thing that pisses me off the most about all of this is that he's the head of neurology and supposedly a sleep disorders EXPERT.

Posted: **Fri Sep 12, 2008 8:53 pm**

Sounds like you are about to get the fine opportunity to educate an expert. Think of the next one of us vict . . . oh, sorry, I mean "patients," that will come along in the future. Teach the doc well. But you may want to be gentle. Especially if he is the head of something or other.

jnk

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