Newbie Questions: software, masks and machines. Oh my!

Hi! Thanks for your help.
A few weeks ago I went to a sleep doctor with what I thought was delayed sleep phase disorder and turns out it is severe sleep apnea.
After a horrible split night study, I am a week into home CPAP and doing better than I had expected, with a long way to go.
sleep study notes:
AHI: 34 (mainly hypopneas)
No REM or stage 3/4 sleep
OSA "partially responded to positive airway pressure therapy. She had fragmented sleep during titration and no completely effective pressure was
found."
Pressure: recommended 7cm (titrated from 5 to 7cm)

My doc is eh, and I was overwhelmed at my appt so didn't ask the right questions. I am frustrated with his in-office CPAP clinic. I know y'all know
what I mean. Right now I am on a 1-month free loaner. Of course, they scheduled me to review w/doc and clinic juuust after 1 month. Insurance
pays 80% after i meet the remaining $100 of my deductible, which doc says puts me at about $240 for CPAP through them. I would prefer to go through
insurance since money is tight.

So...my main questions:
1. DME: yes, I can see why there is a lot of mistrust of them, just from my limited experience. If I end up staying with insurance/B&M but want to
look outside of doc's office, any suggestions as to how to get a decent one? Can the DME just call doc and get rx?
2. Effectiveness: What do I make of the partial response factor? Perhaps it's just the fragmented sleep, but how it should affect my care? It seems to me, that,
plus the lack of effective pressure found (I think AHI was about at 10 at one point with CPAP) would indicate an auto cpap would be better, no?
When I asked about that at the CPAP clinic, they just kept asking me what problems i was experiencing and said once i purchase a machine,
the capability for auto would be available (not sure whose capability they're referring to?).
3. Machine. I generally like the ICON, but i am concerned about (above) effectiveness, and (below) data/software. But I don't want to commit to it
if there are deal breakers, and that's where the data issue comes in...
4. Software. I really like the idea of being able to keep up with stats at home. As of now, I can only see info about hourly compliance on machine and
haven't figured out a way to get smartstick usb thing to work on my mac. I haven't been able to find anything recent to see if sleepyhead is
compatible with both Icon & mac. Clinic basically says (after being shocked that I don't have windows :/) bring
in stick so they can download info. Yes, I have to make an appointment (they are only open 4 days/week) and drive across town so they can print it out for me - haha.
Apparently, there just isn't the technology yet for patients to access the complete info at home. Yeeaaaah.
5. Mask. I definitely want a nasal pillow. Opus pillows fit well and are generally comfortable, but the pillow thingie keeps coming detached/leaking, plus the headgear seems the wrong shape for my big head, and the profile by the ear is uncomfortable. Suggestions?

thanks so much!
Lisa

ETA: machine: icon novo (not sure why this isn't showing up below)

http://maskarrayed.wordpress.com/what-y ... me-part-i/

That should answer a lot of your questions, but probably raise many new ones, so please get back if you have more.

The biggest 'deal' is usually finding the right mask for you, in your size, fitted properly, preferably lying down as your face changes a lot then... so be prepared for some trial and error. You can look at masks in detail on Cpap.com as they have a great variety, lots of pix, reviews and info on what's out there.

Can you hold fire on machine and mask choice until you've explored some thoughts here?

For starters: ResMed and Respironics machines are the most popular, the AirFit p10 nasal pillows are getting rave reviews and Sleepyhead software works fine with Macs (not Yosemite yet) just for starters.

Icon Novo has NO efficacy data. They've already shown their true colors as far as concern for your care. They don't care if it helps you, they only care about getting paid.

Ok, that is helpful. Julie, that is great info about
DME. So, Janknitz, to clarify what you mean by
Efficacy data, do you mean data available for the
Patient or do you mean detailed data for the
Provider? Either way, it's obviously not gonna cut it.
I suppose the Icon auto would be better but still not
Ideal because of software, especially on Mac.

So do you think I need another sleep study since they
Didn't find ideal pressure during titration? Not sure
How common that is. Would an auto PAP help?? I would just
Hate to go through all this and then get real data
That says it's not helping.

I think for now I will use up a few more weeks with
the loaner, trade in some masks, etc. I can move my doc
appt up to before 30 days ends, and then ask him better
questions & get my prescription. Then once I find
What I want at DME I will return loaners to doctor's
cpap clinic. Does that sound right?

madisonmama wrote:Ok, that is helpful. Julie, that is great info about
DME. So, Janknitz, to clarify what you mean by
Efficacy data, do you mean data available for the
Patient or do you mean detailed data for the
Provider?

efficacy data means, data to show whether the treatments are effective or not, basic 'brick' machines only record whether you used it or not, and MAYBE an ahi average for the night, (some don't even do that) but as to a breakdown of how many events, how often, where, what time, how you were breathing, all that stuff that's incredibly helpful at finding out if it's helping... none of that is available in the cheap machines, ergo, no effectiveness data, aka, efficacy data.

Efficacy data can be for you since you would have the card and some software downloaded presumably. You can access a lot of detail to see exactly what is going on during the night. You can then make adjustment to your machine to get better therapy. People here can help you do that.

Note: Your DME may not be happy with you doing that but you will better off and that's what matters. Most DME's are usually only interested in whether or not you used the machine and for how long each night so that the insurance company will pay them.

To clarify, the Novo records only one type of data, that is hours of use. That's it, nothing else. So all your sleep clinic cares about is that you are using the machine (meaning they can get reimbursement from your insurance company for the cost of the machine you get), not whether or not it's really helping you.

Efficacy data will show leaks, AHI, hypopneas, clear airway events, pressure changes (APAP), snoring, periodic breathing, and more. You need efficacy data to know if your machine is providing you with optimal therapy, if you are having excessive leaks, and yes, you can titrate (determine the best pressure settings) at home with an APAP, no need to go in for another night's study in the sleep lab under highly artificial conditions that may not dial down what you need sleeping in your own bed and sleeping conditions.

In general, you can more easily access data from ResMed and Philips Respironics full data machines (see my blog) using Sleepyhead. ResMed Autoset has some great on screen data that's useful too, Respironics does NOT. And yes, we can get any data the provider can get, but your sleep clinic and DME may not know that and won't like it that you do.