Seeing a new provider, asking for advice

In 2014 I underwent a home sleep study which recorded an AIH of 17 which led me to being prescribed a CPAP. After about a year of frustration with both my sleep doctor and insurance issues I stopped seeing her but continued to use the machine.

Then in late 2020 I decided to try again with a different healthcare system. This provider knew I was on CPAP but refused to look at my SD card so they decided to do another home sleep study. This time my AIH was at 41 with evidence of possible central apnea so they recommended a titration. Everything was scheduled but I suddenly accepted a new job offer. In fear that my employer would retaliate against me and backdate my insurance cancellation I cancelled the titration.

I tolerate the machine just fine, but I have yet to wake up feeling refreshed and I still have very little energy throughout the day and feel like I can doze off at any moment. It's gotten to the point where I can't even lie down without the mask, if I try to I struggle to breathe even while awake like a fish out of water. I plugged my SD card into Oscar for the 1st time the other night just to see if it was still recording which thankfully it is and my AIH is around 3 with 100% compliance.

Which leads me to this, later this month I have an appointment with a new sleep doctor and I fear that they're going to make me start from scratch once again. I'm very nervous about the prospect of another home study since I know I will be focusing on trying to breathe and will be lucky to even get an hour of sleep if even that. Even with 12 years of data I have from my card and my previous two studies I'm still worried that they'll just ignore me and demand the home study first.

Anyone have any advice on how I can skip the headache and convince them to forego the home study? Or how to best prepare for the appointment? Or at this point should I just accept that this is as good as it's going to be and pray that my machine never gives out?

I've had machines fail more than once, I'd be very uncomfortable relying on an old machine as my only machine. At the very least you should try to get another machine and keep your current one as a spare. You can get a valid prescription from any doctor, or even a dentist if you can find one that's cooperative. I currently have two machines, a primary that never leaves my bedside and another that I travel with, and my spare. I'll never again be without a spare. Both machines were purchased privately. Not necessarily the best thing to do but its remarkably easy (at least where I live) to find nearly brand new machines.

Doctors and SD cards.... In my experience most doctors don't look at detailed data, ever. My doctor looks at compliance and AHI, not much more. In the case that she needs more information she uses the sleep lab. If you are currently using a machine and have good compliance but you aren't getting enough benefit a lab study might be a good idea. To my knowledge there aren't home sleep studies that are used along with a CPAP machine. Assuming your employment situation is now stable a lab study might provide both the prescription and analysis. A lab study can reveal sleep issues that aren't necessarily apnea related. Its also the case that we change and our sleep needs change over time, a study from a long time ago may not be meangful. I've had good experiences with lab tests, the sleep techs are often much more knowledgeable than the doctors when it comes to the nuts and bolts of successful treatment.

You can also use OSCAR or Sleep HQ to post a night here and people will help you fine tune.

Well now something interesting is happening, apparently I'm getting a new machine. I was very late to the game on the Philips recall because I thought I had to surrender my current machine before I received a new one so I never did it. But I contacted them once I learned that wasn't the case and they're going to honor my claim. I mean it could be a machine issue, I swear the output has decreased over the years and my humidifier stopped working years ago.

As far as the SD card issue, all I want to be able to do is prove that I've been using the machine for the last 12 years so they're not accusing me of non-compliance and I don't get treated like a new patient.