Changing your pressures on your own

I have a great sleep doc but she told me in the beginning that she didn't think patients should have data capable machines because "they don't understand what it means." I insisted on getting a ResMed S9 Elite at my DME (doctor didn't know what I ended up getting). When I saw her at my 3-month checkup, I brought in graphs and data that indicated my CPAP setting at 15 was too low allowing elevated AHI and hyponeas more than half the night. But they were low the other part of the night. So they averaged out making it look like my setting was fine. She was impressed and commented that I really understood my stuff. So she wrote Rx to set pressure at 16 and then 17 a month later.

9 months later, I showed her with data and graph prints outs that I had flow restrictions ALL NIGHT and AHI at 8.5. I told her I thougt I really need BiLevel. She agreed and wrote Rx for BiLevel at 18/14. I saw her a month later and had set it myself to 19/15 but she didn't even notice.

Now I went for my annual checkup. My pressure was up to 22/18 to keep AHI down and minimize flow restrictions. She didn't notice from data her secretary printed out. She was getting ready to write new Rx (Medicare requires new one every 12 months) and she says "18/14?" No, I said. I had to adjust it up to 22/18 over time to keep things ok. "You changed the pressure from what I prescribed?" she asked with concerned. "Yes, I noticed from my data that it needed to go up." "Oh, she says." And wrote the Rx for 22/18. But I definitely got the sense that she was not happy I was changing her prescribed pressures. "How did you know how to change it?" "I downloaded a clinician's manual on the internet and learned all about it." She look sheepish. I don't think SHE knows how to adjust machine pressures. Let's the DME do that.

Ironically, I don't think my sleep doctor had ever looked at a GRAPH of a night's detail before I brought them. She only looks at the summary over the previous 60 days for both AHI and compliance. My AHI was 0.6 but ResMed had a "red sad face" every morning for a month indicating serious leaks. I showed her on the graphs that my AHI was very low when I had very high leakage. So just looking at AHI doesn't give you a true picture of what is going on. She had never looked at the average leak on the summary before. My average leak was 66% indicating minimal airway support.

I guess I gave my sleep doc some needed education. I know more about USING data to intelligently to adjust pressures than she does. Maybe she realizes now that she should be looking at those graphs and especially average LEAK. And that having a data capable machine is appropriate for some patients. (A lot of elderly Medicare patients would be totally confused. But she as the doctor doesn't have access to that data if she prescribes a BRICK.)

Wow, VikingGnome, your description of your sleep doctor was almost cringe inducing Your sleep doctor is a dinosaur, a lazy one at that... you might consider dumping her. But hey, if she gives you the Rx scripts you need and stays out of your way, then what the heck? The path of least resistance etc etc. On the other hand, if you screw up on your 'self designed' therapy there's no safety net provided by your current sleep doc. Something to consider.

VikingGnome wrote:she told me in the beginning that she didn't think patients should have data capable machines because "I don't understand what it means."

FTFY