Frustrated Newbie Needs Help!

[GMcC]

I apologize in advance for the length.

I started this journey about two months ago. My GP referred me to a sleep doctor. I went in, talked to her about what was going on, she gave me the Epworth scale to fill out. I did not score very high--in fact, I scored so low that the doctor fudged a new score so that my insurance company would cover a sleepy study.

I did an overnight study for apnea, followed by a study for narcolepsy the next day. Received the results--an average of 18 apneas an hour, inconclusive on the narcolepsy. Was scheduled to come in for a titration study, and the sleep institute told me they would call me to let me know if my insurance approved the study. A couple of days before I was supposed to go in for the titration study, I called the institute, because they had not called to confirm approval from insurance. Turned out to be a good thing I called, because insurance had NOT approved a titration study, so I didn't need to go in. Was newly scheduled for an appointment to receive an APAP machine.

The day of the APAP appointment, when I went to the reception desk, they had no record of my having an appointment (despite calling me the previous day to confirm the appointment!). Eventually they found me in their schedule (I guess), and I met with the person giving me the APAP. He gave me minimal information, a (what I now know was a) cursory mask fitting, and sent me on my way. Oh, and he gave me a nasal mask even though I asked for a full face mask because I know I breathe through my mouth and drool. A few days after trying the nasal mask, I insisted on the full face mask and was given one without any problems.

I've been lucky in that I've had no trouble sleeping with the mask on. No pulling it off, only one night with really major leaks, only slight discomfort. I've been 100% compliant. Not so lucky--my machine (Fisher & Paykel ICON+), while supposedly compatible with Sleepyhead, has a USB that my computer refuses to read. I've read all kinds of articles online, tried various things on my computer, no joy. At least I can read the daily data on my machine, though, and it gives me weekly and monthly averages. Out of 28 nights so far, I've had 12 when my average AHI was 5 or lower. Not so good.

I had a follow up appointment with the sleep doctor today. First, I gave the machine to the people who work at the front desk, who told me they'd download my data. So far so good. I'm in the waiting room for a bit. One of the front desk people tells me that the doctor is ready to see me, but she (front desk lady) is having difficulty downloading my data.

I go in to see the doctor. I tell her I'm not feeling much relief from the APAP. She has me fill out another Epworth scale. She looks at it and says: "Oh, but see? Your score is only 7, and when you first came in, it was 13! So it's been cut nearly in half!" I said: "Is that the score I filled out, or the one you made up for me so that I could get a sleep study?" And she said: "Oh, right. I forgot. Hmmm. I don't know." Great. (For the record, I'm 99% certain that the score of 13 was the fictional one.)

I tell the doctor that I haven't seen any correlation between nights when I have fewer apneas and feeling more rested. She says something to the effect of: "OK, but, I mean, you shouldn't be having many apneas at all, so there wouldn't be much difference from night to night in how many apneas you have on average." I said something like: "Ummm . . . actually, I think I've only had maybe five nights where my AHI was below 5." [I was wrong about this, the download showed 12 nights.] The doctor just seemed shocked and noted that "that shouldn't be happening because you're on an APAP, right? Not a CPAP?" She didn't even know what kind of machine I was on!!! I confirmed that yes, it was an APAP. She just sort of shrugged it off, thought it seemed weird. Asked if I was SURE I was reading the AHI number and not something else (I confirmed that, yes, I was reading the correct number). She went on talking about possibly putting me on stimulants, then wanted to send me on my way. Note, at this time, the download had not been completed. The doctor had literally looked at NONE of my data!

I asked the doctor if maybe she should look at my data. She just kind of shrugged again, and said they could keep the USB and send it back to me if I wanted, since the machine records data anyway. Then she suggested that we see if the people at the front desk had successfully completed the download. They hadn't yet, and my doctor said how they often have problems with downloading data from F&P machines. But, there was one woman not yet in the office who usually had "better luck" than others downloading the data. So, I went to the waiting room until this "lucky" woman came in.

A few minutes after the "lucky" tech came in, a woman behind the front desk said she had the download and she could give me back my machine. I asked if I could talk to the doctor about the download. Thankfully the answer was yes. The doctor just kind of glanced at it, and was like, "Well, your AVERAGE is 6.5 AHI a night, which is still pretty good. See you in 3 months."

Sorry for the novel, but what the ever-loving heck? This has got to be the most incompetent doctor's office I've ever visited. I don't even know what to do! Obviously find another doctor, but how? Ugh. Any and all advice about how to approach (fix) this situation is greatly appreciated.

[robysue]

I'll write more later.

But this is yet another horror story. We've got a lot of them around here.

At a minimum: You need to make sure that you have the USB stick. You should take the machine and it's USB stick to the DME who set you up with the machine and ask them to read the data---as in all the data, including any detailed nightly data---that they can get off the machine. Tell them your doctor's office could not seem to get it to load. If the DME also cannot get the data off the USB stick, you should politely, but firmly insist that they start by seeing if a different USB stick can be inserted into your machine and the data read off of it. If that fixes the problem for the DME, politely, but firmly insist that they replace your UBS stick with the one that works.

If replacing the USB stick still does not fix the problem of not being able to read the data, then it's time to politely, but firmly insist that the DME replace the whole machine. Preferably with a different brand that is less tempermental, such as a Resmed AirCurve 10 AutoSet or a PR System One Series 60 Auto CPAP or a PR DreamStation Auto CPAP.

[GMcC]

Thanks for the response. The doctor's office was eventually able to download the data from the USB, and they gave me a printout of the download, though I'm certain it's nowhere near as detailed as what I would get from Sleepyhead. I think I will call the DME and see if I can get a different USB stick, one that I can also read on my home computer.

[GMcC]

I've contacted the DME asking for any and all help they can give me to retrieve data from my APAP. With the minimal data I have, is there anything I can do to reduce the number of apneas I have each night? From the data my doctor was able to give me, the only substantive thing I can tell is that my pressure has never gone above 15 at night, so I narrowed my pressure range from 4-20 to 4-15. I can't say that it's helped so far. My mask fits well, I'm not having large leaks (as far as I can tell from what little data I have), but I'm still having about 7 AHIs/hour. Any advice is appreciated.

[kteague]

Until a pro weighs in here I'll just say that it's the lower number, not the upper that needs changed. If you were in Ohio I'd wonder if you has the sleep doctor as my first one. These machines increase incrementally and the climb can be too slow to prevent events. Bump that bottom pressure up and I'm betting your events will go down.

[GMcC]

@kteague

Thank you! That's really helpful.

[not happy]

I had a terrible sleep dr too in ann arbor mi. wouldn't answer questions and didn't care.
I've been on cpap for 3 months and only feel worse.