1st follow-up appt. w/ sleep doc: what to do?

[monica4patience]

I have my first follow-up appointment with the sleep doctor tomorrow. I haven't seen/spoken to him since my first referral appointment back in October. I had my sleep study in November and started CPAP on 12/7/10. I'm in my 7th week of treatment.

The worthless DME never sent an SD card; therefore never received mine to get the data to send to the doc. Lucky for me that I spent the $$ on the software and have printed out the report for 12/7 - 1/15 to give to the doctor. I also have my daily charts printed in a notebook with notes on meds, mask liners, hose cover, caffeine/alcohol use, etc.

I do want to get copies of my Rx so I can go to a local DME, where I can pick up supplies on my schedule; where maybe I can actually get some service. However, I do not want to spend my appointment dealing with this issue. I want to focus on me and my treatment!!

My numbers are looking good. With advice from this board, I increased the pressure from 7.0 to 8.0 in an attempt to lower the Vibratory Snore and RERA. I never really looked at the numbers again; but my AHI has been ranging from 1.2 to 3.0 most days. The VS and RERA are all over the place and don't seem to correlate to anything. Maybe he can makes some sense of those numbers. Anyway, now I'm feeling anxious about having changed the pressure setting!!

Oh, and the best news is that my creative energy is returning. I've been quilting again; taking a course through a book and am having a blast playing with the fabrics; cutting apart great pieces of fabric and sewing them back together again!

I'm mostly sleeping through the night. I wake when DH comes in, gets up several times to use the bathroom, etc. I am no longer getting up several times to use the bathroom. When I do wake, I can almost always fall back asleep. I've gone from sleeping 12-13 hours the first week on the machine to sleeping 8-11 hours. Some nights I've only had 7-1/2 - 8 and still done okay the next day.

Anything else that I need to tell him; bring; ? Anything I need to ask the doc? It's my bedtime and I just don't feel prepared for the appointment tomorrow. That's mostly my fault for getting so caught up in the quilting, and not getting myself prepared.

Any advice is welcome!

[cflame1]

take the reports with you

[avi123]

I am in a similar situation as you. My sleep study was on 10/17/2010 and I have an appointment with the sleep doc on Jan 28. I would be careful about telling the Doc that I changed the pressure on my own. I would say that I did it by mistake.

Has your Vibratory Snore gone away by raising the pressure from 7 to 8? I would talk to the Doc about it.

I would take the CPAP with me to the Doc in the case that he/she wants to get more data from it or set it up differently.

As to asking the Doc for another Rx to take to another DME I would make sure that it's written in the correct medical language.

pss, give the Doc one of your quilting as a gift!

[DocWeezy]

Don't be nervous about having changed your pressure--you are simply taking control of your own treatment. If your doc gets upset about this, it is either time for a very honest discussion about what you expect from him and how you are going to be proactive and in control of your own treatment....or time to find a new doc.

He should be pleased to have a patient willing to do the research and track data!

From one quilter to another....stick to your guns about taking control, because it is YOUR life and YOUR OSA therapy. Anyway, if you had to wait for a doc to adjust your pressure and tweak your settings for optimal results, you'd still not have enough energy to be quilting! And THAT is important!

Weezy

[rested gal]

From what I've read in past posts on this board, it's not at all unusual for a sleep doctor to raise the pressure a couple of cm's from what he/she originally prescribed if the person's treated AHI was a little too high, or...even without looking at any data and just going by what the person says during the appointment. Raising it without another sleep study.

I really don't think there's a single exact pressure number that is necessarily "it." After a sleep study titration finds a pressure that seems to eliminate apneas (mainly) and hypopneas and residual snores, it doesn't mean that ONE pressure is PERFECT. Presumably it was the correct pressure for that titration time, and may very well be as good a pressure as needed for a long, long time. It also could be that if the titration had taken place on a different night, or with a different tech running it, or with any number of other factors, a different pressure might have ended up being prescribed.

Unless there's something extremely unusual about a patient's condition and other health issues, I doubt if any good sleep doctor would think there was anything particularly wrong about using one or two cms more pressure than what the sleep study came up with. If this doctor is worth his salt at all, I really don't think he'll be one bit concerned that you raised the pressure another cm on your own.

Just about the only reason I can imagine a sleep doctor frowning about your raising your pressure one dinky little cm would be if he/she has a god complex and wants passive sheep for patients. A good doctor with a healthy ego should appreciate seeing an intelligent patient taking reasonable initiative in their own CPAP treatment.

Heaven knows doctors see a ton of "cpap dropouts." I think your doctor will be pleasantly surprised you're working diligently at your own treatment and will encourage you to keep doing so.

[monica4patience]

Thanks for your help! The appointment went well. Sleep doc was impressed with my journal and my knowledge! Was pleased that I was in control of my treatment. Said it looked like I didn't have a problem with compliance.

Turns out that my apnea is on the severe scale with an AHI of 45; although my airway gets clear at a rather low pressure of 8.0.

I got a list of local DME's to check out for supplies. Also got my Rx. So I'm a happy camper.