03-28-2015, 05:01 PM
Greetings Fellow Papers,
Well I am coming up on my first follow-up appt since getting c-pap with my Dr. It is far later than his usual but it was the first the sleep clinic had.
I have seen improvements in quality of life, more and less, depending on day. I have days with great AHI's and days with terrible AHI's. I have some nights with Cheyne-Stokes respiration despite having no known heart issues.
I have centrals that usually exceed the OSA, and sometimes double the OSA.
On their own though, they aren't always over the treatment minimum for a different type of machine.
I expect the Docs look at the avg for each month or for the treatment period, is this so?
My avg the whole time is still over 5.0 after 3 months of perfect compliance and an avg of 8 plus hours a night on machine.
While I am improved greatly over what I was, is it wrong I want to get the BEST BEST levels and more the point CONSISTENCY, that I can?
I have a fear that the doc will be like "oh well, you're pretty good most of the time"...because he see's so many worse cases and so on. Is this likely? He's a lovely fellow and very patient and takes his time at least in the initial stage, no idea how he'll be for follow-up.
Do docs work hard to see patients reach their best? Or at least be always under 5.0?
I have no instructions that I know of, re bringing my card. I know he did ask the DME's to send him the first two months of reports, but my understanding is that those are very basic, not the graphs.
Any idea's what I should plan to ask, focus on etc? I have days still where I feel like I've not gotten refreshing sleep despite long hours asleep.
How do I prepare to get the most out of my appointment? What would you focus on if you were me?
I know that I don't like that each night is a real guessing game, will I have a good night or bad night? I can have the best ever AHI one night, and the next night, have my worst night since starting therapy despite not having any known interferers (ie no alcohol, no different meds, no stresses, etc) I have fairly good sleep hygiene. My room is always the same temp, my routines are the same, I avoid naps, I tend to go to sleep at same time and wake at same time except on Sunday when I must be up earlier. I wake without an alarm etc.
Any thoughts would be appreciated. It's not like I'm gonna be able to see him again in a few weeks...sigh.
The Manse Hen
Still very very happy to be treated vs not.
For insurance purposes, you want to establish both compliance and benefit from the therapy. The concern is a somewhat high residual AHI. Please don't call your periodic breathing Cheyne Stokes, or you will instantly lose credibility. That is a labeling problem by Sleepyhead and really should be changed in the next version since CS is a diagnosis of a specific type of periodic breathing.
I don't know what you can say. You have taken control of your therapy and optimized to the greatest extent possible with what you have. What do you think is missing? What would you like to improve?
I would tell the doc exactly what you posted above. If he ignores or brushes you off I'd be shopping for a new one. I agree with sleeprider on the Cheyne Stokes respirations mislabel. Best of luck at your appointment, please keep us posted.
I would take your SD card and some example graph printouts with you to go along with your explanation. Good luck Hen.
My advice is to write down what YOU want to accomplish in the appointment: Questions you have about the data you don't understand. Advice on pressures going forward. What specifically is HE looking for. What criteria will he use to measure the efficacy of your therapy and why is that the important metric. What should you ignore and why.
To me the important thing is to write it down, preferably typed out like an agenda and bring a copy for yourself and hand him one as you enter. Tell him this is what you want to ensure gets discussed.
Bring whatever data you think is significant to you.
Remember the appointment is for your benefit not his/hers.
I really don't know what a doctor is supposed to advise in the case that you are continuing CPAP for over 4 hours and do not have numbers below 5 consistently. Protocols are set up based on quantifiable evidence. So far, I am not sure there is any efficacy study for long CPAP use at AHI of 5-15 (mild) versus same for under 5, or under 1.
We are out here doing our best to explain what scenarios we have experienced and collectively spreading this information. As a result, we freely come to unscientific conclusions, have gut feelings and all sorts of suggestions [not condemning this, by the way]. It seems like a flood of useful information, as opposed to limited info from doctors. That's the nature of the beast.
I hope your doctor does have suggestions on how to improve your sleep.
But, the science says you have already made the most significant health shift just by going to CPAP, barring complications.
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
Dear Hen -
You and I are in the same boat or better yet on the same life raft. I too am roughly 96 days into this - that after a year or two of frustrated non results.
I don't understand much of the machine data and don't want to any more than necessary, but your descritption of doctor expectations and results are identical to mine.
While other forumites have technical or possibly medical advice I offer the following procedural.
1. ABSOLUTELY take your SD card and I suggest you lock it before handing it to the M.D.'s assistant just to avoid any accidental data clearance. As to reports, the assistant will provide the necessary report as the M.D. wants it, not yours. Do not pay any attention to data having been supplied by others such as a DME you mentioned - your card will provide the authorative data and is the same source they would use if they did provide anything in the first place.
2. Do not prescribe or diagnose - you might say that certain experiences or results "seem to ressemble" such-and-such disease but does he/she feel you should be concerned.?
3. As others have said, have a list in whatever form you prefer, of the items you want to cover in discussion - the MD's time is limited and he will promptly move on to another matter with someone else.
4. Verify with him/her your expectations - as you pointed out and I am also experiencing, he might not intend to examine mask fit or pressure settings etc., considering them below his horizon and if not, OK, to whom do you turn for review of such? - the DME? Your primary care...?
5. Lastly if you have an issue do not consider finding a new doctor, at least not at this point. Try to express your concern to make sure it is not a misunderstanding. If you do so abruptly, a) Your insurance provider might disallow your insurance claims or similar, and b) doing so will irreparably harm your relationship, and c) odds are you won't find a better result anyway DAMHIK!
I hope to see you back on our life raft soon.
I tried going back over some of your past posts and graphs on the site. You have overcome most of the obstacles to therapy in terms of comfort and have adapted well to the therapy. You appear to benefit in both quantifiable and qualitative ways from CPAP therapy. In spite of this, you have a relatively high AHI with an approximately equal mix of CA and OA events, and a small contribution of H. You were averaging up to 20 minutes in apnea per night. You never have posted really useful graphs. We don't know what your use of EPR is. The pressure flow graphs have been so compressed it is impossible to discern any correlation of events to pressure, snores, flow limitations etc. I have mentioned this in every thread in which you posted data, so I don't expect you to change now.
Your therapy results are "almost" acceptable, but do suggest that further improvements might be possible. The presence of a significant residual OA indicates a need for more pressure. The CA is not treatable with pressure, and we don't really know the cause of CA, however it might be related to sleep disruption, moving around while asleep or awake and other causes. Without knowing how your react to EPR, it's hard to extrapolate whether you'd benefit from bilevel therapy. That is a good question because for any number of reasons, you may need higher pressure differential IPAP/EPAP to support your respiratory function against OA, and encourage improved ventilation and prevent CA. Your Trigeminal Neuralgia may be a complication that further supports the benefits of bilevel.
Anyway, this appointment is an opportunity to discuss YOUR concerns. I think the residual apnea and total time in apnea are concerns as well as any sense you have that while you feel better, whether you also feel there is room for improvement. Doctors rarely engage patients in technical discussions of pressure and AHI, but yours might be an exception. Getting suggestions on any pressure range modifications, including EPR that might improve that and whether bilevel therapy could help improve AHI and time in apnea are valid questions. Otherwise, I'm pretty sure the conversation will be pretty much "how do you feel".
Ask him how he thinks the 9'ers will do this year. Yeah, that would be good.
(03-29-2015, 10:39 AM)retired_guy Wrote: Ask him how he thinks the 9'ers will do this year. Yeah, that would be good.
We really shouldn't hijack this thread, RetGuy, but in fairness, Hen needs time to do some homework before seeing the doctor and verify how some of them are breathing in jail or out on bail or what their AHI's are.