Follow-up Care after OSA dx? Is there such a thing?

Hi...I've written before so just skip this part if you remember it. Dx'd with Severe OSA 3-4 weeks ago. Used a hosptial affiliated sleep lab and had a good experience. They sent the results to my internal medicine doc who wrote the script for CPAP.

Sooooo, I'm using this CPAP thing set at 9. Without CPAP, I apparently have an AHI of 85, with 68 apneas and 168 hypopneas (that must be total for the 3 hours I slept, huh?) , 77 arousals per hour, 20 of those due to PLMD. Oh, and oxygen saturation goes down to the 50-s and 60's routinely.

So that sounds kind of pitiful doesn't it? Downright pathetic as a matter of fact. If I'm that abnormal, shouldn't somebody have mentioned some kind of followup? Have they just given me a machine and thrown me out there? I've no instructions for followup doctor visits, no advice to see a sleep specialist or pulmonary doc, no followup sleep study--is that normal?

Any advice for me? I'm just a little lost here.....what do other people do? Should I see a sleep specialist? The CPAP study showed good results, but the PLMD is still a bit out of control....and how do I know what is actually happening now that I'm not in the sleep lab?????

Jan in Colo.

Yes, I think that is normal. I got tested and they sent me an autopap 2 days later. At first I thought when they read my smart card they would be upset with me for adjusting it. Then after several attempts to get a detailed report, which it said I could get if requested, (in very sketchy print at the bottom of my sign in sheet), I realised they did not care about the card, and that no one was even going to read it. I called the sleep center lady and she said "YES, NO ONE IS EVER GOING TO READ THAT CARD." Actually, we were being kind of funny, I liked talking to her on the phone, but that was the truth. Nobody cared but me. I never got to see the card. I never did get detailed report. Oh well.
Also the report from my first study stated I had 0 plmd. The sleep tech said I had an extreme amount of leg movement. I think it was a typo, I asked about it, but it was never followed up on. Too bad since I could probably never be treated for it with that report. The follow up report after cpap stated that the plmd ceased with treatment. The second sleep tech said that also.
Welcome to the club.
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Jan.
Yes. You should have a followup meeting after your CPAP titration. It should be within 4-6 weeks ideally, just to discuss how you are doing with it and whether the doc or the tech can assist you with whatever the problems might be. It should be with a sleep specialist. However, in some places, those are few and far between so the primary doc refers you to a sleep center to be tested and the primary doc follows up with you. My referral to the sleep doc specifically stated "assess for OSAS and treat". So, they can't just pass me back to the one who referred me. Treatment means follow up appointments. I have had two follow ups so far with my sleep doc (after 3 months). Personally, I like the message boards. Experienced people who actually use XPAP treatment can help a lot quicker and the service is excellent
FF

Okay, I should take the bull by the horns and get a followup of some kind I guess.

Actually my neighbor is a pulmonary doc and he says someone in his practice is board-certified in sleep medicine. And my insurance basically lets me go anywhere I want (more or less). No referral necessary. So I guess I should call my neighbor's office and ask which guy is the sleep medicine guy, since I can't remember his name.

Don't jump on me for this...my husband is actually an ENT doc. But is kind of the situation like the cobbler's wife who has no shoes? He's thought for probably ten years that I probably had sleep apnea but he thought it would be a mild case (give him a break now! how many of his sleep apnea patients has he slept with????? He relies on the anatomy and the sleep studies to tell him what's going on and my anatomy is fine, nothing surgical needed).

And now that I have a CPAP machine, he thinks it is all taken care of. A done deal. Surgeons' minds think like that. Quick fixes. So he's not much help in the long-term management of this diagnosis. And I think he thinks if he ignores it, I'll just be healthy and average again, lol. Well, I think I'm healthy....just not particularly average. So, as you can see, you guys are a MUCH better source of information than he is, lol.

Okay, so I have a plan of action now. Thanks for the info.

Jan in Colo.

Jan.
I was thinking you would go back to the doc or outfit that tested you, but you certainly don't have to. If you go to someone new, just be sure you have your test results and can get the sleep lab that did the test for you to send over the detailed data to your new doc should that new sleep certified doc work with you. Good luck, Jan.
FF

give him a break now! how many of his sleep apnea patients has he slept with?????

ROTFL!!!

Although the...uhhh...personal touch hasn't helped you with your OSA in that regard, Jan, the personal touch of having a neighbor who's a pulmonologist and personally knows a board certified sleep doctor might just help you a lot!!

Yesssss...go to the doc the doc-neighbor knows. With all these people knowing each other (not talking carnally now! lol ) you might get far better service from a sleep doctor who will take a more personal professional interest in your case. Simply because you're a neighbor of someone he knows.

You've networked your way into a good thing! I think you're in luck now!!