In a word, my new sleep doc is...

[BleepingBeauty]

awesome!

I met with her this morning. She took about 30 minutes, before calling me into her office, to carefully read the four sleep studies I've had done already. I had a list of about ten questions I intended to ask, but she answered nearly all of them before I had the opportunity to pose them. My first impression: Extremely thorough, with an eagle-eye for detail.

She asked why I was seeking her help, having been on therapy for 18 months already. I told her I was dissatisfied with my previous doctor's approach to treating me, that the quality of my sleep hasn't improved enough and I'm still tired on a daily basis, that I'm seeking her help in determining what my treatment plan really should be. She applauded my compliance and was sympathetic to my concerns. She also said she hears this same complaint too often from her patients. (Pretty sad state of affairs.)

She asked me if anyone at my previous doctor's office had ever gone over my sleep studies with me in any detail. (No.) She asked if anyone there had ever mentioned CompSAS to me. (No.) She asked if anyone had ever mentioned the high leak rates on the first three (of four) autopap trials I've done in the past 18 months. (No. I wasn't aware of the leak rates until I got my records a couple of weeks ago, but the high numbers stood out to me immediately. The most recent trial shows much lower leak numbers because I was finally wearing a chinstrap.)

I told her I'm not satisfied with having been kept in the dark as to how my therapy is progressing and that I want and need to be involved from now on. I'll go where she tells me to go and I'll do what she tells me to do, because I value her education and her expertise, but I want to be in the loop and work with her. She believes her patients not only have the right, but the responsibility, to know what's happening with their treatment plan. "It's your health, it's your treatment. You should know what's going on." (Music to my ears.)

She mentioned some concern over my oxygen desat numbers, and we talked about the possibility of a pulse oximeter in my future; but that's something to pursue a little further down the road. She also mentioned the altitude issue and would prefer to set up a new sleep study nearer to where I live (elev. about 5,000 feet; her office is at 1,100). But she's not familiar with many labs in my area and is more confident about dictating the circumstances of the new study at one of the labs she deals with regularly, so that she can find the answers to the questions she has about my situation. She's setting me up at a lab where she knows they're highly skilled at titrating someone with possible CompSAS. I should hear from the lab re: scheduling within a few days and hope they'll be able to get me in soon. Then I'll schedule a follow-up with the doctor, where she'll go over all the detailed data with me and explain what it all means.

I asked her about a PFT, and she said that's something we'll deal with later, if need be. She listened to my lungs and said they sound clear. She asked about upper respiratory issues I might have, and I told her I experience some nasal congestion at times, due to what I think are newly-developed allergies, but I never wheeze or anything like that. So that's on a back burner, for now.

She was the first to mention ASV machines. I asked if she had a preference re: ResMed or Respironics with respect to the A10 algorithm in the ResMed machine. I think she was impressed that I was aware of that (thanks to this forum), but this is also something we'll discuss later, if/when CompSAS is confirmed as my diagnosis.

I can't begin to express how impressed I was with her and how relieved I am to now be under her care. I thanked her more than once for taking me on as a patient, and she said she's excited to work with me. She loves a challenge, and she said mine is a challenging case. (My mother would probably agree with her on that.)

I'm happy to have joined the ranks of others here (like robertmarilyn and saltlakejan) who have finally found the right sleep doctor. What a blessing that is.

And I'm so grateful for the advice and information I've received from all of you (directly or indirectly, by reading others' posts), which helped me realize just how bad off I was before and how much better off I'll be now. Thanks, all.

[kopoloff]

Fantastic. There should be more like her. Best of luck

K

[sagesteve]

YEEEEEEEEAH!!! This sounds like the one. Interesting that she mentioned the altitude....duh! PV was way up from where you are and you would have thunk they would have compensated etc. etc. ( past history now). I think this is FANTASTIC news. Gee, you may actually get some sleep soon. She sounds wonderful. I'll talk to you soon. Take care.

[DoriC]

BB, thanks for that very informative update. It gives me hope that perhaps there are more Drs like that out there. Our Dr is just so-so and I get most of my help right here . I'm impressed by both you and your new Dr. Good luck.

[BleepingBeauty]

Thanks, you guys (and gal).

I'm still tired, but I'm smiling and hopeful now. It's a relief to feel like I'm in very competent hands. When we were parting, I asked if it was overly optimistic for me to look forward to a new beginning in about a month's time, and she indicated that the timeframe was realistic. I can deal with my current sub-optimal treatment for another month. (What's one more, after the previous 18?)

So I'm done kicking myself in the butt for waiting so long to make this change. It was long overdue, but better late than never.

[robertmarilyn]

Thanks, you guys (and gal).
I'm still tired, but I'm smiling and hopeful now. It's a relief to feel like I'm in very competent hands. When we were parting, I asked if it was overly optimistic for me to look forward to a new beginning in about a month's time, and she indicated that the timeframe was realistic. I can deal with my current sub-optimal treatment for another month. (What's one more, after the previous 18?)
So I'm done kicking myself in the butt for waiting so long to make this change. It was long overdue, but better late than never.

So glad you have found a doctor to work with you. My new sleep test/day test isn't until June 2 but I don't mind waiting for it when I know the doctor is going to do it right and thoroughly. We will feel better

mar

[SaltLakeJan]

Hi Beauty:
I followed your doctor/DME struggles. Thought their attitude was unprofessional!!! I was fascinated by the entire saga, but you were feisty all the way - good for you.
I put in my post today that I had followed your experience - I have to admit it, I was addicted to the drama. I was in awe of all the "Pros" helping and encouraging you. I added to my surprise, I am now the beneficiary of their generosity.

I was reviewing post just before I closed up for the night, when I notice your post I had to check it out. Your new doctor sounds like she will be a "Winner" You deserve it.

Jan

[BleepingBeauty]

So glad you have found a doctor to work with you. My new sleep test/day test isn't until June 2 but I don't mind waiting for it when I know the doctor is going to do it right and thoroughly. We will feel better

mar

Thanks, mar. I hold the same sentiment for you (and anyone else here who's struggling). We'll get there.

[cflame1]

That's great BB

The right sleep doc makes all the difference when you're having problems. I know that I really like mine.

[BleepingBeauty]

Hi Beauty:
I followed your doctor/DME struggles. Thought their attitude was unprofessional!!! I was fascinated by the entire saga, but you were feisty all the way - good for you.

Hi, Jan. Yeah, "unprofessional" pretty much sums things up! The statements and behavior of the Clin. Dir. left me scratching my head on more than a couple of occasions. But as I think I relayed in that thread, when someone pushes my buttons in a big way like that, rather than retreat, it prompts me to fight back harder.

I can't help thinking of the scene in Mommie Dearest when newly-widowed Joan Crawford is being pushed out of Coca Cola by the Board members. She listens to their b.s. and then says, in no uncertain terms, "Don't f*ck with me, fellas!" People have always said that my mother looks like Joan Crawford. (Thankfully, she doesn't act like her!) Maybe that's where I get my feisty attitude.

I put in my post today that I had followed your experience - I have to admit it, I was addicted to the drama. I was in awe of all the "Pros" helping and encouraging you. I added to my surprise, I am now the beneficiary of their generosity.

Likewise, I've been following both your thread and mar's. The folks here who really know what they're talking about when it comes to complicated situations like ours, who so freely offer their expertise and advice, are incredibly generous with their time and knowledge. Sometimes, the explanations given are difficult for me to understand, as a layperson; but that just prompts me to ask more questions and/or do more research. Knowledge is power, and it's all good.

I was reviewing post just before I closed up for the night, when I notice your post I had to check it out. Your new doctor sounds like she will be a "Winner" You deserve it.

Jan

Thanks. I consider myself very lucky to have found her, and I wish the same for anyone else who's struggling with their care and treatment. I'll keep following your progress (and mar's) as I continue to learn from others' experiences here.

[BleepingBeauty]

That's great BB

The right sleep doc makes all the difference when you're having problems. I know that I really like mine.

Thanks, cflame. I'm very happy to have joined the ranks of the "satisfied" and am looking forward to having a life again.

[DyannaK]

This is wonderful news I hope things continue to go well for you

[BleepingBeauty]

This is wonderful news I hope things continue to go well for you

Thanks, Dyanna. I like your sig, btw.

[dels]

thats really wonderful!

[JoyD.]

.
Beauty,

I've also been following your saga and Mar's & Jan's), and have been rooting for you all!

All I can say is . . . FABULOUS! Sounds like you truly have found a GEM of a sleep doctor. Now it's UPWARD AND ONWARD to a new life of satisfying sleep I do believe she will get to the bottom of things and get you the sleep you've been yearning for.

And thanks too for the personal involvement of cpaptalk forum members who have stayed with the forum years past their own needs . . . to continue to help others! Perhaps someday we can "play it forward" too.

Joy