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There, there, dear...Managing the sleep specialist at the first follow up
#1
There, there, dear...Managing the sleep specialist at the first follow up
I put a note into the nurse practitioner who is my specialist at the sleep center. I wrote that I was almost incapacitated with tiredness and that, from my charts, I was frequently having a hard time making breaths happen.

This is where I get "there, there, Dear." Don't you hate being patronized like this?  Thumbs-down-1

I have my first follow up meeting with her next week. She says we'll be talking about compliance, ramp (she's anticipating I'm being bothered by the assigned pressure), inability to wear a mask and steps to make that easier on me, how it's very normal to be having a hard time adjusting to CPAP, how I should practice using the mask when I'm awake, how at first you can be tired.... Perturbed

As far as I know, none of that is relevant.

What I do want to talk about is how much struggle I have breathing. Period. Evidence from SleepyHead. I am so tired, I'm close to falling over. I can't drive anywhere (I just tried and had to pull over to sleep).

Anyway, I could use some tips on how to zoom through the crap of the first follow-up visit and get the sleep specialist to focus on the real problem and do something about it.

What was your strategy? What worked, what didn't work?


Note: I am 100% compliant. Plus, I'm the patient from heaven. Hammer
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#2
RE: There, there, dear...Managing the sleep specialist at the first follow up
Being that you're after a ASV if I remember correctly? You are going to have to play their game right up to the point of getting them to sign off on it. Than you can walk away from them.
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#3
RE: There, there, dear...Managing the sleep specialist at the first follow up
(10-18-2017, 04:43 PM)HalfAsleep Wrote: I put a note into the nurse practitioner who is my specialist at the sleep center. I wrote that I was almost incapacitated with tiredness and that, from my charts, I was frequently having a hard time making breaths happen.

This is where I get "there, there, Dear." Don't you hate being patronized like this?  Thumbs-down-1

I have my first follow up meeting with her next week. She says we'll be talking about compliance, ramp (she's anticipating I'm being bothered by the assigned pressure), inability to wear a mask and steps to make that easier on me, how it's very normal to be having a hard time adjusting to CPAP, how I should practice using the mask when I'm awake, how at first you can be tired.... Perturbed

As far as I know, none of that is relevant.

What I do want to talk about is how much struggle I have breathing. Period. Evidence from SleepyHead. I am so tired, I'm close to falling over. I can't drive anywhere (I just tried and had to pull over to sleep).

Anyway, I could use some tips on how to zoom through the crap of the first follow-up visit and get the sleep specialist to focus on the real problem and do something about it.

What was your strategy? What worked, what didn't work?


Note: I am 100% compliant. Plus, I'm the patient from heaven. Hammer

I laugh when I read your posts, because you're like the female version of me Big Grin

That leaves me feeling fully confident you'll be able to re-agendize the meeting to discuss your core issues. 

I'd pay to be a fly on the wall.

Bill
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#4
RE: There, there, dear...Managing the sleep specialist at the first follow up
(10-18-2017, 05:01 PM)Walla Walla Wrote: Being that you're after a ASV if I remember correctly? You are going to have to play their game right up to the point of getting them to sign off on it. Than you can walk away from them.

I'd differ here. 

It isn't "their game" one wants to play if one wants an ASV approval, but rather focusing like a laser beam on the problems with CPAP/APAP therapy that are not being addressed.

You don't want to make enemies, but there is no way I'd have my ASV if I had not taken the lead in keeping the focus on CA events.

In my experience, one gets a different level of respect when one cuts through the patronizing spiel the therapist has probably delivered thousands of times and shows oneself to be an informed patient. 

Identifying the problem and asking for advice on solutions (knowing they will likely fail) are the ways to document the problems and move one towards the next step. It won't happen instantly (I expect) but better to lay the groundwork for the process IMO.

Bill
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#5
RE: There, there, dear...Managing the sleep specialist at the first follow up
(10-18-2017, 05:04 PM)Spy Car Wrote:
(10-18-2017, 04:43 PM)HalfAsleep Wrote: I put a note into the nurse practitioner who is my specialist at the sleep center. I wrote that I was almost incapacitated with tiredness and that, from my charts, I was frequently having a hard time making breaths happen.

This is where I get "there, there, Dear." Don't you hate being patronized like this?  Thumbs-down-1

I have my first follow up meeting with her next week. She says we'll be talking about compliance, ramp (she's anticipating I'm being bothered by the assigned pressure), inability to wear a mask and steps to make that easier on me, how it's very normal to be having a hard time adjusting to CPAP, how I should practice using the mask when I'm awake, how at first you can be tired.... Perturbed

As far as I know, none of that is relevant.

What I do want to talk about is how much struggle I have breathing. Period. Evidence from SleepyHead. I am so tired, I'm close to falling over. I can't drive anywhere (I just tried and had to pull over to sleep).

Anyway, I could use some tips on how to zoom through the crap of the first follow-up visit and get the sleep specialist to focus on the real problem and do something about it.

What was your strategy? What worked, what didn't work?


Note: I am 100% compliant. Plus, I'm the patient from heaven. Hammer

I laugh when I read your posts, because you're like the female version of me Big Grin

That leaves me feeling fully confident you'll be able to re-agendize the meeting to discuss your core issues. 

I'd pay to be a fly on the wall.

Bill

 Wave
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#6
RE: There, there, dear...Managing the sleep specialist at the first follow up
(10-18-2017, 05:15 PM)Spy Car Wrote: You don't want to make enemies, but there is no way I'd have my ASV if I had not taken the lead in keeping the focus on CA events.

In my experience, one gets a different level of respect when one cuts through the patronizing spiel the therapist has probably delivered thousands of times and shows oneself to be an informed patient. 

Identifying the problem and asking for advice on solutions (knowing they will likely fail) are the ways to document the problems and move one towards the next step. It won't happen instantly (I expect) but better to lay the groundwork for the process IMO.

Bill

Hope it works out this way. It sounds like her whole focus is on addressing non-compliance and difficulties on implementation. After I had already pointed out that I'm 100% compliant. This meeting seems like it'll be a total waste of time for me. Grrrr.....

I might have to let drop that I prefer to be addressed as "Doctor xxxx". Sometimes you gotta do what you gotta do....
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#7
RE: There, there, dear...Managing the sleep specialist at the first follow up
Treat them with respect.
Remember they probably see lots of folks that have no clue about what is going on.
Tell them your concern and what you see on the graphs, not just the data that they see.
Ask them if they would be interested in seeing the data that you see (bring your laptop) with Sleepy Head.

I went this polite/professional route with my doctor and he was more than happy to see what I was seeing on Sleepy Head and was absolutely amazed with the information it gives.   It gave him a new perspective on what is going on with my current therapy and now I wait for a more specialized doctors appointment.
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#8
RE: There, there, dear...Managing the sleep specialist at the first follow up
I am in Canada, so I know it is a lot different here.  What surprised me is when I brought him a downloaded list of every day with the machine, showing the settings,  the AHI the events by type, to show him how higher settings gave substantially better results, he looked at it for oe second and said it was raw data and he couldn't look at that.

I thought he would have asked me to go through it with him.  Nope. Raw data.

So my suggestion here is avoid raw data ...... they like it cooked Rolleyes
Sleep-well
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#9
RE: There, there, dear...Managing the sleep specialist at the first follow up
Well, it is true that you may be more tired at first. So I'd give her that one and don't let her waste any of the precious appointment time on it.

Bonjour gave me this advice, which I'll copy here for you:

Quote:Show a detailed segment (2 minutes) around a CA event, ask what do you think of this?  Do the same for some of your complex apnea.  Again for any other trouble areas.  Show the basic Daily charts, Events, Flow Limit, Snores, Flow Rate, Leak Rate, AHI, Pressure.  Remember that you want to treat this aggressively because I'm tired of feeling tired, mention that.
State your goals.  One of mine was to get a BiPap/BiLevel because my pressure was running to 18-19 (auto machine) and was beginning to show signs (noise) of failure.  I now have an AirCurve and an Rx of 21/25.  She said we could tweak it down later if needed.  (I did it before seeing her for a followup.)

Having the laptop helped me with my recent visit to the new doctor. It gave credibility, seeings as how my 'story' was confirmed right there on the screen. I do regret not having printed out a summary though. Cpapian is right, they do like it cooked, although my doctor had no qualms about looking at the raw data too.

Head her off at the pass (politely) by telling her of the approach you've taken; what you've already addressed. At least that will shorten that part of the discussion.

Then, yeah, it's all about the laser beam focus on your goals and your agenda. Somehow I think you'll do just fine.
Eat-popcorn
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#10
RE: There, there, dear...Managing the sleep specialist at the first follow up
(10-18-2017, 07:09 PM)kiwii Wrote: Well, it is true that you may be more tired at first. So I'd give her that one and don't let her waste any of the precious appointment time on it.

Bonjour gave me this advice, which I'll copy here for you:

Quote:Show a detailed segment (2 minutes) around a CA event, ask what do you think of this?  Do the same for some of your complex apnea.  Again for any other trouble areas.  Show the basic Daily charts, Events, Flow Limit, Snores, Flow Rate, Leak Rate, AHI, Pressure.  Remember that you want to treat this aggressively because I'm tired of feeling tired, mention that.
State your goals.  One of mine was to get a BiPap/BiLevel because my pressure was running to 18-19 (auto machine) and was beginning to show signs (noise) of failure.  I now have an AirCurve and an Rx of 21/25.  She said we could tweak it down later if needed.  (I did it before seeing her for a followup.)

Having the laptop helped me with my recent visit to the new doctor. It gave credibility, seeings as how my 'story' was confirmed right there on the screen. I do regret not having printed out a summary though. Cpapian is right, they do like it cooked, although my doctor had no qualms about looking at the raw data too.

Head her off at the pass (politely) by telling her of the approach you've taken; what you've already addressed. At least that will shorten that part of the discussion.

Then, yeah, it's all about the laser beam focus on your goals and your agenda. Somehow I think you'll do just fine.
Eat-popcorn

Thanks

Problem is, I'm not just a little more tired. I am falling down exhausted. It's 8:30 pm, and I'm ready for bed.

SleepRider has given me some bullet points, so I think I'll start with those, but the tone of this interaction is likely to be grrrr....

And yes, I do understand that all day long they meet with people who are non-compliant and they have to coach. That would not be me.....
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