AB friends -- help me fire my sleep doc?

[cathyf]

Ok, maybe this isn't exactly me firing him, maybe it's more me trying to light a fire under him. Although when they read it I expect that the most likely response will be to ignore it, and the less likely response will be for them to fire me as a patient!

I decided to format this as a correction to my chart, as that is something that they are specifically required to pay attention to, and the notes that they are making in my chart are what are making clear that they are not really paying attention to what I've been telling them and certainly not paying attention to what my cpap machine could tell them.

I would welcome any editorial advice from you guys!

I would like to make several updates, clarifications, and corrections to my chart.

1. In my initial consultation with Dr G., he noted “CNS hypersomnia unlikely.” Having never heard of CNS hypersomnia, I did some research and found the Hypersomnia Foundation http://www.hypersomniafoundation.org/classification/, and I believe that my father ought to be evaluated for what seems to me to be a classic severe case of NT2/IH. (He won’t, though, as he is 85 and stubborn and has lived with this successfully for 85 years.) And I, my brother, and 2 of my brother’s kids have some more moderate form of what in my family we refer to as “The Family Sleep Gene”. (For example, when gathered for a family holiday, my father will spend 50-80% of the gathering asleep in a chair, couch, etc. The other four of us will each doze off for a few minutes at a time and a couple of times. All five of us will doze in meetings, classes, lectures, movies/plays/concerts/etc., in the car, etc.) None of us have ever been formally diagnosed with any of this, but I think that it’s at least worth considering whether I do have some sort of hypersomnia which is complicating whatever else is going on with my sleep. (None of this is asked about in the history questionnaire. I might have figured out this connection earlier if I had been asked.)
   
   
2. For the nearly seven years that I have been on APAP therapy, every breath I take while asleep has been flow limited to some extent, and my ResMed Autoset has spent every night chasing those flow limitations. When examining my flow rate curves, and the flow limit scoring that the machine records, it behaves just as the ResMed patents explain that it should, raising pressure in response to the observed flow limits. After doing some research, I added pressure support in the form of an EPR of 3 in late March and that helped some, but it was only marginal improvement. The flow limits seem to be associated with arousals throughout the night. (See June 19th for a series of particularly severe and long-lasting examples.)
   
   — In early July I bought a used AirCurve Vauto from a seller on Craigslist. With pressure support set at 4 the Vauto has almost completely eliminated my flow limited breathing while asleep, all at much lower pressures than the Autoset would travel to. The 95th percentile of flow limits over the month that I have been on the vauto is 0.00, while the 95th percentile of flow limits over the years on the autoset is 0.18, and with the vauto the number of awakenings (as shown by my fitbit) have also decreased somewhat. Or, shorter, the Vauto is an unequivocal cure for my flow-limited breathing. 

   To get the data from ResMed off the Vauto, you will need the serial # [---].
   
I have also placed images of my data cards & pulse-oximeter recordings in my dropbox:

   vauto: [dropbox url]

   A10: [dropbox url]

   pulse-ox: [dropbox url]
   
   
3. I discovered the importance of neck alignment in my positional apnea in late March, and I have been wearing a cervical collar to sleep in ever since. On a few recent occasions that I have fallen asleep on my back without the collar but with the cpap machine I have experienced severe storms of apneas. May 20th is a particular strong example: between 12:27am and 1:13am I had 47 OAs and 3 hypopneas, an AHI of 65 for those 46 minutes, with total time in apnea of 20 minutes, and multiple desaturations below 90%. (The cpap pressure is always pegged to the max during one of these storms.) These “storm” episodes are scattered throughout my whole 7 years of Autoset use, and I believe that they have always been caused by a “chin-tucking” posture that is very hard to avoid when sleeping on my back unless I wear the collar which prevents it. My April sleep study had that pattern as well. These catastrophic storms of apneas result in severe headaches in addition to noticeably more severe sleepiness the next day. Ms Holmes’ note in my chart “Notices a headache the following day if she does not use her CPAP and with the cervical collar,” makes this sound like I’m guessing what happened. I’m not guessing — I have examined the data that the machine records and I know what happened.
    
   
4. Dr Z’s June 21st analysis of the data from the Autoset only discussed summary data, and that completely missed the apnea storms because they were averaged away. That analysis also ignored entirely my severe problems of flow limitations which drive up the pressures on the autoset and caused awakenings throughout the night. The frequent arousals are obvious by visual inspection of the detailed data, but aren’t going to show up in any summary data coming from my cpap. (The 2014 version of the Airsense 10 does not do RERA detection.)
   

I'm also planning to attach a PDF document with selected annotated OSCAR screen shots.

--- so what do you think?

[SarcasticDave94]

It might work, but it sounds like doc has an ego and won't even bother. Saying this as I'm sure you've tried to get action and treatment before...

Similar to getting sleep studies, PAP scripts, etc. try your primary doc and give this doc gimpy or whatever his name is the short version of your letter but edited slightly to my editor version. Feel free to quote me word for word. It's free. Here it is.

"Doctor Gimpy you're fired. Bye bye."

Why say that, Dave? You're not getting anywhere, past, present or future, basically forever with gimpy. Just be polite and cut off boat payments and at least your headaches get a bit better. Practice saying that phrase a few times, you'll feel better already.

[Sleeprider]

Spittin' into the wind. I think if you're going to bother to write, make your complaints clear. Your doctor doesn't value your input, and this letter is just more input he doesn't care about.

[factor]

I would just ask you.  Serious question not being funny.  What do you think he will say?  If you think he is already open to it.  He will take it well.  If you already have a feel for his demeanor you are already correct about it.  If you have a bad feeling at all you should start looking..

A doctors demeanor (Bed Side Manor) is very important.  The very first time I go see a new doc I only judge them on their attitude.  I use the talk test.  I talk to them about my medical issues, I also ask them about football, where they are from, how many kids do you have, where they went to school, and other general NON medical stuff.  I have had some that sit and talk.  Other just get up and end the convo quickly and leave..  The ones that won't talk or seem nervous to leave I don't go back.  I keep looking.  

I mean if they wont talk about (enter you sport here) football...what good are they..

We make finding a doctor too complicated.  If you dont like them you dont like them...

[OpalRose]

Believe me, he'll roll his eyes as he's reading, that's if he bothers to read it in its entirety.

Most "so called" sleep doctors only do this as a side "gig" to whatever their profession is.  My doctor is a Pulmonologist and sleep medicine is an extra for him.  He listens to me half heartedly and after all is said and done, he scratches his head and reverts back to my AHI being under 1.  He doesn't see any issues, therefore I have nothing to complain about.

He does, however love to talk about himself... his diet, his retirement plans, his dog...

[theunk]

What exactly are you trying to accomplish? I think most of us start to realize that our sleep situation is very unique. At best you get diagnosed early, get the correct therapy, then reach out to sites like this to gain further insite. Without parking you in a Level 1 poly chamber every night for a couple of weeks, no one can can come close to understanding what you are experiencing - at a level they can relate to. Even then, the impact of any activity in your external sleeping environment cannot be duplicated or evaluated. 
The best I can expect from my MD is acknowledgment of my condition, maybe one more sleep lab experience before I cease needing air at all. I finally have a new pulmonary specialist and my first assessment was via telephone. He confirmed that he was certainly available if I noticed any significant changes, but for now my data suggested I was coping well with current therapy. 
You have more real time knowledge of your condition and you appear to be on top of your situation. Like me you can post real time experiences on this and other forums and get real time feedback. I am quite sure there are some truly engaged medical professionals participating. The minute you start telling your professional how you should be treated is the minute you no longer require his/her services. Should something serious change make sure you have a contingency.
Don

[Crimson Nape]

Ask yourself just how much do you contribute to his/her total income.   I'm willing to bet that the doctor is financially able to tell you to take a hike. In order to get his attention, you need to target one or both of his "weak" spots, Licensing and/or Finances.

Wishing you the best in your effort.  Good luck!

[Cpapian]

I'll come at this from an editorial perspective....What do you want from him? Because that wasn't clear to me.

First, I respectfully disagree with Factor. I accept that time is money for a doctor and therefore don't expect or engage in small talk. To this end, I try to get to the point quickly. IMO this improves compression.

Eg .... I am concerned about my lack of restorative sleep and the negative impact on my life. As such, I have endeavored to understand my specific issues and to help myself. I have managed a few tweaks that have been successful. To further my improvement I would like you to consider the following:

Your first point goes on at length about family members, which confused me until I got to the end. I doubt a doctor would have the patience to get that far. Start with what you want .... then explain why you think this may be the missing part of your diagnosis and path to refreshing sleep.

Eg..... I would like to be evaluated for xx. After researching and observing family members I believe I may have xx

Your second point, I don't see where you want anything. Do you want your file to be updated to indicate you use a vauto?

Same for third and fourth points ...? What do you want to happen?

If you use Microsoft Word it has a feature to analyze the grade level readability of a document. The lower the grade the better the readability. Usually short sentences improve readability.

Anyways, I hope this is helpful to you. I understand you pain.

[mrmagloo]

I tend to agree with the others.... If you feel that he is doing that poor of a job overseeing and managing your health, I wouldn't put a single second of effort in trying to improve the bozo. The things you are referring to as failures are personal value attributes that seldom can be positively affected. He obviously doesn't care.

I would immediately find another doctor. In my case, I felt the same about my 'Nationally Recognized' Pioneer in the industry and fired him 15 years ago, when I found him to be more of a hinderance than a help, and was only looking at my AHI and compliance. Any frigging idiot can do that, so why put my health in his hands. I want someone who feels compelled to encouraging an open discussion all variables, or concerns I might have without getting the sense that my input is irrelevant.

Your health should be a joint effort and partnership. Vote with your dollars.

[Deborah K.]

I agree with Dave:

                  "Doctor Gimpy you're fired. Bye bye."

I wouldn't waste another minute on this guy.