AB friends -- help me fire my sleep doc?

[cathyf]

Thanks, guys, this has been really helpful.

I think that everybody who has said "you need to figure out what you want" has been dead on. Cpapian -- you are right. The rambling story about my family isn't useful. Yes, it's how I got there, but how I got there isn't important to anybody else, only where I got to.

There are two things I think I want. #1 is to simply administrative -- to inform them that I am using the vauto and give them the serial number so that they can monitor that I'm using therapy since I'm not using my autoset that they have in their records. (I brought a copy of my vauto data card to the DME last weekend when I picked up a mask, so they have been informed, too.) The other is to request evaluation for Idiopathic Hypersomnia and Narcolepsy Type 2 because I have a strong family history of it.

The other two things -- the explanation of cervical collar use, and my complaint about how they analyzed my machine data -- ok, yeah, I put that in because they P*ssed me off with their snarky attitudes. This communication isn't the time/place for that. (kvetching about idiot sleep doctors is our niche over here on Apneaboard )

So here's a "just the facts, ma'am" version:

1) In my initial consultation with Dr G., he noted “CNS hypersomnia unlikely.” In fact I have a strong family history (two 1st-degree relatives and two 2nd-degree relatives) of idiopathic hypersomnia / narcolepsy type 2, or at least something that looks very close to it.. If IH/NT2 is relevant to my sleep problems, I would like to be evaluated for it.

2) In early July I bought a used AirCurve Vauto from a seller on Craigslist. The serial # is [] and I have registered it to my ResMed MyAir account. The pressure support of 4 has virtually eliminated my flow limitations, and the pressures rise only a few times very briefly to stop any that do occur. The Vauto treats my sleep-disordered breathing far better than the Autoset does.

Settings:

• Mode = VAuto
  
• Max IPAP = 25.0
  
• Min EPAP = 4.0
  
• PS = 4.0
  
• Ti Max = 2.0s
  
• Ti Min = 0.3s
  
• Trigger = Med
  
• Cycle = Med
  
• Mask = Full Face
  
• Ramp Time OFF
  
• Climate Ctrl Auto
  
• Tube Temp Auto
  

30-day sleep report:

• Avg. Usage = 6.5hrs
  
• Used Hrs = 193.4hrs
  
• Pressure = 11.0
  
• Exp. Pressure = 7.1
  
• Leak = 5L/min
  
• Vt = 400ml
  
• RR = 12
  
• MV = 4.9L/min
  
• Ti = 1.6s
  
• I:E = 1:2.2
  
• Spont Cyc = 95.5%
  
• 95th %tile Flow Limit = 0.01
  
• AHI = 0.9
  
• Total AI = 0.8
  
• Central AI = 0.2
  

My sleep doctor is a neurologist. Probably before I fire him I should at least give him a heads up that I might well have a neurological sleep disorder totally separate from sleep-disordered breathing. If he's still not interested, then, bah, I'm better off with my PA.

The 3rd thing that I want is a prescription for a new vauto paid for by my insurance. I'm not sure if there is any way that I'm going to get that, of course. Alternatively, I'd take a new autoset-for-her with RERA detection. I'm game to try a different autoset on EPR of 3 -- perhaps one of the other variations on a modern Air10 works more like a vauto with PS of 3. My experiments with PS of 3 was that it wasn't as perfect-for-me as 4.0, but nonetheless pretty darn fabulous.

Any thoughts? Is this better?

[SarcasticDave94]

Sure give it a good try. See what happens. If there's no pulse with Dr. Gimpy during and after this, fire and give primary a chance, if said primary is a good one.

[Sleeprider]

Please be sure to emphasize that the Vauto is allowing you to sleep much better and live without the symptoms of fatigue etc you suffered with CPAP use. This is the rationale for continuing VPAP therapy in place of CPAP, is that you are intolerant of CPAP therapy. You can add that the way you feel is confirmed by the machine data which shows improvement in efficacy and flow limitations and anything else you see.

The point needs to be to redirect your therapy on a permanent basis to VPAP. Ask for a prescription for the Vauto which you have demonstrated to have significant benefits to you. That puts the ball in his court to support your needs or fight with you. If he chooses to fight this in spite of the benefits you are reporting, the firing is the only alternative.

[Cpapian]

Continuing to play devil's advocate here ....

I would begin your points with what you want. I.e. I would like to be evaluated for ..... then the rationale for the action. Advantage is that when you Dr reads your letter they know what is expected and can then read it under that lens.

In your first point you vaguely mention sleep problems. I think that needs more clarity. Perhaps an introductory paragraph explaining why you are writing your letter

I.e. after seven years of fully compliant treatment for sleep apnea, I still have unrefreshing sleep and experience regular periods of daytime sleepiness. This has negatively affected my quality of life and has driven me to investigate and learn more about my specific issues ...... as such I would like you to consider the following requests (I just made this up for illustration only)

Then, I think your request for titration and rx for a vauto should follow.

It's too bad you told them you bought a vauto, better you said you borrowed it.

After seven years you are certainly due for a new machine. So your request could start by identifying it is time you received a new machine..... then explain the vauto superior response and perhaps a statistic (made up because 80% of all statistics are made up ? ) like ...... resulting in 70% better sleep and daytime wakefulness. Don't be afraid to say what you want. You want to live your life as best you can and as technology enables you to.

Then move onto your request for assessment of the neurological condition. Also to bring up, not only the famial connection, but to reiterate that despite apneas and flow limits being resolved there still is ....? (Problem)

Sum it up with a where do we go from here .....(on your terms)

[cathyf]

Ok, so here's my latest version:

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

1. Since July 6th I have been using a AirCurve VAUTO bipap, and it is significantly better at treating my sleep-disordered breathing, at significantly lower pressures than the Autoset. I have virtually no flow limitations while using it, and it stops the positional apnea “storms” that the Autoset has little effect on. I have been experiencing less daytime drowsiness and headaches, and fewer nighttime awakenings. Since I’ve had my Airsense10 Autoset machine since October, 2014, and it has almost 18,000 hours on it, it needs to be replaced. I would like for you to prescribe a ResMed AirCurve vauto for me as the replacement.
   
2. In my March consultation with Dr. G, he noted “CNS hypersomnia unlikely.” In fact I have 2 first-degree relatives and 2 second-degree relatives with varying degrees of hypersomnia, and I have many of the same symptoms as they do. If hypersomnia is relevant to the treatment of my sleep-disordered breathing, I would like to be evaluated for it.
   

The serial # for the vauto is []. I believe that you can get the detailed data from ResMed using the serial number. I have attached a PDF document focusing on data from several nights which illustrate how much better the vauto is at limiting flow limitations, events, and constant arousals that the Autoset does not completely treat.

I had an appointment with my PA on Saturday. She has already offered that she works with a couple of other sleep specialists and we can try them. (we were discussing the relative merits of a pulmonologist vs neurologist already). 

What I'm hoping for is that it's short and direct, and asks for concrete things. (I can save the kvetching for youse guys, LOL).

Do you think I've succeeded? Is it clear what I want? (This will be a MyChart message, and it takes attachments. For the PDF attachment I'm planning a series of OSCAR screen shots with captions.)

[SarcasticDave94]

I don't really know, but give it a try and see what happens.

Something I'd forgotten before, and I'm not sure of the source, maybe HIPAA, but the patient is permitted to submit requests to correct their own health file. Doctors must accept these at least as amendments or some such.

[SarcasticDave94]

PS here's an article on this FWIW

https://www.verywellhealth.com/how-to-co...rs-2615506

Verbatim quote

"How to Correct Errors in Your Medical Records
Mistakes can affect your health care and outcomes
By Trisha Torrey Fact checked by Dale Brauner on February 24, 2020
Table of Contents
Reviewing Your Records
Making Your Request
Your Provider's Responsibility
By law, you have the right to correct errors in your medical records. The Health Insurance Portability and Accountability Act (HIPAA) ensures that your medical records are private. Another important part of this law allows you to request amendments to your medical record if you find errors.1

This process for making this type of correction can be as simple as just letting your doctor know that something was recorded incorrectly so your doctor can change it.

But sometimes corrections aren't so simple, and you need to familiarize yourself with the rules for amendment of protected health information so that you can get the corrections taken care of.2

Reviewing Your Records
While many patients are not interested in looking at their own medical records, it is a good idea to do so. According to the Office of the National Coordinator for Health Information Technology, almost 1 in 10 people who access records online end up requesting that they be corrected for a variety of reasons.3

Some healthcare systems will provide you with a patient portal that provides easy access to all of your medical records within that system. Even if you don't have that type of access, you are entitled to look at your own medical records and obtain copies. Sometimes there is a cost for getting copies of your records.

Once you have your medical records, you can review them. If you see any inaccuracies, you can determine whether they are important and require an amendment.

Types of errors can include:

Typographical spelling errors may or may not require correction. For example, if mesenteric is incorrectly spelled "mesentiric," you might not go through the trouble of having it corrected because there won't be any impact on your health or medical care.
Errors in the spelling of your name do require correction because this can prevent your records from being shared properly among different providers, and it can affect payment for services.
If your phone number or address is incorrect or outdated, you'll want to make sure it gets corrected immediately. Failure to do so will result in the wrong information being copied into future medical records or an inability for your medical team to contact you if needed.
Any inaccurate information about your symptoms, diagnosis, or treatment should be corrected. For example, if your record says that you have temporal tumor instead of a testicular tumor, this is completely different and requires correction.
If the record says your appointment was at 2 pm, but you never saw the doctor until 3:30 pm, that may not have any bearing on your future health or billing information needs, and it isn't worth correcting.
Overall, you have to make your own judgment about which parts of your medical record need to be corrected if you find errors. If you are on the fence, it is better to correct something than to leave it incorrect.

Making Your Request
Contact the hospital or your payer to ask if they have a form they require for making amendments to your medical records. If so, ask them to email, fax, or mail a copy to you.

Sending in Your Request
Be clear, concise and write the correction exactly as you think it should be noted. The idea is to make it very easy for your provider's office to amend your records.

Make a copy of the page(s) where the error(s) occur. If it's a simple correction, then you can strike one line through the incorrect information and handwrite the correction.

By doing it this way, the person in the provider's office will be able to find the problem and make the correction easily. If they sent you a form to fill out, you can staple the copy to the form.

If the correction is complicated, you may need to write a letter outlining what you think it is wrong and what the correction is.

If you do write a letter, make sure you include some basics, such as your name and the date of service of your letter, then staple your letter to the copy of the page that contains the error.

Your Provider's Responsibility
The provider or facility must act on your request within 60 days but they may request an extension of up to 30 additional days if they provide a reason to you in writing.

Your provider is required to inform you that they have accepted or denied your request for an amendment in a timely manner. If you requested that other providers, business associates, or others involved in your care are also informed of the amendment, your provider must inform them as well.4

Your providers are not required to make the change you request. If they deny your request, they must notify you of their decision in writing and keep a record of your request and their denial in your medical records.

There are a number of reasons that your request could be denied. For example, some patients request that information about drug use, sexually transmitted diseases, violent outbursts, or other sensitive topics be removed.

However, most providers will refuse to remove this information because it has an effect on your health and medical treatment.

A Word From Verywell
Your medical record may appear complicated at first, especially if you aren't used to looking at medical records. But once you start to read it, you will begin to recognize the important features.

If you have any concerns, discuss the matter with your doctor's office–the vast majority of the time, you will get a speedy correction. If that isn't the case, you will need to follow the proper procedures to get things corrected, or at least considered."

[cathyf]

Ok, this is what I've got. Since I removed the ranting, there's no more "corrections" merely updates and clarifications.  Maybe they'll read the PDF, maybe they'll ignore it ?‍♀️

I would like to make some updates and clarifications to my chart.

1) Since July 6th I have been using a AirCurve VAUTO bipap, and it is significantly better at treating my sleep-disordered breathing, at significantly lower pressures than the Autoset. I have virtually no flow limitations while using it, and it stops the positional apnea “storms” that the Autoset has little effect on. I have been experiencing less daytime drowsiness and headaches, and fewer nighttime awakenings. Since I’ve had my Airsense10 Autoset machine since October, 2014, and it has almost 18,000 hours on it, it needs to be replaced. I would like for you to prescribe a ResMed AirCurve vauto for me as the replacement.

2) In my March consultation, you noted “CNS hypersomnia unlikely.” In fact I have 2 first-degree relatives and 2 second-degree relatives with varying degrees of hypersomnia, and I have many of the same symptoms as they do. If hypersomnia is relevant to the treatment of my sleep-disordered breathing, I would like to be evaluated for it.

The serial # for the vauto is []. I believe that you can get the detailed data from ResMed using the serial number.

I also have attached two PDF documents focusing on data from several nights which illustrate how much better the vauto is at limiting flow limitations, events, and constant arousals that the Autoset does not completely treat.

Here's the 2 PDFs...
https://www.dropbox.com/s/n3o7lix4d0v8cp...5.pdf?dl=0
https://www.dropbox.com/s/571gq32qjmz5e5...4.pdf?dl=0


Anybody have any thoughts?

[SarcasticDave94]

I may have missed it and if so feel free to disregard. There may be room to embellish on how the 2 machines feel, as in the VAuto feels better slant. Doc may get this better feeling perspective if nothing else.

[DaveL]

cathyf I had the sleep-doc-from-h*ll And my family doc ( who referred me ) didn't know how to follow up.

I fired the family doc (quack)

I went without a sleep doc for years and years. I bought used cpap ResMed S9 with almost no hours.

My only concern was, what would happen if I was involved in a car crash? So I set about finding a new sleep doc. He's pretty good.

But I don't need him much because the advice here has really improved my treatment.

Dave