Told to not mess with CPAP settings by PCP

[withtao]

On the other hand, my BPAP care is managed by my primary physician (Internist) and I make pretty much all the decisions. If an individual shows up and seems to have a good understanding of their health and therapy, the doctor's proper role is to be a consultant and advisor.  I would not last long with command and control care.  I will say, if you ask for advise or suggestions from this forum, you will not only get that, but also a rationale, and possibly references to back it up.  For the most part, we give deference to medical professionals, but have seen many gross errors, misfeasance and malpractice over the years where we saw no alternative but to advise a member to make changes in their medical team.

When I asked my PCP if I could work with a RT to come up with the best settings she told me that the new machine will come set up and I am not to touch it i.e. totally rely on someone that never met me or know my current apnea situation with setting up my new machine.  I spoke with a RT at the DME last week telling him I discovered my current machine was set a CPAP vs APAP and I'd like to use the findings of my recent sleep study to tweak my settings.  He said "You're not supposed to do that 'wink, wink' and what I wanted to do made sense.  So, DME RT cool with it, PCP not cool. This ain't healthcare, it's do as I say regardless of what I say.

[withtao]

Don't be surprised if that doctor says don't change settings but it's working so I'll change your prescription.

The medical team, RT, nurse, st, etc cannot change your settings unless it is to match the doctors prescription.  You on the other hand can, scare tactics aside, but don't do so without an understanding of the potential impacts of the changes.  Know what you are changing and why and what you expect to happen.  If someone says to make changes and doesn't explain why, ask.

And no one mails every change, sometimes changes are made just to see how your body reacts. Or unexpected results occur.

I've been developing software for almost 50 years and have developed very scientific, logical analysis of a problem.  I am making small changes and patiently observing the results before making more changes e.g. raised start pressure for Ramp from 4 to 6 and switched from CPAP at 10 to APAP of 8-15 EPR 3,  which was recommended by my recent sleep study.  I'm already seeing positive results regarding events and also was able to correlate my LLs to when I change from one side to the other, which means I'm most likely awake when they occur and due to my N10 opening on the side as I get resituated.

My last 3 AHIs are; 1.13, 1.21, and .71.

Thanks

[APAP4ME]

I'm probably going to be in the same situation.  I started my APAP journey last fall after my wife (a registered respiratory therapist) got sick of my snoring and also observed apneas.  I visited my primary care physician ($40 copay) and told him that my wife suspected OSA and rather than send me to a sleep specialist in my insurance network, he sent me to an in-network pulmonologist.  I paid the specialist a $70 copay and he did nothing other than tell me that I need a sleep study.  I then went to see the sleep specialist and had a WatchPAT in-home study performed and then had to go back to the pulmonologist to have him read the sleep study report and order an APAP through a DME company.  This process began in the fall of 2021 and it took until June 22 to get my APAP machine.  With the suggestions of this forum, I have made adjustments to my machine settings and have still been struggling with CA events.  Unfortunately, I have a follow-up this fall with the pulmonologist and I suspect that I'm going to get yelled at for adjusting the machine by myself.  I know that he is simply going to look at compliance and AHI numbers.  My compliance has always been 100% but (on paper) my AHI was better at the doctor-ordered settings rather than the changes recommended by the forum.

[Brazen]

@APAP4ME
Personally, I wouldn't tell the pulmonologist you adjusted settings.  They are likely going to look at use compliance and AHI only and be satisfied. 
Keep asking for therapy review and suggestions here and try to be patient with the process. 
I am new to apap as well and it's frustrating to be doing what they told you would make you feel better and you're still not. I get it.

[Liteheart1]

When I asked my PCP if I could work with a RT to come up with the best settings she told me that the new machine will come set up and I am not to touch it i.e. totally rely on someone that never met me or know my current apnea situation with setting up my new machine.  I spoke with a RT at the DME last week telling him I discovered my current machine was set a CPAP vs APAP and I'd like to use the findings of my recent sleep study to tweak my settings.  He said "You're not supposed to do that 'wink, wink' and what I wanted to do made sense.  So, DME RT cool with it, PCP not cool. This ain't healthcare, it's do as I say regardless of what I say.

Glad that you are actively involved with your own health care and making knowledgeable choices. If I were in your situation I'd certainly explore other PCPs if you have that option. While sometimes hard to find, there are in my limited experience those that value a client's input and ?s and own research and treat you as a collaborator.

I have Graves disease - a thyroid auto immune condition, and several years ago was discharged/fired by an endocrinologist as I had provided feedback on my symptoms after he had doubled my medication and I had asked "wonder whether the change in Rx was too rapid?" He is well regarded nearly retirement age endo who teaches interns - at least I was able to let one intern know that who she was studying with was an (incompetent) ass. This endo had been recommended by my prior person as I was moving to a city 3 hours away. I did my own research and current person (trained in Ireland) has been an excellent listener and educator and welcomes me as part of team. My dosage has gone from the 70mg/week that the "ass" wanted to 15mg/week and my blood test scores are still in normal range.

In my turn to take action, I fired my urologist who was strongly recommending biopsy due to somewhat elevated PSA of 11.3 which certainly was concerning. I insisted on MRI which could find nothing suspicious. Thus I tried to discuss with uro that any biopsy would be a random sampling AND if it came back negative I expected that he would probably think that it had missed the possible cancer and want another biopsy within 6 months - he did not deny this. When I pointed out that his practice prided itself on their biopsy procedure with an extremely low "complications" rate and that while that was great I was not going to do a biopsy as the cost benefit equation didn't add up for me. I then fired him when he continued to insist. 6 months later and then 12 mnths later my PSA on retesting/monitoring had gone down to 9.4 and 8.7. My new uro is happy that I hav been using herbs and acupuncture.

I chose as my PCP a family nurse practioner - far less ego, knowledgeable and well connected should I need a referral to others. She has an open minded approach to health. I suggest to look and listen through the filters of CYA and watching out for very real issues of liability; and follow the money. Look for providers who are willing to CYA while winking like you found at DME. I expect you will be successful by being at the center of your own health care.

[withtao]

...
I chose as my PCP a family nurse practioner - far less ego, knowledgeable and well connected should I need a referral to others. She has an open minded approach to health. I suggest to look and listen through the filters of CYA and watching out for very real issues of liability; and follow the money. Look for providers who are willing to CYA while winking like you found at DME. I expect you will be successful by being at the center of your own health care.

We're in an HMO arrangement with large, well known hospital chain.  So, have to stay within its network and asking around would get back to current PCP.  Fortunately neither of us have any serious issues, so we do our own thing and only contact PCP to get blood tests  etc  that are covered under Medicare Advantage.

[Homerec130]

I feel I am very lucky to have a sleep doc who will work with me. The first time we talked about changes he asked me if I knew how to do it, if not, he would show me how. He also wrote my script so they DME folks could not change the machine remotely and that the mask, and hose length/type are at the patient request. Never had any problems with the script. He is also of the philosophy, if it is working, don't mess with it, and if you are going to make changes, make a note of what they were before the change in case it doesn't work. He also loves the info that OSCAR provides as it is more than he has in his office.

In a nutshell, there is nothing wrong with being informed and advocating for yourself.

[withtao]

You're very fortunate. We haven't come across many medical folk like that.

[EddyDee]

I'm very new at all this, and so far have gotten no direct input whatsoever from any medical professional of any kind. Just a sleep study and a referral to a DME who loaned me a machine for a week.

Now I need to figure out what to do next, and whatever it is I'll be on my own. This forum is just amazing, without it I'd be completely in the dark.

But something is bothering me: is it just fear of liability that drives medical pros to tell you not to change anything? (Just like fear of liability seems to drive so much of modern medicine)
Obviously setting CPAP mode to 20 might be deleterious, but that's not sensible.
Is there actually some harm you could do to yourself by changing the settings, in a sensible way?

[withtao]

...

But something is bothering me: is it just fear of liability that drives medical pros to tell you not to change anything? (Just like fear of liability seems to drive so much of modern medicine)

Is there actually some harm you could do to yourself by changing the settings, in a sensible way?

I asked my PCP if I could work with a Respiratory Therapist to incorporate my recent sleep study into a new machine.  Her response was that the machine will come preconfigured and I was not to touch it i.e. they know best and do not question them.  BTW, the DME configures the machine and does not have the results of me recent sleep study, so how will they know how to configure it?  Doesn't seem like liability is the issue, ego and control is.