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+--- Thread: Told to not mess with CPAP settings by PCP (/Thread-Told-to-not-mess-with-CPAP-settings-by-PCP)
Told to not mess with CPAP settings by PCP - withtao - 09-12-2022
I sent a message to my PCP (Primary Care Person) saying I'd be getting a new machine soon and that I had discovered that my current machine (airsense 10) wasn't using APAP! I asked if I could work with a respiratory therapist to help me utilize a recent sleep study to setup and tweak the new machine (airsense 11). BTW, I changed my current machine to reflect the findings for the sleep study and saw immediate improvements. My PCP responded that the new machine will be preset and I must not mess with them! That's that. Well, not exactly. I plan on being a part of my health outcome regardless of the PCPs demands.
I'm wondering if others have encountered that from their health care provider?
Last year I reversed Type II diabetes, that was diagnosed January 2021, by improving my diet. My PCP said my diet was too drastic and should follow the guidelines of 200 carb grams a day vs the 50 I was targeting. Their diet guaranteed that I'd never get better and be on meds the rest of my life. I now have the best cholesterol/triglycerides of my life! A1C and glucose in normal range and off the meds they put me on.
I mention this because I always seem to have to fight with health care providers and just do things on my own. They don't like me much and I don't really care. So, hoping to get involved through this group in my apnea future.
Thanks
RE: Told to not mess with CPAP settings by PCP - staceyburke - 09-12-2022
That is exactly why this group exists- giving the patient help to find their best settings and help with questions that a user has.
Most of the companies will not make any changes to the settings without a Drs order. That takes weeks and people get discouraged and quit therapy. Here suggestions are given and you can try them out and post the next day to get feedback.
RE: Told to not mess with CPAP settings by PCP - Sleeprider - 09-12-2022
This is so common it is the subject of a rather extensive rant in the introduction to the CPAP Setup Manuals page https://www.apneaboard.com/adjust-cpap-pressure/change-cpap-pressure-settings-adjusting-your-machine-with-a-clinician-setup-manual Most people that receive a CPAP can optimize their therapy in a way their physician, RT, DME and other care-takers cannot, and they accomplish this by learning about the therapy and with the excellent free Oscar software. https://www.sleepfiles.com/OSCAR
Please feel free to use the resources of this forum and make the most of your CPAP journey, and don't hesitate to send a request for a copy of the Airsense 11 Autoset clinician manual.
RE: Told to not mess with CPAP settings by PCP - clownbell - 09-12-2022
I believe this is a power trip by the medical establishment. Drs/Nurses/RTs are essentially saying "I went to school for x years to learn this stuff, who are you to think you can handle this." Nobody know your body better than you, and the establishment does not spend a significant amount of time reviewing your data. Privately, some will acknowledge that patients need to advocate for themselves and become educated consumers.
RE: Told to not mess with CPAP settings by PCP - withtao - 09-12-2022
Thanks to all. Very encouraging to be amongst fellow travelers. Look forward to my journey will you all.
RE: Told to not mess with CPAP settings by PCP - Brazen - 09-12-2022
@Clownbell -hey, Docs/nurses/RTs aren't the only ones with attitude - ever told a mechanic you worked on your own car or a hair stylist you cut your own hair?!
But yeah, med folks do have some attitude. Lol
(Nurse here, but I've had enough personal bad experiences that I listen to my patients)
Last time I picked up a new mask, I made the mistake of telling my DME guy that I had adjusted my settings. He went full on lecture at me. Oh well.
RE: Told to not mess with CPAP settings by PCP - StevesSp - 09-13-2022
I think the worst offenders here are GPs - 'general practitioners' as they are called here in Oz. It really is worth trialing a few before choosing, in my experience. Most will spend the limited time you're in front of them trying to come up with any diagnosis other than what you said you have when you walked through the door, in which case it's best not to say, "Hi doc. I'm having headaches and can't breathe through my nose. I think I have a sinus infection."
Most likely, you'll be sent home with a plaster cast on your thumb.
I also find it necessary, when sent home with new meds, to consult the interweb before taking them. I have several times found that I am not in fact supposed to take said meds with my heart or prostate disease.
RE: Told to not mess with CPAP settings by PCP - Sleeprider - 09-13-2022
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.
RE: Told to not mess with CPAP settings by PCP - withtao - 09-13-2022
(09-13-2022, 03:46 AM)StevesSp Wrote: I think the worst offenders here are GPs - 'general practitioners' as they are called here in Oz. It really is worth trialing a few before choosing, in my experience. Most will spend the limited time you're in front of them trying to come up with any diagnosis other than what you said you have when you walked through the door, in which case it's best not to say, "Hi doc. I'm having headaches and can't breathe through my nose. I think I have a sinus infection."
Most likely, you'll be sent home with a plaster cast on your thumb.
I also find it necessary, when sent home with new meds, to consult the interweb before taking them. I have several times found that I am not in fact supposed to take said meds with my heart or prostate disease.
Yep. My wife and I have learned to not say much when dealing with our 'traditional' medicine folk. Our PCP often says "Western medicine believes blah, blah, blah" because they know we do our own research and take a hands on approach to our health. Basically we appease them so we can get tests, scans, etc.
RE: Told to not mess with CPAP settings by PCP - Gideon - 09-13-2022
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.