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Self Advocacy, The Fight Is Worth It
#1
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Self Advocacy, The Fight Is Worth It
After doing everything I was required to do in order to satisfy my insurance (compliance)... 

DR and I still didn't see eye to eye on the specifics of my treatment. (CPAP vs. AUTO) In fact, he requested that I bring my machine to the 30-90 day compliance follow-up and he changed the settings to 'Fixed'.  I slept on those settings for 3 consecutive nights and woke up in pain every single day.  I couldn't take it anymore...  Even though my AHI was still under 5 (anything under 5 is considered treated; textbook verbiage) it was not as low as I had become accustomed to in the previous 37 days on 'Auto' and I could FEEL it.  So, I compiled the data to prove my findings, researched what he kept trying to push on me (no scientific facts that I could find, very vague and limited studies), sent a very succinct, but 'respectful' email to him and held my breath... 

I was uncomfortable fighting for what I knew to be true for myself, my own health and quality of life, but I DID [it] anyway. Because who else will? NO ONE. I had to speak up for myself because I went too long un-diagnosed, and it ended up causing another severe health issue.  I had to speak up for myself, because after coming here and soaking up the wealth of knowledge and different experiences so many have faced (and applying that knowledge to my own situation), I felt a huge difference in my treatment, almost immediately.  I have never had a problem speaking up before being diagnosed with SA.  Being new to the SA world can be overwhelming, especially after you begin to understand how important it is to your overall health and well being.  

I am happy to announce I received a phone call in only one short day after he received my email... He was not thrilled about the fact that I had armed myself with so much information and could prove my case (many thanks to this forum!) and I could hear it in his voice, but I stayed calm and he did 'relunctantly' concede.  I am now getting the treatment that works best for ME, not a 'one size fits all' treatment that was making me feel worse. 

I hope this encourages someone else to 'speak up' and 'document', no matter the circumstance.  Whether it's a mask fitting issue, pressure changes, fixed vs. auto, DR, DME, Insurance, etc. 


*I had already changed my initial settings from the original prescription about 2 days into my treatment.  Fiddling and experimenting ever so slightly and paying close attention to how I FELT.  (per various discussions on this forum and other forums, as well).  The general consensus being, 'it's your machine, it's your body and there's no law saying you can't make changes'.  However, you may get resistance from your medical team.  They may even go so far as to tell you it could be dangerous, if you have other health issues.  I encourage everyone to do their due diligence.  Research, research research!  I had been reading up on this subject well before my titration study was even complete.  Also, I would like to re-iterate what many have said here:  This is not about chasing numbers, it's about how you feel.  If that means the number is 'anything' under 5, great... if you want to tweak your numbers and see if you could feel even better, that's great too... but at the end of the day, it's about how you feel and if your SA is being managed properly.  Hang in there and stay compliant!

*I can't get the beastie boys out of my head... LOL!
DreamBreather  Coffee
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#2
RE: Self Advocacy, The Fight Is Worth It
This is very important for all members to remember. You should never feel bullied by your health care provders. the best ones will work with you, consider your input and try to achieve the best possible results. Others let their ego rule their behavior, and they expect you to obey their authoritative directions. I don't have an doctors like that.

I'm curious what you ended up with. I know early on your pressure was fixed at 8, and we talked about auto pressure in the range of 8-12.
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#3
RE: Self Advocacy, The Fight Is Worth It
good for you like
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#4
RE: Self Advocacy, The Fight Is Worth It
(05-09-2018, 02:34 PM)Sleeprider Wrote: This is very important for all members to remember. You should never feel bullied by your health care provders.  the best ones will work with you, consider your input and try to achieve the best possible results.  Others let their ego rule their behavior, and they expect you to obey their authoritative directions.  I don't have an doctors like that.

I'm curious what you ended up with.  I know early on your pressure was fixed at 8, and we talked about auto pressure in the range of 8-12.

Sleeprider you are so right... No bullying allowed.

I'm doing very very well on Auto with 9-12cmh20.  My AHI has been consistently, well below .89.  After my 39th day with an AHI of 0.0... it's been even lower, .48 and below, at that setting.  

I feel so much better, I'm amazed actually at how 'normal' I feel now... sleep study AHI was 23.9 (moderate).

The Dr. set me back a few days, but I persevered.  I'll edit my profile (again) to reflect my true settings.  Thanks for all you do here!
DreamBreather  Coffee
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#5
RE: Self Advocacy, The Fight Is Worth It
Good for you!

It sure would be nice if doctors could view their patients as allies in the treatment process.
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#6
RE: Self Advocacy, The Fight Is Worth It
(05-09-2018, 02:58 PM)Hydrangea Wrote: Good for you!  

It sure would be nice if doctors could view their patients as allies in the treatment process.

Yes, it would... I'm of the strong opinion that until you actually tell them that, and then show them that you are serious about finding a solution... They don't believe it.

Beyond that, for many it's about the $$$ and kickbacks!  Ego's and degrees.  Just because they graduated, doesn't necessarily mean they did so at the top of their class.

Not all are this way, and I don't typically have issues.  But I'm sure it happens more than we know.
DreamBreather  Coffee
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#7
RE: Self Advocacy, The Fight Is Worth It
Way to go! That's excellent. Docs shouldn't be doing that bullying, but when they do, the sort of corrective that you provided is exactly what is needed.

And not only way to go, but congratulations on continuing with the treatment that is best for you, which is always a big relief after being side-tracked for a while.

Another domain in which the patients really need to stand up for their rights but unfortunately relatively few do is hazardous prescription drugs that are dispensed in knee-jerk fashion by far too many doctors, some of whom are of course being bribed by the Big Pharma craporations. (BTW, for anyone who can use it, ISTR that Pro Publica maintains a database of docs who are known to be on the take.) There are now so many categories of those drugs that have horrendously bad side effects (statins are one example), and Big Pharma is so outrageously rich and powerful, that a patient pretty much has to put up a fight to avoid having that crap forced down his or her throat. That situation is so bad now that the following exchange is a many-times-per-day routine in many examining rooms:

Patient: "Doctor, I've been feeling <foo> lately."

Doc: "OK, here, let me write you a prescription for <bar>, and that'll take care of it, no problem!"

And of course that doc has no intention of ever telling the patient what the horrible possible side effects of <bar> are.
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#8
RE: Self Advocacy, The Fight Is Worth It
(05-09-2018, 03:18 PM)Fats Drywaller Wrote: Way to go!  That's excellent.  Docs shouldn't be doing that bullying, but when they do, the sort of corrective that you provided is exactly what is needed.

And not only way to go, but congratulations on continuing with the treatment that is best for you, which is always a big relief after being side-tracked for a while.

Another domain in which the patients really need to stand up for their rights but unfortunately relatively few do is hazardous prescription drugs that are dispensed in knee-jerk fashion by far too many doctors, some of whom are of course being bribed by the Big Pharma craporations.  (BTW, for anyone who can use it, ISTR that Pro Publica maintains a database of docs who are known to be on the take.)  There are now so many categories of those drugs that have horrendously bad side effects (statins are one example), and Big Pharma is so outrageously rich and powerful, that a patient pretty much has to put up a fight to avoid having that crap forced down his or her throat.  That situation is so bad now that the following exchange is a many-times-per-day routine in many examining rooms:

Patient:  "Doctor, I've been feeling <foo> lately."

Doc:  "OK, here, let me write you a prescription for <bar>, and that'll take care of it, no problem!"

And of course that doc has no intention of ever telling the patient what the horrible possible side effects of <bar> are.

Thanks Fats,

I Agree with all that!  

I've had to refuse a drug before... unfortunately, I took it first for a short period of time and suffered unnecessary side effects from it.  I knew I would... It's a cancer drug and I don't have cancer.  It has 1 positive therapeutic property against 5 negative.  I still have it out with the Dr. that prescribes it to me (tries)... but it's all in fun.  She understands that I'm being 'involved' in my care and that I take it seriously.

Sometimes, we have to build relationships with the medical profession too.  There isn't just one way to deal with them, there are many and sometimes we both have to have 'boundaries'.
DreamBreather  Coffee
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#9
RE: Self Advocacy, The Fight Is Worth It
I say give em hell, yank their chains, do what you've got to do. Very fine Dreambreather, you go!
Jesse


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#10
RE: Self Advocacy, The Fight Is Worth It
My congratulations on standing up for yourself and advocating for your health. Good job compiling the data as well. Me experience wasn't nearly as difficult as yours with the DME provider but there were some similarities. As long are your results are good (which they clearly are) and you feel good, you are on the right path. Good for you!
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