Self Advocacy, The Fight Is Worth It

[DreamBreather]

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!

Thank you, 

It wasn't the DME in this case... It was the actual DR.

Either way, i'm getting the desired results... as I hope you are too!

[PerChancetoDream]

Good job! We really have to be our own strongest advocates!

[Spy Car]

I recall one moment in my positive--but complex--relationship with my sleep doctor, who had come out of the prestigious Stanford Sleep Clinic and was not egoless, when I was hitting him with questions and data (and making changes to my pressure setting that were not in complete accord with his ideas about things, yet were clearly improvements) when he said to me:

"You know, 95% of my patients are NOT like you!"

To which I said: "Why thank you!" LOL.

I think he was both a little bit exasperated with me and at the same time impressed that a civilian was driving the relationship, making good decisions and seeing the bigger picture that lead to ASV instead of APAP.

Fortunately, I had some smart folks to rely on here. alone, I'd have been at the mercy of a sleep clinic where people would have been too busy to deal with the sort of marginal case I presented.

Bill

[DreamBreather]

I recall one moment in my positive--but complex--relationship with my sleep doctor, who had come out of the prestigious Stanford Sleep Clinic and was not egoless, when I was hitting him with questions and data (and making changes to my pressure setting that were not in complete accord with his ideas about things, yet were clearly improvements) when he said to me:

"You know, 95% of my patients are NOT like you!"

To which I said: "Why thank you!" LOL.

I think he was both a little bit exasperated with me and at the same time impressed that a civilian was driving the relationship, making good decisions and seeing the bigger picture that lead to ASV instead of APAP.

Fortunately, I had some smart folks to rely on here. alone, I'd have been at the mercy of a sleep clinic where people would have been too busy to deal with the sort of marginal case I presented.

Bill

Yes SpyCar!!  That's exactly the gist of how it usually ends up.  When they see, we are trying to 'Help Them - Help Us'... and not the other way around.

Good job!!

[Mosquitobait]

Congrats on advocating for yourself! The problem for a lot of people is either not making the effort or being too ill to do so. Then they come here after the fact and are stuck with equipment that isn't helpful for them.

[Spy Car]

Yes SpyCar!!  That's exactly the gist of how it usually ends up.  When they see, we are trying to 'Help Them - Help Us'... and not the other way around.

Good job!!

The one ace-in-the-hole we (what's the term I'm looking for here?) actively engaged patients have that keeps our doctor's heads from exploding, is that they know we are committed to our therapy.

So many people fall off using their devices (for so many reasons), but that's not the case with us. 

Bill

[Fats Drywaller]

The one ace-in-the-hole we (what's the term I'm looking for here?) actively engaged patients have that keeps our doctor's heads from exploding, is that they know we are committed to our therapy.

True. But aside from that, the doctor has to be mature enough, and not a complete narcissist, to be able to deal honestly with patients who aren't submissive. Some doctors aren't like that, and the residents are the worst (the attendings usually have enough experience to know better). I've seen that in other specialties in years past -- extreme arrogance, which is almost always unwarranted and is always super-offensive to the patient -- but fortunately with the sleep apnea my case is very normal & average & boring, so I don't need to be in any kind of conflict with the docs. Whatever it might be, I can just shrug it all off and go back home and continue to use my CPAP machine. And that lack of friction is fine with me, because I don't need anything to increase my blood pressure.

It occurs to me that the general availability of Sleepyhead must be a real pisser for the very egotistical type of young doctor who has chosen to specialize in sleep disorders. He went to school for years for this stuff, paid megabucks, was assuming that he'd always be a big shot, and now his expertise (whether actual or pretended) is being bypassed by these riffraff patients who have the gall to examine their own data and try to interpret their own charts! The nerve of these people!

[DreamBreather]

The one ace-in-the-hole we (what's the term I'm looking for here?) actively engaged patients have that keeps our doctor's heads from exploding, is that they know we are committed to our therapy.

True.  But aside from that, the doctor has to be mature enough, and not a complete narcissist, to be able to deal honestly with patients who aren't submissive.  Some doctors aren't like that, and the residents are the worst (the attendings usually have enough experience to know better).  I've seen that in other specialties in years past -- extreme arrogance, which is almost always unwarranted and is always super-offensive to the patient -- but fortunately with the sleep apnea my case is very normal & average & boring, so I don't need to be in any kind of conflict with the docs.  Whatever it might be, I can just shrug it all off and go back home and continue to use my CPAP machine.  And that lack of friction is fine with me, because I don't need anything to increase my blood pressure.

It occurs to me that the general availability of Sleepyhead must be a real pisser for the very egotistical type of young doctor who has chosen to specialize in sleep disorders.  He went to school for years for this stuff, paid megabucks, was assuming that he'd always be a big shot, and now his expertise (whether actual or pretended) is being bypassed by these riffraff patients who have the gall to examine their own data and try to interpret their own charts!  The nerve of these people!

HAHAHA!!! Exactly... I thought of that too... Ooops, didn't mean to step on those toes Doc!!  Hahahaha!!!

[Spy Car]

True.  But aside from that, the doctor has to be mature enough, and not a complete narcissist, to be able to deal honestly with patients who aren't submissive.  Some doctors aren't like that, and the residents are the worst (the attendings usually have enough experience to know better).  I've seen that in other specialties in years past -- extreme arrogance, which is almost always unwarranted and is always super-offensive to the patient -- but fortunately with the sleep apnea my case is very normal & average & boring, so I don't need to be in any kind of conflict with the docs.  Whatever it might be, I can just shrug it all off and go back home and continue to use my CPAP machine.  And that lack of friction is fine with me, because I don't need anything to increase my blood pressure.

It occurs to me that the general availability of Sleepyhead must be a real pisser for the very egotistical type of young doctor who has chosen to specialize in sleep disorders.  He went to school for years for this stuff, paid megabucks, was assuming that he'd always be a big shot, and now his expertise (whether actual or pretended) is being bypassed by these riffraff patients who have the gall to examine their own data and try to interpret their own charts!  The nerve of these people!

Yeah, my sleep doc is a good guy but he had his struggles with these issues. I'm certain that I sometimes rubbed him the wrong way. 

I did try to make it clear that I was open to all the time and expertise that he was willing to put towards my care. I also knew he was way over-worked with a heavy patient load, so not being pro-active and self-advocating would not serve my interests one bit.

And at least he could see that when I made changes (based on good advice here) that I was optimizing therapy. He also knew that when he looked at the compliance data for the $5,000 machine that I pushed to get, that he'd see that my use was 100% and he didn't need to spend time monitoring me.

So a win for him, given he is on staff.

Bill

[SarcasticDave94]

DreamBreather,

Big congrats on taking your health into your hands IMO the right way.

I had to do something similar with pulmonary doctor 1. He was likely very knowledgeable, but he was very stubborn in how he handled every patient from what I understand. My current RT at the DME verified that he was hard to work with. I did take the info with a grain of salt, but still it was worth noting. I had to push to get to ASV, even though I had data, a nurse, and another doctor from the same office as my pulmonary doc state on the medical record to progress to an ASV.

No, I will not fall into the trap of all docs, DMEs, RTs etc. are bad, but then again, neither are all of them advocating what's best for the patient. So we need to do that ourselves. IMO cookie cutter answers are good for cookie cutters not patients.



...Why does the moniker Dreambreather make me think of Gary Wright and Dream Weaver? Happy Friday y'all.