learning the hard way...not what you think, a rant!

[storywizard]

This is my 2nd go round with CPAP therapy. Last year with help from this and the "other" forum I was able to survive what was for me a horrible experience. This time around having worked out some of the bugs, masks for instance, I am having less issues getting used to the machine, however I have had a hard lesson to learn in how the system, in my location anyway, views folks who delve too deeply into their own data and therapy.

At first I thought the new sleep doc I had found was more open to my inquiring mind...HA! Then I discovered that he basically ignored all the description of how my first CPAP experience had been and insisted I go back on the machine. Then the DME I am dealing with really gave me a hard time when I said I was going to look at my data...

Today I had a conversation with the owner of a large DME in my city, who basically said, "people like me who try to be the experts should keep their noses out of what they do not understand". She said that no sleep doc or tech in my city is going to look at machine data because it is unreliable. That the only true test of what is going on is a sleep study in a lab. So keep away from machine data.

I have learned today that I have been wasting my breath with doctors and techs, thinking I was helping them or at least understanding my journey. I will now not say a word about data, just tell them what they want to hear and get my own machine as soon as is possible.

I do not like the path that sleep medicine is on...I will be a subversive as I can, but this sucks, IMHO

Thanks for being here...

a discouraged Storywizard

[DariaVader]

There is a boatload of money to be made in medicine by formula. The formulas may not make sense in a given situation, but overall they do, somehow... so this will continue, unfortunately. As for the DME who is angry about you treading on their turf, the protests are the last gasp of those who know that their jobs are on the line; they cannot deliver what consumers are demanding, and as more and more folk are diagnosed with apnea (and that is a given - it is something that increasingly drs are aware of and pushing for) the consumer voice will get louder and louder.

[OpalRose]

storywizard,
I was told the same thing by my DME (slightly different wording). The technicians that work there
get a little testy when you can demonstrate that you have knowledge of CPAP therapy, and you want to have a voice in what goes on.
One tech. couldn't understand how I could have a copy of Encore on my computer, so I didn't even bother to tell her about SLeepyHead. My sleep doc is just "slightly" more enlightened.

Don't get discouraged, you have a lot of support here.

[GrammaBear]

storywizard~

You are definitely not alone in feeling that you don't like the direction sleep medicine is going. I had the occasion to bring my cpap machine to the DME's storefront for minor repair. In the process of that repair, I happened to mention that data had shown that I had 'x' number of events the night before. Omg........you would think I had committed a capital offense. I was told in no uncertain terms that "you have no business snooping around in the clinicians menu." I pondered that while they finished the repair to my machine, and then I pulled out my insulin pump and asked if they knew what it was?

No, of course not .....was the huffy response I received. Then I told them that "my insulin pump cost my insurance company thousands of dollars and if I can learn to manage my type 1 diabetes with it, you can d**n count on me being able access the clinician's menu on my cpap machine." I then picked up my machine, walked out of their store and I haven't been back !!!

[DariaVader]

storywizard~

You are definitely not alone in feeling that you don't like the direction sleep medicine is going. I had the occasion to bring my cpap machine to the DME's storefront for minor repair. In the process of that repair, I happened to mention that data had shown that I had 'x' number of events the night before. Omg........you would think I had committed a capital offense. I was told in no uncertain terms that "you have no business snooping around in the clinicians menu." I pondered that while they finished the repair to my machine, and then I pulled out my insulin pump and asked if they knew what it was?

No, of course not .....was the huffy response I received. Then I told them that "my insulin pump cost my insurance company thousands of dollars and if I can learn to manage my type 1 diabetes with it, you can d**n count on me being able access the clinician's menu on my cpap machine." I then picked up my machine, walked out of their store and I haven't been back !!!

haha, gramma where's the [like] button!!!

[storywizard]

storywizard~

You are definitely not alone in feeling that you don't like the direction sleep medicine is going. I had the occasion to bring my cpap machine to the DME's storefront for minor repair. In the process of that repair, I happened to mention that data had shown that I had 'x' number of events the night before. Omg........you would think I had committed a capital offense. I was told in no uncertain terms that "you have no business snooping around in the clinicians menu." I pondered that while they finished the repair to my machine, and then I pulled out my insulin pump and asked if they knew what it was?

No, of course not .....was the huffy response I received. Then I told them that "my insulin pump cost my insurance company thousands of dollars and if I can learn to manage my type 1 diabetes with it, you can d**n count on me being able access the clinician's menu on my cpap machine." I then picked up my machine, walked out of their store and I haven't been back !!!

haha, gramma where's the [like] button!!!

it sure is time for that button...lol

Storywizard

[trish6hundred]

Hi storywizard,
I'm sure sorry about the harsh treatment you got but you keep up the good work and check your data anyway, GREAT JOB.!
Keep us posted on how things go for you as you continue on your CPAP journey.
Hang in there for more responses to your post.

[truetopath]

I'm sorry you're getting put through the ringer. I told my doc and DME flat out that I'm going to look at my data. The DME said how do you know how to do that, and i gave them the I've been a nurse for 10 years and frequently had to help patients with their cpap. They said I really shouldn't be messing with the clincicans menu, and I told them, well I'm a clinician, and they shut up after that. That was the only problem I've had with them.My doc was all good with it. Hopefully, as apnea comes to the forefront these DME's and docs will accept that an informed patient is an easy patient. Until then I'll keep managing my own sleep apnea, and interpreting my own data.

[OMyMyOHellYes]

Give 'em hell.

I have gotten "fired" by a doctor before when I told her that **I** was the one responsible for my own well being, not her. I think I ended up telling her that I considered her the "hired help". Actually, I worded it as "I will carefully listen to your opinion and counsel, and consider it, but ultimately, my health care decisions are my call to make - not yours."

Much in the same way that senior management for a client company pays me for my considered professional opinion on financial matters, at the end of the day, I'm paid for giving my advice. Whether or not they take it and act on it is their decision. I say thank you very much and cash their check. I am "hired help" in that sense.

Well, that doctor had a much higher opinion of herself than I did. So, I got a new doc.

OMMOHY

[justMongo]

I just don't tell them.