learning the hard way...a rant

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
StephenR
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learning the hard way...a rant

Post by StephenR » Thu Apr 23, 2015 2:27 pm

This is my 2nd go round with CPAP therapy. Last year with help from this and the another 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 Stephen

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Nick Danger
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Re: learning the hard way...a rant

Post by Nick Danger » Thu Apr 23, 2015 2:37 pm

F*** them!!

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Re: learning the hard way...a rant

Post by jjhall » Thu Apr 23, 2015 3:06 pm

While I agree that people that don't know what they are doing should not mess with settings, there is absolutely no harm in looking at the data and asking your doctor for advice and to explain the data you're seeing. To say the data produced on late model xPAP machines is worthless is just plain ignorant.

The days of doctors' advice being taken verbatim with no input or understanding are gone. More and more people are taking charge of their own health, and many old-school doctors take offense to that notion, as if their very position is being threatened. I remember a bunch of years back hearing my grandpa telling of going in to his doc, and being prescribed a handful of new medications. He asked the doctor what they were for, and the doctor simply said "To make you live longer." That was a good enough explanation for my grandpa. He later passed away after what was called "complications from surgery," but we're more inclined to believe it was an issue caused by Lipitor. He was not warned of any dangerous side effects, such as leg pain, and of course he didn't feel it was necessary to read the pamphlets handed to him by the pharmacist. When I go to the doc, I leave understanding what medication I'm being given for what reasons, and what side effects to watch out for.

Sounds like there are some big egos that need to be knocked down a few levels. If it were me I'd tell them what they want to hear, and do what you know to be right. At the very least keep looking for a doctor that will actually treat you like an educated human being rather than just another cow among the herd.

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Nick Danger
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Re: learning the hard way...a rant

Post by Nick Danger » Thu Apr 23, 2015 3:07 pm

When I said F them, I, of course, meant "fire them." I can't imagine how you thought I meant anything else!

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Re: learning the hard way...a rant

Post by BlackSpinner » Thu Apr 23, 2015 3:10 pm

Always just ask them if that would be the same advice they would give diabetics - don't look at your data because you are to stupid to understand.

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chunkyfrog
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Re: learning the hard way...a rant

Post by chunkyfrog » Thu Apr 23, 2015 3:19 pm

By then, you could also be much worse off.
I consider myself fortunate. When I go to see my doctor, he immediately gloms onto my journal.
I keep the record for myself, but then I discovered how record-keeping fascinates any scientist, including physicians.

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StephenR
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Re: learning the hard way...a rant

Post by StephenR » Thu Apr 23, 2015 3:59 pm

chunkyfrog wrote:By then, you could also be much worse off.
I consider myself fortunate. When I go to see my doctor, he immediately gloms onto my journal.
I keep the record for myself, but then I discovered how record-keeping fascinates any scientist, including physicians.
hmmm, interesting, I can only wish for a doc like that....

Stephen

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Krelvin
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Re: learning the hard way...a rant

Post by Krelvin » Thu Apr 23, 2015 5:54 pm

Two sleep studies in 8yrs. Never saw the sleep Dr the first time, did the second time, before and after the study, got my RX, got my machine and don't plan on seeing him again. Only needed him to get insurance to pay for the new machine. Don't need him now.
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Pugsy
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Re: learning the hard way...a rant

Post by Pugsy » Thu Apr 23, 2015 6:06 pm

You know if these machines were so "inaccurate" then how come so many people/insurance companies/doctors, etc are sending people home with apap machines to self titrate at home instead of doing it in a sleep lab?
They can't have it both ways...accurate for when it suits them and not accurate for when it doesn't suit them (which usually means they have had their God complex irritated).

Nick Danger wrote:When I said F them, I, of course, meant "fire them."
Sure you did. Wasn't the first thought that came to my mind.

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Re: learning the hard way...a rant

Post by Dazee » Thu Apr 23, 2015 6:19 pm

StephenR wrote: She said that no sleep doc or tech in my city is going to look at machine data because it is unreliable.
That seems a very odd statement from her. Where I am we must go back to the sleep doctor every month and take the data from the machine to him for review. I can't imagine him wanting to do that if it were unreliable.

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Re: learning the hard way...a rant

Post by Janknitz » Thu Apr 23, 2015 6:29 pm

Pugsy wrote:You know if these machines were so "inaccurate" then how come so many people/insurance companies/doctors, etc are sending people home with apap machines to self titrate at home instead of doing it in a sleep lab?
They can't have it both ways...accurate for when it suits them and not accurate for when it doesn't suit them (which usually means they have had their God complex irritated).
Exactly! And there is data validating them. I remember seeing a published journal article from Kaiser Permanente which validated home titrations (thereby justifying their use of them, but that's another story).

I just shake my head when the accuracy argument comes up, because it's not like any sleep doctor is going to validate your Pap settings with a study every time you come in.

And as for an analogy to diabetes--home blood glucose meters have a 20% margin of error--either direction. So there are people out in the world titrating their insulin doses based on meter readings that could be off 20% in either direction. Too much insulin causes dangerous hypos and not enough to sky high blood sugars. Yet nobody tells diabetics that they should not be checking their blood glucose levels and adjusting doses accordingly. This is much more dangerous than a few centimeters more or less on a CPAP when your doctor is not even going to bother to look at your data to see if it's effective for you. Sheesh!

The reality we all have to face is that NOBODY cares more for our health than we do. And we should not stick with health care professionals who don't want us as valued members of our own care teams. We are not mushrooms to be kept in the dark and fed bullsh*t. We are empowered to take care of ourselves.
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StephenR
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Re: learning the hard way...a rant

Post by StephenR » Thu Apr 23, 2015 8:02 pm

Thanks for the great replies, I will carry on...

Stephen

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chunkyfrog
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Re: learning the hard way...a rant

Post by chunkyfrog » Fri Apr 24, 2015 8:17 pm

If the data from home machines were as unreliable as some claim, they would not have been permitted to sell them.
Any claims to the contrary are highly suspicious.
My glucometer is not considered as accurate as the ones used in clinical settings, but mine is one of the most reliable
home units, as tested by an independent lab, and my doctor endorses its use at home.

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Re: learning the hard way...a rant

Post by Sleeprider » Fri Apr 24, 2015 8:44 pm

StephenR wrote::cry: This is my 2nd go round with CPAP therapy. Last year with help from this and the another 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 Stephen
The irony in your case is that the "professionals" are dealing with incomplete information. They diagnosed you with obstructive sleep apnea and in an unusual move, prescribed a PRS1 Auto CPAP for you to self titrate. Who would suspect you would be the (not so) rare individual that develops severe complex apnea when exposed to CPAP pressure. So after failing the first attempt, you now have been provided another state-of-the-art APAP Airsense 10 Autoset...again without titration study. Perhaps if we do the same thing twice it is reasonable to expect a different outcome?

So here you are with very good, but very wrong equipment, and the machine data is the problem? It boggles the mind, the incredible conceit that comes from knowing better than the patient what is wrong, without investigating the problem, and yet disregarding the only data that is available. That is the definition of a dangerous medical community.

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borgready
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Re: learning the hard way...a rant

Post by borgready » Sat Apr 25, 2015 5:07 pm

The insurance company will hold the data the manchine gets against you when it comes to paying for the machine.

Explaining and teaching the patient eats into their profits and the insurance doesn't compensate for patient education.