Let's clear up some misinformation

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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idamtnboy
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Re: Let's clear up some misinformation

Post by idamtnboy » Fri Jan 27, 2012 10:56 am

Therapist wrote:I also maintain that the great majority of people are not interested in data and would not care to do anything if you showed them your data. I discussed this with my doctor while I was showing him my reports and said it would be great if everyone had their own data. He reminded me that his office reads the cards of all his patients (he prescribes only ResMed Autoset and BIPAP) and shows the data to his patients. He said, "Most of my patients that see the data don't care to make any changes to improve their therapy."
Goes right along with what one of my doctors said when we were discussing what life style changes a diabetic can make to lower their glucose level. Most patients respond, "Don't tell me what I need to do. Just give me a pill to fix it!"
But back to my point, you have a small number of chronic gripers here. They would make almost zero impact on cpap.com sales under your idea.
The old 80/20 rule, 20% of the posters do 80% of the posting and griping.

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retrodave15
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Re: Let's clear up some misinformation

Post by retrodave15 » Fri Jan 27, 2012 11:05 am

Elle wrote:I know many patients who have no idea what medication they are taking. I have caught medication errors and am always astounded when I ask someone what they are taking and they say "a blue pill". There is a great section of the population who trusts that people have their best interests at heart. I know differently after working in a hospital for 30 years.
Exactly - I worked in an ER for 10 years when I was going though college and before I became an event planner. I vividly remember getting and having to go through a shoebox full of meds from 5 different doctors. Some of these people were taking 10-15 pills a day. The right hand did not know what the left hand was doing as there was no communication from doctors. The one I remember most was the severely agitated older man, he came in and was so angry and confused that he took a swing at me. Thank god for a gung-ho resident who decided that this was a medication problem, took the time to sort through the meds and figure out what he really needed to be on. He left the hospital in much better shape.

That gung-ho resident is now my family doctor. He still has the same attitude.

You are responsible for your own health, take responsibility for your health. I have a usb drive on my key chain with my entire health history, my wife has the same. It just could be a life saver in an emergency.

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Elle
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Re: Let's clear up some misinformation

Post by Elle » Fri Jan 27, 2012 11:15 am

Another reason people may not stick around here is because they recognize that the problem with DMEs is universal and they give up. They decide to just do what they have to and ignore the politics of it. Some are lazy, some are resigned, some don't have time.

The people who stick around are determined to get the best care and to be helpful to the others who want the same. I salute the helpers and those who take responsibility for their health.

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Therapist
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Re: Let's clear up some misinformation

Post by Therapist » Fri Jan 27, 2012 1:00 pm

It is very cheering to see some of you speak out for personal responsibility. Don't ever be shy about speaking out. Sure there is a big contingent who will try to beat you down - lack of personal responsibility is in fashion now. But don't let them beat you down.

Teach your children and your grandchildren about personal responsibility. Continue to be the model of personal responsibility that you are. Expect it of all you come in contact with. Mention the phrase frequently.

May God bless you.
I am not a medical professional and I have no medical training.

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robysue
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Re: Let's clear up some misinformation

Post by robysue » Fri Jan 27, 2012 1:51 pm

Therapist wrote: I also maintain that the great majority of people are not interested in data and would not care to do anything if you showed them your data. I discussed this with my doctor while I was showing him my reports and said it would be great if everyone had their own data. He reminded me that his office reads the cards of all his patients (he prescribes only ResMed Autoset and BIPAP) and shows the data to his patients. He said, "Most of my patients that see the data don't care to make any changes to improve their therapy."
Ah--but you see that's the point: Your doc prescribes machines that record full efficacy data so none of his patients are sold a brick in the first place. And then he looks at the data---regardless of whether his individual patients are interested in it. And I bet that when he sees problems with over high AHIs in a patient whose leak data indicates that there is no with leaks, he doesn't blandly tell the patient to get a chinstrap and try harder. In other words, if a paitient who could not care less about the data is in danger of becoming an "ex-PAPer" because s/he is having serious difficulties adjusting to the machine and is not feeling any better after several months of PAP therapy, your doc has got data available to make suggestions on what to alter that just might address the real problems the patient is having.

But what about the poor hapless souls whose doc doesn't think to specify a full efficacy data machine? And the patient gets stuck with a brick? And then starts having serious trouble? If s/he goes back to her/his doc and tells the doc s/he's still feeling miserable and the machine is not helping, what happens? If the doc asks for the machine's data card and downloads it, the only data available is the compliance data. Nothing useful. And so the doc is working blind on trying to figure out what to suggest to the patient that might actually do some good. And it only takes a few rounds of Go to the doc and get a suggestion that doesn't work and be told "Try Harder" before you start thinking of just returning the machine to the DME or chucking it into the closet because try as you may, sleeping with the machine is just not working for you. And that's when it becomes easy to decide to just give up and live with the apnea, because at least you feel like you get some sleep without the machine even if it's not that great.

And that's why so many of us complain about bricks: Being sold a brick denies everyone, including the doctor, the efficacy data in case there's a problem.

So I'll say it again: 'Tis better to have the efficacy data and never need it or look at it than to NEED the efficacy data and find that there is no efficacy data available because the machine is a brick.

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Elle
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Re: Let's clear up some misinformation

Post by Elle » Fri Jan 27, 2012 1:58 pm

It's like getting a blood pressure monitor that reports "not so good" or "not bad".

jnk
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Re: Let's clear up some misinformation

Post by jnk » Fri Jan 27, 2012 2:04 pm

Isn't that why they call them "brick-and-mortar DMEs"--because too many of them give patients' "bricks" instead of AHI-data machines?

I propose a slogan, if it doesn't sound too violent: "Bricks are for throwing, not breathing!"

Occupy DME Street. 100% of PAP patients (and their docs) deserve access to life-saving nightly AHI data.

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chunkyfrog
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Re: Let's clear up some misinformation

Post by chunkyfrog » Fri Jan 27, 2012 2:11 pm

It's like a blood sugar monitor that says,"not dead yet"

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StevenXXXX
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Re: Let's clear up some misinformation

Post by StevenXXXX » Fri Jan 27, 2012 2:17 pm

Like probably a lot of you, I have received payments from Class Action Lawsuits where I got $18 & the attorneys got $7 Million. They provide no benefit to the people who were actually injured.

But, I can see where DME providers & even the manufacturers could be prime candidates for such a lawsuit because they continuously screw people the same way.

In such a case, I may readily participate & accept my $18 in the hopes that it would at least get them to change their methods.

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jnk
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Re: Let's clear up some misinformation

Post by jnk » Fri Jan 27, 2012 2:23 pm

If DMEs were sued every time a patient who was issued a brick died, or was injured, because of falling asleep at the wheel, that might start to change their tune, eh?

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chunkyfrog
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Re: Let's clear up some misinformation

Post by chunkyfrog » Fri Jan 27, 2012 2:30 pm

What a plan; we could check the obits; find out who had apnea; and were issued useless bricks.
Contact the families--see who'd like a piece of the pie.
Sit back and watch the fireworks!
Popcorn, anyone?

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jnk
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Re: Let's clear up some misinformation

Post by jnk » Fri Jan 27, 2012 3:00 pm

chunkyfrog wrote:. . . Popcorn, anyone?
I think Carbonman is in charge of that, right?

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retrodave15
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Re: Let's clear up some misinformation

Post by retrodave15 » Fri Jan 27, 2012 3:07 pm

chunkyfrog wrote:It's like a blood sugar monitor that says,"not dead yet"
I think that this describes the situation perfectly here! (From Monty Python's The Meaning of Life)

Obstetrician 1: Get the EEG, the BP monitor, and the AVV.
Obstetrician 2: And get the machine that goes "PING!"
Obstetrician 1: And get the most expensive machine in case the Administrator comes.

Patient: What do I do?
Obstetrician: Nothing, dear, you're not qualified.

(After the doctors quickly drop the baby into an incubator, the mother looks up.)
Patient: Is it a boy or a girl?
Obstetrician: Now, I think it's a little early to start imposing roles on it, don't you?

Hospital Administrator: Ah, I see you have the machine that goes "PING!" This is my favorite. You see, we lease this back from the company we sold it to; that way it comes under the monthly current budget and not the capital account. (The doctors and onlookers applaud.) Thank you, thank you. We try to do our best. Well, do carry on.

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GumbyCT
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Re: Let's clear up some misinformation

Post by GumbyCT » Fri Jan 27, 2012 7:33 pm

Therapist wrote: I will tell you the problem with that and that may be what you are subtly driving at. If you go to the forum member list and click on "Posts" to sort it in descending order you will see 60,000 members. But you will also see that there are only a few active members with posts in the thousands. Of these few active member a small number of them are posting over and over about horrible DMEs.

I posit that most people that come here figure things out quickly and get on their way. But you have this very small number of people that sit on their butts and constantly gripe in the forum about DMEs.
Seen another way - the majority of the members here came here looking for answers because they were having problems with their current DME. Many were lied to, others were cheated and lied to. Some posted about it but not all bothered to post. Even more never bothered to become members.

Therapist wrote:Now I am not saying that there are not problems with DMEs - I have encountered them myself. I am saying that most people figure it out and get on their way.
NOW I'm getting worried cuz that means even more than I thought are having problems with their DME's.

Can I just go stick my head under a rock?

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Last edited by GumbyCT on Sat Jan 28, 2012 8:29 am, edited 1 time in total.
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BlackSpinner
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Re: Let's clear up some misinformation

Post by BlackSpinner » Fri Jan 27, 2012 8:47 pm

Therapist wrote:It is very cheering to see some of you speak out for personal responsibility. Don't ever be shy about speaking out. Sure there is a big contingent who will try to beat you down - lack of personal responsibility is in fashion now. But don't let them beat you down.

Teach your children and your grandchildren about personal responsibility. Continue to be the model of personal responsibility that you are. Expect it of all you come in contact with. Mention the phrase frequently.

May God bless you.


Personal responsibility does not mean you stand aside watch people who are sick and confused get screwed just so you can feel superior.
Personal responsibility means acknowledging all the help and information you got and passing it and what you learned on to others. It means being big enough to accept that you are part of a society and not a country club and accepting your adult personal responsibility to your community and country. As a great leader said "Ask not what your country can do for you, but what you can do for it". That is personal responsibility.

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