This was originally posted on the thread -

viewtopic/t46200/What-does-a-DME-actually-do--MY-story.html

but then I remembered that Autopapdude did not want his thread hijacked, so to respect that I am starting a new thread to allow leejgbt to reply without any further hijacking

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Post by mars on 29 Oct 2009, 21:43

leejgbt wrote: They are absolutely consistent about one thing; do NOT self dose. I am not against working with your physician if the setting you are on is causing difficulties. I am against the self aggrandizing, self important physician wanna bees like autocpapdude who are the definition of a little knowledge is dangerous.

If you have been keeping up on my answers I have answered the all important question about the FDA rules regarding patients setting the CPAP/BiPAP pressures. DME companies are not allowed to do this without an RX. Patients are not subject to this prohibition. But think about why this is regulated at all. Autocpapdude and people like him are dangerous.

I know the policy about self regulating the realm of physicians sounds "gestapo" but the point is I agree that the risk is not worth the reward. This policy was written, not by me, but our Medical Director (a real physician).

Pay attention self dosers you might actually learn something.

Hi leejgbt

A few comments on the above.

leejgbt wrote: .... The thought being a patient doesn't have the ability to assess their own medical condition" end quote

The above argument is dishonest. We have had our medical condition diagnosed, we now intend to get the best possible treatment.

Then there is - "the risk is not worth the reward." end quote

My ex Sleep Doctor told me if I got a cpap he never wanted to see me again - ever. If I got an auto he would see me in 12 months. Please explain how the Sleep Doctor's treatment is better than mine, where I daily monitor my results, and make changes accordingly.

The "consultant" at my ex DME told me that my AHi of 6.2 was fine, and I need do nothing. I now have an AHi of between 2 and 3, and sometimes less than 2. So again, please explain how the treatment I got from the DME is better than my own hands on treatment.

About your statement

"the risk is not worth the reward. "

What evidence have you that would support this statement. And I mean evidence.

OK, let us say you have no clinical evidence from trials, and just go on hearsay. What about the hearsay on this Forum, which is all about getting better treatment through self-involvement.

And finally, there is this law that keeps on getting mentioned. I wonder why laws keep on getting changed. Well, it is because laws are not facts, not truth and not reality. They are somebody's idea of the way things should be. They should never be quoted as a valid reason for doing or not doing something in the health field. The only valid reason in health has to be a health reason, not a legal reason.

And have you ever thought that the lawmakers did not make it illegal for users to change the machine's settings. Therefore it can be well argued that they intended users to be able to change their settings. So you should be abiding by the law which in fact does allow users to change their settings!

As far as DME's are concerned, you sound pretty good. It is a pity you hide behind a spurious argument to deny us the best healthcare we can get.

And if you do reply, I suggest you avoid being condescending. Your remark -

Quote - "Pay attention self dosers you might actually learn something". [/end quote]

is no substitute for having an open mind, and looking at the other persons point of view, providing it is honest.

Looking forward to your response to the above.

cheers

Mars

I think your response is well thought out. You understand the complexities and your reasoning is sound. I believe someone had mentioned the liabilities to a DME if the adjustment to a CPAP caused damage from a legal point of view. While that is a factor the point is to do no harm.

I also agree that the laws keep getting changed for a reason. We keep learning new things. I read a study yesterday that said that the initial setting from a sleep lab was no better than a group of patients allowed to self adjust. I could not believe it! Everything I was taught was being refuted with a proper clinical trial. The conclusion of the persons doing the study was not that persons should be allowed to self dose, however, but that sleep technitions needed to do a better job titrating pressures. The date of the study............1997. Whew! Since then several factors that go into accurate titrations have been implemented and recommended and this study is no longer the norm. Does this mean you cannot get a bad titration? No, of course not, but if you collaborate with your sleep physician then this can be corrected.

I'll stick with this forum any day.

My doctor prescribed a pressure of 20 after my sleep study. Blew the mask right off my face. Now on bi-pap, I range between 12-14. Seems like a big difference to me.

I visited my doctor for a follow-up and my AHI's were just above 5. His advice was "try to get more sleep at night and try to get that number down." No suggestions on how to get the number down at all. I made an adjustment on my machine. Now my AHI's are usually in the 0.5 to 1.5 range. Looking at the data, you can SEE clearly the impact that the adjustment had on reducing my AHI's.

I'm just saying...

Sorry, had to answer the phone and thought I had finished so I sent my reply without finishing. There are massive amounts of studies dealing with the issues mentioned on this site. I have promised a new policy of stating the source when I give any stats. I have been in the business long enough that some of these stats become part of the language.

As far as the quote about the risks need to be worth the reward I was quoting our medical director. So, I asked him what he meant. His reply was it is never worth it to cause harm by guessing even if you get it right most of the time. He said that using the wrong setting can cause harm for certain patients given other factors that might not be considered.

I also admit that I have read way more threads on this site that give fantastic advice and encouragement than give bad advise. The level of knowledge of the people using this site is much higher than I see day to day. Because of this I have tended to assume that most of the people here have already read similar stats or are familiar with the industry standards that have been set by various players like the AASM, Medicare, state Boards of Pharmacy and the accreditation agencies. Thus my new policy to site my sources.

Just to let people know a little of my background. I started in this industry in 1984. At that time there was no one in the city I lived in that was familiar with sleep therapy. You had to go to either Salt Lake or Seattle for treatment. I started with a company that was owned by nurses who felt that patients were not getting proper education and followup with their equipment (mostly oxygen and nebulizer equipment). I was the programmer who wrote the software to bill Medicare, Medicaid and insurances as back then none existed. I worked my way up to Vice-President over the next ten years. I am NOT clinical. I got out of the industry and went into financial services as an investment advisor and insurance agent. I was asked to help with the company I currently work for as they had lost track of their inventory and their billing was very poor. It is a non-profit company and, believe it or not, they put clinical outcomes before profit. We have had many patients who are one central apnea short of the criteria for a BiPAP with backup and even though reimbursement is less than cost we provide this. I am the business manager and I have set up an "adversarial" relationship with out lead RT. By this I mean this person recommends the clinical plan without regard to the cost and I then can say no if the cost does not justify. The Medical Director can overrule me and has in these instances as I can only give the business side of the equation by design and it would be wrong from a clinical standpoint. With this method we guarantee a positive outcome for the patient and we will not go broke.

I 2001 I was diagnosed with OSA. I had gained a lot of weight due to a back injury. I also have asthma and allergies. I did not do well with my CPAP for several months. My only help was from work and my wife. There was no support groups. If not for my wife I would have given up on the CPAP as I had issues with leaks in my eyes, feelings of suffocation and taking my mask off without knowing it. As masks and CPAPs have improved it has been very easy to comply with my therapy until I started mouth breathing and could not tolerate a chin strap. This has also been solved by a collaboration with my physician and our RT.

It saddens me to hear about disinterested sleep physicians and RTs. I would not tolerate them. Unless they are the only game in town I would find on that cares.

leejgbt wrote:....... Pay attention self dosers you might actually learn something.
............

I am not dead or incapacitated today and can pay attention only because I threw out what three doctors (with accredited sleep labs) were telling me and learned something from this patient forum. My latest and current sleep doctor understands what I have done (self-titrating) and supports it. In fact, she has told at least one patient that the titration I do at home with Encore Pro is more accurate than what her accredited sleep lab can do in a one-night titration ( viewtopic.php?f=1&t=44379&st=0&sk=t&sd=a&start=0 ).

leejgbt, You are out of touch with what patients are doing to improve their health. Stay out of their way!

[quote="leejgbt"]I think your response is well thought out. You understand the complexities and your reasoning is sound. I believe someone had mentioned the liabilities to a DME if the adjustment to a CPAP caused damage from a legal point of view. While that is a factor the point is to do no harm. - End Quote.

Thank you for your open-minded response. Many of us here carry baggage in regard to sleep doctors, DME's etc, including me, so it is difficult to be objective when a new professional appears on the Forum. Anyhow, good to hear back from you, and hopefully we can all benefit if you stick around.

Quote -I also agree that the laws keep getting changed for a reason. We keep learning new things. I read a study yesterday that said that the initial setting from a sleep lab was no better than a group of patients allowed to self adjust. I could not believe it! Everything I was taught was being refuted with a proper clinical trial. The conclusion of the persons doing the study was not that persons should be allowed to self dose, however, but that sleep technicians needed to do a better job titrating pressures. The date of the study............1997. Whew! Since then several factors that go into accurate titrations have been implemented and recommended and this study is no longer the norm. Does this mean you cannot get a bad titration? No, of course not, but if you collaborate with your sleep physician then this can be corrected.[/end quote]

There is one point though, how can I collaborate with the sleep doctor I mentioned above. I could be on a wrong pressure forever, and he would not care.

To balance that I now have a terrific sleep doctor who is quite happy for me to adjust my machine as I will.

Self-care is truly the answer. We will have to disagree there. Most OSA DME's I have been to are simply fancy hardware stores with someone called a "consultant" rather than a shop assistant. Mind you, this is in Australia. I now buy from CpapAuction.

I would also mention that as a carer the law would not stop me from doing what I thought would help someone.

cheers

Mars

PS Just read your last post, but decided to leave the above as is.

Thank you for your story, and welcome to the Forum. I am so glad I did not call you a lot of bad names

cheers

Mars

leejgbt, You are out of touch with what patients are doing to improve their health. Stay out of their way!

I was going to quote chapter and verse, attempting to negate the harm and negativity that leejbt has created, but Rooster did it in far less words. Thanks, Rooster for putting it in one sentence, and making it clear!

Basically, Leejbt hijacked my thread where I was stating my personal experiences for the benefit of others who might be in a similar situation. I had no desire to impose my will, but was giving the sum total of my experiences (which, incidentally were not "unsupervised," but with the consent of 4 different doctors over 11 years). He took my personal story and twisted it to be a justification of his industry, and that, folks, is counter-productive.

*sigh* Why MUST we be so adversarial on this forum?? WHY are we so hell-bent on driving sleep professionals away? So they are WRONG on some issues. That doesn't mean they also don't have some good to offer. WHY can't we be more diplomatic when we disagree w/what they have to say?

Autopapdude wrote:...... I had no desire to impose my will, .........

And that is the only reason I chose to reply to this thread - leejgbt's posts indicate he has a strong desire to impose his will on others (via FDA regulations at times). In all matters of human interaction, "imposing one's will" on others is the ultimate evil.

(Forget it Slinky, I am not going to be diplomatic.)

Autopapdude

I did you the courtesy of moving this topic to another thread. Now you you come along and continue your old complaints on a thread a specifically started to get this out of your hair.

If you want to continue complaining about Leejgbt, then have the decency to start your own thread. This thread is about constructive criticism and discourse, and maybe some ongoing education for all of us.

So take it easy, count to 10, or a 10000000, and you do not have to reply to this post.

Mars

*sigh* Why MUST we be so adversarial on this forum?? WHY are we so hell-bent on driving sleep professionals away? So they are WRONG on some issues. That doesn't mean they also don't have some good to offer. WHY can't we be more diplomatic when we disagree w/what they have to say?

Why? Because they are perpetrating a myth that they can "magically" control our therapy, when most of them fail to even meet minimum standards of patient contact, or informed consent,as per HIPAA. Their motives aren't pure--they are trying to promote large profits by marking up prices so as to profit from insurance companies' reimbursements. We get socked doubly, as it raises the cost of durables for us who choose to pay for said services, and raises insurance premiums, and does not facilitate giving therapy to those who need it.

Mars, I think we're on the same side. I was continuing the discussion as to the relevancy of the DME and was being rather decent about it. Why get you knickers in a twist? You know this is a hot topic, and as such, people will respond passionately and accordingly. We're not having a 'pub slugout--" it is a passionate discussion from those who have strong feelings in/re the route to wellness. I'd bet you and I actually have some common ground on that aspect, and that is where I shall leave it.

Cheers, David

rooster wrote:

Autopapdude wrote:...... I had no desire to impose my will, .........

And that is the only reason I chose to reply to this thread - leejgbt's posts indicate he has a strong desire to impose his will on others (via FDA regulations at times). In all matters of human interaction, "imposing one's will" on others is the ultimate evil.

(Forget it Slinky, I am not going to be diplomatic.)

Rooster

Actually. Leejgbt seems to have an open mind. If he stays we may be able to get him to see our point of view. But abusing him will not achieve that. Change in the industry is more likely to come about from inside the industry, not from us.

Think about it. Posts of this kind are self-defeating.

And, Rooster, lets not get into another pissing contest

cheers

Mars

Autopapdude wrote: .......
Why? Because they are perpetrating a myth that they can "magically" control our therapy, when most of them fail to even meet minimum standards of patient contact, or informed consent,as per HIPAA. Their motives aren't pure--they are trying to promote large profits by marking up prices so as to profit from insurance companies' reimbursements. We get socked doubly, as it raises the cost of durables for us who choose to pay for said services, and raises insurance premiums, and does not facilitate giving therapy to those who need it.

It's not even that.

It has little to do with motives.

If Mother Teresa and St. Paul were running an accredited sleep lab, they still could not in one night, under very strange sleeping conditions, usually under some anxiety, make a titration as effective as one done by an educated patient with the right equipment and software, over several nights, weeks or months, in the actual sleeping conditions of his own bedroom in his own home.

t has little to do with motives.

If Mother Teresa and St. Paul were running an accredited sleep lab, they still could not in one night, under very strange sleeping conditions, usually under some anxiety, make a titration as effective as one done by an educated patient with the right equipment and software, over several nights, weeks or months, in the actual sleeping conditions of his own bedroom in his own home.

Good one, Rooster! That was a "coffee out of the nose" comment..lolol. Mother Theresa, and St. Paul sleep labs Inc.

I also agree with your premise on the educated patient making educated decisions in their own home, under their own will.