A Reply To Leejgbt and Rooster

[Slinky]

Most of us ended up here and/or in other apnea support forums as well BECAUSE we encountered less than satisfactory local DME suppliers and/or sleep doctors. I think most of us realize that we are in the vast minority of xPAP users. And I think I can safely say that we are SUCCESSFUL and COMPLIANT. We've shared our experiences here. But we HAVE to remember that we ARE a minority.

The above does NOT mean that the majority of local DME providers are scuzz buckets like we encountered, or even incompetent such as we encountered. Most of us acknowledge that there are good local DME providers out there. Too many of us just never found them.

Then we have the RRTs and RPSGTs who drop in here. A good share of them really care about OSA patients and they come here to get an idea of what goes on w/the "other half", maybe they can learn something from those in the forums that will help them w/their clients. They're curious. They see a post they think they might be able to offer some constructive advice. - and they get ATTACKED! Insulted. Mocked. This is one of the downsides, one of the less than constructive sides, to this forum. The lack of civility that can occur in this forum from time to time definitely is NOT becoming and is a detriment to this great forum.

[LinkC]

I agree 100% that those claiming to be sleep professionals here get criticized harshly--sometimes fairly, more often not.
Some of them come with a know-it-all attitude. As do some of the regular non-professionals here.
Sometimes what they say is wrong. Ditto some of the regs.

No one knows everything (well...except ME! ), and I think the pros TRYING to be helpful take flak because of the others.

Most of us ended up here and/or in other apnea support forums as well BECAUSE we encountered less than satisfactory local DME suppliers and/or sleep doctors.

But I wonder how you came up with "most". I know we hear lots of horror stories, but I suspect there's a larger percentage of the membership whom we DON'T hear from on that issue because they are satisfied with their pros. That's my case. I came here via a search engine when I was seeking all the info about OSA I could find...not because there was anything lacking in my doc or DME. Perhaps that IS the minority here. Or maybe it's just a misperception caused by a vocal minority. Did I miss a poll on the subject?

[cinco777]

slinky wrote

They see a post they think they might be able to offer some constructive advice. - and they get ATTACKED! Insulted. Mocked. This is one of the downsides, one of the less than constructive sides, to this forum. The lack of civility that can occur in this forum from time to time definitely is NOT becoming and is a detriment to this great forum.

Constructive advice YES. Condescending advice NO. Advice given entirely from a perspective of "I'm the expert and I'm telling you this for your own good, listen up" doesn't fly with me. I don't accept advice from authority figures based on their claimed credentials or from folks that proclaim "Trust me, I know what is best for you". If someone has information/facts/personal experiences/studies/etc. that support their advice, I am all ears. I listen and try to make use of this new "shared" information, fitting it into what I have already learned. I am pleased that most posters to this forum provide information with supporting numbers and details. A few don't.

[Pugsy]

Constructive advice YES. Condescending advice NO. Advice given entirely from a perspective of "I'm the expert and I'm telling you this for your own good, listen up" doesn't fly with me

I can see both sides to what Cinco and Slinky are saying. I pretty much stay out of the DME war because I don't have much to say publicly that would be constructive. I will admit to often feeling like Slinky in that I am almost embarrassed when I see the ferocity of the attacks against "pros". I also will admit to privately thinking some of the "pro" comments as being quite asinine.

I don't do well with condescending attitudes, hence my reply with my kneelsucker gif in another thread. I have never been able to sit back and let someone talk to me like they were the all knowing and superior God of anything. When someone takes that attitude with me anything else that they may offer, even if it is an excellent idea, gets tossed right out the window. If they don't respect me, then I certainly will not respect them. To even hint that I am inferior in any way is just like waving a red flag in front of a bull and I am a Taurus so....

This is a public forum and so everyone has the right to speak their mind. I would prefer to see constructive thoughts and ideas instead of personal attacks that almost reach the level of a shark feeding frenzy. That is just me though and that is why I don't often get in the middle of pissing contests. No one ever wins one and they get so ugly it detracts from what otherwise would be wonderful, informing and beneficial information at this forum.

I don't know Leejgbt from Adam. Maybe he does work for a very well meaning DME. It doesn't really matter because all the good he might have accomplished in my mind, went out the window with one little statement. I am sorry but I cannot get passed someone treating me like I am inferior. Yes I know his words weren't aimed at me personally but then the general attitude encompasses everyone. I won't attack him or other DMEs though. It serves no purpose except for those that need to vent (and that is fine if they need to vent) but I just would prefer to read and do more productive things. Just me and my own thoughts which are worth exactly what you paid for them. This is a public forum and anyone who wants to take the time to compose their thoughts certainly has the right to let them be aired.

[leejgbt]

Kiralynx wrote:

I'm going to ask you: since it's patently obvious that many people here have little or no use for brick and mortar DMEs, how does one proceed when one cannot change DMEs because of insurance, and when the DME in question is behaving in a manner which would drive off any but a captive audience? What positive steps can a DME customer take to bring about change when the DME treats them in an inappropriate manner?

And, I'm going to ask again, you stated in another thread that DMEs might ask strange questions of their customers because they were only trying to comply with the rules. So what are examples of these strange questions?

I think the vast majority of people on this site are doing the right thing with their therapy by becoming educated. The vast majority of sleep therapy patients I see want me to be their expert and just tell them what to do. I do not accept this attitude and educate them anyway. Most thank me later. It is not true that your insurance locks you into a DME company unless you live in a small town with few providers. I live in a town with a little over 30,000 and there are 4 choices of providers. If you want to hold the DME provider accountable go directly to your insurance and let them know what service you expected and what you received. Most insurance companies do not want to take a hit due to a poor provider. Most companies are also licensed by a state board of pharmacy. Turn these companies in.

Weird questions I have heard asked by DME companies:

How long do you usually take to go to the bathroom? Does your insurance pay for different CPAP machines? We have an opening in 6 weeks for your mask fitting is this okay? Does your insurance pay for this equipment? Will your insurance take a sleep study that is 10 years old?

Many of these questions have merit in very specific circumstances like the first question. However, most are asked out of ignorance for the rules or laziness. I have never been satisfied with the level of training of the rules versus the complexity of the rules. This always leads to errors and the patient usually is the one who suffers.

[Muffy]

As Shakespeare once said, all the stories of the (OSA) world can be classified into one of three plot lines:

"My AHI is > 0.0001, So I'm Gonna Die Tomorrow"

"Omigod! A Leak! FFM! Tape! Glue! Staple Gun! Arc Welder! Arrrrgh!!!"

"The Sleep Establishment Is a [whatever]"

viewtopic.php?f=1&t=45166&p=404427&hili ... id#p404427

Muffy

[BlackSpinner]

I am bloody fed up with this asinine attitude of "your to stupid to figure it out"
I mean how difficult is it? You look at your AHI and if it isn't great you adjust your pressure.
My mother has dementia - she still tests her blood and dials the right insulin level and gives her self an injection - any kid can do this. How come any adult is not supposed to read their AHI and adjust there pressure? There are no needles, no drugs no nasty comas of various sorts involved.
I have written software that calculates payroll to the partial penny for construction workers and truck drivers but I am to stupid to figure out that simple equation?

DME's are sales staff and they have a lot to learn from minimum wage shoe salespeople! The ONLY reason to keep people from this control is to make PROFITS!!!

To quote a commercial "It is so simple any cave man could do it!"

And you know something, my sleep doc is 100% behind me so don't tell me some incompetent DME profit pushing sales staff knows more then my sleep doc .

My province's medical association is 100% behind home sleep studies too - because they are not in it to make profits.

[leejgbt]

Blackspinner,

I am glad that your sleep physician thinks it is okay that you adjust your pressure and hopefully that you asked him. But, do you know any of the negative consequences of too much pressure, too little for every patient diagnosed with OSA that might have other co-morbidities? This is what the sleep professionals are for. Your case may be simple but others are not.

As far as home sleep testing, I am for it. By all accounts less than half of people with OSA are undiagnosed. If home studies allow more people to become treated then I am all for it. However, the reimbursement as of today is not enough to even have your sleep doc intrepret it.

[millich]

But, do you know any of the negative consequences of too much pressure...?

Tell us more about this, please.

[cinco777]

leejgbt wrote

But, do you know any of the negative consequences of too much pressure, too little for every patient diagnosed with OSA that might have other co-morbidities? This is what the sleep professionals are for. Your case may be simple but others are not.

I assume that your use of the term "sleep professional" includes Sleep Drs. Correct? If so, how do you explain:

1) Why are many patients given a "loaner" APAP machine for a week with a wide open pressure range (4 - 20 cmH2O for Respironics M-Series APAP) to do a Home Titration? The givee is usually a Sleep Dr. Do you think that being potentially subjected to too much pressure for a week is not a problem? If so, then what is the duration of use at too much pressure that will cause a problem? Two weeks? a month? a year?
2) Why do Sleep Drs continue to prescribe a wide open pressure range to patients receiving an APAP machine? Since a good number of these users will not hear from their Dr. or a DME for a month, 3-months, year or often never again, are they being put in harms way by using, in their own home, an APAP machine set by a professional to a wide open pressure range?

What I can't comprehend in this whole discussion about pressure setting is why some people (actual or claimed professionals) see a different outcome for the patient/user based on Who (professional or user) is setting the pressure. From my reading of this forum, research of available published XPAP related articles and studies, and my own personal experiences with two sleep Drs, it appears that the user is more informed and has more facts & data at his/her disposal when setting the pressure on their machine than the professionals. Please help me see the benefit(s) and/or the advantage(s) of a Professional, usually with little or no information on a specific patient, setting the pressure / pressure range vs an informed user setting the pressure / pressure range for their machine. I just don't get it.

[tillymarigold]

Cinco, there's a *huge* difference between having a "wide-open" APAP that *could* go as high as 20, and setting your own pressure to 20. I was one of those that had a wide-open APAP home titration instead of an in-lab titration ... it never went above 11 in the whole month I was using it. If I'd set my CPAP myself to 14 or 16 or 20, I could have done myself some serious damage.

That said, my sleep doc told me outright to play with my pressure settings within certain parameters (only adjust it by 1 cm on each side at a time, keep the range less than 6cm apart, sleep with the new pressure for at least a week before changing again) and, well, I'm not one to ignore medical advice. My current range is 8-12, a 1 cm change from my prescribed range of 7-11.

[So Well]

Are you concerned about central apnea?

[LinkC]

One adverse effect of high pressure is it can trigger "central" apnea events.

But I'm no doctor, nor do I play on on TV. (or even discussion boards...)

[cinco777]

One adverse effect of high pressure is it can trigger "central" apnea events.

One adverse effect of driving is that it can trigger accidents. Accidents can kill (and quickly).

How quickly does a central apnea, triggered by high pressure, kill? On the first one, the second, the 1000th, never (because our brains jolt us back to consciousness and we breathe)?

Does anyone know how often? We know that Sleep Apnea kills gradually by impacting our heart, brain, etc. I'm just curious on how often and how fast Centrals kill people. Up to now, since I don't experience centrals, I've not thought about them. Now that they are a topic, I'd like to learn more about the possible patient outcomes.

[LinkC]

Then don't drive. Walking is healthier anyway.

What? You say driving is pretty much a required activity these days and, thus, worth the risk? Over-pressure is neither. Apples. Oranges.

How many needless, and easily avoidable, apneas are acceptable to you?

Now that they are a topic, I'd like to learn more about the possible patient outcomes.

Why not ask a sleep professional?