What does a DME actually do? MY story

leejgbt wrote:Patients are not allowed to adjust their CPAPs. Our policy states "the Rx is set by a heath care professional on the order of a physician. The thought being a patient doesn't have the ability to assess their own medical condition (i.e., why they see the Dr. in the first place) and changing their Rx could result in them affecting their health, thus the reason why we prevent the patient from changing the Rx (benefit doesn't outweigh the risk)".

Your company does many positive things. I wish my DME did half of them. But when you tell me "patients are not allowed," I go through the roof.

Your thought that a patient is unable to assess themselves is totally unacceptable. My former primary care physician, for years, took the attitude that if I would just stop stuffing my face and lose some weight "IT," whatever "IT" was would clear up. He said this even after I had lost 180 pounds. This applied to my gut issues (which I solved with diet after research), my inability to sleep, my hip pain, and the post-menopausal bleeding which was the first sign of my cancer. If I had left it up to him, I would not have gone to my gynecologist, would not have gotten the surgery, and would not now have a year and a half of negative tests behind me.

I live in my body. I know my body better than anyone else in the world. I may consult a medical professional for advice, but no one, and I do mean NO ONE tells me what I am permitted to do. You would lose me as a patient the moment you said you would not permit me to do something, no matter how good the rest of your services might be.

leejgbt wrote:If the DME you are looking for is not accredited go somewhere else.

Are you going to tell my insurance which DME I'm permitted to go to? I didn't choose my DME. My insurance did. And I've had better service from my on-line DME that ever from the brick and mortar one. Yesterday was my one-year anniversary. Didn't hear a peep out of them.

By the way, folks. I did raise my pressure lower limit from 7 to 8, to see if it would minimize the AHi incidents. It did--dropped AHI from 2 to .6--do you think the Cpap police will be after me for violating the Cpap law that has never been shown?

I will keep saying what I believe to be the correct way to treat sleep apnea. I have been a CPAP user for 8 years. I have been a DME manager for over 25. I am a student of this game more than almost anyone on this blog. This being said I learn something new every day from the trained sleep professionals, i.e. RTs and sleep physicians. 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).

So, again I will give any advice possible about any billing issues, how to find a good DME company, or anything alse NON-CLINICAL.

Pay attention self dosers you might actually learn something.

leejgbt wrote: . I am a student of this game . This being said I learn something new every day from the trained sleep professionals, i.e. RTs and sleep physicians. They are absolutely consistent about one thing; do NOT self dose.

It seems like a game only when you are a dme charging crazy prices.
Funny my pool boy told me it was too dangerous for me to regulate the chemicals in my pool, my lawn guy told me it was too dangerous for me to cut my grass, the dog walker told me I shouldn't walk the puppy it would be too dangerous for my back .The one thing all these people and your in house rt have in common is keeping a job.

When changing your own pressure....you are only watching the AHI meter, perhaps watching an O2 sat if you have a pulse oximeter. Your AHI might be going down, but what about the heart palpitations and irregular heartbeats that could be occuring as well as central apneas that could be caused by the change in pressures? There is more to sleep therapy than just AHI and sats.

Autopapdude wrote: the Cpap law that has never been shown?

Speaking of "never been shown", how are you coming with the federal law entitling a patient to his/her prescription?

leejgbt wrote

Autocpapdude and people like him are dangerous.

You sound like a broken record, and you know what a broken record is good for - Absolutely Nothing.

DME folks, with attitudes and "know-it-all" egos like you, are the reason that I failed CPAP 3 years ago. CPAPTalk folks like autopapdude are the reason that I succeeded this year. They, not you and your DME breathren, provided the experiences, knowledge, guidance, and assistance that helped me navigate the challenging journey to the successful CPAP-enabled treatment of my Obstructive Sleep Apnea problem.

I suggest that you find another venue for your self-serving DME lectures. Good luck.

Cinco, it almost sounds like polysomnman brought some buddies with him this time. Unless he's figured out how to beat the "Also posted as" thing and they ARE him...

LinkC wrote:Speaking of "never been shown", how are you coming with the federal law entitling a patient to his/her prescription?

The presence or absence of a federal law notwithstanding, I would not put my health (or my money) in the hands of a doctor who had so little regard for my intelligence as to not give me a copy of my own prescription. Just totally ridiculous.

The only thing I will add to this is to try and look at it from the legal point of view of a DME company.

IF a DME company should give a patient instruction on how to adjust the pressure on the device and IF that patient raised the pressure too high and IF it was shown to cause Central Apneas and IF that patient died in their sleep.

Exactly how long do you think it would be before there was a long line of Lawyers salivating at the door of that patient's family?

I can tell you from very personal experience that the threat of litagation causes more hassle and strife, creates far higher obstacles and adds so much extra cost to the healthcare process it's not even funny.

Especially in the realm of healthcare the first response to anything negative is "Report them, bring charges, sue". Knowing that response is out there is the reason for a LOT more answers (Or lack thereof) than many people realize.

Again I come back to: Yeah, it sucks.

Autopapdude wrote:.... I'd prefer that you don't post on my thread, as I have no regard for your opinion. So, be so kind as to avoid responding to me, or posting on MY personal story thread. I will regard any such posting as repetitive spamming.

Well, NO. This is not YOUR thread. Your choice of title and content confers on you no special rights nor privileges. There is, on the other hand, a presumed obligation (by choice, not strictly enforced) of civility, which you have chosen to ignore.

leejgbt wrote: .... The thought being a patient doesn't have the ability to assess their own medical condition (i.e., why they see the Dr. in the first place) and changing their Rx could result in them affecting their health ....

There is a wide spectrum in the "ability to assess," involving both patients and health care providers. CPAP users (the title "patients" is in itself arguably perjorative) sometimes have the disadvantage of lack of critical objectivity, but the possible advantage of enthusiasm and interest. Consider also that the subset of users who would even THINK of adjusting their own settings (and reading forums such as this) are likely atypical in terms of knowledge and involvement. (It is unfortunate that knowledge and wisdom don't always correlate well with each other.) In particular, those with interest in accessing their own data are more likely to be reasonable as well as knowledgeable and highly motivated. Perhaps you did not intend to write quite so value-neutrally that "changing their Rx could result in them affecting their health," but I see this as a VERY POSITIVE and desirable outcome -- taking responsibility for one's own health is a rare and wonderful opportunity, to be embraced.

Yes, there is often far too much negativity expressed on this forum against the medical profession. (Again, those who gravitate toward this forum are more likely to be those who have had unsatisfying interactions.) The ideal process is partnership with the physician - I am paying for his/her knowledge, experience, objectivity, and time - with changes, and rationales for changes, being openly discussed.

I am impressed by the services offered by leejgbt. Would that more distributors did the same. Still, I expect little more from my DME than I do from my dispensing pharmacist: to provide me with the item(s) my physician and I discussed and agreed upon, and the "standard information" which typically accompanies the product. If I want more information, I will talk with my physician and/or get it myself. If I choose to vary from the instructions (directions? guidance? advice? best guess?) which appear on the pharmacy label, that is my decision. My actions are based on my evaluation of my own knowledge and competence (and the limitations thereof), and on my presumption of the knowledge and competence of my physician (and etc.).

In fact, CPAP, for the VAST majority of users with uncomplicated OSA, is extremely safe, regardless of settings. We will likely survive even our own foolishness. Velbor

cpapqueen1 wrote

When changing your own pressure....you are only watching the AHI meter, perhaps watching an O2 sat if you have a pulse oximeter. Your AHI might be going down, but what about the heart palpitations and irregular heartbeats that could be occuring as well as central apneas that could be caused by the change in pressures? There is more to sleep therapy than just AHI and sats.

Not so, some of us look at more than AHI, and O2 saturation. In our analyses, we look at and consider such things as: 1) how restful was our sleep, 2) how many times did we get up during the night, 3) how long did we sleep, 4) did we snore and, if so, how often and when, 5) were there many Flow Limitations and, if too many, take measures such as nasal rinses before bedtime, 6) look for patterns like Positional Sleep Apnea and make changes, and numerous other things that can and do affect our sleep.

You assumed that we are not monitoring for heart palpitations and irregular heartbeats. You must not be aware that there are inexpensive, multipurpose heart monitors now available in the marketplace. I'm a runner and have monitored my heart while awake and sleeping using my Polar RS800 running watch/computer (2007 technology). My runner's watch can record heart rate variability (time between heartbeats) at one second recording intervals, and the Polar Software (Polar ProTrainer) produces charts that clearly show and statistically report the most common irregularities that may occur. When I shared my HRV charts (from both day-time activities and night-time sleeping) with my cardiologist, he was amazed. He told me to bring recent charts with me to my future appointments as they provided him with very valuable information.

I have a GPS sensor and footpod accelerometer for my runner's watch but have yet to find a use for them in monitoring my CPAP-enabled sleep therapy. Any suggestions?

I think that everyone here needs to listen to one another. Leejgbt and Mattman are letting us know the rules that they have to follow and because they are trained RT’s believe that they are giving sound advice. Some of us Cpapers have had bad experiences with DME’s and have turned a deaf ear to the message. For the average person, changing their own pressures can be dangerous because they will not be patient, use the software, and jump all over the place if the results are not good. Most of the regular posters have educated themselves and methodically work to maximize their therapy. Both parties want the same thing and if we can find a middle ground more people will benefit from our collaboration. We users who have had bad experiences, need to be slower to judge, and the DME RT’s need to do the same. Fighting will only drive away people who desperately need your help!!

leejgbt, thank you for bearing w/us and the animosity some of us have expressed. I regret that some see the need to aim that animosity at you. It IS possible that WE can learn from EACH OTHER. YOU could even learn from US believe it or not. It depends on your patience, how thick-skinned you are obviously, AND your willingness to keep an open mind and recognize the value of the information we share here. Some of it really is worthwhile to the sleep professionals IF they can see and recognize it.

I do wish you would answer this question I asked earlier, please.

Slinky wrote:However, I AM going to ask you since your clients/"Patients are not allowed to adjust their CPAPs", just what you and your company would do when I DID take it upon myself to change my therapy setting(s)??

Given the level of service and support your company provides I quite likely might never have to take it upon myself to alter my therapy settings - but just suppose I did, what would your response be? What would your company's response be?

Sleepy Taz wrote:I think that everyone here needs to listen to one another. Leejgbt and Mattman are letting us know the rules that they have to follow and because they are trained RT’s believe that they are giving sound advice.

Just for the sake of clarity, I'm not an RT. Just a guy who's been in the business for years and years. Don't ever want to give anyone the wrong impression.