UPDATE: THE FUTURE OF SLEEP THERAPY

[Muse-Inc]

...They want the DME's to start doing their jobs better, and to have people stop guessing at what they should do and have a reliable source for information...Not my words, its theirs. So if you want to go on a rant, make sure you don't aim it at me. I am just telling you what I was told.

Thanks for the heads-up. Frankly, I think this is the wrong approach for equipment mfgs to take; most of the DME folks I've talked to are pretty clueless about SDB and equipment; I'm sure there are many competent people working for sensible DMEs, several actually come here and chat as you do, but they seem to be the exceptions. When DMEs demonstate they are willing to give me information that I can use to survive sleeping, then I might consider listening to them...but I gotta tell ya, I think it'll be a cold day in he## before they have the information and are willing to share it. If patients get educated, DMEs cannot take advantage of us and our insurance, so what's in it for them by educating patients? This is my life we're talking about and I'm not about to trust it to someone whose job it is to sell equipment and keep me uninformed. The current sitution does not ensure that we get the information or the equipment we need to make CPAP therapy work...that's why we come here, to get the info from other users who have resolved the challenges we are facing.

[fuzzy96]

so long as we are "patients" and dme's are "customers", being a captive market, we will get what they give us.

anyone from aarp listening?

i believe that is probably the best way to instigate change.
or does someone have a "mickey" we could slip into congress so all our reps and senators get osa????? lol

what ever happened to we the people???? did it die with washington, jefferson, adams, etc and thier generation???

ok stepping down from the soapbox , .....

[no_more_headaches]

I doubt you will see the software available to the public. They don't want the public changing their pressures and self medicating. This is why ResMed doesn't sell their CPAP's to alot of websites either. They want the DME's to have a role in people's health. They want the DME's to start doing their jobs better, and to have people stop guessing at what they should do and have a reliable source for information. I've talked to both companies reps, and they hate the idea of people trying to "self medicate" their pressures. Not my words, its theirs. So if you want to go on a rant, make sure you don't aim it at me. I am just telling you what I was told.

I donated one of my kidneys to my wife a couple of years ago and in the recovery process the hospital (A major one) told my wife they want her to be her own advocate. She takes a lot of meds and they have a lot of patients. They fully expect her to be able to read her blood labs and get in touch with them when things are off. She has standing blood lab orders and can go in whenever she wants to get various levels checked. The labs are faxed to the doctors and our own Fax machine. They are also starting to go online. She also periodically gets antibody levels checked and gets special results back for those. She pushes them for clear threshold markers where she can be concerned or relaxed. She and her doctor tweak her med levels all the time to the point now she can predict there answers very reliably.

This is all very similar to having the CPAP software and working with your doctor and not the FRAKKING DME. The doctor sets and tweaks the prescriptions. My doctor is a sleep doctor not a GP and she has suggested I tweak the pressure levels at my discression to see if I get better results. She said the sleep study was really just a starting point for pressure. She was also willing to create specific prescriptions for the products I wanted. She specifically stated it the patients therapy.

[PSGman]

I totally agree with you guys, most DME's are fairly ignorant when it comes to helping out their patients. I have come across some who are very good, but there are more bad companies out there. The biggest problem is that they are now just getting DME's accredited like they do sleep labs. Many companies are owned by people who just want to make a quick and easy buck. They hire people who have know knowledge of what they are doing. WHy? Because they can pay them next to nothing.

I am a sleep tech by trade. I try my best to educate my patients, but how can someone with apnea expect to remember everything that is told to them while they are sleep deprivated? I don't think you can expect them to retain much of what is told to them on a one or two night study. This is why the AASM is requiring sleep labs to have better follow up. It is going to take awhile, but hopefully newbies that come here in the near future will start having a better go than people who have been on it for several years.

As far as the suppliers trying to limit the regular joe from obtaining their own information, well I have mixed feelings on that. I understand where you guys are coming from, but I also know where they are coming from. They want the right people at the DME's helping you guys out. Its going to be a slow process, but it will get there. They have to act now, because for every one person who seeks information on their own, there are 9 others who just throw their machine in the closet. ResMed wants the DME's to be more accountable with their products. I think you will see the top CPAP companies setting rules to even sell their equipment in the future. This is a positive thing, because it will force the businesses to hire people who care, and who are educated enough to help the people coming in. The medical field has come along way, but its not perfect. IT will never be perfect, us humans will make sure of that. I do hope that all of you will give feedback to your labs and DME's. This is the only way things will change. Its great that you can come here and talk about things, but if you don't let your labs and DME's know different ways of improving, things won't get better as quickly. We do listen. We send out questionaires for a reason. Every lab I have worked at keeps the negative feedback and we review at our monthly meetings. We try to prevent the same complaint from happening twice. It doesn't matter if it is a leaky faucet in the bathroom, or if you felt your service was poor. We do listen and react.

[carbonman]

I can not believe that the information/guidance you
would get from an educated DME or doc or sleep lab
is going to be much better than what we get here.

How many times has someone gone to their DME/doc and
been told, "try this....try that"?
My guess would be 8 out of 10 times, the DME/docs
are making a SWAG.

98% of the time, it's not rocket science to make
a guess at a pressure change.
No one has blown their brains out w/a 1cm change.

Give me a break. This is about $$$$$.....
...pure and simple.

...and PSGman, datguyyouallhate or polysomno-man,
have the cajones to just pick an identity and
accept who you are.

[nobody]

how can someone with apnea expect to remember everything that is told to them while they are sleep deprivated?

Write it down for later reference.

[nobody]

Agreed. My doctor sends to DMEs a standing order of +/- 2cm for all his PAP patients. My doctor, the sleep lab and the people at the DME have never had time or patience to download my card, review my results and get back to me on the optimal pressure for me. (I'm not sure it would be would be unreasonable to expect them to do that for every single patient, otherwise I'm not sure what they are being paid for). It was much faster and easier for me to do it myself. I'm happy with my pressure now and seem to be doing well. It's true maybe not everyone can do that for themselves, but I really believe most people can if they are educated on how the machine works and how to read the results. The problem is not that DMEs don't have qualified people, it's that there is too much secrecy surrounding these machines. Patients in other areas of medical problems are educated on much more complicated things they need to do for their health care. I can't see any other motive but money to keep the use of these machines a secret from patients.

I can not believe that the information/guidance you
would get from an educated DME or doc or sleep lab
is going to be much better than what we get here.

How many times has someone gone to their DME/doc and
been told, "try this....try that"?
My guess would be 8 out of 10 times, the DME/docs
are making a SWAG.

98% of the time, it's not rocket science to make
a guess at a pressure change.
No one has blown their brains out w/a 1cm change.

Give me a break. This is about $$$$$.....
...pure and simple.

...and PSGman, datguyyouallhate or polysomno-man,
have the cajones to just pick an identity and
accept who you are.

[DreamDiver]

Give me a break. This is about $$$$$.....
...pure and simple.

[soap box][soliloquy style="James Tiberius Kirk"]
Some DME's actively attempt to keep patients from knowing their AHI directly off their machines if they can. The default setting for 7-day and 30-day AHI's on the M-Series Pro is 'patient accessible' on the LCD readout. My DME hid those panels before I even got the machine. When I looked for it, I didn't see it, so I changed it back. I called to ask about supplies (back when I was still using a local DME) and she asked about the compliance check number. I gave her that. When I told her my AHI's were looking better and better, she said "You're not supposed to be able to see that." I said "Oh, really? Huh. Perhaps I'm mistaken." But she knew that I knew she'd hidden those panels on purpose.

DME's want you to go through oximeter testing - rented through them, read by a specialist, okayed by a doctor, then bring the machine back to them to have them change the pressure. It takes months for just one cycle of 'validated pressure change' this way - months of precious time not being well, putting money in someone's pocket at each stage. All that needless testing costs time and money when merely paying attention to AHI's is a better, simpler guide to titration for the bulk of xPAP users. My DME went to school for this, and could follow the directions, but she didn't use the machine and she had no real understanding of what the numbers meant. She'd never even seen the software output and could not guess what it meant when I showed it to her. It's frightening to acknowledge that most DME's are barely knowledgeable enough to know how to change the pressure settings. DME's and Insurance companies wonder why patients stop using the machines. They can't breathe and they are purposefully kept ignorant about how to make things better.

Frankly, hiding that kind of information from the patient should be illegal. It's like telling a diabetic to dose their insulin based on blood testing done last month. In fact, it should be required that the patient or a patient advocate learn how to change their settings wisely. Patient-available computer software should be a required part of the program, or panels should include legible graphed information of AHI, Central Apnea and leak rate data, etc. DME's should be brought in to change settings only as a last resort - not as a common practice to increase sales at the cost of other people's continued ill health.
[/soliloquy][/soapbox]

[ozij]

From ResMedica, ResMed's clinical newsletter. All added emphasis mine.
Note the Dr. Wilcox's expectations from his patient, and the tools the patient uses.

Phil Lovell lives in Sydney’s Inner West and is an international Resource Manager for a banking software solution supplier. Phil has been receiving treatment from Dr Ian Wilcox since 2002. Over these five years Phil has worked with Dr Wilcox so that his treatment could reflect changes in his condition. “When I first went to see Dr Wilcox, the pressure on my CPAP was very high. He said I needed a CPAP with variable pressure. He told me that he wanted me to be responsible for what’s going on, so I monitored my therapy regularly.” Phil would capture the results from his AutoSet Spirit™ and view them in ResMed’s AutoScan™ software, sending them to Dr Wilcox at regular intervals.

Phil was treated successfully for a number of years and experienced the benefits of sleeping better, having more energy and being more active. This changed when an occasional arrhythmia became more permanent. “I was like a car that’s not firing on all cylinders,” he explains. “My mind was saying ‘let’s move on’ but my body was saying ‘no’. It came to a head one day—I felt so ill and dizzy I had to go and see my local doctor, even though I had a scheduled appointment with Dr Wilcox the day after!” An angiogram showed that there was no blockage in the heart. He then underwent a cardioversion, and his heart rhythm normalized for a short time. After a second cardioversion Phil noticed on his Autoscan software that during the period when his heart rhythm was normal his apneas were improved, but on the night when the apneas returned, the arrhythmia also returned. He faxed his report off to Dr Wilcox.

If you're wondering who Dr. Wilcox is, you can find the info here:
http://www.resmed.com/au/assets/documen ... 0907r1.pdf

[carbonman]

He faxed his report off to Dr Wilcox.

O, do you think this is an exception to the norm??

I do.

[ozij]

He faxed his report off to Dr Wilcox.

O, do you think this is an exception to the norm??

I do.

Of course it is - if you consider the USA the norm. This is in Australia. But it's published - proudly methinks - in a manufacturer's journal.

O.

[Guest]

first off, chill out carbonman. what does it matter what name I use anyways? It shows what my main identity is regardless of the name I use. Everyone can see that, I am not trying to fool anyone into thinking I am multiple people.
I was merely telling you guys what I was told by the reps. I don't believe its all about the money, its about the liability. Just because most people who would would use the results in a educated way doesnt' mean that everyone would. Seriously people, just because most of us are of sound mine doesn't mean that there couldn't be people out there that would mess themselves up or prevent their treatment from working properly if they had the ability to change their pressures. You can talk about how great this site is all day, but the point is not everyone comes here for help, or has the ability to figure out how to adjust their pressures properly. It chalks up to, one bad apple spoils the bunch. Just to be clear, I am not justifying their actions, I am just telling you what I have been told. Trust me, if I could change rules regarding OSA or any other sleep disorder, I would try to make things as easy and painless as possible. Unfortunately the government and insurance companies have the ultimate say now.

[Muse-Inc]

...Unfortunately the government and insurance companies have the ultimate say now.

That's the whole problem! It's MY life. I CARE about my therapy a he!! of a lot more than anyone who's just doing their job or running a biz. Which one do you think I trust to get it right? Improvements in the training and delivery of info by sleep medicine personnel and some sort of weeding out process for those unsuited to dealing with those with SDB is desperately needed, but meanwhile I have no intention of doing much more than listening to anyone who hasn't proven their reliability to me..why should I, it's my life at stake not theirs.

[no_more_headaches]

I am trying to understand the difference between pharmacies and DMEs. The both provide therapy devices that require prescriptions. They both have to deal with insurance companies. With pills we get a supply that says so much a day and if we want we can double the dosage.
In the case of my wifes kidney transplant she is tweaking the prescription all the time.

The pharmacy is not involved in the game. You would think they would have the same so called liability issues except for the case where you rent the device vs purchasing the device.

first off, chill out carbonman. what does it matter what name I use anyways? It shows what my main identity is regardless of the name I use. Everyone can see that, I am not trying to fool anyone into thinking I am multiple people.
I was merely telling you guys what I was told by the reps. I don't believe its all about the money, its about the liability. Just because most people who would would use the results in a educated way doesnt' mean that everyone would. Seriously people, just because most of us are of sound mine doesn't mean that there couldn't be people out there that would mess themselves up or prevent their treatment from working properly if they had the ability to change their pressures. You can talk about how great this site is all day, but the point is not everyone comes here for help, or has the ability to figure out how to adjust their pressures properly. It chalks up to, one bad apple spoils the bunch. Just to be clear, I am not justifying their actions, I am just telling you what I have been told. Trust me, if I could change rules regarding OSA or any other sleep disorder, I would try to make things as easy and painless as possible. Unfortunately the government and insurance companies have the ultimate say now.

[Rapunzel111]

What is the date?The end of the Mayan calendar as written in the Book Of Sleep Apnea?Oh My!