What do you all think about this?

[PMG]

I was diaganosed with OSA almost 5 years ago, they were only able to titrate me to 11 because I kept waking up. I was at 11 for a couple of years but I never did feel that it was enough.

In the last few months I've found this site and started educating myself, trying to learn about the different machines, etc. I have tried 2 other sleep study's in the past 3 years but both times I just laid there for hours not able to sleep at all and wound up leaving the sleep center frustrated that I couldn't fall asleep!

So last month my Sleep Doc said maybe we can get a rental for a-flex machine to see if it can get you to the correct pressure. I say WOW finally something that maybe I can do at home and get results, seeing I have no trouble falling asleep at home.

Anyway He can't find any DME that has a rental I can use, so I assist that we have to try something, so he says he can write a script for a brand new a-flex machine. I say great, I can't wait. I also tell him it needs to have a smartcard in it, something I learned from these smart people on this site.

I got my machine 2 weeks ago and it's working well, I can see some data on the machine but really the only thing that's worth a look is the 90% pressure, which seems to have gone up just a little each night.
but I really wanted it for was the smartcard, so my Doc could take a look at it and really see how this is working for me.

Well guess what I call my Sleep Doc yesterday to see when he would like to see me so that we can review the smartcard, I mean that's what he originally wanted to do when I was going to get a rental, he wanted to see me in 2 weeks. Well his secretary tells me that he doesn't need to see me for about 3-4 months! I'm like why would I wait that long to see him, I'm really curious on how I'm doing I thought that maybe he would be too! No she informs me that since I have the a-flex machine it is self-titrating me to the correct pressure and the Doctor is not to concerned inless of course I'm still having problems!

I'm like wasn't that the propose of the machine so he could look at the data and give my some feedback on how it's working! she tells me that the Doc usually only reviews the smartcard twice a year, Well I said I really would like to see him so at least I can see how it's working! So she said well we can make app with the Doc in about 2 weeks. Which is fine with me, that will take we into about a month on the a-flex.

Sorry this so long, I just couldn't believe my Sleep Doc didn't think it was necessary to look at my smartcard! I'm beginning to think that my doctor is not very proactive on my care, which means I definitely have to become it in mine.

So what all think, do you think my doctor should have been more interested on how I was making out on the new machine?

Thank you all in advance for any thoughts on this,
Patty

[Goofproof]

I'm beginning to think that my doctor is not very proactive on my care, which means I definitely have to become it in mine.

What would make you think that after only Five Years

Odd's are he can't read the card.

You have the APAP and a computer, if you had the software and reader, you would be able to do more than he ever could. Time is a-wasting, in fact 5 years is gone already. Jim

Check your P.M.'s

[Slinky]

Well, yeah, I would think that he'd want to see your results after 30 days of use. But ... hey ... you've got a good top of the line autoPAP. Did you buy it online or is insurance renting/purchasing it from a local DME supplier for you? If you got it thru a local DME supplier ask THEM if they will download the data for you and give you a copy.

I understand the curiosity but, really, until you've put 30 nights on the device there probably won't be much interest by the DME to do the download and printout either.

Save your pennies and buy the cable reader from twofactors in HongKong and the software from wherever you can get it cheapest online and then to heck w/both local DME supplier AND your sleep doctor.

[PMG]

Actually my insurance is picking it up. I did have to pay for a starting up fee? and then I get billed for a low monthly fee for about 8 to 10 months and then I guess the machine is officially mine! LOL

I did get the machine from my local DME but I didn't know they were able to download the data. Does it depend on a specific DME or are they all able to do that?

My sleep doc is going to go over the data with me when I see him in 2 weeks, his secretary said to just bring the smartcard with me. I just was really takin back when she told me that he didn't want to see me for 3-4 months, I mean hello I would like to know how this is working!

[rested gal]

I mean hello I would like to know how this is working!

Exactly!

I've long felt that either a DME or a doctor should download the data (from any machine that can give leak information) within the FIRST WEEK of treatment.

Massive leaks -- from mouth (if not using a Full Face mask) OR from ANY kind of mask -- can absolutely wreck getting effective treatment. Why ask people to go through weeks/months/years(!) of "treatment" if the treatment isn't even really being delivered...if the air is gushing out into the bedroom instead of going where it's supposed to go...to keep the throat open?

Unfortunately, most people are either given machines that can't record any useful data (like "leak") at all. Or, even if given machines that record full data, NO health professional is going to routinely download each new users' data that soon...within the first week.

When/if they EVER download the data from a machine that records full data, all they are really interested in is seeing the "Summary" report for a quick glance at how "compliant" (hours of use) the user has been been. Or maybe a quick glance at the 90% or 95% pressure used if it was an autopap trial.

I doubt if many of them even think to look at the leak rate...assuming they could even understand it from the Summary or Trend page report, which is the report they'd almost surely choose to have displayed. (The pages I skip.)

Looking at several nights of the DETAILED data (the "Daily Details" graph in Encore Viewer or Encore Pro, or the "96 hour" graph in Silverlining, for example) is the best way to get a real look at whether the user is having leak problems or not. They (the health care professionals) need to be looking for that during the FIRST WEEK, imho.

"They" aren't going to do that, though.

So, the best thing any cpap user can do, who's really interested in making his/her OWN TREATMENT go as well as possible....is.....

equip himself/herself with:

1. a machine that can record full data.
2. buy the software to do downloads as soon and as often as you wish.

and...

dig into this message board as if you were a medical student studying for the exam of your life.

[Slinky]

Exactly!

I've long felt that either a DME or a doctor should download the data (from any machine that can give leak information) within the FIRST WEEK of treatment.

Massive leaks -- from mouth (if not using a Full Face mask) OR from ANY kind of mask -- can absolutely wreck getting effective treatment. Why ask people to go through weeks/months/years(!) of "treatment" if the treatment isn't even really being delivered...if the air is gushing out into the bedroom instead of going where it's supposed to go...to keep the throat open?

Unfortunately, most people are either given machines that can't record any useful data (like "leak") at all. Or, even if given machines that record full data, NO health professional is going to routinely download each new users' data that soon...within the first week.

When/if they EVER download the data from a machine that records full data, all they are really interested in is seeing the "Summary" report for a quick glance at how "compliant" (hours of use) the user has been been. Or maybe a quick glance at the 90% or 95% pressure used if it was an autopap trial.

I doubt if many of them even think to look at the leak rate...assuming they could even understand it from the Summary or Trend page report, which is the report they'd almost surely choose to have displayed. (The pages I skip.)

Looking at several nights of the DETAILED data (the "Daily Details" graph in Encore Viewer or Encore Pro, or the "96 hour" graph in Silverlining, for example) is the best way to get a real look at whether the user is having leak problems or not. They (the health care professionals) need to be looking for that during the FIRST WEEK, imho.

"They" aren't going to do that, though.

So, the best thing any cpap user can do, who's really interested in making his/her OWN TREATMENT go as well as possible....is.....

equip himself/herself with:

1. a machine that can record full data.
2. buy the software to do downloads as soon and as often as you wish.

and...

dig into this message board as if you were a medical student studying for the exam of your life.

I tend to agree w/you completely, RG, BUT .... I tend to think that most of these "sleep doctors" not only don't even look at the leak data, they don't even really understand the leak data reports AND I think it is because they don't consider the mask fit and leak to be their responsibility. The way the hiarchy (sp?) seems to be set up in the sleep profession, its the local DME RT's responsibility to ensure mask fit and leak problems. After all that is one of the reasons they are reimbursed more generously and "can't afford" to sell xPAPs as reasonably as the online DME suppliers. Or at least that is one of their claims (sob stories) they give the xPAP manufacturers and CMS (Medicare) and their lobbyists tell Congressional members.

We all know it can take a good 10 days to 2 weeks to "know" for sure whether a promising mask fits comfortably and few newbies are going to recognize the more subtle leaks. So, it SHOULD be the DME supplier's RTs who SHOULD be calling the patient and doing the downloads once a week that first 30 days to ensure that the patient DOES get a mask that fits comfortably w/no or a minimum of leaks. And if getting the RIGHT mask and an acceptable leak rate isn't achieved during the first 30 days then the DME's RT should continue w/the weekly data downloads and mask selection and fit the next 30 days too until an acceptable leak rate and comfortable mask fit IS achieved.

The other alternative being that the sleep LAB do weekly downloads AND mask fit and leak evaluation until comfortable fit and acceptable leak rate is achieved. Until that fit and leak are acceptable its seen as a "waste" of the "sleep doctor's" time to see the patient again, don't you see. (At least in the mind set of the sleep "doctor".

Its the sleep profession insisting on keeping the software out of the hands of the patients AND refusing to provide the necessary service and education to the patient in the USA, NOT the manufacturers. Its the American sleep profession lobbying the FDA, Medicare and congress that prevents easy access for patients to monitor their own therapy. The very profession that is supposed to have the patient's best interests at heart. Yeah, sure. Uh huh.
JMO

[Guest]

I hope you get the results very soon. I had the same thing happen to me. I had a pressure set at 9, but after over a year of faithful 100% compliance, things just didn't seem right. I went to the sleep doc who told me that since I have lost 60+ pounds, to set the pressure down to 7, and play around with the setting up to 9 (he knows I can change the pressure on my own). I messed around with that for over a month-I felt even worse. I happened to be at my DME supplier for a new mask, and happened to mention my plight to him. He sent me home with an apap to use for 2 weeks, then he checked the numbers. My pressure needs averaged out at 12.5!!! I have been running at that now for over a month, and I have felt improvement, at last! So much for losing weight to get off the hose!