data call

[gorgo]

I'm a newbie,

I had my sleep study and the sleep doc said I had mild sleep apnea. I don't recall the number of occurrences nor did they provide me with any hard info.

They brought me in for a titatration and got my to zero occurrences at a setting of seven. They tried me on swift LT and swift II. I slept with the swift II because I thought the pillows fit better.

I was somewhat skeptical because I have been a chronically congested / mouth breather for most of my life. They held a FF mask on my face but I didn't sleep with it.

The DM guy showed up and said here's your stuff. ( He delivered the swift LT) The machine doesn't appear to collect any data other they display therapy / blower hours.

My question is this should I request one that records data? (ie: software) Did the doc need to prescribe it?

It appears by scanning the posts that most people have the means to "see" how they are doing. all I have to go on is do I feel any better.

I have not tried taping my mouth or straps. I did wake up this morning and felt like I had been liking out ashtrays, but I used to get that before CPAP ( I thought it was allergies)

(After one week the answer is not yet or maybe) I did get a follow up call from the DM guys and they basically asked me do I feel any better. I said I couldn't tell and they are going to call back next week.

Should I try a FF mask?

[Slinky]

Assuming you want to know, and have some understanding, of what is going on w/you, your apnea and your CPAP therapy, which seems obvious since you searched for and found this forum:

1] Call your insurance company and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one. That gives you more negotiating/bargaining room to get what you want (w/in reason).

2] Ask for a copy of the doctor's dictated results (1-2 pages each) AND the full scored data summary report w/condensed graphs (5+ pages each) from BOTH your sleep evaluation study AND your titration study AS WELL AS a copy of your equipment order (script). These are all part of your medical records and as such you have a legal right to them under HIPAA (assuming you are in the USA).

3] The CPAPs you want to investiage and decide on are:
a] Respironics RemStar M Series Pro w/C-Flex
b] Respironics RemStar M Series Auto w/C-Flex
c] Respironics RemStar M Series Auto w/A-Flex

Your current local DME obviously prefers to handle the Respironics brand. However, if you change local DME suppliers you may find one who prefers another brand:
a] Resmed S8 Elite w/EPR
b] Resmed S8 II Elite w/EPR
c] Resmed S8 AutoSet Vantage
d] Resmed S8 II AutoSet w/EPR
e] Covidien (Puritan Bennett) Sandman Auto
f] DeVilViss AutoAdjust IntelliPAP

The above are all fully data capable CPAPs and APAPs, both types, CPAP and APAP, fall under the insurance billing code HCPCS e0601 and are reimbursed at the same rate.

If you decide you want the software for any of the above fully data capable xPAPs insurances do NOT pay for them and you do NOT need a script to buy them online whilst you will need a script to purcahse them from a local DME supplier IF they will sell them to you even then (and at a LOT higher price in all likelihood).

[jskinner]

My question is this should I request one that records data

Absolutely

Should I try a FF mask?

Yes. I would recommend the Liberty or Hybrid

[Kiralynx]

Gorgo,

I'm pretty new at this, myself, having had my machine less than two months. Yes, you want a data-capable machine. Some DMEs may try to tell you that you don't need anything other than compliance data -- and this is hogwash. Data-capable machines cost more -- and they get paid the same, so if you have a cheaper machine, they make more money.

The data capable machines are essential, in my view. It annoys the blazes out of me that it's proprietary card readers and software, but it's what we have.

I have complex apnea, which means that if I don't monitor everything, my therapy is not effective. When I first started, my leak rates should have been in the 28-35 range for my mask and pressures... but when I checked my data, they were running in the 40s. I was also throwing central apneas.

I realized that I was waking, struggling to breathe out against the pressure, and noted the times this happened, then checked my data the next morning. Sure enough, the struggles to breathe out were related to a what I thought was central. So I spoke with the RT, and got a revised prescription. (I am on a Bipap Auto SV.) By lowering my EPAP, we eliminated the breathing out struggles, and apparently eliminated the central apneas. With my "brandy keg" (more below), I eliminated the mouth-breathing, and brought my leak rates into the correct range.

I can tell the difference in the way I feel in the morning.

Slinky's advice about the reports to ask for is also, right on -- and in fact, I'm copying it to a file so I can write the letter to the sleep center where my studies were done. <grin> I have the summaries. I do not have the detailed ones, because my center keeps telling me they don't have those. They have the summaries and the raw data.

I wasn't a mouth breather until I started using a nasal mask, However, there are solutions for that, other than a full face mask, if you don't feel you could tolerate one of those. (I can't.) You'll hear about chin straps, and the Pap-Cap, and taping. For myself, I use none of the above -- I use a variation of something the CPAPer husband of a CPAPer friend uses -- he got a cervical collar at the drugstore, one similar to this one:

http://www.drugstore.com/products/prod. ... atid=10291

This was too hot for me, and taping didn't work at all (other than kicking my claustrophobia into over drive, that is!) for me, although it does work for many people. I've designed a roll of very firm rubbery stuff (it's actually a worn out one of these

http://www.hydrofit.com/home/hyf/page_3 ... html?stpl=

which I have rolled up very tight, covered with soft fleece, and added a neck strap to. I put on my CL2 mask, then fasten this contraption under my chin like a St. Bernard's brandy keg, and it keeps my jaw shut all night.

"Ash tray mouth" is not uncommon for mouth breathers. I called it "glue mouth."

By the way -- if you slept with one mask, and the DME delivered another, call them and tell them they brought the wrong mask, and you would like the correct one, and specify which one it is. The Quest for the Perfect Mask is the key to the success of your therapy -- if you can't stand the mask, you won't wear it. Therapy which isn't attempted is one hundred per cent ineffective.

Good luck, and welcome to the Forum -- we're glad you found us, though sorry you needed to, if that makes sense!

[jskinner]

It annoys the blazes out of me that it's proprietary card readers and software

I'm not sure what you mean by this? How could the software not be proprietary? Are you expecting open source for a medical device?

[jnk]

It annoys the blazes out of me that it's proprietary card readers and software

I'm not sure what you mean by this? How could the software not be proprietary? Are you expecting open source for a medical device?

I believe Kiralynx may have been highlighting how some of the software is proprietary in the sense of being nonstandard and lacking direct compatibility with other software--Excel, for example, in many cases.

It is true these things are medical devices, but they could give much more effective therapy if they all automatically came with free, user-friendly software for the patient to track his or her own therapy. In a perfect world, there would be one easy-to-use program that could be used to download the important information from all of the machines. The companies could still make their money from the price of the hunk of plastic and wires and from any official proprietary software for the clinicians to use proving compliance or whatever else they are supposed to do. But give free easy-to-use software away so that lives can be saved once the hunk of plastic and wires has been paid for. Just because there is official software for the "experts" to use, that doesn't mean the average joe should be forced to pay for that and use that in order to improve therapy.

That's my crazy, impractical opinion, anyway.

jeff

ps- please note that my attitude may have been affected by my having to use ResMed's software! So that is where the above rant is directed.

[Kiralynx]

It annoys the blazes out of me that it's proprietary card readers and software

I'm not sure what you mean by this? How could the software not be proprietary? Are you expecting open source for a medical device?

No, I'm not expecting open source for a medical device. However, it irritates me to pay over $100 for a specific, proprietary card reader when a multi-card reader can run around $30. It also annoys me to pay over $100 for software which is less capable than the free Adobe Acrobat Reader. I recognize their concern about people modifying their cards, but there's absolutely no reason why Encore Viewer shouldn't have a database in it to store the detailed information from the cards. (Note: CPAP.COM's bundled price on the card reader and the software was the best one I found.)

I have the utility someone wrote for extracting data from the cards, but have not yet been able to transfer it to the machine which will recognize the card reader. The machine which recognizes the card reader does not have an internet connection. (The inability of my machine to connect to the card reader is unique to my machine, which is over six years old, and very well used -- there may have been some damage to the USB ports when we carried it, covered, through the rain to evacuate for Hurricane Katrina, as they haven't worked since then.) I've had lots of helpful hints for how to deal with this elsewhere, but hoped to have resolved it by now -- and just haven't. (The new computer will solve these issues.)

I feel it is absurd that the Smartcards hold 6 months of compliance data, but only one week of detailed information. Electronic storage these days is much better than that -- if it holds six months of compliance data, it could / should / ought to store six months of detailed data, also. DSM has some PDF files which have five or more weeks of detailed information in under 4 MB. With flash drives at 16 MB being as cheap as they are, there's no reason (IMO) we shouldn't be able to have long-term storage of our detailed data easily available to us.

My personal opinion is that Encore Viewer should be free. Then have an intermediary software with a nominal charge -- maybe $50 or so, which has the Viewer AND a data base, and no ability to modify the data card. THEN have the Encore Pro in all its glory for the professional users, with its current professional price. An analogy would be (coming back to Adobe), the free Adobe Acrobat Reader, Adobe Photoshop Elements, and the full Adobe Photoshop. The analogy doesn't quite hold because Reader isn't specifically a viewer for only images, but hopefully, you understand what I mean. The viewer alone is free. The program for the beginning or non-professional has a nominal fee. The full professional edition used by people who do this kind of thing for a living has a professional price tag. Of course, Respironics is unlikely to listen to just me.

(Apologies to Gorgo for inadvertently hijacking your information thread.)

[gorgo]

Thanks for the advice

[Kiralynx]

That's my crazy, impractical opinion, anyway.

Jeff,

Actually,, you said exactly what I was thinking, and didn't say as well as I might have. Thank you for putting my thoughts into a more comprehensible form.

[jnk]

That's my crazy, impractical opinion, anyway.

Jeff,

Actually,, you said exactly what I was thinking, and didn't say as well as I might have. Thank you for putting my thoughts into a more comprehensible form.

Kiralynx, I think you put it all very well, myself. Glad you didn't mind my chiming in. I wasn't sure you had seen jskinner's post, and I wanted to be sure that part of your point wasn't lost.

I understand the FDA's interest in it all. I even understand the companies' wanting to protect the validity of reports generated by the software for their machines. But if a company could find a way to address those concerns but still make a usb port link and user software that was cheap and effective and easy to use, I think that company would gain a tremendous edge in the market. The problem is that there are too many jobs to be protected, so the end user loses. And that's a shame, because it is a matter of life and death for the end user, or if not, at least a matter of quality of life in a very real way.

jskinner, now that you know what Kiralynx and I want, can you please call all the manufacturers and let them know to please get on it! Or can you at least sneak us some kind of an underground program and interface system that will do all of that for us?

[jskinner]

jskinner, now that you know what Kiralynx and I want, can you please call all the manufacturers and let them know to please get on it!

I with they would talk to end users... every attempt i have made they refuse to talk and say I must go do my DME...

Or can you at least sneak us some kind of an underground program and interface system that will do all of that for us?

Which I could. Problem is that the format of data on the smart card is not published.

Cheers, james

[fuzzy96]

ok back to your post------ yes on a data machine auto if cpap if possible due to the fact that things change(weight,sleep patterns etc) that may affect your pressure settings.


next -- your best therapy should be with a nasal type interface but you should have a full face as a backup if you can't use the nasal for any reason (cold, stuffy nose, mouth breathing etc

[DoriC]

Kiralynx, this data discussion is way above my head but interesting. I wanted to know if you've found a way around the problem with the Smart Card losing data every 7th day on Encore Viewer? Thanks to Hawthorne, I now download a SmartCardUtility program to reformat my card once a wk so I don't lose data, but it also deletes the Complete Therapy Data Summary(last page) and all I get is the present day summary. I'd like to see the summary to date, it would be very useful. BTW, I called Respironics and they said they're very aware of the problem with the M Series and they're "working on it". Thanks, Dori

[Kiralynx]

I wanted to know if you've found a way around the problem with the Smart Card losing data every 7th day on Encore Viewer? <snip> BTW, I called Respironics and they said they're very aware of the problem with the M Series and they're "working on it".

Dori,

Well, actually, most of the discussions between James, Banned, Snoredog (sigh), DMS, ~SWS and others are entirely over my head, but I read them in fascination, hoping one day to have sufficient knowledge to at least understand what they are talking about!

So far, the only thing I have managed to do to preserve my detailed data is to use a new card each week -- which is getting expensive, so I hope to be able to get my new computer soon so that I can get Encore Pro working and load everything into a single data base to which I can then apply James' very nice utility.

If I can ever find which SAFE place I put my blank CDs in, I shall transfer the utility from

http://www.mycpap.org/

to the other machine and see if I can start saving data that way. (You know how those SAFE places are... they are so safe even YOU can't find what you put in them!)

But to answer your question, no, I don't have a method to get around it, and in fact, lost the data from my very first night on CPAP, which data I ought to have framed or something.

[jnk]

. . . your best therapy should be with a nasal type interface but you should have a full face as a backup if you can't use the nasal for any reason (cold, stuffy nose, mouth breathing etc . . .

I agree. I use nasal pillows, myself, but keep a ff backup for just in case.