Fighting for a better Machine

[EO_123]

I've just spoken with my health insurance, my DME and with ResMed. I've read the Mask Arrayed blog several times, and as promised I'm frustrated. I have been told all of the lies you guys said I would be told. The good news is that the DME is really nice and will work with me to get the machine I want - I just need to know what that machine is. However, both the DME and ResMed said there is NO WAY for me to access my own data, other than what the menu of the machine provides. ONLY medical doctors, DME are legally allowed to have this software/reader etc... I have to laugh looking at all of the screen shots and info posted here.

I need some info fast because I have to call the DME back, so I apologize in advance for asking questions that I know have been answered dozens (or more) of times. But for the sake of condensing (and maybe helping other people in my situation)

1. Can you list 3-4 current CPAP machines that are in the E0601 category that allow data access by the user (exact name/model etc) (My sleep apnea is mild (dont' have numbers with me) but I'm probably not going to qualify for something super fancy because I'm not a 'worst case' (fortunately)

2. Can you tell me how/where someone gets the software in order to decode the data. Do I have to purchase that myself? Do I need a special card reader/cable?

3. Do I need to keep my mouth shut about accessing my own data to the DME? Why does everyone think it's impossible and "illegal" for me to access my own data at home. Even ResMed insists this has to be done through my health care provider. But I see you guys doing it all the time! Please tell me the secret.


Thanks!!!!

[apneawho]

I am a very new member. I have the ResMed S9 Elite. It does have smart card and I was also told I could not get the software. I was told that every once in awhile I would have to send my card in to the provider so he can write a report. Phooey on that. That is like telling someone they can have a glucometer without a display screen. I found out thru this forum that I can push the two info buttons down at the same time and view nightly data and there is a link to download the ResMed software thru member Uncle Bob. This has all been a godsend to me. I like info and I think we all should be able to manage our disease. There is something very healing about being proactive and having that knowledge. Also, you can talk to providers more intelligently once you educate yourself, don't you think?

[apneawho]

btw, there is no such thing as not getting a particular machine because you are not a worst case. Read Janknitz info about what you should know before seeing the DME provider. DME companies are paid based on the HCPC code not based on the type of machine. Their reimbursement is fixed based on HCPC code and you should ask for whatever machine you want based on your research. My DME tried to pass off a non-data capable machine on me but luckily I had read this forum and was educating myself. You have to advocate for yourself.

[chunkyfrog]

Many DME's have a problem with patients and data--others are just ignorant-or just pretend to be.
We assumed the latter , and have had great luck with suppliers and the doctor.
We prefaced the first data comments with,
"Now, we are both very tech savvy--geeks, if you will; so this is how we are going to do it.
If you would like to learn from us, you are welcome to do so."

[JDS74]

You have a "brick" device and if the DME is helpful, it can be replaced with the S9 Elite. You should do so.
The card in the ResMed equipment is a standard, available anywhere SD card so no special reader / cable is required.
The reference to UncleBob is a good one and the Rescan 3.x software is available from ResMed for no apparent charge.
You download, install and away you go.

I would plan on making data backups from your card just in case.

Otherwise, good luck on your journey through hosehead land.

[Slinky]

Go for:

Resmed S9 Elite (links in this forum to free ResScan 3.14 software)
PR SystemOne Pro (EncoreViewer 2 or above available for sale online for $100)
DeVilbiss IntelliPAP Info (not the Intro)
Fisher & Paykel Primo

Your best bet for easiest access to and most data available via the LCD screen is the Resmed S9 Elite.

Forget about discussing access to your data UNTIL AFTER you get the CPAP you want AND the access to your data either via the LCD screen or better yet via the software. Once you've acquired the CPAP you want and the manner of data access you want THEN who gives a rat's rear whether "they" like it or not. THEN they can either accept and respect you and your access or they can stew but and be unable to do anything about it.

[Sheriff Buford]

I've just spoken with my health insurance, my DME and with ResMed. I've read the Mask Arrayed blog several times, and as promised I'm frustrated. I have been told all of the lies you guys said I would be told. The good news is that the DME is really nice and will work with me to get the machine I want - I just need to know what that machine is. However, both the DME and ResMed said there is NO WAY for me to access my own data, other than what the menu of the machine provides. ONLY medical doctors, DME are legally allowed to have this software/reader etc... I have to laugh looking at all of the screen shots and info posted here.

I need some info fast because I have to call the DME back, so I apologize in advance for asking questions that I know have been answered dozens (or more) of times. But for the sake of condensing (and maybe helping other people in my situation)

1. Can you list 3-4 current CPAP machines that are in the E0601 category that allow data access by the user (exact name/model etc) (My sleep apnea is mild (dont' have numbers with me) but I'm probably not going to qualify for something super fancy because I'm not a 'worst case' (fortunately)

Get either:
- PR System One REMstar Auto CPAP Machine
- Resmed S9 Autoset

I have the S9 autoset which you can use as a straight cpap or autoset mode. The S9 Elite only offers straight cpap, so the autoset offers both. The autoset will provide a comfortable set pressure and only increase the pressure when the machine senses an apnea event. Once the apnea event is taken care of, the machine ramps down to the comfortable setting. All autosets work this way. This is nice because apnea events occur when you are asleep, and you don't get the effects of the higher pressure while awake.

2. Can you tell me how/where someone gets the software in order to decode the data. Do I have to purchase that myself? Do I need a special card reader/cable?

- you can get the download the software (free) from Uncle Bob.
- you can get a cheap card reader that will work, but reasearch here to get the right type.

3. Do I need to keep my mouth shut about accessing my own data to the DME? Why does everyone think it's impossible and "illegal" for me to access my own data at home. Even ResMed insists this has to be done through my health care provider. But I see you guys doing it all the time! Please tell me the secret.

- Heck no.. it ain't against the law. The S9 will offer you: Hours slept, AHI reading, AI (apnea incidents), CI (central incidents), 95 percentile and leak rates from the LCD screen (on the machine). For more info, you can take the card reader (provided with the machine) from the machine, place in your card reader, and with the free downloaded software (here), you can download to your 'puter more info than you would like to know. As a Cop, I researched the subject and it is not against the law to download your machine's readings or make you own adjustments to the machine.

Hope this helps! Happy papin'!

Sheriff


Thanks!!!!

[Slinky]

The card reader is just a simple USB card reader same as used for downloading from digital cameras. You can even easily and cheaply buy an extra data card as it is the same data card as used by digital cameras.

I didn't mention the

Resmed S9 AutoSet
PR SystemOne Auto
DeVilbiss IntelliPAP Auto

simply because you expressed doubt you could get the "fanciest" CPAP (the APAPs). The Resmed S9 AutoSet would be "the" ideal as the Sheriff has said.

[Emilia]

I think it is important for you to play 'dumb' about the software angle.... just insist on a fully data capable machine, and then we can help you access the data.

[EO_123]

Thanks everyone for the helpful info (and support!) I talked to my DME and she is going to put in an order for a Philips Respironics System One Auto with A-Flex. (I know I need to hold my breath to make sure that this is actually what arrives) She sounds very supportive in helping me to get what I want. She told me that they gave/sold the higher end machines until a few months ago until she was told to use the S8 Escapes (probably got a bargain on them?) However, her husband wears a CPAP and she is enthusiastic about how this therapy can help people. She also knows I asked a million questions during our session. I understand much better now why she was baffled about me being able to access the data, and I shan't say any more about that to her - other than to be glad that she will be able to help me access more info and be better informed about my therapy. My study showed more hypopnea than anything, and I've even noticed this happening during the day - I 'forget' to breathe deeply . Anyway - she agreed that monitoring these things, especially since I'm not able to tell what's happening when I'm sleeping, is very beneficial.

Several people have remarked how much more cheerful I've been over the last few days, I suppose that's a good thing (was I really such a grump?) The last two days I've found that I really wanted to sleep in (and I did) I feel like I can't get enough sleep, but when I wake up I'm not tired and I feel great. Is this my body saying "finally! some sleep!" ? I really look forward to going to bed at night, which is odd for me because previously I did it because it was something I had to do, not because I felt any better for doing it. My favorite trick was to stay up really late until I could pass out as soon as my head hit the pillow.

Thanks everyone!! I'll keep you posted on what the DME comes back with. I did make it clear that I wanted it to be a new model machine that gave full efficacy data.

Cross your hoses for me.....

[cflame1]

If that's truly what comes from the DME... software choices are as follows:

Encore Pro (you'll have to ask in a separate post for this)
Encore Viewer (available from our hosts for $99)
Sleepyhead (an open source software project by jedimark)
Onkor (an online tool written by cpapdork)

Thanks everyone for the helpful info (and support!) I talked to my DME and she is going to put in an order for a Philips Respironics System One Auto with A-Flex. (I know I need to hold my breath to make sure that this is actually what arrives) She sounds very supportive in helping me to get what I want. She told me that they gave/sold the higher end machines until a few months ago until she was told to use the S8 Escapes (probably got a bargain on them?) However, her husband wears a CPAP and she is enthusiastic about how this therapy can help people. She also knows I asked a million questions during our session. I understand much better now why she was baffled about me being able to access the data, and I shan't say any more about that to her - other than to be glad that she will be able to help me access more info and be better informed about my therapy. My study showed more hypopnea than anything, and I've even noticed this happening during the day - I 'forget' to breathe deeply . Anyway - she agreed that monitoring these things, especially since I'm not able to tell what's happening when I'm sleeping, is very beneficial.

Several people have remarked how much more cheerful I've been over the last few days, I suppose that's a good thing (was I really such a grump?) The last two days I've found that I really wanted to sleep in (and I did) I feel like I can't get enough sleep, but when I wake up I'm not tired and I feel great. Is this my body saying "finally! some sleep!" ? I really look forward to going to bed at night, which is odd for me because previously I did it because it was something I had to do, not because I felt any better for doing it. My favorite trick was to stay up really late until I could pass out as soon as my head hit the pillow.

Thanks everyone!! I'll keep you posted on what the DME comes back with. I did make it clear that I wanted it to be a new model machine that gave full efficacy data.

Cross your hoses for me.....

[busylady]

My doctor ordered the Fisher & Paykel Icon Auto for me. Don't Get It! Software is not available in the U.S. You can see some basic data on a screen, but it isn't accurate. I'm working with what I've been given, but not a particularly "happy camper."

[Slinky]

BusyLady, THANK YOU, for that heads up on the Fisher & Paykel ICON! I won't be mentioning or suggesting the F&Ps anymore given your experience and comment.

[EO_123]

I went to see my DME today to pick up my "new" machine. Although she was happy to accommodate my request, I was concerned she would still get the wrong machine - and she did - she got me a PR Plus (as opposed to a PR Pro) I actually used CPAP.com to show her that the Plus did not have efficacy data, I think she had prior experience with a pro and assumed they were the same. Anyway - I talked her into geting me A PR with AFlex. At first she told me I wouldn't like auto - but I asked if it could be set to c-flex if I wanted - she told me it could (it sounds right, but can someone confirm?) Anyway, I have to wait another week for the next machine to come in, but hopefully it will be worth the wait.

[Pugsy]

Anyway - I talked her into geting me A PR with AFlex. At first she told me I wouldn't like auto - but I asked if it could be set to c-flex if I wanted - she told me it could (it sounds right, but can someone confirm?) Anyway, I have to wait another week for the next machine to come in, but hopefully it will be worth the wait.

It will be worth the wait. The auto can be set in cpap mode with C Flex. You can also set it in apap mode with minimum and maximum the same (mimics cpap) and use AFlex. You can also use the apap range if you wish. Let me know when you get it and I will send you the clinician manual.