confusing Smart Card results, dr baffled....can anyone help?

Hi....this is my first post on here, so please excuse me when I delve into issues you've probably hashed over a thousand times before. I'm really confused and frustrated over my recent CPAP/APAP experiences and would be awfully grateful to anyone who might be able to help.

I was diagnosed with OSA in Sept 2004. I spent my first 8 months (with a Respironics CPAP w/ humidifier) trying different masks, nasal pillows, etc to find a combination that I could live with. Unfortunately, I would ALWAYS remove the mask during the course of the night, sometimes consciously, sometimes unconsciously. In 8 months, maybe I woke up with my mask (ultimately settled on a Comfort Classic) still on 4 or 5 times TOTAL.

A month ago, my doctor arranged for me to try out the Respironics Auto Pap with C-Flex. The difference was amazing. That first night, I woke in the morning and still had the mask on! In fact, for each of the 14 days I used the loaner APAP, I kept the mask on the entire night. This, in itself, was a miracle. Aha, finally, a breakthrough! Or so I thought.

But here's the odd thing: I may be keeping the mask on, but the Smart Card is telling me that, after the first few nights, I recorded virtually ZERO compliance hours.

Here's the record of my compliance hours per the SmartCard:

Jun 23 6 hr 13 min
Jun 24 8 hr 40 min
Jun 25 5 hr 28 min
Jun 26 7 hr 24 min
Jun 27 8 hr 17 min
Jun 28 2 MINUTES
Jun 29 4 MINUTES
Jun 30 2 MINUTES
Jul 1 2 MINUTES
Jul 2 6 MINUTES
Jul 3 0 hr 44 min
Jul 4 0 hr 51 min
Jul 5 2 hr 2 min
Jul 6 1 hr 26 min

Now, I swear I kept the mask on the entire night every night. So how can I get over 8 hours of therapy/compliance on June 27 and then just 2 minutes on June 28? Leaky mask? Mouthbreathing? I guess I don't get how I could have suddenly become a mouthbreather on 6/28 after not being one on 6/27!

Now, to make matters more odd. After two weeks of managing to keep the mask on the entire night, flush with victory, I went out and bought my own identical Respironics Auto with C-Flex. Fresh off the smartCard, here are my compliance results with the new machine through last night:

Jul 7 6 hr 46 min
Jul 8 7 hr 41 min
Jul 9 5 MINUTES
Jul 10 10 MINUTES
Jul 11 4 MINUTES
Jul 12 2 MINUTES
Jul 13 2 MINUTES
Jul 14 2 MINUTES
Jul 15 4 MINUTES
Jul 16 2 MINUTES
Jul 17 3 MINUTES
Jul 18 4 MINUTES
Jul 19 2 MINUTES

After two nights of total compliance, I've only recorded a grand total of 45 minutes of therapy hours over the past 10 nights combined! How can this possibly be? What am I doing wrong? Or, what was I doing RIGHT on the handful of nights where I did record 6-8 hours of therapy?

My doctor and DME are good people who have been very supportive, but they are stumped by this.

My questions to you all are these:

1. does anyone have any idea what this could possibly mean?

2. Is there a convenient link/glossary somewhere that might help me decode all the data I've got sitting in front of me from the Smart Card. I'd like to put my AHI, Snore Index, Max Leak, etc. into some context.

Again, my apologies for re-asking what may be routine questions and thanks to anyone who's bothered to read this far! I'd be grateful to anyone who can shed some light via email or by just posting a reply.

John

You might try downloading and running MyEncore on your data to see if in fact you have more time recorded. Take a look at it here:
http://lewiston.mit.edu/myencore

The machine has an auto off feature. When the patient takes the mask off for more than a few seconds the machine shuts off automatically. Could it be that you have massive leaks causing the machine to turn off automatically? Is the machine still blowing air when you wake up in the morning?

What do the starting and ending times on the reports look like? Do the starting times agree with the actual time you put it on?.....also the ending times.....?

64,000 $ question ...


Aside from what the card says, are you aware of big improvements in your daily living ?
- less drowsiness in the day
- greater vitality & alertness
- able to leap tall buildings in 1 bound ( sometimes I think I can since being on CPAP )

What I am saying is are the expected real world results being felt by you & I would love to hear your answer before any further analysis of the card output

Cheers

DSM

Have you considered setting the alarm so that if you take the mask off it rings, just as an experiment?

I am guessing here that one can do that?!

Have you tried a different card? Maybe its defective. Maybe the machine is defective and not recording the info to the card. Maybe its even the card reader.

No, whenever I wake up, the machine is still blowing air.


[quote="Anonymous"]The machine has an auto off feature. When the patient takes the mask off for more than a few seconds the machine shuts off automatically. Could it be that you have massive leaks causing the machine to turn off automatically? Is the machine still blowing air when you wake up in the morning?

Wulfman wrote:What do the starting and ending times on the reports look like? Do the starting times agree with the actual time you put it on?.....also the ending times.....?

The start and end times on the "good" nights when I show compliance are very accurate: generally beginning between 10pm-11pm and ending between 6-7am.

On the majority of the nights where I only record a few minutes, the activity generally comes right at the beginning of the night when I put the mask on, but after a couple minutes it disappears.

Finally, there are a handful of nights where I recoded anywhere between 45 min and 2 hrs of compilance: there are no solid lines here, but what looks like bursts of 2-3 minutes of therapy staggered througout the night.

[quote="dsm"]64,000 $ question ...

Unfotunately, no. If I felt great I'd be quick to just write this off to crappy software. I DID feel great during that first block of 5 nights where I was getting 7 hrs of therapy a night, but definitely am sagging following the days where I only record a couple minutes.

John




Aside from what the card says, are you aware of big improvements in your daily living ?
- less drowsiness in the day
- greater vitality & alertness
- able to leap tall buildings in 1 bound ( sometimes I think I can since being on CPAP )

What I am saying is are the expected real world results being felt by you & I would love to hear your answer before any further analysis of the card output

Cheers

DSM

A further update: I tried a Mirage Full Face Mask last night to see if that would solve any potential leak/mouthbreathing incidents. But I had another crappy night with virtually no compliance hours. I am totally confused and frustrated.

Is there anyplace else to try to find an answer to this? The Respironics tech support line hasn't been especially helpful. I would love to find a sleep doc or a lab technician online who could make some sense of this for me. Are there any such resources?

Thanks, by the way, to all of you who have tasken the time to read and reply. Please keep at it...I'm still hoping one of you will help me unravel this mystery.

John

John

To followup on a few earlier post:
...have you tried another smartcard?
...have you tried installing Derek's MyEncore which uses the database from Encore Pro but runs it in a seperate program? Its at http://lewiston.mit.edu/myencore

Jim

JL....I don't own the Encore Pro software yet. All I'm going off is print outs of the past 4 weeks data from the Dr and the DME. I do plan to buy the card reader and install MyEncore ASAP.


[quote="JL"]John

To followup on a few earlier post:
...have you tried another smartcard?
...have you tried installing Derek's MyEncore which uses the database from Encore Pro but runs it in a seperate program? Its at http://lewiston.mit.edu/myencore

Jim

John

Are they downloading your data from the new card that came with the machine you bought or the original one that they gave you to use? You could at least then eliminate that as a possibility. Definitely would be better off with your own software and reader to track your own progress, etc.

Jim

John,

I don't have the APAP model, but there should be enough similarities for what I'm about to suggest.
There's a window on the top of your machine that has a number (with a decimal point) that essentially gives your use/compliance hours. What I would do is to have a notepad by the bedside and note the actual time (from a clock or watch) and then note the number on the machine when you put on the mask and go to sleep. Then when you shut it off in the morning, make notes of the time and number on the machine. Then, when you take the card into your DME and doctor. The "compliance" numbers from the software and machine should be pretty close. You will also (in the mean time) be able to see from the numbers (in the machine display) whether they are incrementing by whole hours or partial hours behind the decimal point.
It appears from your list that 10 minutes is about the most it's recorded in the "short times". Another test you might do is to hook yourself up during the day on the weekend (or a day off) and just sit with the mask on and machine running and see if it stops on its own or quits recording time on the screen.
Also, like others, my suggestion (if you can swing it) is to get the Encore Pro and card reader (then get the MyEncore software). There are many things that can affect your sleep and this will allow you to analyze what went on in a shorter period of time.....while it's still fresh in your memory.

Let us know how it's going.

Good luck.