Joined: Feb 2012
Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead
Other Comments: Have diabetes Type II
Location: Illinois, USA
RE: Why aren't more data-capable Auto-CPAP machines prescribed?
Gavino V. Wrote:I not only saw chip-capable machines (some models of which were years old and were close outs - which only demonstrated how ancient the equipment I had been sold was), they cost FAR LESS than my existing, much older machine! Like, more than $1000 less.
But then I discovered something else - something called an "auto-bi-PAP". They were all chip enabled, all cost hundreds less than my old equipment, and what's more, held out the possibility of addressing an issue like mine normatively - that is, as I needed more pressure, it would automatically adjust; as I needed less, it would automatically back off.
I called my pulmonologist to see what he thought. He thought it was a great idea, except that auto-bi-paps cost more than regular bi-paps. Other than that, it was fine. Worst case I would pay to get some equipment that I would not use long term, that might be inappropriate long term, but that would supply him with the data he needed. After all, I could always use my old equipment - with adjustments gleaned from the auto-bi-pap data, on its chip.
So I forked over the $900 for my Respironics auto-bi-PAP with chip. (They all come with chips now, or so I learned...) I began using it. It began recording data. I scheduled an appointment with my new pulmonologist for 2 weeks hence. During that time my sleep improved dramatically.
I brought the chip to the pulmonologist. He was so happy he congratulated me. I was pumped as well. I went in 6 mos later - continued stellar results. My next appointment was for a year later.
Epilogue 1 - So, in looking for machines on-line, I came upon this Apnea Board. It was all about patients taking charge of their own care. Wish I had found it before I even made the first MD appointment. Oh, well. Then what to my wondering eyes did appear but THE TECHNICIAN'S MANUAL FOR MY OLD CLUNKER MACHINE. For smiles, I downloaded it.
Well, I learned a couple of very interesting things - first of all, how to change the settings. I saw how easy it was (a hidden button) and decided to try juking up the pressure, just one notch. Enh. Then two. Okay. It became clear to me that variable pressure was a much better solution for me.
Now, I HARDLY recommend that patients fool with the settings. I did only because I had my spiffy new, much better auto-bi-PAP to fall back on. (I now use the old box, which I unnecessarily paid $300 more for, for traveling only, with adjusted settings recommended by my pulmonologist, which I put in.)
But much, much, much more importantly - i DISCOVERED MY OLD UNIT WAS "DATA CAPABLE" - that's right: capable of recording data about my sleep. The only thing was, it did not use a chip, being ancient. However, right there, in the technician's manual, it described that it had an RS-232 serial connection (see how ancient it was?) that could be used to download data to a PC, and that there was s/w that could be used to view it. Being a s/w guy, I could easily have printed out the results for my pulmonologist, or even stored them on a chip!
THAT'S THE POINT - despite my troubles, despite even having very old equipment, I COULD HAVE HAD ALL THE DATA I NEEDED - THAT MY PULMONOLOGIST NEEDED - ALL ALONG. So, tell me - Why didn't the "support" company let me know that? Why didn't either of my pulmonologists tell me that? Why didn't the clinicians tell me that?
Well, first and foremost, it's not the clinicians' job. They are immediately exonerated.
How about the physicians? Well, the first one absolutely should have stressed to me how important the data was, should have encouraged me to use a machine - auto or not - that recorded data onto a chip, as that is the most convenient and INDUSTRY STANDARD way to store and transport it. His script should have specified it.
(more to come. Again, I apologize for length, but since I was called out, the entire story is necessary. And, god forbid, someone might actually learn something...)