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Do any doctors care about the data on my auto cpap
#11
The thing about sleep medicine is that there isn't an objective measurement of success. There isn't a test of pupil response, or chemical factors in your blood, or some neurological pattern to measure success. So there isn't any accountability for results.

Mostly sleep doctors are trying to get those beds filled and the cash flow coming. You will have to do study on your own to understand sleep apnea.

For example, I was given a pressure of 6 cm-H2O, then 8 cm-H2O. First doctor gave me a "brick" with no real data recording. 2nd doctor didn't make any recommendation for a better machine. With the 3rd doctor I insisted on a data recording machine.

I also insisted on an oximeter. I found out that with 8 cm-H2O my SpO2 was not very good. Periods where I dropped below 90C%. Increased weekly until I reached 15 cm-H2O and my SpO2 stopped having low points and also the typical SpO2 rose significantly.

I did this testing on my own. Also with an oximeter I found that often when the SpO2 was dropping the machine didn't report an Apnea incident and when there was an Apnea incident I didn't see any drop in SpO2. My rate now though is very low from 0 to 2 an evening. My rate is typically 0.0 to 0.2. So it could be that I am at a such a low rate that false positives are all that are reported.

I achieved a low apnea incident rate on my own. I solved my SpO2 on my own.

I am a chemical engineer and I read technical papers and so reading the medical papers wasn't that difficult. I think for others it might be.

One important thing that came very apparent to me was that the practice of sleep medicine is shoddy and of poor quality. So you need to take ownership of it yourself.
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#12
I'll have to let you know at the follow-up. The PA was happy to look at my Sleepyhead report from my (now failed) used S9. She actually changed my prescription from a straight single pressure to a range that met the oxygen minimum criteria. On the other hand, she knew nothing about the issue of increased eye pressure and concerns about glaucoma.
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#13
I guess this seems to be the norm. I have taken over my own treatment and have done a pretty good job so far. My next step is to get a pulse oximeter in order to make sure my O2 levels are at least above 90%. This is also why I get a little angry when all the vendors of CPAP machines refuse to give the clinicians manual when you buy a CPAP. They say that due to liability they can't a doctor needs to do the changes. God help me, if I had left it up to my doctor I would still be at 4-20 and I would have stopped using my CPAP due to the pressure being to low on the low end and way to high on the high end. I would have to pay for several visits with him just to narrow that number so it is tollerable. I am so thankful for this forum giving me the power to change my own settings and be proactive in my treatment.
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#14
Same case all over the world as it seems. Doctors are probably only interested in sleep studies, rather than data (unreliable?) produced by a machine with no any sensors attached to the patient, other than a tube.
However, I myself find it interesting to monitor at least my AHI index every day at my machine's display - especially after nights that have proven "difficult" to endure Smile
There are times when I get to read the data from the SD card, especially after such nights of "difficulty" and that data seem to match the events of the said night(s). I think that this data are just there for us patients alone, who get to live an -unfortunate- scenario of having to live like a smartphone - recharging ourselves every night Big Grin
Lastly, I periodically send my Doctor a mail with a zip file from my SD card every 3 months. I hope he has not put me in his spam list, I am certain he most certainly does not remember who I am, nor what the settings of patient's xxx (myself) CPAP Auto are.
After what I read, I will most certainly buy myself an oxymeter and get it to start logging Sleep-well
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#15
(06-22-2015, 06:16 AM)Powersleeper Wrote: I think that this data are just there for us patients alone, who get to live an -unfortunate- scenario of having to live like a smartphone - recharging ourselves every night Big Grin

That gave hubby & me a good laugh! Too-funny
-Ailu
Reformed CPAP Outlaw
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#16
Sounds like that movie "In Time"


Using FlashAir W-03 SD card in machine. Access through wifi with FlashPAP or Sleep Master utilities.

I wanted to learn Binary so I enrolled in Binary 101. I seemed to have missed the first four courses. Big Grinnie

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#17
You are correct. In most cases the Doctor doesn't want to be bothered with the extra detail of reading
volumes of report data.
They throw a machine at you, tell you to go forth and conquer as they collect all their kickbacks.
So, you need to handle your own sleep therapy otherwise it will handle you.

"Unless someone like you cares a whole lot, it wont get any better...It's NOT!" : Dr. Seuss



"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
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#18
My previous DME and "sleep doc" didn't have a clue either. My official diagnosis is UARS, so even though I qualify as having mild sleep apnea, my sleep disruptions are actually much, much worse (my body reacts too fast to events for them to be recorded, but it has the same effect on my sleep). My original DME saw an AHI number <5 and said "good enough"...my corresponding sleep disruption at their "good enough" level was still about ~10 "near events" per hr, which isn't great for actually getting rest.

My current DME and my general practitioner (regular doc) love that I am actively involved in my therapy and think I am doing a wonderful job (ok...maybe not quite so much love from my RT at the DME...I know too much and make him really work when I have questions Wink )
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#19
As a newbie to the board I feel blessed that my experience is atypical.

The sleep specialist that my spouse and I are using is Board Certified in Sleep and Neurology. He checks the downloads at every visit. He evaluates compliance as mandated by insurance, but also checks the leak rate, AHI, hours of usage, percentage of event type (hypopneas, obstructive, flow limitation, vibratory snore index, clear airway events) and talks to me about how I feel treatment is working. Based on our feedback as the patient he either recommends changes to the settings or leaves everything alone.

My biggest complaint about sleep medicine in our region is that it typically takes 3-6 months to see the specialist. Then if he recommends sleep testing there is another 2-4 month wait to get in at the sleep lab. I'm kind of a naughty patient though as I'm "off-roading" and attempting to self manage my treatment a little. My friend lent me an autoPAP that I have been using while I wait for formal follow up. Smile

Just as an FYI in case, some ApneaBoard members are wondering about the delay in testing, Home sleep testing is just being developed in our region and not routinely recommended outside of the metro areas. It is used primarily if in-lab testing is denied or for patients with a high probability of having Obstructive Sleep Apnea. My sleep specialist does more of them than most of the other doctors in the health system.The other thing he does differently is he has the sleep techs versus medical assistants work with the patients during the clinic office visits so that they can highlight possible areas of discussion for the doc. I saw the same tech for my office visit as I did for my overnight test. This increased my comfort with the process too.
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#20
My sleep doc does look at the data but as in the case with PsychoMike, he just focuses on the AHI even though there is no doubt in my mind I have UARS issues that are causing difficulties with pap therapy. But I am not complaining because he is still the best sleep doc I have had and does try very hard to listen to my input.
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