Newly diagnosed with >100AHI - some questions

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
abeck99
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Joined: Wed Dec 17, 2014 7:09 pm

Newly diagnosed with >100AHI - some questions

Post by abeck99 » Wed Dec 17, 2014 7:23 pm

Hi everyone!

I just completed a split sleep study last night and got a call from my doctor saying that I had more than 70 apneas in 40 minutes - they had to stop it after 40 minutes because my oxygen levels were too low. Extrapolate those 40 minutes to an hour and I've got 105 AHI. I got the feeling from the doctor and reading this forums that this is pretty high - esp considering that I'm just 32 years old.
Luckily my ideal pressure was moderate - just 11-12cm.

After sleeping with a CPAP for about 5 hours I felt more awake than I have for years! Discussing symptoms it seems I have been suffering from apnea for about a decade, but it's gotten particularly bad this last 6 months.
In the lab, I had no problems adjusting to the nasal mask. Could this because my apnea is so severe that I didn't go through the discomfort that many others seem to face?

I'm really excited to get my first machine (hopefully on Monday) and I've already downloaded sleepyhead.

I want to get an Airsense APAP, but I am concerned with a third party storing my private data. Does anyone know if the "Airplane Mode" stays on even after powering down and restarting the device?

Glad to find this place online, I've already learned a lot from here.
Andrew

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grayghost4
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Re: Newly diagnosed with >100AHI - some questions

Post by grayghost4 » Wed Dec 17, 2014 7:40 pm

welcome to the club and the message board . sounds like you have a very positive attitude about the whole thing. which is a big plus. We all adjust to the mask differently, and the mask is the bigest part of the adapting to the use of the cpap.

sounds like you will be one of those that get instant help for cpap.
If you're not part of the solution you're just scumming up the bottom of the beaker!

Get the Clinicians manual here : http://apneaboard.com/adjust-cpap-press ... tup-manual

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TangledHose
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Re: Newly diagnosed with >100AHI - some questions

Post by TangledHose » Wed Dec 17, 2014 7:56 pm

If you turn Airplane mode on (wireless off) the airplane mode stays on and on the screen of the machine you'll see a little blue airplane symbol on the upper right of the screen somewhat similar to what you'd see on your cell phone. It stays in that mode, but you'll notice that in the morning when you shut off therapy the screen will show a confirmation screen that reminds you that airplane mode is on, it asks you if you want to turn off airplane mode and you must respond to that screen before the machine will give you your sleep report, fortunately that screen has the selection of "no" highlighted so all you have to do is push the round select button to say no and that screen goes away. It's mildly annoying, but easy to push the button leaving airplane mode on.

When I got my machine I made sure airplane mode was on, since then I have powered off, unplugged from power and no matter what I do the machine always remains in the airplane mode on state, so no worries about it changing unless you deliberately turn airplane mode off. That confirmation screen that I mentioned above comes on any time you cycle pap therapy off, so if you take a bathroom break and turn machine off you'll notice that screen, of course at that point I ignore the screen and when I am back in bed I just hit the power button to re-start therapy, or if in auto start mode you just start breathing again to restart therapy. I mention this because first night when I shut machine off to go on my bathroom break that screen showed up and the backlight is so low on the Airsense that I could not read the screen without fumbling around in the dark to find some reading glasses, so it caught me by surprise because I initially thought it was some error message or something like that on my new machine

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

MMartin730
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Re: Newly diagnosed with >100AHI - some questions

Post by MMartin730 » Wed Dec 17, 2014 8:02 pm

Hi Andrew, I am in the same boat as you, almost identical. My Dr. mentioned my AHI was 120/hr, I am 32 yrs old, and I wanted the air sense 10, which I ultimately got. I did the split study, my pressure did not go over 12 during the split study so they prescribed me 13 to get me under 5 AHI. I just started this 12 days ago, so we will be learning together! Good luck and if I find any info I could pass along during the way, I will!

abeck99
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Re: Newly diagnosed with >100AHI - some questions

Post by abeck99 » Wed Dec 17, 2014 8:28 pm

grayghost4: Thanks! TBH I can't imagine not feeling positive about being diagnosed. I'm ready to feel well rested for the first time in many many years.

TangledHose: Awesome about the AirSense 10. I don't want to upload personal medical data to a third party - I understand doctors and insurance companies but to a third party seems wrong, maybe against privacy laws too. All you need is one guy with high access privileges to pull a bunch of data who knows that info could sell for a lot of money.

MMartin730: I noticed your post and thought it sounded really similar! Would be interesting to compare experiences over the next couple of months.

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mike1953
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Re: Newly diagnosed with >100AHI - some questions

Post by mike1953 » Wed Dec 17, 2014 8:40 pm

abeck99 wrote:grayghost4: Thanks! TBH I can't imagine not feeling positive about being diagnosed. I'm ready to feel well rested for the first time in many many years.

TangledHose: Awesome about the AirSense 10. I don't want to upload personal medical data to a third party - I understand doctors and insurance companies but to a third party seems wrong, maybe against privacy laws too. All you need is one guy with high access privileges to pull a bunch of data who knows that info could sell for a lot of money.

MMartin730: I noticed your post and thought it sounded really similar! Would be interesting to compare experiences over the next couple of months.
Not sure what third party you are talking about? Your personal medical data what data? Your AHI, the time used, ect. is all that is sent to your DME, Doctor ect for compliance issues.

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Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Using a Buckwheat pillow its great

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TangledHose
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Re: Newly diagnosed with >100AHI - some questions

Post by TangledHose » Wed Dec 17, 2014 9:00 pm

I would assume that if your DME is not set up to receive the wireless data from the Airsense, or as in my case you're not working with a DME and you allow the machine to transmit your summary data ResMed is probably collecting your data for their own purposes like marketing data or usage statistics. I am not going to sign up for their silly airview patient system because it's basically worthless if you're using SleepyHead for your own monitoring. So I would rather not turn the cellular modem on just so ResMed can make use of my statistics for their own purposes. That being said its not a huge deal either way because the only thing being transmitted is just your summary data, nothing very sensitive in that information, eh


_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

abeck99
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Re: Newly diagnosed with >100AHI - some questions

Post by abeck99 » Wed Dec 17, 2014 9:03 pm

mike1953 wrote:
abeck99 wrote:TangledHose: Awesome about the AirSense 10. I don't want to upload personal medical data to a third party - I understand doctors and insurance companies but to a third party seems wrong, maybe against privacy laws too. All you need is one guy with high access privileges to pull a bunch of data who knows that info could sell for a lot of money.

Not sure what third party you are talking about? Your personal medical data what data? Your AHI, the time used, ect. is all that is sent to your DME, Doctor ect for compliance issues.
From what I understand, the data is sent to ResMed "AirView" servers. They control access to DME, Doctor, etc. But the actual data is sitting on servers owned by ResMed. By third party I mean ResMed. Please correct me if I'm wrong (I hope I am) but it seems like a technical nightmare to install the DBs on all the data receivers machines - many hospitals and health centers use out-dated technology that seems like that approach might even be impossible.
Although it doesn't lay out the technicalities the ResMed website seems to imply that the data is sitting on ResMed servers.
AirViewTM is a cloud-based system for managing patients with sleep-disordered breathing.
They must have privacy policies in place to be in accordance with laws, however that requires a bit of faith. You can look up Ubers quite complete privacy policy and read how well that stands up in real life.

I admit that I'm a bit paranoid, but working in the tech industry you see how easy this kind of thing is when data is "in the cloud". Combine that with the fact that medical research info is worth quite a bit of dough and I see the potential for a problem. Not necessarily a problem right now, but I like minimizing my risk.

Man, this is quite an intense post for a welcome thread... I think this will be my only word on the topic.

abeck99
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Re: Newly diagnosed with >100AHI - some questions

Post by abeck99 » Wed Dec 17, 2014 9:06 pm

TangledHose wrote:So I would rather not turn the cellular modem on just so ResMed can make use of my statistics for their own purposes. That being said its not a huge deal either way because the only thing being transmitted is just your summary data, nothing very sensitive in that information, eh
Even though I went on a rant, the flip side is that ResMed can use this info for further improving their products as they learn more about the users. That's a good thing.
Still, I'd rather keep medical info to myself and my doctor as much as I can.

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TangledHose
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Re: Newly diagnosed with >100AHI - some questions

Post by TangledHose » Wed Dec 17, 2014 9:19 pm

I totally agree with that philosophy..........oh and by the way, welcome to the forum.......lots of good information here, and some very knowledgable individuals that can help with your therapy questions and concerns ....stick with it, you'll be glad you did!!


_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

MMartin730
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Re: Newly diagnosed with >100AHI - some questions

Post by MMartin730 » Wed Dec 17, 2014 9:23 pm

Okay.. my machine is officially getting tin foil wrapped around it in the morning! JK

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chunkyfrog
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Re: Newly diagnosed with >100AHI - some questions

Post by chunkyfrog » Wed Dec 17, 2014 9:37 pm

To use the modem for compliance verification has attendant costs.
My provider chooses not to set up the account, since it seems no one wants to pay the bill.
If anyone needs usage, there is always the card, so I just leave airplane mode off.
(I detest being nagged)

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TangledHose
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Re: Newly diagnosed with >100AHI - some questions

Post by TangledHose » Wed Dec 17, 2014 10:42 pm

MMartin730 wrote:Okay.. my machine is officially getting tin foil wrapped around it in the morning! JK
LOL

If you have any left over use it to wrap around your head


_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

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TangledHose
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Re: Newly diagnosed with >100AHI - some questions

Post by TangledHose » Wed Dec 17, 2014 10:46 pm

chunkyfrog wrote: If anyone needs usage, there is always the card, so I just leave airplane mode off.
Frogster -- don't you mean airplane mode "ON" ...........as in wireless "off" ??

Or am I nagging


_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/