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How much to worry...
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Cygnus Offline

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Post: #1
How much to worry...
Hello all,

I've been around these parts for a while now. Been through my sleep studies and now a month on BiPAP.

My therapy is going real well, on vauto i am getting events/hour consistently below 2 and many of my blatant apnea symptoms are gone (daytime sleepiness, really bad bruxism (was biting my tongue to pieces in my sleep), many trips to the bathroom at night. Commonly waking up with panic attacks...etc...

After getting more educated on apnea, i am starting to get more concerned. My sleep study showed an event index of 75+ and spo2 reaching all the way down to 55%. To me, it seems like i don't just have severe sleep apnea, i have super crazy bad sleep apnea.

I am only 40 and 30-40 pounds over weight. My sleep doc thinks i can get to lower pressures by losing weight, but doubts i can ever ditch the therapy. I have huge tonsils and not a fan of pulling them out.

Here's my concern...i am doing really well on therapy and feel great...but I'm now scared as hell to ever sleep without the biPAP.

Exactly how dangerous is untreated apnea in the 75+ range and spo2 down in the low 50's? I get the sense that this is quite dangerous and I actually may be quite lucky to even still be here.

I am about to move overseas for a few years and if my machine breaks...while my DME will support, sending it in to get fixed and returned would likely take months. I am very worried about the risk of going even a few days without therapy.

I hate at this point to spend the money, but while I have the script...I'm thinking very heavily into buying a back up machine (of course, my insurance doesn't cover). Since I'm on an auto BiPAP...even used...this will be a MAJOR expense. But probably worth it to know I will always have access to therapy.

Am I too worried about this? My machine is a resmed AirCurve Vauto....its a sweet machine and top of the line. But my doc warned me its not unheard of for them to start going after only a few years. And again...dealing with the DME to fix it under warranty would likely mean months and months without therapy...

Many thanks for you feedback...
07-10-2015 06:36 PM
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justMongo Offline

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Posts: 3,851
Joined: Sep 2013

Machine: ResMed VPAP Auto (S9)
Mask Type: Full face mask
Mask Make & Model: ResMed Mirage Quattro
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CPAP Pressure: 18 IPAPmax - 11 EPAPmin, PS=5
CPAP Software: Other Software

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Sex: Male
Location: Калифорния

Post: #2
RE: How much to worry...
(07-10-2015 06:36 PM)Cygnus Wrote:  Exactly how dangerous is untreated apnea in the 75+ range and spo2 down in the low 50's? I get the sense that this is quite dangerous and I actually may be quite lucky to even still be here.

Keeping in mind, I am not a healthcare professional: I'd say it is very risky. With SaO2 in the 50% range, you are likely killing brain cells. The biggest risk is: You may not wake up. My personal opinion is: Never sleep without your machine.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-10-2015 06:57 PM
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LexTac Offline

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Posts: 48
Joined: Jul 2015

Machine: PR System One REMstar Auto 560
Mask Type: Nasal pillows
Mask Make & Model: PR Nuance Pro
Humidifier: PR System One Heated Humidifier
CPAP Pressure: 15.3 cm H2O (Auto 5 to 20)
CPAP Software: SleepyHead EncoreBasic Other Software

Other Comments: Other Software: SleepMapper | Modem: SleepMapper Module | FFM: PR Amara View

Sex: Male
Location: South Central Kentucky

Post: #3
RE: How much to worry...
I'm glad that your condition is doing well, keep up the good work!

You have an interesting dilemma. The technology in your machine would probably be outdated in 2 years if it were to go down. I wouldn't think that it would be worth the trouble to fix if this were the case. I would probably check the "Vendor's List" to see if there are any located in or near the country that you plan on being in. Send them an email, maybe they can give you some alternatives. Also the maker may be able to set your mind at ease. If I were to buy a backup, I think that I would first check the smaller travel units to see if they have the capabilities that you need. They seem to be a little cheaper than the bigger units, which would make them more attractive to me. Good luck with whatever you decide to do.

Regards;
Lex Cool
07-10-2015 07:00 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #4
RE: How much to worry...
(07-10-2015 06:36 PM)Cygnus Wrote:  Here's my concern...i am doing really well on therapy and feel great...but I'm now scared as hell to ever sleep without the biPAP.
My untreated apnea index was higher than yours and survived all those years
CPAP can be addictive, because of the side effects .. restful sleep and feeling better

No need to worry, get a backup machine
Whatever going to happen, will happen ... enjoy the moment
07-10-2015 07:01 PM
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Mosquitobait Offline

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Posts: 746
Joined: Apr 2015

Machine: Resmed AirSense 10 For Her
Mask Type: Nasal pillows
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Humidifier: integrated, Climate line tube
CPAP Pressure: 9-12
CPAP Software: ResScan SleepyHead

Other Comments: RLS and Bradycardia

Sex: Female
Location: Minneapolis

Post: #5
RE: How much to worry...
(07-10-2015 06:36 PM)Cygnus Wrote:  Hello all,

I've been around these parts for a while now. Been through my sleep studies and now a month on BiPAP.

My therapy is going real well, on vauto i am getting events/hour consistently below 2 and many of my blatant apnea symptoms are gone (daytime sleepiness, really bad bruxism (was biting my tongue to pieces in my sleep), many trips to the bathroom at night. Commonly waking up with panic attacks...etc...

After getting more educated on apnea, i am starting to get more concerned. My sleep study showed an event index of 75+ and spo2 reaching all the way down to 55%. To me, it seems like i don't just have severe sleep apnea, i have super crazy bad sleep apnea.

I am only 40 and 30-40 pounds over weight. My sleep doc thinks i can get to lower pressures by losing weight, but doubts i can ever ditch the therapy. I have huge tonsils and not a fan of pulling them out.

Here's my concern...i am doing really well on therapy and feel great...but I'm now scared as hell to ever sleep without the biPAP.

Exactly how dangerous is untreated apnea in the 75+ range and spo2 down in the low 50's? I get the sense that this is quite dangerous and I actually may be quite lucky to even still be here.

I am about to move overseas for a few years and if my machine breaks...while my DME will support, sending it in to get fixed and returned would likely take months. I am very worried about the risk of going even a few days without therapy.

I hate at this point to spend the money, but while I have the script...I'm thinking very heavily into buying a back up machine (of course, my insurance doesn't cover). Since I'm on an auto BiPAP...even used...this will be a MAJOR expense. But probably worth it to know I will always have access to therapy.

Am I too worried about this? My machine is a resmed AirCurve Vauto....its a sweet machine and top of the line. But my doc warned me its not unheard of for them to start going after only a few years. And again...dealing with the DME to fix it under warranty would likely mean months and months without therapy...

Many thanks for you feedback...

My suggestion is to get a used Bipap as your backup.
07-10-2015 07:05 PM
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OpalRose Offline

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Machine: PR System One REMstar Auto 560 with A Flex
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10 For Her
Humidifier: REMStar heated humidifier with heated hose
CPAP Pressure: Auto Cpap 10-13 AFLEX 1
CPAP Software: SleepyHead EncoreBasic

Other Comments: Started CPAP Therapy October 23, 2014

Sex: Female
Location: Northeast Ohio, USA

Post: #6
RE: How much to worry...
You are correct in thinking that untreated apnea is dangerous, but you shouldn't be so worried at this point because you are using your BIPAP and your therapy is going well, and you feel great. Smile

If you are going overseas soon, then definitely look into buying a second machine. I know it's a major expense, but it's better knowing that you would have a backup if needed. A lot of people on this forum have mentioned Craig's list. I personally would rather buy from someone like Supplier #2. Best of luck!

OpalRose
07-10-2015 07:08 PM
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DeepBreathing Offline
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Machine: Resmed S9 VPAP Adapt
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CPAP Pressure: EPAP: 9 - 15 PS: 3 - 10
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Perth, Western Australia

Post: #7
RE: How much to worry...
Quote:I am about to move overseas for a few years and if my machine breaks...while my DME will support, sending it in to get fixed and returned would likely take months. I am very worried about the risk of going even a few days without therapy.

Where are you going? Overseas is a big place, and surprisingly, they do have xPAP machines. Wink How easy or expensive it would be to get hold of one is another matter. Here in Oz, for instance, you don't need a prescription, just buy it over the counter. But be prepared to pay big time. Other places will differ.

DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-10-2015 07:16 PM
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zonk Offline

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Location: Australia

Post: #8
RE: How much to worry...
(07-10-2015 07:16 PM)DeepBreathing Wrote:  Here in Oz, for instance, you don't need a prescription, just buy it over the counter. But be prepared to pay big time. Other places will differ.
Unlike US, there is no law that stipulate a prescription is required in Australia. Nevertheless, they need it, to setup the machine for you, otherwise how you're going to set it up by yourself ... make sense Smile

Make sense to take the script with you Coffee
07-10-2015 07:51 PM
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MobileBasset Offline

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Location: Florida

Post: #9
RE: How much to worry...
I use the AirCurve 10 VAuto BiPAP also. This is the way my mind works. In your situation I would plan to use my top of the line machine until it breaks and then order a new current top of the line at that time. I would have an inexpensive back up machine which might not even have to be a BiPAP or an auto, and might not need a humidifier. It would also be my travel machine. I would research the new location to find out how to go about getting a new machine there. I would research expedited shipping etc. When I had it all figured out I would relax.

However, you also need to work out your battery backup. The AirCurve requires a 24 volt power converter and will probably need to run with the humidifier off (depending on your battery source). I use my backup machine as my battery machine because I have everything necessary for it. It is my old CPAP machine and still runs fine.

if you can't decide then you don't have enough data.
(This post was last modified: 07-10-2015 07:56 PM by MobileBasset.)
07-10-2015 07:55 PM
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DeepBreathing Offline
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Location: Perth, Western Australia

Post: #10
RE: How much to worry...
(07-10-2015 07:51 PM)zonk Wrote:  
(07-10-2015 07:16 PM)DeepBreathing Wrote:  Here in Oz, for instance, you don't need a prescription, just buy it over the counter. But be prepared to pay big time. Other places will differ.
Unlike US, there is no law that stipulate a prescription is required in Australia. Nevertheless, they need it, to setup the machine for you, otherwise how you're going to set it up by yourself ... make sense Smile

Make sense to take the script with you Coffee

Sure, if you've got one and it's valid where you're going. I never got a script for my machine. The therapist did the initial setup and adjusted it over a seven week period, depending on results and my feedback. Now, of course I have fine tuned the settings myself.

If you have a rough idea what you're doing and what your pressures need to be, then there's no need for a prescription here in Oz.

DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
07-10-2015 09:04 PM
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