VETERANS, are you here?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Sleepy Veteran
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VETERANS, are you here?

Post by Sleepy Veteran » Sat Sep 13, 2014 11:13 pm

I'm new to this whole sleep apnea thing, but not new to the V.A. so after being "issued" my new CPAP gear I thought I'd poke around a bit online and see what I could see.
That led me here to this community, so HELLO!

Just wondering if there are any other sleep deprived Vets like myself here and how the V.A. is treating you?

Maybe we could compare notes and ,(forgive my newness around here), if there isn't already a veterans CPAP group, maybe we could start one?

I have to be straight up. With all the negative stories in the news about the V.A. lately, my personal experience hasn't been totally bad.
The Tampa Florida, ((James A. Haley) Veterans Hospital and the clinics have for the most part been pretty good. Navigating the red tape......well that's another story.
Pretty much like like being back on active duty back in the 60's-70's , but once you manage to get past that, the treatment is good.

They diagnosed my sleep apnea damn quick and had me back in the out-patient clinic as an "emergency" within a couple of days.
Handed me the results of my sleep study and really shocked me.

Apnea / Hypopnea Index: 70 ......(YES that's right SEVENTY EVENTS PER HOUR !)
I was told that 15-30 is considered "Severe" so I can only imagine what the Doc's said when they saw my test results

Lowest SaO2 (Oxygen Saturation): 73% (No wonder I've had no energy!)

My prescription also said: "Please perform a follow-up oximetry once the patient is compliant with using the equipment, or is dead"

OK..OK...I added in the "or is dead" part, but the bottom line is from what the Docs told me I have been in SERIOUS danger of actually dying in my sleep for quite awhile. Once they laid it all out for me and the pieces started coming together it wasn't hard for me to realize what had been affecting me for so long and how I had been just blowing it off as getting older and just trying to "push on". I finally realized just how deadly this was and I couldn't ignore it any more.

The CPAP classroom experience at the V.A. sleep disorder / pulmonary clinic was interesting to say the least. (For you civilians reading this, the military, and the V.A. put EVERYONE through a class for EVERYTHING...ESPECIALLY whenever they "issue" you new equipment.) I'm not sure how much the Government paid for the RemStar CPAP machines in the nifty looking Patriotic Red-White & Blue carry bags they gave us, but that's a nice touch for Vets and very much appreciated.

At my class they went through the full "care & feeding" of the machines and then they had a display of approx. 12-14 different masks to choose from and they individually fitted each of the 6 vets in the class and made sure we knew "field strip" clean and reassemble whatever mask we chose and how to fit it properly and gave us the phone numbers of who and where to call for replacement parts and repairs.

I started out with the "hot rod" full face mask; ResMed "Quattro" FX It just looked SO COOL......HUGE MISTAKE. I'm not sure just what the hell I was thinking. Maybe going for the fighter pilot look, I don't know, but it only took 2 nights with that contraption to realize what a mistake I had made. I couldn't stand the full nose and mouth mask for more than 4 hours before ripping it off. The mouth area of the mask wasn't wide enough so every time I even parted my lips a little the mask seal at the corners of my mouth broke open and wouldn't re-real. I called the V.A. and the fantastic guys in the CPAP lab said pack up your machine and get back over here right away...NO APPOINTMENT REQUIRED....ON A SATURDAY!! WOW!

I rolled into the lab and got a new technician this time. He says "WHY did you choose the full nose and mouth mask?", I say: "Because my wife here says I sleep with my mouth open and I'm a mouth breather." He says: "Close your mouth, breath through your nose and just sit there and be quiet." Then he turns and starts working on his computer. Three or four minutes later he stops, turns to me and says: "OK, at any time during that period did you have an unbearable urge to breath through your mouth?" I say "No" He asks: "Was breathing through your nose in any way uncomfortable for you?" I say "No" He says: "You Sir are NOT a mouth breather. The open mouth breathing during sleep is an EFFECT of the apnea." He then proceeded to fit me with a RESMED AIRFIT P10

What an incredible difference! I can barely tell I'm wearing the thing! (and not a single "mouth breathing" problem while sleeping)

Ok, enough about my experiences so far. I'm just starting down this CPAP trail and I have a lot to learn yet, but I would like to hear from other Vets and learn what your experiences have been at the V.A. especially with CPAP.
For those Vets that have been on a CPAP from the V.A. for awhile now what has been your experience with getting replacements and repairs, (my paperwork says new machine filters and new nasal pillows every 90 days and a whole new mask every year).
How has your sleep disorder clinic treated you? What have you learned?
Give me SITREP!

SLEEPY VETERAN

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Last edited by Sleepy Veteran on Sat Sep 13, 2014 11:56 pm, edited 2 times in total.
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Wulfman...
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Re: VETERANS, are you here?

Post by Wulfman... » Sat Sep 13, 2014 11:21 pm

I was told that 15-30 is considered "Severe" so I can only imagine what the Doc's said when they saw my test results
Actually, those numbers are in the "Moderate" range. 5 - 15 is "Mild" and over 30 is "Severe".

Welcome to the forum.


Den

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Sleepy Veteran
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Re: VETERANS, are you here?

Post by Sleepy Veteran » Sat Sep 13, 2014 11:36 pm

Wulfman... wrote:
I was told that 15-30 is considered "Severe" so I can only imagine what the Doc's said when they saw my test results
Actually, those numbers are in the "Moderate" range. 5 - 15 is "Mild" and over 30 is "Severe".

Welcome to the forum.


Den

.
Thanks for the clarification.
Like I said, I have a lot to learn about all this.
They run through it all pretty fast at the V.A. and I scribble notes in the class as fast as a sleep deprived old man can.

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Guest

Re: VETERANS, are you here?

Post by Guest » Sun Sep 14, 2014 5:16 am

Sleepy Veteran wrote: Just wondering if there are any other sleep deprived Vets like myself here and how the VA is treating you?
Welcome to the forum.

You will find a wide variety of differences in the programs thruout the VA system. For the most part many may still be in the learning curve but the equipment is top shelf. How and what they do with it is another story.

I never had to attend a class like you and when I suggested that very idea it was shot down like a rocket. Oh well, I went on the search and found this place to educate myself and make things work for me, no one else cares.

They are in the process of changing things at my VA and I am not sure it will all be for the better. It seems to be all about the money. What I mean is they used to contract a DME to come to the house to check on things (see if you were using the machine), so they could take the machine back if you are not using it. Also the DME would ship supplies to the house. Now they want you to drive to the VA to pick up supplies and have the machine hours checked. They don't care about anything beyond hours of use, unfortunately.

Don't get me wrong, I am thankful for what they have provided but some of the employees think their draft-dodging butts are in the Marines. And then like to play Active Duty games because they have a captive audience. I have learned to reach beyond the VA for my healthcare for that reason.

I do know that I would never have surgery at the VA if I have any other options, but that is another story entirely.

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Jay Aitchsee
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Re: VETERANS, are you here?

Post by Jay Aitchsee » Sun Sep 14, 2014 5:28 am

Yes, we're here. Welcome to the Forum!

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Sheriff Buford
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Re: VETERANS, are you here?

Post by Sheriff Buford » Sun Sep 14, 2014 6:13 am

Thank you for your service to our country!

Know that the "mask search" will happen and don't be discouraged about it. I went through a half a dozen masks before finding one that is comfortable and doesn't leak.

Welcome to the forum. Work all your issues here.

Sheriff

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Re: VETERANS, are you here?

Post by jencat824 » Sun Sep 14, 2014 7:10 am

Thank you for your service to our country & I'm glad you are back on American soil now. Welcome to the forum!

Now that you have started to get the 'lay of the land' one thing you need to do is to start monitoring your data yourself. They will NOT tell you about this at the VA or at any other sleep clinic. This is something many users do on their own & since your wife said you mouth breathe, there is a way to confirm/deny that using the data your machine has collected. First, download the Sleephead software. There is a link in Pugsy's post, one of her post's is located at the top of the forum page (Pugsy's Pointers). If you read the pointers, it will give you a beginner's guide to the software & one of the things you can check is lead data. If you aren't having any leaks with the P10, all is GOOD. If you are having leaks, post here & we'll try to help you solve the problem.

Reviewing your own data is the best method to help manage your own therapy. Don't worry if it sounds kinda scary, we'll help you, just post your question/issues & forum members with experience in the area of your problem will help. With your numbers, you definitely don't want to sleep without your machine. I'm glad to hear you had a decent experience with the VA hospital. With all we've been hearing in the news lately, its good to hear at least one VA hospital is getting it right.

Jen

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Bill44133
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Re: VETERANS, are you here?

Post by Bill44133 » Sun Sep 14, 2014 7:23 am

Welcome to the forum You are in a good place here. Work any issues you have out here. Lots of smart and helpful people here.

Take 15 minutes and review this youtube video it will help you understand what is going on with you:
https://www.youtube.com/watch?v=-gie2dhqP2c

This video put the whole thing in perspective. I was able to show this video to my family to help them understand what is going on me.


I wish you well

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Bobby269
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Re: VETERANS, are you here?

Post by Bobby269 » Sun Sep 14, 2014 9:37 am

I use the VA here in San AntonioTexas. I have been a patient of the VA for many years. In regards to the sleep clinic they only supply the best equipment to veterans. One of the biggest problems is, if you need an appointment it can take up to 2 months to get it. Other than that I have had no problems with the VA. The therapists are good.
I had a resmed S9 autoset that started making noises they gave me a new one immediately.

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CaptPat
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Re: VETERANS, are you here?

Post by CaptPat » Sun Sep 14, 2014 9:44 am

Thank you for your service.

I'm a vet as well and have been receiving my care via TRICARE instead of the VA. You certainly got a better introduction into the CPAP lifestyle than I did, I found this forum and others which helped to fill in the blanks. It took be about 5-6 weeks before I really felt a lot better, so don't be in a hurry to give up if results are not immediate. I find it really helped to download the date from my machine to sleepyhead or RESCAN to see what was going on. I did that more frequently when I first started out so I could easily correlate the results with my recollection of the how the night went, mask used etc.

Pat

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Re: VETERANS, are you here?

Post by chunkyfrog » Sun Sep 14, 2014 10:01 am

Thanks for your service!
Welcome to the forum.
I'm happy your doctor seems to be a good one--you've earned it.

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Re: VETERANS, are you here?

Post by Pugsy » Sun Sep 14, 2014 10:48 am

Welcome to the forum and thank you for your service..from myself and my Vietnam Vet hubby.
Sleepy Veteran wrote:Lowest SaO2 (Oxygen Saturation): 73% (No wonder I've had no energy!)
That just happens to be my lowest O2 levels also.

While I can't help you with the VA aspect of things I can help with software and understanding what you see on your software reports (see links in my signature line) and maybe some help with equipment if you need it. I also am using the ResMed AirFit P10 nasal pillow mask right now.

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Sleepy Veteran
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Re: VETERANS, are you here?

Post by Sleepy Veteran » Sun Sep 14, 2014 3:23 pm

Guest wrote:
I never had to attend a class like you and when I suggested that very idea it was shot down like a rocket. Oh well, I went on the search and found this place to educate myself and make things work for me, no one else cares.

They are in the process of changing things at my VA and I am not sure it will all be for the better. It seems to be all about the money. What I mean is they used to contract a DME to come to the house to check on things (see if you were using the machine), so they could take the machine back if you are not using it.

Now THAT is some spooky stuff!

During my CPAP class at the VA here they issued each of us our own individual SD card for our machine that we were told had our individual "prescriptions" on them, ( the CPAP machine settings I am assuming).
Then in typical Government fashion they proceeded to instruct us how to adjust the settings on our machines
Later they told us that they would periodically send out a handy-dandy prepaid envelope and we would be required to return the SD card to them so that they could evaluate the data on it and if we were not properly complying with our therapy we would be called in for a "one-on-one" counseling.
That sounded as ominous as I presume it was meant to be.

Then they showed a slide of what data they could see from the SD card, and that's when Ol' stupid me asks: "Excuse me, what software is that?" (knowing that I have an SD card reader on my computer)

"YOU CANNOT GET THAT SOFTWARE!"
"We do not want patients messing around with the settings or data and that software is only available to clinical personnel."

HUH??!!

Of course I had to "politely" remind the nice gentleman that he had just previously SHOWED US HOW TO CHANGE THE SETTINGS ON THE MACHINE!!

"I REPEAT, THAT SOFTWARE IS UNAVAILABLE TO YOU!"
"Please just return your SD card to us in the envelope when you receive it as instructed."

I have put up with enough military BS to last me a lifetime and I have a very low tolerance for people LYING to me, but I also have ZERO problems cooperating with my treatment. This whole idea of Uncle Samuel monitoring my "compliance" just rubs me the wrong way on something like this. (YES, I do understand the medical / clinical concept of "patient compliance" when it comes to CPAP use or other therapies. Its just the way the "Gooberment" goes about it that chaps me!)

Once I got home with my shiny new CPAP machine, (with SD card) the first thing I did was go online and search of course. That's how I ended up here, but also how I VERIFIED what I already knew in my own mind that there IS software available out there to read these blasted cards!

All I need to determine now is specifically what software I need to read the SD card that's in my : PHILIPS RESPIRONICS SYSTEM ONE REMSTAR AUTO A-FLEX, one each.

Also: Thank you all for the welcoming messages and to all you fellow Vets here, Thank YOU for your service as well.

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Re: VETERANS, are you here?

Post by BlackSpinner » Sun Sep 14, 2014 3:39 pm

All I need to determine now is specifically what software I need to read the SD card that's in my : PHILIPS RESPIRONICS SYSTEM ONE REMSTAR AUTO A-FLEX, one each.
Sleepyhead is what the software is called. Look up at the first thread in the box above these ones for "Pugsy pointers & sleephead tutorials"
viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html
This is free ware written by one of our members. If you like it don't forget to donate.

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Pugsy
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Re: VETERANS, are you here?

Post by Pugsy » Sun Sep 14, 2014 3:42 pm

Is your machine the model 550 or 560? The model number is on the bottom of the blower unit. May have REF or DS in front or behind it.
You have the model 550 chosen in your profile right now. If it's the 560 you need to choose the same machine but it says "60 series" in the model name for both machine blower and humidifier.

You can use SleepyHead software. Links in my signature.
If you want the official Respironics software called Encore just end me a private message and I will help you out.
Encore is Windows only though. No Mac version of it like there is with SleepyHead.
Same data gets presented with either machine but visually the graphs look a little different. SleepyHead is much faster plus you can do some cool things with it. Encore you can't do anything with except look.

Actually there is a version of Encore that is openly sold to patients but DMEs won't tell you about it. I don't know why. The main reason patients aren't supposed to know about the software is that with the software a person change change the settings...like we can't do it anyway manually and manually is easier than navigating the software to make changes.
Encore Pro and Encore Basic are what DMEs and doctors use...you can change the settings with it.
Encore Viewer is the patient's version of the software and there's no ability to change the settings in it. It costs $100...
The reports for all of the versions are the same though.
We don't want you spending $ though...so send me a PM if you want to try Encore.

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