Without you I would have lost it!

howdidthemovieend? · Post by **howdidthemovieend?** » Sun Dec 03, 2006 8:11 am

Thanks to all who are part of this forum. It's been a long road just to get my hands on my own CPAP. Without having learned so much from this site and from hearing that most of us go through trials and tribulations dealing with "the system", I would not have been able to keep a positive attitude to get to this point. Some things that would have made me scream;
#1. When I ask the pulmonologist for a copy of my sleep study and script, he said,"WHY do you want that , and what are you going to do with it"? He spent 20 minutes trying to make me feel stupid... that I wouldn't be able to understand it anyway. Because of you, I knew enough to ask and expect it. Because of you , I stood my ground, and of course he had to give in.
#2. The RT at the VA made it clear that an APAP was out of the question; "Veterans only get the basics." Because of this site, I knew to at least ask for a c-flex. The Rt didn't know what a c-flex is. She kept saying , "Oh, you mean a Bipap.... you can't get that either."
#3. The scheduled delivery turned sour, when someone at the VA decided I didn't qualify for Cpap tx at all. They cancelled my delivery, and never notified me. After waiting all day I called and was told, by this person.... that I am not a veteran, and she was afraid she would not be reimbursed. (I didn't know it was coming out of her pocket.) and, whats more, I am a veteran. I had to wait two more days. I probably would have been crazy after that experience.... but in this forum. I have heard other nightmarish stories, so I toughed it out.
#4. Actually, the experience with the DME went well. The RT that came to my house was the most informed about sleep apnea than anyone else I had thus far encoutered. At my request, he went over my sleep study results and answered my questions about it. He brought me a pretty good machine, I think.... from what I've read here.... it's a Remstarpro 2 with C-Flex and a smart card. Come to find out that is what all the vet's get....(but the RT at the VA didn't know that!) The other glitch, is that neither the DME company, nor the VA have the software to read the smart card. Huh? But, thanks to this site, I know what a smart card is, and I know I can get my own software.
So, a big thank-you to all. And please.... all you experienced hose-heads.. please know how valuable a resource you are to the "Newbies". Getting use to the mask and the Cpap was a piece of cake compared to everything else. All of your wisdom and tips on improvising for comfort, helped with that too. TY TY TY.

SelfSeeker · Post by **SelfSeeker** » Sun Dec 03, 2006 8:32 am

howdidthemovieend?

I am so sorry to hear about your problems.

I think the country should be thanking you for being a veteran and not giving you this greif. It is so sad.

I somethimes wonder if they do it because we do not have the energy to fight.

Were you able to get a humidifier with it?

Like you I am so thankful for all the great posters, who give us such great advice.

Now the fun begins. Finding an interface that works for you.

Well happy papping days to you and great sleep awaits you.

By the way, I love your user name howdidthemovieend?

howdidthemovieend? · Post by **howdidthemovieend?** » Sun Dec 03, 2006 8:53 am

Thanks for the encouragement, Self seeker. Yes, I did also remember to ask for the Heated humidifier, so that came with the package. I am currently using the Mirage Activa interface, and doing ok with it. The headgear seems a bit big for me, but over all I like it. The Rt at the VA didn't do much in terms of fitting me for a mask... she laughed at me for bringing along a pillow to try out the mask. I had read a post here that said bringing a pillow would be a good idea. The Rt just held a piece of plastic up to my face , then said you need this size.... showed me how the velcro straps worked, and that was it. I asked if I could try it with the machine on... she said no, that wouldn't work unless I was asleep. The VA I go to, only recently started doing sleep studies, so I guess they are still learning. Would be nice if they could admit they didn't know everything, and just try to work with their clients.
The name 'howdidthemovieend".... been a family joke for years, I never get to see the end of a movie.... and that's even in a theater! Hope that changes now!

rested gal · Post by **rested gal** » Sun Dec 03, 2006 9:58 am

howdidthemovieend? wrote:I asked if I could try it with the machine on... she said no, that wouldn't work unless I was asleep.

She laughed at your bringing a pillow for the mask fitting? heheh...well, I'm chuckling at her not knowing how important it is to test the fit WITH the machine going at your prescribed pressure and with you trying out your normal sleep positions right there. Being "asleep" or not has nothing to do with whether the machine blows air into the mask to see if the mask is leaky on you or not.

Sounds like she was very nice though...willing to spend time going over your sleep study report with you.

Fortunately, the mask they gave you -- the Activa -- is one of the least likely to leak of all nasal masks, imho.

And fortunately, the straight CPAP machine they gave you -- Respironics Pro 2 with C-Flex -- is a good one that can record full data rather than just "compliance" onto the Smart Card.

Please check your private messages. The button at upper right of this page.

Goofproof · Post by **Goofproof** » Sun Dec 03, 2006 10:02 am

While not the Flagship of the fleet, the Pro 2 will do a fine job for you, when you get the software and reader. By making small changes in your pressure over time you can find your best setting. Good Luck in our World. Jim

howdidthemovieend? · Post by **howdidthemovieend?** » Sun Dec 03, 2006 10:08 am

Thanks all. And just to clarify, there were 2 different RT's the one at the VA, and the DME RT. The Rt from the DME is the one who did the explaining. Want to give him full credit. ....... You guys are great.

Sleepy-eyes · Post by **Sleepy-eyes** » Mon Dec 04, 2006 8:16 am

howdidthemovieend?

Being a Vet, many of your obstacles sound very familiar. Glad it all worked out. Now the fun begins. I've been having a terrible time getting my mask to fit properly. I'm taking it to the DME today to see if the original fit (yes, the 'ol "plastic cutout placed against the face" trick) was correct. Biggest problem with the DME is they keep referring me back to the VA...........where everything takes a lifetime.

Good luck on your therapy, howdidthemovieend?. Hope it all works out. Be sure to answer rested gal. She's a great help.

howdidthemovieend? · Post by **howdidthemovieend?** » Mon Dec 04, 2006 8:37 am

Thanks sleepy-eyes. Yes, you are quite aware of the additional red-tape working through the VA. Today, I will be contacting the DME to ask for a chin strap, hoping they won't tell me to get in touch with the VA first. But we will see. Stay in touch. I really like my activa mirage; (by resmed) for being brand new to this, I found great success with my mask. Just wish I could read with it on, but it is too bulky, and gets in the way of my vision. At any rate, good luck to you. And, thank you for your input.... Oh, ya, Rested gal is a great resource for all of us, for sure.

Sleepy-eyes · Post by **Sleepy-eyes** » Mon Dec 04, 2006 1:32 pm

I just got back from the DME. They say my mask is the correct size. If I want a different style mask, I'll need to go back to the VA. Oh well!!!!!

howdidthemovieend? · Post by **howdidthemovieend?** » Mon Dec 04, 2006 3:56 pm

I did manage to get three masks from the VA the day I went in for sizing. They offered the nasal pillows and the nasal mask.... (I'm not sure if that is how the Activa mirage is described.) I was concerned about what a person does when they get a cold with nasal congestion. So, I asked the RT; I didn't really like the answer she gave me. She said most people just don't use the CPAP when they have a cold. Ugh, that doesn't make sense to me.... (maybe, I could hear from some of the more experienced hose heads on that). So, any way I asked her for the full face mask, just in case I would need it. . She tried to convince me to "wait and see". but I insisted, and she sort of shoved the mask at me. You know if I would "wait and see" that when the time came that I needed it, I would have to go through all the VA hassle to get the mask. I am about an hour away from the VA for one thing... and the DME is over 2 hours from me..... so they wouldn't be able to accommodate me on short notice either.
Well, hope you make some progress with getting the proper interface. My advice would be to be a pain in the butt, so they just want please you to get you out of their hair.

Sleepy-eyes · Post by **Sleepy-eyes** » Mon Dec 04, 2006 4:07 pm

The problem with my VA is they don't have anything to give me. I have to go to Prosthetics to get them to contact my Primary Care Physician. Then my PCP has to contact me and make an appointment for me to come in to talk with her. Then, and only then, if she agree's I need what I'm asking for, she'll contact Prosthetics, who in turn contacts the DME...........who will then order whatever I need. Now, do I need to add that this is the GOVERNMENT I'm dealing with here? Needless to say, this entire process can take forever. I could, indeed, be a pain in the butt, but I'd have to be one for a long, long time to get anything done.

howdidthemovieend? · Post by **howdidthemovieend?** » Mon Dec 04, 2006 4:29 pm

I hear you. That's crazy. Sounds like a long haul for you.