How concerned should I be about the length of these Centrals?

[Sleeprider]

  Way to go!

[Sleeprider]

I haven't talked to my current DME since last week. They were offended that I requested an AirCurve ASV (the machine I thought I went to the sleep study for) and that I didn't what the DreamStation. That's when I got the run-around about the need for the DreamStation based on my prescription and the wording about the Tidal Volume. They didn't like it that I knew ResMed could do the same thing.

So at the beginning of this week I called LinCare back to ask which machine was ordered. I was told the person that I needed to talk to was in a meeting but she would be given a message to call me. She still hasn't called back, so I figured out how to get my own prescription and sleep study results. After studying the results and posting on here, I felt that SleepRider had the two best possible solutions for which machine to get. 

After researching possibilities on how to get one of the machines, I remembered that Apria only sells ResMed products. So this morning I called my insurance first too see if the E0471 has been approved or where it is in the process. I was told that they haven't received a request for that. Even though my prescription says URGENT on it, Lincare is mad enough to not even submit it yet for approval. I then asked my insurance if I could switch to Apria and was told yes.

I then took by prescription and sleep study titration directly to Apria's office. I talked to the lady and told her what was going on and told her that Lincare also has the results but has dropped the ball. I also told her that I have educated myself a bit in this process and that I use a program called SleepyHead and that I learn a lot from online research and forums. I also told her that I knew that Apria only deals with ResMed and that once the insurance code for E0471 was approved that my insurance didn't care if I got the AirCurve ST, AirCurve ST-A or the AirCurve ASV. All three have the exact same negotiated rate. I told her that based on the wording of my prescription, the need for a backup rate and that I have Muscular Dystrophy with a weakening diaphragm muscle, I felt that the ST-A was the best choice for me over the course of the next 5 years of owning the machine. 

She was quite surprised that I knew all that. She said that in the 27 years that she's worked there, I'm the first person that understood the insurance end and the differences in the machines. She said that it was a wonderful thing that I've taken the time to learn. Since I gave her everything she needed to start the prescription process and submitting it to the insurance she was going to start on it today and get it submitted to my insurance. Unfortunately the respiratory therapist is on vacation until Monday but she was going forward with it all anyway and will have as much of it processed as she could by then. She told me to expect a call on Monday. She also made copies of all my documents, including the brochure for the AirCurve ST-A. She attached it all together with my reasoning behind getting that machine.

So hopefully I'll know Monday if Apria agrees with the ST-A.

I haven't decided yet when I'm going to tell Lincare no to bother. I don't really know how that works if two companies end up sending in for approval about the same time. I think that either on Dec 8 or 9 my monthly lease for my current machine renews. So it looks like for one month I'll be paying the rental cost on the old and new machine. But hopefully that also gives me until January 8 to return my current machine since I will have already paid for the rental. I will have two machines for a short time to give me the space to learn to adjust to the new machine.

It's not a victory yet. But I have a different route to take to try to get the ST-A through a different in-network provider.

I can't thank everyone enough on here for helping me. All of you are invaluable! 

This kind of empowerment is what makes this forum special  You've come a long way to be able to take back control of your therapy and outcome.   It's not easy, but in a few months, you have acquired knowledge that exceeds most of those that get paid to do this.  Knowledge is power, but your willingness to follow through with self-advocacy takes it to a new level.

BTW, it was back in September I first pointed to ASV or ST-A as your future. http://www.apneaboard.com/forums/Thread-...#pid272815

[LookingForward]

I remember you mentioning the ST-A. I almost bought the ASV out of pocket from Supplier #33 several times in the last month or so. But I kept thinking that I need to wait because I had a feeling that I would end up needing the ST-A instead. I'm glad I held back. 

Way back in May when I had the first appointment with my current pulmonary doctor, I knew I would end up with a machine and found the ST-A when looking up what was available. When I saw that it was targeted for people with severe COPD or neuromuscular disorders, I printed it and took it to show my doctor ResMed's most recent machine. At the time he said that I would never need a machine that advanced. 


I think it's also good for others to know that if they are determined to get a ResMed, that with as frustrating some Apria's can be, they only sell ResMed.

[LookingForward]

Quick update:

I finally got a call back from Apria just before they closed today. The lady was very nice and said that they agreed with me that the ST-A was the correct machine and they will provide it. 

She said that the copy of the prescription I provided them didn't have the doctor's signature on it so they are working to get a signed copy. They also don't have the ST-A in stock but as soon as they have the signed prescription she can either get the ST-A from another nearby facility or order one and it would take 2-3 days to get in. At that point she will also submit it to my insurance for approval.

I also decided to buy an AirCurve 10 VAuto on Craigslist today. It has a scuff mark on top but low run hours. It probably sounds really crazy but I need to return my current VAuto to Lincare as soon as I get the new machine. I've been on a ResMed AirCurve ST two years ago and the shortness of breath was so bad that I finally gave up and returned the device. I just couldn't function at all after using it. My current doctor and the old doctor both have said that it was probably the backup rate that caused it. I really don't know. I just knew that I couldn't continue to have days of barely functioning at all. So although I'm partly celebrating that it's looking more like the ST-A will be happening, I'm really concerned as to how I'll do with it. So I thought if I had an AirCurve VAuto as a backup that I could always sit during the day and try to get a normal balance back to breathing if I need it. If I do well on the new device, I can alway keep this as a backup unit or sell it.

Question, the vAuto that I purchased today has a blank SD card in it. I want to try to use the machine soon to make sure it works properly. Should I transfer my SD card to this different device or use the blank SD card? Will it mess anything up if I put my SD card into a different device?

Also when I get the ST-A, should I keep my current SD card and return the new one to Lincare with the old device so that I'm keeping all my data? Does Lincare even want the used SD card Back? And will it mess up the ST-A to put an SD Card in that has been used in a VAuto?

[LookingForward]

BTW if you're interested, here's my thread on the ASV path.

READ IF YOU WISH BY CLICKING HERE

Thanks for the comments everyone. I will read your journey, Dave. I need all the help I can get to start making these phone calls tomorrow. As for tonight, I think I'm going to take Sleeprider's suggestion and change my settings this way from my original thread "BiLevel Machine...Advise needed" post #25:

"Personally, I think you could do very well in Vauto mode at EPAP min 9.0, PS 4.0 and IPAP max 16.0." 

good plan to do those settings, at least you'd gain some relief for now

Dave, I finally read all they way through your journey! I feel like I have fellow sojourner walking with me 

You had quite the battle to get your machine. I very much enjoyed reading it though. I should have read it all the way through much sooner though. You had already figured out that Apria only sells ResMed unless a doctor specifically requests something different. I'm not quite sure yet what I'm going to say to Lincare when I return the AirCurve VAuto to them. They still haven't returned a call so I'm guessing it will be a surprise to them when I just walk in to return the machine. I wish I could do it by mail but I know that I need to do it in person. I need the receipt of the return and have them know that I won't be continuing to get the supplies through them. I'll probably just tell them that I secured a machine a different way and then try to evade giving them much other information.

[LookingForward]

It's been a while since I updated this thread. I ended up with Shingles for a while and other health issues.

In January, I got a DreamStation BiPap AVAPS. It's a good machine. I think the Sleep Technician did a good job finding the right settings for me. I don't have a desire to change them. 

I still have too much shortness of breath but I think that's neuromuscular related not because of the machine.

It's nice having the backup rate. I've also felt a little increase in my muscles due to getting more air at night. 

I've never used the ResMed AirCurve ST-A so I can't compare that but as far a ResMed compared to the DreamStation, there are things I like about the ResMed better.

1. The humidifier tank is bigger on the ResMed. I always run out of water in tank at night with the DreamStation. Hopefully when winter is over that won't happen. 

2. I like the smaller size of ResMed on my table. But that's not a big deal, just a difference.

3. I can't use SleepyHead with the BiPap AVAPS. I miss SleepyHead. I've already sent a message to Bonjour letting him know that I'll gladly Beta Test at some point or just offer information from my SD Card if development gets that far. 

I am using EnCore but it's just not the same. Nevertheless, I am very grateful for the BiPap AVAPS. It is a good machine for me. 

My AHI has never been above 1.5 since I started on this machine. 90% of the time it's .5 or lower. 

Another interesting thing is that I'm actually dreaming again sometimes. It had been years since I was dreaming before the BiPap AVAPS. So I guess that means that I'm going into the various sleep cycles now. I am still somewhat tired but that's getting a little better too. 

My biggest issue at the moment is I've gained weight and water weight since starting BiPap last summer. But I've changed my diet some in the last few days and can already tell a difference in some of the water retention. Now to start working on a different diet. My hunger seems to have gone crazy since starting on a machine. 

I started a different thread about the water retention but that can be deleted if a moderator wants too. I didn't know how to delete it. I found some answers doing a search though.

Its kind of crazy and sometime scary how dependent I am on needing to use the machine now. I think because of the neuromuscular issue, I no longer have a choice to use it. 

I know that many of you would never choose to not use a machine. My attitude isn't quite their, but I'm getting there. 

Thanks for all the help and encouragement getting this far.

[Sleeprider]

Congrats on the new machine. The newest #Sleepyhead should be able to display the data if you are interested to look at it. Good luck, and glad we were able to get you on the right track. It took a while.

[LookingForward]

I tried to see if it would work when I first got my machine. But it didn’t.  I’ll check to see if I have the latest version.

Does it matter if I have a Mac? I can use my husband’s Windows computer if that’s better.

[Gideon]

There are versions for Mac, Windows and UNIX