Trilogy Vent - Almost Two Years Now

I just realized that I have been using the Trilogy coming up on two years. What they say about hindsight being 20/20 is so true. I wish so much that I had the knowledge (and self confidence) about all this THEN that I do now. I probably wouldn't be in the mess I'm in. And I'm in a mess.

The original DME should never have put me on the Trilogy. My understanding NOW is that at that time, Respironics was pushing the Trilogy as the kind of "solve all" machine for people like me. Nobody told me that this was a perpetual rental and that the co-pay alone on it would run between $200 - $300 A MONTH. And since my original DME was so over their head and the billing was screwed up beyond belief, I didn't find out about it until I was so into the Trilogy that it was impossible to get out. My current DME said that they didn't "buy into" the whole thing about the Trilogy because the way it had to be billed was really NOT, uh, appropriate for those that were using it as a basic bipap or even with AVAPS as I'm using it.

Yeah -- I hear that. Because it's billed as a VENTILATOR, the amount they get every month is astounding. And when a person is using it as I am, it's really outrageous.

If I had known then what I know now, AND I had been told "by the way, you are going to have a $200 - $300 co-pay every month, FOREVER" -- I might have really said we needed to look into something different. The ASV will be okay, probably, for now, but there's no guarantees about that. If I decide to go that route, financially it will be easier on me, but what if a few months into it, the situation takes a downward turn and I need to go back on AVAPS? What do I do then?

The old DME and I had an "understanding" that I would pay the co-pay when I could, but if I had a month where I had other expenses (and with two teenagers, trust me I do) -- they would waive it. But that SOB sold his company and bailed without so much as a "nice to have met you" or anything. I found out by accident that the company had been sold.

The new DME is a large chain type and dealing with stuff like this isn't as easy as the "mom and pop" places. I'm trying to work something out with them because the bottom line is I cannot consistently afford the co-pay on the Trilogy. I just cannot.

I am so upset because I don't know what to do. I lay in bed at night sometimes and make up my mind that I am done and I'm giving up using any equipment at all. That's just the depressed part of my brain griping before I fall asleep - I know that.

And since I've got my husband using a bipap every night - and he never misses a night or complains - it would be hard for me to say *I'M* not going to use equipment.

I agree with -SWS that the Trilogy is probably the smarter solution, but fear I will have to go to the ASV as a default.

I feel stuck in a situation with no good answers.

I don't have much to offer but I just want to wish you the best! I was hoping that the ASV would work out for you. I love mine but of course your situation is different.

Continued blessings to you!

Madalot,
You have been through so much.
I hope someone a lot smarter in this area than we are will post suggestions soon.
You know we're all behind you.

Madalot wrote: The ASV will be okay, probably, for now, but there's no guarantees about that. If I decide to go that route, financially it will be easier on me, but what if a few months into it, the situation takes a downward turn and I need to go back on AVAPS? What do I do then?

Well, the ASV is off-label for extensive hypoventilation. By contrast the Trilogy and AVAPS machines are both on-label for extensive hypoventilation. Also the on-label AVAPS machine costs around the same as the off-label ASV machine---with both usually costing much less than the Trilogy vent:
https://www.cpap.com/productpage/respir ... avaps.html
https://www.cpap.com/productpage/PR-Sys ... anced.html

And this atypically low price just in from Craig's List:
http://orangecounty.craigslist.org/hab/2800541715.html

I’m admittedly confused why the final choice boils down to on-label Trilogy treatment versus off-label ASV treatment. I would have expected the choice to come down to on-label Trilogy treatment versus on-label AVAPS treatment. In any event, should vent treatment become necessary, you will then need to find a way to resume vent treatment. You have my very best wishes and support, Madalot. Hugs too.

Are there other ideas out there for Madalot? Opinions? Thanks in advance.

http://seattle.craigslist.org/sno/hab/2843324990.html

Also there are a variety of Trilogy vents as well as AVAPS machines here:
http://www.dotmed.com/

Dotmed has two brand new PR System One AVAPS machines listed for $2400.

Thanks -SWS for the links.

The craigslist item - I had already contacted them and they said it was sold. I'm finding that several of these craigslist listings -- people CLAIM they are sold but don't take the ad down.

I appreciate the other link as well. I'm going to keep an eye on that site hoping for a great deal as don't have the resources to spend $2000 - $3000 at one time.

I appreciate you all trying to help me think outside the box a bit for a solution.

I just had a discussion with my doctor. She said that if sleep and comfort wise, there was no significant difference between the ASV & Trilogy, she would prefer I stick with the Trilogy.

Exactly what -SWS said -- but that didn't surprise any of us, did it?

Which leaves me exactly where I was before -- the Trilogy seems best, but the monthly co-pay is the issue.

Rock and a hard place.

I have also told her that I am starting to have trouble breathing at my minimum IPAP of 14. It only bugs me when I'm first trying to fall asleep, but I feel suffocated. She and I have agreed that I should increase the IPAP slightly to see if it helps.

That's the other thing with all of this -- my situation changes. What works for a while (weeks, months) may suddenly not be okay anymore. I need something that can deal with the changes.

Ugh.

Perhaps your new larger company would have a financial hardship form you could request, most companies offer this, however you have to be willing to share your financial situation. I would think it would be worth a try, good luck to you.

Three year old thread.
What happened?
Time capsule?

chunkyfrog wrote:Three year old thread.
What happened?
Time capsule?

apparently, the date needs to be in a REAL BIG FONT

I got the email notification of this and was like "WTH???"

I've got another three years under my belt now!! LOL