ASV One Week Trial - Continuing Updates

[Madalot]

Sorry to keep adding posts, but I keep thinking of things. I hope nobody minds.

I took a LONG nap this afternoon on the ASV. One thing (big thing) I noticed is that when the ASV needs to increase IPAP to "encourage" me to breathe on my own, it backs down immediately once I start breathing, unlike the Trilogy that "steps" down gradually. This is much more comfortable and could explain why I feel I sleep better. Maybe???

My DME got back to me quickly and explained some of the issues involved should we elect to switch me to the ASV. It is a "step down" so to speak and therefore, things are a bit different from their perspective.

One of the pluses is the ASV is a 13-month capped rental which means I would own it after that, but with that also comes the issue of paying for repairs separately (after the warranty of course). I would also NOT get the regular RT follow up that I get now and supplies would be handled separately. Also, there is no battery backup on the ASV like there is on the Trilogy. I know I could get something, but it's not quite as simple as it is on the Trilogy.

A LOT to think about and consider.

[teknomom]

I'm glad you're keeping us up to date. It's quite a decision which most of us have never had to make. It's interesting and has made me think about some ASV questions. Keep us informed!

[Madalot]

One more thing...

My DME has very graciously offered to let me keep using the ASV for another few days (week) until we make the decision. IF we decide on the ASV, I'll keep this one. It was brand new when they brought it.

[DoriC]

I know it's a lot to consider and I'm sure your head is spinning, but that Ipap breathing feature you describe is a great big maybe? Also the fact that your Dr feels it might be good for you on a long term basis. Does she just feel or is she pretty certain? That's got to be a hard call for her to make but that would go a long way in deciding what to do. You've clearly described what's at stake here but I keep trying to figure out a loop hole that would allow you to have both machines,that wouldn't involve too much out of pocket for you and would enable you to keep the benefits of both. Wish I could help more but thank you for taking the time to update, we all care about you.

[HoseCrusher]

Oh my goodness...

The drama continues and now it is going to be stretched out for what looks like another week.

The question still remains unanswered... Will she or won't she switch? Only her diaphragm muscles know the answer, and the communication channels are foggy at best.

Tune in next time to see if the machine will blow her up. Also, we may find the answer to if she can handle the humidity and still come out fresh as a breeze...

And now a word from our sponsor.

"Snap, is a happy sound, you've got to have snap to make the world go round, snap crackle pop, rice crispies..."

Sorry...

I was just listening to an old time radio program of Suspense, and thought I would have a little fun.

It is great to see some differences between how the two machines are working. I don't envy your decision process. Think it through and make the best decision you can.

[snuginarug]

Tune in next time to see if the machine will blow her up.

Aerophagia?

Mad, we're all here, rooting you on.

((( hugs )))

[Madalot]

Thanks to those that have posted, and all that read and keep up. It's much appreciated.

I wish there was some way to know for certain what the right choice is. No matter which machine I choose (and it seems like my DME and doctor are going to leave the final decision to me) I will always second guess myself.

This is very tough. Both machines have their merits and pros and cons. Financially, the decision is easy, but that's just not the only, nor should it necessarily be the main, consideration.

I just don't know right now. Tough, tough, tough.

[jbn3boys]

Hang in there, Maddy, and take your time. Sounds like you could take another week to decide, since the DME is allowing you more time with the ASV. I pray that you are able to make the right (best) decision with all the help you can get, and that once the decision is made, that you have PEACE that it is the right decision. I sure wish there was more that we could do to help you!

Hugs,
jbn

[Madalot]

Hang in there, Maddy, and take your time. Sounds like you could take another week to decide, since the DME is allowing you more time with the ASV. I pray that you are able to make the right (best) decision with all the help you can get, and that once the decision is made, that you have PEACE that it is the right decision. I sure wish there was more that we could do to help you!

Hugs,
jbn

Thanks. I know that hindsight is 20/20, but I wish I could go back in time and question my DME more thoroughly about the Trilogy. I also wish I had known then what I know now and taken advantage of some of the help trying to be given to me here by some of the more experienced forum members.

But since I can't go back, I have to do the best I can NOW with the information I have. If I decide on the ASV, I am kind of stuck with it for at least 5 years, which is fine if nothing changes with my condition in that time. But, if my condition radically changes, getting the Trilogy back could be an issue.

:::sigh::: I really don't know what to do.

[jnk]

Nighttime comfort, daytime energy, and daytime comfort may form the basis for your personal decision on the matter, since only you can judge those things, but depending on location, battery backup MATTERS a great deal in your circumstance, I would think.

On a side note, I'm not sure I would put too much stock in the DME's warning about it maybe being difficult to get the Trilogy back because of insurance. I mean, it is nice of them to mention that possiblity, but are they basing that on something specific that has happened in the past with a specific patient they dealt with in anything like a similar circumstance? If not, I think I would tend to run that concern by the DOC to get her observations on that since, if she has some experience fighting for people in your position getting what they need, an assurance from her would tend to trump any broad hypotheticals from one DME, to my mind. I can't imagine your being denied a noninvasive-vent setup in the future if a doc says that's what you need. Then again, obviously, I have less knowledge on such matters than your DME. Just letting you know what my brain's reactions were to your words if that sparks any ideas for your discussing things with the people that form your medical team.

[Madalot]

Nighttime comfort, daytime energy, and daytime comfort may form the basis for your personal decision on the matter, since only you can judge those things, but depending on location, battery backup MATTERS a great deal in your circumstance, I would think.

On a side note, I'm not sure I would put too much stock in the DME's warning about it maybe being difficult to get the Trilogy back because of insurance. I mean, it is nice of them to mention that possiblity, but are they basing that on something specific that has happened in the past with a specific patient they dealt with in anything like a similar circumstance? If not, I think I would tend to run that concern by the DOC to get her observations on that since, if she has some experience fighting for people in your position getting what they need, an assurance from her would tend to trump any broad hypotheticals from one DME, to my mind. I can't imagine your being denied a noninvasive-vent setup in the future if a doc says that's what you need. Then again, obviously, I have less knowledge on such matters than your DME. Just letting you know what my brain's reactions were to your words if that sparks any ideas for your discussing things with the people that form your medical team.

Excellent point, Jeff. I am going to send my doctor an email asking her this very question. IF I were to decide to switch to the ASV and my condition changed, would we be able to switch back to the Trilogy without much difficulty? See what HER take is on it.

Thanks!

[DoriC]

Is there a financial advantage to the DME if you keep the Trilogy rather than rent-to own the ASV in 13months?

[HoseCrusher]

If I had to make the choice for you...

I would say that you should keep both.

You can pay for the ASV by having a bunch of bake sales. I'll take two dozen peanut butter chocolate chip cookies...

If you made the really big and charged something like $10 per cookie, you would just have to sell a few dozen.

[Madalot]

Is there a financial advantage to the DME if you keep the Trilogy rather than rent-to own the ASV in 13months?

Sorry I didn't reply to this yesterday -- this cold is kicking my butt.

Yes, there would be a financial advantage for the DME if I stick with the Trilogy. They would continue billing the insurance for the Trilogy rental, GETTING it, and not doing very much with/for me other than sending an RT out every 2 months to check, sending me my supplies (included in the rental). If I go to the ASV, the entire money situation changes.

However, the guy I am dealing with has said this and is honest about it. While I may have made it seem that he is pushing me to keep the Trilogy, he's actually not. He has said that it's my decision and they will do whatever I want or my doctor deems appropriate. He has made the comment about it "possibly" being a bit difficult to get the Trilogy back down the road, but I feel it was done more as a "just be aware" and not intended to push me in one direction or the other.

I would be the first to question the DME's intentions - this guy is cool.

If I had to make the choice for you...

I would say that you should keep both.

You can pay for the ASV by having a bunch of bake sales. I'll take two dozen peanut butter chocolate chip cookies...

If you made the really big and charged something like $10 per cookie, you would just have to sell a few dozen.

LOL -- Seriously, I wish I could do both, but it's not a good option financially. I know I could scour craigslist to find an ASV, but that would still leave me with the Trilogy at a high cost.

I have not made a decision. Having this stupid cold is not helping me because I don't feel like dealing with this.

I believe that the original DME went way too far by giving me the Trilogy and should have tried an ASV first, which he didn't do. I think HIS motivation was purely financial, using my medical diagnosis as a way to push such a high end machine, hoping it would give him a huge financial boost his company desperately needed to stay afloat.

I need to make a final decision and stick with it. I wish I knew what the RIGHT answer is.

[jnk]

. . . what the RIGHT answer is. . . .

Either choice has some "rightness" about it. If you can, you may want to try to think of it as a win/win choice, not a lose/lose choice, since you can make either choice work, and no one can expect you to see the future, after all.

What about your statement earlier in the thread about "slightly more trouble with daytime breathing since I've been on the ASV"? Is that attributable to the oncoming cold symptoms?

In my opinion, for me anyway, daytime comfort is more important than nighttime comfort. And no one can compare the daytime-comfort effect of a possible machine change and fight a cold at the same time. A cold would be a valid reason to delay, or extend, the trial, I would think, if that is possible.