It's Not Going to Happen - I'm Really Stuck

[Madalot]

Well, I got the news today that my sleep center is NOT going to get my ventilator. I wasn't told the reason, but I'm not stupid and have pretty much figured it out. It's not worth the expense to get a specific ventilator for ONE patient, especially if the insurance reimbursement for the study is so low.

If I want to have a study done, I have to use THEIR ventilator, which is different from mine and doesn't have AVAPS. Both my doctor and RT agree that while it might give us some insight as to what exactly is happening, using different equipment adds another variable to a situation that already has too many unknowns and variables.

I spoke at length with my RT today and agrees with something that occurred to me yesterday. When you consider that my neuros can't pinpoint exactly what is wrong with me AND have said that there is a possibility that I have more than one neurological problem, thus compounding the diagnosis process -- how can we say that the progression of the respiratory issues is too rapid? If I've got a combination of problems they may not have seen before, who is to say what the progression should be?

I'm going to get the chest x-ray because I want to rule out something else. I'll do that some time next week I guess.

My only choices right now are to give up and just accept the treatment I'm getting now or keep doing the trial and error until we get lucky and find something better.

My RT told me that he is NOT ready to throw in the towel (Bless his heart -- he's a good egg). He said he's going to try talking to some other RT's and maybe sleep techs that he knows and see if any of them have any ideas or suggestions for what we can do.

But that's the deal -- no sleep study for Madalot any time soon.

[Bright Choice]

So sorry for what you are going through. I don't have any insights but I wish you well!!

[-SWS]

I would suggest taking the sleep study on the ventilator they have, Madalot. Then match your ventilator to those NPSG settings to gauge improvement---if any. Then experimentally add or compare AVAPS after factoring those PSG-determined changes toward the AVAPS settings...

Good luck!

[Madalot]

I would suggest taking the sleep study on the ventilator they have, Madalot. Then match your ventilator to those NPSG settings to gauge improvement---if any. Then experimentally add or compare AVAPS after factoring PSG-determined changes...

This is an option and I appreciate your saying that you suggest going ahead and doing it. I haven't ruled it out. My doctor and RT said it might be worth doing, but are both concerned about the differences in the two ventilators.

:::sigh:::

[cflame1]

is there a possibility of bringing yours in to the study?

[Madalot]

is there a possibility of bringing yours in to the study?

No. I've asked numerous times and they won't use it.

I've asked about sleep centers that MIGHT already be using it. According to my RT, not all sleep centers do ventilator studies, thus many don't have the equipment.

[-SWS]

AVAPS is not the only way to skin a cat, Madalot... And I think if you remove AVAPS from the equation, your ventilator can at least approximate those NPSG vent settings close enough. Thus you can at least walk away from the NPSG with SOME validated vent settings to try...

You can compare NPSG-approximated Trilogy settings against your former AVAPS settings. You and your MD (and/or RT) might THEN experimentally adjust your former AVAPS settings for additional comparison. I think that would be my own preference under the circumstances, Madalot. I'm pulling for you as always!

[Madalot]

AVAPS is not the only way to skin a cat, Madalot... And I think if you remove AVAPS from the equation, your ventilator can at least approximate those NPSG vent settings close enough. Thus you can at least walk away from the NPSG with SOME validated vent settings to try...

You can thus compare NPSG-approximated Trilogy settings against your former AVAPS settings. You and your MD (and/or RT) might THEN experimentally adjust your former AVAPS settings for additional comparison. I think that would be my own preference under the circumstances, Madalot. I'm pulling for you as always!

-SWS -- extremely valid points. Thank you. This makes sense to me. Maybe what we need to do is stop trying to figure out what's happening with the AVAPS settings and just start over from scratch.

Okay with you if I put it to my doctor and RT basically the way you've said it here? I won't tell them where I got it or anything, but can I use most of what you said to present it to them?

I had pretty much given up, but this makes me think it may be worth considering a little more.

Thanks again -SWS.

[HoseCrusher]

Madalot, Keep in mind that more data brings things into better focus.

My vote is to go for it.

[Cindy Lou Who]

Madalot, Keep in mind that more data brings things into better focus. My vote is to go for it.

And I second Hose Crusher's vote. The more you learn the better able you and your neuro's will be able to separate the important things from the insignificant many...and I mean that in a kind way. Sometimes the volume of small stuff covers up the important data.

Certainly wish you well and hope this gets quickly resolved.
Cindy

[snuginarug]

Oh dear, things are really not gelling for you. I am so sorry mad. I don't have anything wise to say, but do know you are in my thoughts. ((((( HUGS )))))

[DoriC]

You're not stuck. I would really push for that sleep study with their equipment. It is definitely "worth doing". The more information the better. Also someone would actually be watching you sleep. That's always been on my mind for you. They may find something of importance that can then be related to your machine's settings. I'd love it if you memorized and repeated your wishes exactly as SWS said it. Don't forget the "skin the cat" line!

[Madalot]

I talked to my husband last night and related to him what had been said here, specifically -SWS's comments. And we talked about it some before going to bed.

I kind of like the idea of video taping everything in my home first, but I don't have any equipment to do it. But this may be something to do first. But this is something I hadn't considered...

Anyway -- I DO think the reasons you all have given for going ahead and doing the study on their equipment make sense.

We're going to talk some more, think about it more over the next few days. I'm going to get the chest x-ray early in the week, assuming things went as they should and my facility actually has the order for it, but you know how those kinds of things tend to go.

I also need to make sure that they can justify a study to my insurance to PAY for a study. I know my facility charged close to $4000 for my titration study and I would guess a ventilator study is even more. Like I've said a couple of times, a lot of this has nothing to do with what is needed, but what INSURANCE dictates is necessary.

That's a whole 'nother thing to worry about too.

Lots to think about, lots to talk about....

Oh, I found out yesterday that my ventilator is due for it's annual maintenance and will be getting both a hardware and software upgrade. From what I understand, some of the alarm issues I've had should be better with the upgrade and might make it easier to use some of the alarms. That should be interesting.

[BlackSpinner]

[quote="Madalot"

I kind of like the idea of video taping everything in my home first, but I don't have any equipment to do it. But this may be something to do first. But this is something I hadn't considered...

[/quote]

This kind of equipment can be rented. My daughter makes (or hopes to) films and she rents all her equipment when she does a shoot.

[DoriC]

I know kteague made her famous recording.