AVAPS-AE on MY Trilogy - Ongoing

Well, maybe I'll adjust. If you'd told me a year ago I'd be using a min IPAP of 18 and think it was nothing, I'd have thought you were crazy.

Up after increasing max EPAP to 11. As expected, FOTs present, starting within 5 minutes of my masking up. Probably just me, but sometimes during the night they seemed stronger than other times. Once I remember asking myself "is it doing it?" because they seemed so light that I wasn't positive.

I guess the intensity of them isn't something we can really check.

One thing I did notice that I wondered about is that sometimes, concurrent with the FOTs -- my chest hurt. Not bad enough to stop, but weird nonetheless.

Data looks fine. The only thing I'm seeing is that spike in leaks, but I'm not sure if that's when I'm on my back or if I need to replace my mask -- or both.

Average Tidal Volume was around 473, so that's good. I will leave these settings for a few nights and see how it goes.

Something interesting to note: I got an answer about the so-called pulses (now we know are FOTs) HERE before my DME ever called me back for me to ask the question. I know that isn't all that unusual, but truthfully, I was a little surprised because my DME had been pretty good lately.

Madalot wrote:Something interesting to note: I got an answer about the so-called pulses (now we know are FOTs) HERE before my DME ever called me back for me to ask the question. I know that isn't all that unusual, but truthfully, I was a little surprised because my DME had been pretty good lately.

Even though this is a very long & detailed thread & really doesn't apply at all to me (or probably to most people), I was interested in it & have followed it.

Glad to see you may have found an answer!

But, my purpose of this reply was to state what most of you probably already know.

Even with good medical professionals, the patient is still his / her best advocate and must play an active role.

I absolutely agree with you on that! My point was that not only have I not gotten a return call, which is not surprising, but I suspect that even when I ask the question they won't know the answer. I can almost guarantee that they won't be able to get the answer quickly. The fact that I was able to get the answer within a day or so here speaks volumes to the professional knowledge that is contained here.

Shoot! If not for the people here I would still be being told that auto on/auto off was to control the therapy, not to turn the machine on or off when its sensed the mask.

I also find it a bit frightening to realize that I'm using this equipment and if not for my involvement and this forum would have no clue what I was doing with it or if it was even working. As I pointed out in one of my posts, nobody has looked at my data other than reports I have printed out in over 2 years. There could be something going on that no one will see because nobody is looking. We are relying on me and how I feel to determine how things are going.

mollete wrote:

-SWS wrote:

mollete wrote:You kids are going to love this.

The pulsations occur in a pattern:

• The beginning of an EPAP change.
• The end of an EPAP change.
• In the middle of the changes.

As if it were an auto-EPAP design characteristic of some type...

I concur that I see pulsations in the pattern you described. I see three such complete patterns, starting with this first sequence:
1) a cluster of pulsations...

And interestingly, the cluster is always 10 breaths.

My first though was that patient flow-curve morphology probably triggers the initial FOT-based routine toward adjusting EPAP. Looking more carefully, I don't think flow-curve morphology is always the trigger---if ever. Rather, one important algorithmic component appears to be an ongoing "scheduled search" followed by EPAP adjust, if necessary. That strategy is reminiscent of Respironcs' old hunt-and-peck---a constant searching routine for the right pressure based on ongoing flow-curve analysis. By contrast, this is ongoing or scheduled FOT analysis.

In the example below, there's a first FOT cluster that seems to drive the drop in EPAP. There's an immediate FOT cluster once the new target-EPAP value is reached. After a scheduled threshold is met, that dead-center FOT cluster occurs, apparently as a matter of routine validation. After another equivalent interval (time based or breath-count based?) a FOT cluster polls at the beginning of an EPAP upward adjustment. Once that higher EPAP level is reached, another FOT cluster appears---likely as patency validation, and perhaps as a comparison baseline for subsequent FOT clusters---that will apparently occur on a scheduled basis. That pattern repeats in the graph below, with each of three EPAP adjustments being framed by five identically-placed FOT clusters.

Just out of curiosity, is this the first time you guys have seen AVAPS-AE in action? If so, does that mean that every graph you're showing is coming from the data I have provided?

I'm reading every bit of what you all are posting and trying to absorb it all. But truthfully, so much is it is way over my head.

The graph in my post above was originally provided by Mollete. He posted that graph right after you made EDF files available in your dropbox.

-SWS wrote:The graph in my post above was originally provided by Mollete. He posted that graph right after you made EDF files available in your dropbox.

Cool. I'm fine with it if it from my data.

I've come a long way since early 2010, huh?

Yup.

Madalot, haven't "talked" to you lately but just want you to know I'm following what's going on with you and I'm so grateful to those who are taking their time to share their knowledge for the good of you and other readers. From where I sit, you're doing an impressive job of adapting to your changing circumstances and learning new and complex information. I shudder to think of how intimidated I'd be if understanding some of this stuff was important to my own treatment. I guess we do what we have to do. You, my friend, are a good example of that. Thanks for sharing your ongoing saga with us.

You're very sweet, Kteague. The real thanks goes to -SWS and Mollete for taking so much of their time to figure out those pulses (that we now know are FOTs).

I have a funny feeling I'm going to have more questions for them!!!

Even if turns out that AVAPS-AE isn't for me, one thing I have learned from all this. I need to be keeping a better eye on my data. I am handicapped right now because of not having MY Trilogy (or the data card) and the fact that my desktop computer (where I keep most of the data) has crashed. I have the data backed up, I hope, but no real access to it.

My previous Pulmonologist gave me guidelines for certain things, saying as long as the numbers were there, she would be okay with what I did as far as changes on the Trilogy.

I mentioned that I saw a slight downward trend on the PTB, but cannot figure out, for sure, if that started on the loaner Trilogy or before. I was looking at data on my netbook (from August 1 on - got loaner on July 16) and noticed that whenever my average PTB dropped much below 90%, my Minute Ventilation dropped below 5, which was the threshold indicated by my doctor (it needs to be at least 5 per her guidelines). This was happening BEFORE I started experimenting with AVAPS-AE.

Again, I am not 100% certain if this started before. Before my desktop crashed completely, I copied the entire "My DirectView Patients" folder to a flash drive. I'm thinking about trying to access that data from my Netbook and see if I can figure out when this started. I should be able to do that, shouldn't I?

I think I would like to know if this is an equipment issue or something else. I guess that an occasional drop below 5 isn't cause for concern, but I DO think I should be keeping a better eye on it.

Madalot wrote: . . . I've come a long way since early 2010, huh?

Yes.

But I'd also like to say that I've been impressed in this thread by how far some others on this board have come in some ways, too.

Reading the last several pages of this thread has made me happy.

Obviously making me happy is not the purpose of this thread, but I thought I'd make that observation publicly anyway.

Then again, I'm always fascinated by the way -SWS and Mollete support and help each other as they discuss things.

jnk wrote:

Madalot wrote: . . . I've come a long way since early 2010, huh?

Yes.

But I'd also like to say that I've been impressed in this thread by how far some others on this board have come in some ways, too.

Reading the last several pages of this thread has made me happy.

Obviously making me happy is not the purpose of this thread, but I thought I'd make that observation publicly anyway.

Then again, I'm always fascinated by the way -SWS and Mollete support and help each other as they discuss things.

Yes, and they are both very patient when we don't understand what they're talking about. That's one of many things I am very grateful to them for.

You couldn't be in better hands than with SWS and Mollete and the few others I don't "know", so glad they're "taking care of you". I wouldn't want in any way to undermine your team at home, you need them, but I have the feeling that these guys here will figure it out for you. It amazes me how fast and furious the replys are coming your way! You know all your friends are watching this thread intently.