Because So Many Have Asked Me To

[-SWS]

Leaks -- interesting thought. The Trilogy's monitor shows the leak rate. According to my RT, anything in the 30's is considered normal and anything below 60 is not cause for concern. My leak rate tends to stay in the upper 30's or low 40's.

Masks have been an ongoing problem for me since day 1. I am currently using the 431 FF Mask and it seems to be the best of those I've tried. I purchased a 432 online thinking the foam might be helpful and give me extra cushion and seal. All it did was give me a serious blister on my cheek!! I plan to keep it and use it, just without the foam. I also have a brand new mask, a Respironics FF Mask with gel -- I just haven't gotten around to trying it yet.

Leaks can be pretty tricky at times. Nightly leak averages help as highly coarse data feedback. However, it's possible to have an acceptable nightly leak average, but still have significant numbers of short-duration leaks that can alter proper machine IPAP/EPAP cycling. The way to spot that particular problem---of recurring short-duration leaks----is with much finer data granularity than nightly leak averages offer:
http://directview1.respironics.com/
So if any of your clinicians happen to have DirectView, then consider asking them for a higher-resolution look at leaks. Nightly average leak rates are still important data IMO.

I am open to discussing any and all aspects of the settings. I think just the little we've discussed here has been extremely helpful.

Sometimes kicking relevant concepts around while in exploratory mode eventually yields a eureka moment. Tonight or tomorrow I'll try to add some comments/thoughts to this thread about machine backup rates relative to spontaneous breathing and variability... Then we can explore some of the relevant machine parameters more closely.

Because you are so sweet, I put the kitties in the sink back on. Just for you.

Hooray for sink cats!

[Madalot]

I just went back and looked over the report from my download a couple weeks. Remember, this darned report is 43 pages long!

I found the summary for leaks. It gives the maximum, minimum and average for leaks, but it provides it for a week at a time (this report does NOT list a day at time in the summary).

I'm looking at the last week of the report:

Maximum Leak: 156.9
Minimum Leak: 35.1
Average: 39.57

So, what you've said about a possible large leak messing things up -- seems like that might be applicable here.

I'm just wondering though -- I know that sometimes when I move/turn over at night, I can hear a HUGE leak, but I immediately fix by adjusting the mask (I do this a lot during the night). Would the ventilator pick that up, thus showing a HUGE leak, even though it wasn't very long? Because my averages are pretty much in the 30's no matter what the maximum got to.

Interesting.

[JohnBFisher]

... I'm just wondering though -- I know that sometimes when I move/turn over at night, I can hear a HUGE leak, but I immediately fix by adjusting the mask (I do this a lot during the night). Would the ventilator pick that up, thus showing a HUGE leak, even though it wasn't very long? Because my averages are pretty much in the 30's no matter what the maximum got to. ...

Yup. It is why we often say seeing what is happening at the same time is important. I know you RT is handling that. So you might ask her if she sees large leaks at the time you also seem to have problems with triggered breathing. Of course, it can be a chicken and egg problem. These units will keep increasing the pressure if your volume is too low (breathing too shallowly). And of course increased pressure = greater chance for leaks = less effective therapy. I clearly don't have the same degree of problems, but if my mask leaks too much I tend to feel horrible the next day.

So, it does not hurt to see if keeping that in order will help with other parts of the therapy. Might not make any difference. But if it does, every little bit will help.

Anyway, we sure hope it helps!

[Banned]

it may be time to look at ALL the settings again, specifically looking for things that conflict.

If anybody has a copy of the Trilogy provider's manual, I'll be more than happy to carefully look at all the settings. That might turn out to be a very fruitful discussion in this thread.

Madalot, if you'd like, in this discussion we can also explore not only the concept of spontaneous breathing rate, but how spontaneous-breathing variability itself can sometimes present clinicians with a HUGE challenge when trying to set machine backup rate optimally.

ok. I'm confused.

I thought Madalot was using a Respironics BiPAP AVAPS device and was in possession of the on-line Respironics BiPAP AVAPS Provider Manual.

What is a Trilogy?

What AVAPS device is Madalot using? Does she have the Provider Manual?

Banned

[-SWS]

So you might ask her if she sees large leaks at the time you also seem to have problems with triggered breathing.

When it comes to skewing BiLevel IPAP/EPAP cycling, the leaks don't even need to be large... timely moderate leaks can throw a wrench into the works just fine.

ok. I'm confused.

I thought Madalot was using a Respironics BiPAP AVAPS device and was in possession of the on-line Respironics BiPAP AVAPS Provider Manual.

What is a Trilogy?

She has a Trilogy ventilator, which can be configured in AVAPS mode plus quite a few other modes. It's currently configured in AVAPS mode I think.

Madalot, did I get that right?

[Madalot]

... I'm just wondering though -- I know that sometimes when I move/turn over at night, I can hear a HUGE leak, but I immediately fix by adjusting the mask (I do this a lot during the night). Would the ventilator pick that up, thus showing a HUGE leak, even though it wasn't very long? Because my averages are pretty much in the 30's no matter what the maximum got to. ...

Yup. It is why we often say seeing what is happening at the same time is important. I know you RT is handling that. So you might ask her if she sees large leaks at the time you also seem to have problems with triggered breathing. Of course, it can be a chicken and egg problem. These units will keep increasing the pressure if your volume is too low (breathing too shallowly). And of course increased pressure = greater chance for leaks = less effective therapy. I clearly don't have the same degree of problems, but if my mask leaks too much I tend to feel horrible the next day.

So, it does not hurt to see if keeping that in order will help with other parts of the therapy. Might not make any difference. But if it does, every little bit will help.

Anyway, we sure hope it helps!

Thanks John -- good to get your perspective on this. And what you say makes perfect sense.

And just so everyone pretty much knows -- my RT has all but abandoned me at this point. I think no matter what I try to do, she's upset with me for complaining about her and we may never get to a point where things are okay again. She isn't doing anything other than the download from the overnights. Remember, she left me at settings we knew weren't good for over 10 days because she wouldn't return my call!

The owner of the DME and I have an agreement about how things should go and what we will do if they don't. He's asked me to continue trying to work with her, but to let him know immediately of any issues or problems.

I'm finding myself, right now, working more with the owner and my doctor, but the owner of the DME is not an RT and has a limited knowledge of all this stuff. He and I had an "honest" talk recently, during which I expressed to him that I might not be able to continue working with them IF the RT didn't step up and start doing her job properly. And during that conversation, I was able to bring a few things up to him that he obviously was not aware of -- and sure didn't sound too happy about. Stupid stuff like their hours are 8 - 5, M-F and a half day Saturday, yet she never wants me calling her before 10:30 any day (she's never there before 9 either) and Saturday is a definite no no. There are other things, but this is just one example that he was totally unaware of and was none too happy about.

And that's where we are right now.

[Madalot]

So you might ask her if she sees large leaks at the time you also seem to have problems with triggered breathing.

When it comes to skewing BiLevel IPAP/EPAP cycling, the leaks don't even need to be large... timely moderate leaks can throw a wrench into the works just fine.

ok. I'm confused.

I thought Madalot was using a Respironics BiPAP AVAPS device and was in possession of the on-line Respironics BiPAP AVAPS Provider Manual.

What is a Trilogy?

She has a Trilogy ventilator, which can be configured in AVAPS mode plus quite a few other modes. It's currently configured in AVAPS mode I think.

Madalot, did I get that right?

Yes -- Trilogy 100 Ventilator, set up in Spontaneous/Timed and AVAPS Modes. I was on a Respironics bipap machine until the middle of February, which may be why Banned is confused (it was in my profile for a while).

Who wouldn't get confused with my situation?

[Banned]

Trilogy 100 Ventilator, set up in Spontaneous/Timed and AVAPS Modes.

I may be confused because I'm a newbie to this thread.

Does the Trilogy 100 Vent have a PC AVAPS setting?

Banned

[Madalot]

Trilogy 100 Ventilator, set up in Spontaneous/Timed and AVAPS Modes.

I may be confused because I'm a newbie to this thread.

Does the Trilogy 100 Vent have a PC AVAPS setting?

Banned

I will have to look at that and will do it either tonight or tomorrow, depending. I've been on the computer most of the day and my body is starting to get really tired and sore. But I'll check the settings and post something either later tonight or tomorrow.

I'm looking to see if it can be switched from Spontaneous/Timed to Pressure Control, right?

[Banned]

I'm looking to see if it can be switched from Spontaneous/Timed to Pressure Control, right?

At this point you would be looking to see if the Trilogy even has an PC AVAPS or similar setting function.

If not, you may want to request that your doctor switch you to a Respironics BiPAP AVAPS.

Banned

[Madalot]

I went and looked and the vent DOES have a PC mode. I didn't change it, yet, because:

1) I need to write down the settings in case some of them get changed switching to PC mode (so I can change everything back).

2) On the offhand chance PC mode DOESN'T work with AVAPS mode, I need to make sure I know how to switch everything back.

But yes, there IS a PC mode that appears to be compatible with the AVAPS mode.

[JohnBFisher]

... If not, you may want to request that your doctor switch you to a Respironics BiPAP AVAPS. ...

That water is already over the dam. The unit is the next step up in terms of therapy and is appropriate to Madalot's situation. And the therapy needed is based on what her doctor can discern from sleep studies and data from her current unit plus her doctor's greater experience in Madalot's situation. We certainly don't need to dictate the therapy!

[-SWS]

I don't think it's a foregone conclusion just yet that PC mode is what Madalot needs to rush into...

Rather, I think the idea is to first see what might not be optimal about her S/T settings---or even if highly-common leaks are the culprit for premature IPAP/EPAP cycling.

[Madalot]

... If not, you may want to request that your doctor switch you to a Respironics BiPAP AVAPS. ...

That water is already over the dam. The unit is the next step up in terms of therapy and is appropriate to Madalot's situation. And the therapy needed is based on what her doctor can discern from sleep studies and data from her current unit plus her doctor's greater experience in Madalot's situation. We certainly don't need to dictate the therapy!

Probably true, but since the vent DOES have PC mode, it doesn't matter anyway. But when you consider my condition and how fast things have been progressing lately, it's more likely than not that eventually, I'll need INVASIVE respiratory therapy that will require a ventilator anyway. That may be a large factor in them ordering it now since it will probably be critical at some point in the future. Having it now meets my needs now (hopefully) and any future needs they anticipate.

[akcpapguy]

Yes the Trilogy does have PC-AVAPS mode, and YES some of the secondary settings will change if you change the mode.

Nevermind already lambasted in PM's for making recommendations so I will just leave you with the facts of the device.