AVAPS-AE on MY Trilogy - Ongoing

[Madalot]

That max pressure setting sounds good, Madalot.

Fantastic! I'm using these settings tonight.

Thanks so much!!

[Madalot]

Well, I'm up after making the changes suggested by ~SWS. Everything to baseline and ONLY changing the EPAP Max to 10.

Slept fine. Having the rate set at 7 (rather than auto) was a lot easier. I still had a little of that "putt putt putt" on exhalation, but it wasn't quite as severe.

Data is showing PTB Average back up to 97.62%, with a low of 60% which is about back to normal. Average IPAP was 18.42 with a peak of 21.48. Average EPAP was 9.39 with a peak of 10.04 (max was set to 10).

Everything else was within guidelines set by my previous doctor.

NOTE:

I just went and reviewed the data from the last month and was SHOCKED to see my PTB has dropped on this ventilator. There has been a night or two around 97%, but most nights are 91%, 92% -- with occasional drops into the 80's, which is NOT typical for me.

The only difference between this ventilator and my Trilogy is the AVAPS Rate setting, which I have set at 3 (mid range). I can't imagine this would cause such a drop in PTB average.

Doctor upped my Min IPAP a few months back from 16-18. I would need to get MY card back and check the data on MY Trilogy to see *IF* this drop corresponds to that.

I'd been sleeping/feeling well enough I hadn't checked the data. Damn. With the switching out of the Trilogy (and thus I don't have the data from before Mid July) -- I can't be 100% positive what is causing this, but I am guessing it's this Trilogy.

But, with the difficulty in turning over at night, this could also be disease related issues.

Hmmm...looks like I have more to think about than I thought.

[Madalot]

I have decided to suspend all the testing on the AVAPS-AE Mode for right now.

I need to figure out WHEN my average PTBing went down to where it's averaging low to mid 90's (with many dips into the low to mid 80's). I need to figure out *IF* there is a culprit (the higher min IPAP, the loaner Trilogy or just disease progression).

Until I get MY Trilogy back, with my data card, I can't investigate this properly.

So, supine sleeping or not, I'm going back to basic AVAPS until I see when this began.

jnk & ~SWS -- I so much appreciate your time and input. The direction we were going was a good one and if appropriate, we can pick up where we left off. Keep your eyes peeled for this to resurface!!

[-SWS]

Madalot, I just reviewed the differences between AVAPS and AVAPS-AE. It appears the difference is that the latter offers auto-EPAP. Otherwise, the features are the same regarding pressure delivery. The AVAPS-AE requires "PS" nomenclature rather than "IPAP", simply because auto-EPAP necessarily moves the entire IPAP range up and down with each EPAP change.

As I understand it, these are the differences between your side-sleeping settings and supine-sleeping settings:

SIDE SLEEPING VALUES:
Tidal Volume: 400
EPAP: 9
Rate: 7

SUPINE SLEEPING VALUES:
Tidal Volume: 440
EPAP: 12
Rate: 9

Looking at the above differences, I can definitely see why you would like to explore both auto-EPAP and auto-backup rate. I'd suggest slowly exploring auto-EPAP all the way up to EPAP max of 12 (while holding EPAP min at 9 and backup rate at 7). If an auto-EPAP range of 9cm to 12cm doesn't seem adverse, then I'd suggest exploring whether the auto backup rate can work for you as well. If not, then perhaps a middle-value of 8 for backup rate might suffice. I'd definitely suggest running all this by your RT and your doctor. They might come up with better ideas.

Speaking of good ideas, I like Dori's idea of using hardware to make turning in bed easier. Two other possibilities I found on the Internet were this device and these. Good luck with your present experiment. I'll keep following along as you continue to explore AVAPS-AE...

[Madalot]

~SWS,

Do you think I should hold off on this until I figure out why my average PTB has decreased since mid July (when I got this loaner)?

I still want to continue working on the AVAPS-AE and think you have NAILED what I need to try to accomplish my goal.

I am WONDERING if I've been on my back more than I realized and perhaps that would explain the lower PTB?

As far as turning over, thanks for those suggestions to both you and Dori. Hubby and I are discussing our options.

[-SWS]

Do you think I should hold off on this until I figure out why my average PTB has decreased since mid July (when I got this loaner)?

That's a tough one, Madalot. It's not a bad idea to review your initial AVAPS settings and attempt to optimize if you or the medical staff thinks the settings are suboptimal. However, if you don't have a longitudinal database, you might not have the means of attributing the PTB change to machine swap-out versus physiologic trend.

I think you're going to have to take your best, intuitive guess as to whether you should forge ahead with AVAPS-AE or go back and re-establish a baseline on AVAPS... Tough call IMO.

[Madalot]

Do you think I should hold off on this until I figure out why my average PTB has decreased since mid July (when I got this loaner)?

That's a tough one, Madalot. It's not a bad idea to review your initial AVAPS settings and attempt to optimize if you or the medical staff thinks the settings are suboptimal. However, if you don't have a longitudinal database, you might not have the means of attributing the PTB change to machine swap-out versus physiologic trend.

I think you're going to have to take your best, intuitive guess as to whether you should forge ahead with AVAPS-AE or go back and re-establish a baseline on AVAPS... Tough call IMO.

I sent an email to my RT asking for her input. I haven't received a reply as of yet, but she sometimes takes 24 hours to respond.

The data from last night (AVAPS-AE with Max EPAP upped to 10) showed my average PTB at 97%. That's BETTER than it has been on standard AVAPS for the last month.

If you look at my PTB for the last month, it's all over the place. Where I WAS staying pretty well at 97% - 99% (with an occasional drop as low as 94%), the trend since mid July is lower 90's (with occasional upper 90's or down into the low to mid-80's).

I could leave it on AVAPS-AE tonight and see if my PTB stays in the upper 90's. If it does, continue on it, at those settings, for a few night and see *IF* it's helping. If it drops to the lower 90's or below, then I need to go back to square one.

Hopefully my RT will get in touch today sometime.

Yeah -- it is a tough call and unfortunately, I am probably going to have to make the decision on my own.

[-SWS]

Madalot, I think you have a good plan with contingencies. Keep plugging, as always, and we'll keep rooting for you.

[Madalot]

Madalot, I think you have a good plan with contingencies. Keep plugging, as always, and we'll keep rooting for you.

I've decided. Unless I hear differently from either my RT or doctor, I will stay on the AVAPS-AE settings, checking PTB every morning. If it stays in the upper 90's, I will continue down the path set forth by ~SWS, making the changes he suggested (I'll print them out to take with me to the ventilator cart so I know I won't screw it up).

If I hear from my RT or doctor and they want to do something differently, obviously I'll defer to their instructions.

If left to my own (which it seems I am) -- this is my plan.

[Madalot]

Well, another night under my belt with only one AE setting enabled - Max EPAP to 10. Everything else is exactly as it is on basic AVAPS.

Still had that "putt putt putt" issue on exhalation from time to time. Also noticed some pulsing, which my other Trilogy did early on but hadn't done it in a long time. I'm only guessing since I'm just a dumb patient, but wondering if the algorithm is trying to gauge what I'm doing and what it needs to do????

Anyway -- data this morning was in line. PTB about 95%.

Spoke to my doctor last night (RT seems to be in the wind at the moment). The conversation was a little strange and became stressful. I won't bore you with everything he said, but while he didn't say NO to my trying this, he's not very positive about it being worthwhile.

He felt that setting all the parameters correctly could be difficult and was concerned that my Tidal Volume might suffer in the testing process. So, I'm checking that as well and last night's average was 465, well above the 400 target.

I had computer issues this morning and DirectView wouldn't load, which really ticked me off. Instead of downloading and getting the data by 7am, I spent hours screwing with the computer. But, I got it fixed.

Anyway, my doctor said he wanted to speak to my RT about what I want to do and figure out the settings, but with her not responding to me, I don't know how I am going to accomplish that.

Unless something changes with either of them before tonight, I will probably keep going on the current settings for another night or two, then continue on with ~SWS's ideas one step at a time.

[-SWS]

He felt that setting all the parameters correctly could be difficult and was concerned that my Tidal Volume might suffer in the testing process.

He has a valid point IMO. Recall that PS is the difference between IPAP and EPAP. But PS is also the parameter that affects tidal volume most with respiratory-insufficiency and central type disorders. With your old AVAPS settings, PS might develop as high as 14cm while side-sleeping or 11cm while supine-sleeping----on an as-needed basis during either program mode.

However, the AVAPS-AE parameter called Max Pressure stands to hamper some of that PS headroom. To exemplify, let's pretend that you decide to hold Max Pressure at 23, while gradually increasing EPAP Max all the way up to 12cm. Despite a PS Max setting of 14cm, the Max Pressure setting of 23cm will override how high PS may go. In this example if EPAP automatically increases to 12cm, then IPAP can only go as high as the 23cm restriction imposed by the Max Pressure parameter. The end result is that you now lose about 3cm headroom on PS delivery that your original AVAPS (side-sleeping) settings could deliver if needed.

If you find tidal volumes waning just a bit, especially when side-sleeping, then I would suggest asking the doctor if he will approve increasing Max Pressure by 2 or 3 cm. I'm VERY glad your doctor is interacting and expressing concern. He clearly cares about doing what's right, and I think that's a good thing.

[Madalot]

Thanks for explaining this! I have been and will continue watching the data and make sure Tidal Volume doesn't go down and if it does, request an IPAP max increase.

My RT emailed me and was going to contact my doctor. I haven't heard anything more.

It's wonderful to get your take on this. It's a fabulous second and confirming opinion. Makes me a lot more comfortable continuing the experiment.

[Madalot]

Last night was my 3rd or 4th night on the AVAPS-AE with just Max EPAP changed (from basic AVAPS) to 10.

After screwing with my desktop computer AGAIN, which is apparently having a hard drive meltdown and ultimately moving to my Netbook to look at the data from last night....

Data still looks good. PTB down to 94%, Tidal Volume around 450, average IPAP almost 20, average EPAP around 9.5.

I was incredibly tired last night, falling asleep early for me. I woke up a few times, but was astounded to wake up at 5:30 realizing I hadn't really moved in 7 hours. While that sounds good, the pain from laying in one place is anything but fun.

~SWS - does it seem reasonable to go ahead and increase the max EPAP to 11 at this point or am I being too impatient?

[-SWS]

Madalot, I think it's okay to increase every 3 or 4 days if you meet this criteria:
1) PTB and tidal volume numbers are consistently good,
2) you haven't presented much data variability---in any given week--- in the past, and
3) you're certain your medical staff does not object

Your medical staff necessarily maintains veto privileges for the sake of safety... So even if they buy in, periodically keep them in the supervisory loop. Let them know how your data is shaping up, and how you plan to proceed. Give them an opportunity to pull the plug on your experiment every step of the way.

[-SWS]

Jnk asked about a possible need to increase Max Pressure along the way. Madalot might have to. But I still recommend increasing Max Pressure only if tidal volumes wane a bit with any given Max EPAP increase, but especially when side-sleeping.

With Min EPAP 9, Max EPAP 11, Min PS 9, Max PS 14, and Max Pressure 23, these will be the allowable PS ranges, per auto-EPAP value:

@auto EPAP 9===>PS 9cm through PS 14cm
@auto EPAP 10===>PS 9cm through PS 13cm
@auto EPAP 11===>PS 9cm through PS 12cm

The old AVAPS side-sleeping settings used fixed EPAP 9cm, allowing PS 9cm through PS 14cm
The old AVAPS supine-sleeping settings used fixed EPAP 12cm, allowing PS 6cm through PS 11cm

We can see the above side-sleeping comparison is where Max Pressure 23cm MIGHT cause tidal volumes to wane just a bit. I would suggest raising Max Pressure only if needed, since 23cm above atmospheric pressure is quite a bit---and 24cm, 25cm, and 26cm amount to even more pressure above atmospheric pressure. More importantly, if the medical staff suggests different values, then I would suggest deferring to those settings.