AVAPS-AE on MY Trilogy - Ongoing

[jnk]

You are welcome. I'm glad if my input was of any use as a starting point for you and your team. I hope you find ways to make things as comfortable as possible for you.

I am glad you are at this site.

-Jeff

[Madalot]

You are welcome. I'm glad if my input was of any use to you.

You are way too modest. The input was FABULOUSLY useful to me. And I will modify your suggestions as needed, but I really NEEDED a starting point.

I am glad you are at this site.

Right back at 'ya! You were the first to welcome me and you've had my back for over three years now. And I am extremely grateful for it!

[Madalot]

I am still waiting to get the okay from my doctor, but I have set up the AVAPS-AE on the Secondary Prescription as follows (posting just for anybody that is interested).

AVAPS-AE

AVAPS Rate 3
Tidal Volume 400 (this is what I currently use, may need to be bumped up a bit)
Max Pressure 25
PS Max 14
PS Min 6
EPAP Max 13
EPAP Min 7
Breath Rate Auto (I'm currently at a set 7 and am interested in what this will do)
Trigger Type Flow
Trigger Sensitivity 6.0
Flow Cycle Sensitivity 25%
Rise Time 4

Everything else (alarms mainly) are set to OFF

Any comments or concerns about these settings is welcomed. I set it up based on what Jeff said, my current settings and basically winging it.

Does anyone happen to have any idea how this new mode will relate with DirectView? I'm wondering *IF* I will need to find a way to get my paws on an updated version of DirectView???

[jnk]

. . . Max Pressure 25
PS Max 14
PS Min 6
EPAP Max 13
EPAP Min 7
. . .

My numbers were PS Min 9 an EPAP Max 11. That would reflect your present PS range based on the numbers you gave for your present setup.

If you go PS Min 6, that will not help your work of breathing as much.

And if you use an EPAP Max of 13, which is quite a bit higher than 9, you will need to raise your Max Pressure to 27 if you want to give the machine full range of PS and EPAP. My mention of Max Pressure of 25 was based on a Max EPAP of 11.

[Madalot]

. . . Max Pressure 25
PS Max 14
PS Min 6
EPAP Max 13
EPAP Min 7
. . .

My numbers were PS Min 9 an EPAP Max 11. That would reflect your present PS range based on the numbers you gave for your present setup.

If you go PS Min 6, that will not help your work of breathing as much.

And if you use an EPAP Max of 13, which is quite a bit higher than 9, you will need to raise your Max Pressure to 27 if you want to give the machine full range of PS and EPAP.

Makes sense. My last study, they got settings for supine sleep and they had the EPAP at 12, which is why I went higher than 11. How about this:

PS Min 9
EPAP Max 12
Max Pressure 26

[jnk]

Makes sense.

[Madalot]

I have NOT gotten a response from my doctor yet about my request to give AVAPS-AE a test run.

The weakness from my disease is making it more and more difficult to turn over. I have been told to sleep on my side, which is fine, but pain on one side wakes me and I am having a lot of trouble getting turned over to the other side, frequently stopping on my back and falling asleep. Even with the ventilator going, hubby says I snore on my back and he pokes me incessantly to wake me up.

Last night, I woke up in agony and could not get turned over to the other side. I made three attempts and wore myself out, leaving me no choice but to stay on my back. After hubby poked me for about the fifth time, I got up and completely out of bed and managed to get myself back down on my sore side to sleep.

Today, I feel like I have been run over by a dozen trucks, or something that was chewed up and spit back out.

I'm afraid I may have to just do it and let the consequences of it be damned.

[jnk]

Sometimes no one wants to say yes but their not saying no says something. Only you can decide. If your setup is for comfort more than true ventilation, I doubt they would mind. But that doesn't make your call any easier.

[DoriC]

How about a guard rail of some kind to grab onto when you want to turn over? Or maybe they make that exact equipment to assist patients. I think I've seen something like that in some hospital rooms. You might inquire. Just thinking out loud??

[Madalot]

How about a guard rail of some kind to grab onto when you want to turn over? Or maybe they make that exact equipment to assist patients. I think I've seen something like that in some hospital rooms. You might inquire. Just thinking out loud??

I was thinking about that as well. Last night, I was able to make the turn on my first attempt (after sleeping on my back for about an hour). So, while more and more difficult, hit or miss whether I can make the turn.

I switched to AVAPS-AE last night. Wasn't bad. Hubby said I snored a little while I was on my back, but it wasn't too bad so he didn't wake me up.

I noticed is that my minimum pressure started out around 15.9 or 16. I know my doctor would like my minimum around 18, so I'm guessing I would need to increase the PS and maybe the EPAP Min? I don't know why I'm having such a hard time understanding this to fix the numbers myself. PS certainly is hard for me to grasp.

One thing that I did find fascinating was that occasionally on exhalation, instead of a smooth, long exhale, it would be more like a "putt putt putt putt" -- that would last for 10-20 seconds, then smooth out again. At first I thought the EPAP was too high, but I looked the first time and it was low (for me anyway) being around 6 or 7.

I'm going to look at the data later today and see what it looks like.

Edited to add: A quick look at the data showed ALMOST everything was pretty good. PTB looked ugly, however, being around 33% (I'm usually 97% - 99%).

[Madalot]

I feel I'm in over my head. I am listing the settings I've been using for Side Sleeping, what they changed for Supine Sleep (regular AVAPS mode cannot do both) and how I set the AVAPS-AE for last night.

I am a bit concerned about PTB being down to 33% and I have an idea of how to fix it, but am not sure enough to just do it.

I also know that my new doctor wants my minimum pressure at 18, which is fine, but I just cannot figure out how to fix the settings (PS) to get it that way.

If anyone with any expertise wants to chime in to help me, I'd be greatly appreciative.

Regular AVAPS Settings for SIDE Sleeping:

Mode: S/T with AVAPS Enabled
Tidal Volume: 400
IPAP Max: 23
IPAP Min: 18
EPAP:9
Breath Rate: 7
Inspiratory Time: 1.5
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 6
Flow Cycle Sensitivity: 25%
Rise Time: 4
AVAPS Rate: 3
All Alarms Disabled

Regular AVAPS Settings for SUPINE Sleep (changes only being listed):

Tidal Volume: 440
EPAP: 12
Breath Rate: 9

AVAPS-AE Settings:

Mode: AVAPS-AE
Tidal Volume: 400
Breath Rate: Auto
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 6
Flow Cycle Sensitivity: 25
Ramp Length: OFF
Rise Time: 4
AVAPS Rate: 3
Maximum Pressure: 26
PS Max: 14
PS Min: 9
EPAP Max Pressure: 12
EPAP Min Pressure: 7
All Alarms Disabled

[-SWS]

I feel I'm in over my head. I am listing the settings I've been using for Side Sleeping, what they changed for Supine Sleep (regular AVAPS mode cannot do both) and how I set the AVAPS-AE for last night.

I am a bit concerned about PTB being down to 33% and I have an idea of how to fix it, but am not sure enough to just do it.

I also know that my new doctor wants my minimum pressure at 18, which is fine, but I just cannot figure out how to fix the settings (PS) to get it that way.

If anyone with any expertise wants to chime in to help me, I'd be greatly appreciative.

Regular AVAPS Settings for SIDE Sleeping:

Mode: S/T with AVAPS Enabled
Tidal Volume: 400
IPAP Max: 23
IPAP Min: 18
EPAP:9
Breath Rate: 7
Inspiratory Time: 1.5
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 6
Flow Cycle Sensitivity: 25%
Rise Time: 4
AVAPS Rate: 3
All Alarms Disabled

Regular AVAPS Settings for SUPINE Sleep (changes only being listed):

Tidal Volume: 440
EPAP: 12
Breath Rate: 9

AVAPS-AE Settings:

Mode: AVAPS-AE
Tidal Volume: 400
Breath Rate: Auto
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 6
Flow Cycle Sensitivity: 25
Ramp Length: OFF
Rise Time: 4
AVAPS Rate: 3
Maximum Pressure: 26
PS Max: 14
PS Min: 9
EPAP Max Pressure: 12
EPAP Min Pressure: 7
All Alarms Disabled

Madalot, are you trying to set up PS min so that IPAP never drops below 18? If so, the two parameters I highlighted in red text need to add up to 18. Please let your doctor's office know in advance about the changes you propose. Give them the chance to object, should they see something wrong in your proposed experiment.

[Madalot]

I feel I'm in over my head. I am listing the settings I've been using for Side Sleeping, what they changed for Supine Sleep (regular AVAPS mode cannot do both) and how I set the AVAPS-AE for last night.

I am a bit concerned about PTB being down to 33% and I have an idea of how to fix it, but am not sure enough to just do it.

I also know that my new doctor wants my minimum pressure at 18, which is fine, but I just cannot figure out how to fix the settings (PS) to get it that way.

If anyone with any expertise wants to chime in to help me, I'd be greatly appreciative.

Regular AVAPS Settings for SIDE Sleeping:

Mode: S/T with AVAPS Enabled
Tidal Volume: 400
IPAP Max: 23
IPAP Min: 18
EPAP:9
Breath Rate: 7
Inspiratory Time: 1.5
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 6
Flow Cycle Sensitivity: 25%
Rise Time: 4
AVAPS Rate: 3
All Alarms Disabled

Regular AVAPS Settings for SUPINE Sleep (changes only being listed):

Tidal Volume: 440
EPAP: 12
Breath Rate: 9

AVAPS-AE Settings:

Mode: AVAPS-AE
Tidal Volume: 400
Breath Rate: Auto
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 6
Flow Cycle Sensitivity: 25
Ramp Length: OFF
Rise Time: 4
AVAPS Rate: 3
Maximum Pressure: 26
PS Max: 14
PS Min: 9
EPAP Max Pressure: 12
EPAP Min Pressure: 7
All Alarms Disabled

Madalot, are you trying to set up PS min so that IPAP never drops below 18? If so, the two parameters I highlighted in red text need to add up to 18. Please let your doctor's office know in advance about the changes you propose. Give them the chance to object, should they see something wrong in your proposed experiment.

Thanks, -SWS. That explains why my starting pressure was around 16. Bumping both numbers up by 1 would give me that magic 18. And to my inexperienced eye, that seems reasonable.

Any thoughts as to why the PTB would drop so much on these settings compared to my regular ones? I'm typically at 97% - 99% PTB so 33% is a pretty radical drop.

My doctor is out of the country and I still haven't heard from him about doing this. What if I run all this by my RT before going again? She seems pretty good and usually gets back to me within a day or so.

[-SWS]

I won't have a chance until this evening to read this entire thread, Madalot. Generally PTB can take a nose dive under these circumstances: a) over-ventilating (respiratory drive becomes inhibited), b) under-stenting (backup rate tries to compensate for under-addressed obstruction), or c) backup rate is too fast relative to spontaneous breath rate.

[Madalot]

Thanks, -SWS. If you have the time to spare I would be grateful. Something else I'm thinking...

Something isn't quite right since my PTBs took that dive. I'm wondering if I should put the rate back to a set 7 rather than on Auto. Based on your info, that might be a factor. I do remember feeling rushed to inhale several times.