Trilogy settings - what do you recommend?

[NothingButLove]

My wife recently got a Trilogy. I've attached pictures of her prescription. The DME set it up and my wife tried the settings briefly when we picked it up. On further inspection, the setting were not good. (The night time setting might be good if you wanted to run a marathon while sleeping. Breathing rate was way high...) Additionally, I don't think the DME followed the doctor's prescription.

My immediate goal is to get my wife using the Trilogy at night. What settings would you recommend? My wife is 58 years old and currently 85 lbs. Her normal weight before ALS was 100 lbs. Her FVC is in the mid 40s.

I've noticed Laurie seems to be the resident expert on Trilogy settings. Your input would be much appreciated.

Rob

 

[GregK]

I suspect Laurie will also want to know why you think the settings are wrong, how is your wife unhappy with current settings, what appears to be not effective?

 

[NothingButLove]

GregK - First, when set for night use, it was not usable as provided by the DME. It made her breath so fast it was like she was running in a race. Also, when I looked at the settings, it didn't seem to match the prescription. For both day and night, the mode is set to AC. The prescription indicates night mode should be a pressure mode.

I really have no confidence in the DME. The person who setup the Trilogy at the DME was literally a kid. It looked like he just graduated from high school. He couldn't even demonstrate how to setup the suction machine correctly. He connected the vacuum hose from the machine to the patient port on the little bucket. I had to explain to him the filter on top of the bucket was to protect the machine from moisture and the suction wand gets connected to the port labeled "to patient".

I do have a call into a person who works with another DME who is really knowledgeable and works with my clinic and the ALS Association. I was hoping he would call me back today and help me out but he's a pretty busy guy.

And of course, I could just stop by the clinic and have them help me out. I really need to get my wife going on this.

However, I would like to go beyond just letting someone else setup the machine and forget it. I would like to learn about the different settings and make sure she's having the best and most comfortable experience she can have while wearing a giant full face mask while she sleeps. I'm hoping Laurie can help me here.

Rob

 

[lgelb]

Ay, caramba.
Everything about this rx (which really isn't one) is wrong. Don't let her try it any more before we fix it.
Rob, how tall is your wife? Does she have any pre-ALS history of lung disease, smoking, sleep disorders?

This crazy script leads me to the blanket statement: if anyone without a trach is running a Trilogy on any mode except S or S/T, with or without AVAPS enabled, please post so we can probably improve your breathing.

 

[GregK]

Please post in a new thread, tho, so things don't get confused!

 

[NothingButLove]

Hi Laurie,

My wife is 5' 2" tall. She has had no lung disease. She was a light smoker for 25 years. She quit smoking about 10 years ago. She never had any sleep disorders.

Thanks for you help Laurie!

Rob

 

[lgelb]

I agree about starting at night, though she may want to try watching TV, listening to music, etc. while she gets used to it. She might even doze off, which would be fine. There's no need to have different day and night settings, esp. with a nasal mask. This is where I would start (with a nasal mask, not a full face mask, unless she prefers the FF mask, of course).

Let me know if you need help getting into the settings menu/clinical mode.

You will not see all these settings (they are slightly different depending on which Trilogy you have) and if I have missed any you have, let me know.

I would also turn off all alarms for now, except maybe for circuit disconnect depending on your circumstances.

Mode S/T
Ramp off
AVAPS enabled
Target volume 250
AVAPS rate 1.0
Breathing rate [this is the backup rate] 8
Ti [also for the backup breaths, which our goal is to be 0) 1.3
EPAP 4
Pressure max 15
PS Min 4
PS Max 8
IPAP max 12
IPAP min 8
Trigger: Flow
Trigger Sensitivity: 4
Cycle Sensitivity: 20%

Since the ultimate goal is for your wife to become comfortable with the Trilogy, you can set the target volume even lower if needed and inch back up over time. Ultimately, she will probably do better with 300 +.

 

[GregK]

The full face mask can be claustrophobic! As Laurie said, a nasal mask, or nasal pillow mask, may be much easier to get used to.

Once she's used to the BiPAP, you can experiment with the full face mask. That's how it worked for me, leastways!

btw, BiPAP causes really bad dry mouth, I recommend you check out Xylimelt tablets (Amazon and CVS have 'em)

 

[NothingButLove]

Thank you Laurie so much!

My wife's machine is a Trilogy 100, Software Version: 14.1.03. Here are the new settings according to your suggestion:

Mode: S/T
Circuit Type: Passive
AVAPS: On
AVAPS Rate: 1.0 cmH2O
Tidal Volume: 250ml
IPAP Max Pressure: 12.0 cmH2O
IPAP Min Pressure: 8.0 cmH2O
EPAP: 4.0 cmH2O
Breath Rate: 8 BPM
Inspiratory Time: 1.3 seconds
Trigger Type: Flow Trigger
Flow Trigger Sensitivity: 4.0 l/min
Flow Cycle Sensitivity: 20%
Rise Time: 3
Ramp Length: OFF
Nebulizer Enabled: OFF

The three things I can set on my machine not listed in your settings are: Circuit Type, Rise Time and Nebulizer. I know Circuit Type is correctly set to Passive. I don't need the Nebulizer feature. Rise time seems to be like a ramp per breath. A setting of 1 is very abrupt and 6 is smooth and ramps up slow.

The settings my machine doesn't have that you listed are: Pressure max, PS Min and PS Max.

I think the problem with a nasal mask is my wife sometimes sleeps with her mouth open. Correct me if I'm wrong but I think that kind of screws things up. I'm actually very impressed with the mask she got from the DME. It's an ResMed AirFit F20. I use a CPAP machine myself and I'm liking the magnetic straps, detachable hose and no forehead bumper.

Thanks again Laurie. We're going to try it tonight. I'll let you know how it goes.

GregK - Thanks for the tip on Xylimelt!

Rob

 

[GregK]

You can get chin straps for the open mouth issue, but (if my hazy memory serves right) they're not too popular...

 

[lgelb]

Rob,

Rise time is about the ramp up on inspiration and I would start, since we are trying for a kinder/gentler experience, at 6. Many PALS who think their mouths will be open with a nasal mask find that's not true after not too long, but as I say, use what works.

 

[GregK]

Laurie,

I think this is on-topic (if not, my apologies for the hijack!) :

when I try to take a deeper breath than normal, my Triology cuts it off and goes into the lower pressure, as it would for a "normal" breath.

What controls this?

 

[lgelb]

Cycle sensitivity, most likely. It's the percentage of inspiratory volume that triggers EPAP. Try lowering it.

Unless you are triggering a backup rate, which has a fixed inspiration time associated with it, in which case, lower the backup rate.

This assumes you are in S/T mode?

 

[GregK]

ST, yes.

We put my flow rate at 50%, way back...
thnx!

 

[NothingButLove]

Laurie,

Those settings worked great on my wife's Trilogy. I upped the tidal volume to 300ml and my wife is handling it without a problem. I'm so happy she's using the machine. Thank you very much!

Rob