Trilogy discomfort in end stage

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WillowJ

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Hey all,

We're having tough days. My mom's breathing issues have increased and she's really uncomfortable and short of breath. We're giving her morphine to try and help with a little success. But the real issue is that she's stopped tolerating her Trilogy today - every time we put it on her, she either tries to get it off right away or tries it for a few minutes and becomes increasingly agitated and worked up. It seems to make her breathing even worse, and we don't know if the mask is making her anxious or what is really bothering her about it. Up until a few days ago she was wearing it 12-15 hours a day.

Has anyone else experienced anything like this with their PALS? Could it be that her diaphragm muscles have weakened to the point that they can't keep up? I've talked to Laurie today (thank you again Laurie!!) and was able to adjust her settings to really ramp down the intensity with the hope of her being able to tolerate it tonight. Grateful for any other thoughts or suggestions.

-Jen
 

Samkl

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Oh dear Jen, I’m sorry this is happening. Laurie would give you the best advice. I’ll be thinking of your Mum tonight 🙁
 

PamC

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Hello Jen,
Reading your post reminds me of how our life depended on the Trilogy. If it is of some help, I recommend to keep calling the respiratory therapist to check the settings. My husband used two bipaps as he depended on them 24/7. We used a Respironics during the day with a small pillow nose piece. This was comfortable and did not interfere with using his eye gaze Tobii communication device. At night he used the Trilogy with the full mask. He found the pillow nose piece to be more comfortable than the full mask for day use. The Trilogy was essential for sleeping.
Wishing you and your mother comfort and prayers.
Pam
 

Jimzako

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Was your nose piece set at the same setting and force as the trilogy
 

PamC

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Hello,
The Trilogy mask was a full face mask. The back up bipap accommodated a small, nose only "pillow" and did not cover my husband's mouth. This "mustache" pillow allowed him to easily use the Tobii eye gaze communication device with an unobstructed view. Please let me know if this is not enough information. I understand the discomfort of using the Trilogy constantly. With my husband requiring constant support, he would have been miserable using only the Trilogy full face mask. Our insurance did not cover the second bipap. It was a long term loan from our respiratory medical provider. Having a back up is important. We once had a fright when the Trilogy stopped working. Without the second unit, my husband would have died in the time it would have taken to get help. This information is intended to not frighten but to point out what can be easily overlooked.
 

Cony

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My husband uses trilogy
It is very important to find the correct setting where she is comfortable
The same thing happened at first with him
There are two modes PC and ST
He felt comfortable using the ST mode
Also, There are different types of mask You can use with the trilogy
 

JimInVA

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I know that WillowJ's Trilogy issue with her Mom has been resolved. Regardless, thank you for your posts as they can be helpful to others, too.

My best...

Jim
 

Fredlevin

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Thanks for letting us know. My wife has been on trilogy 24/7 for over a year, and our respiratory therapist has helped us whenever there was an issue. We know the fear.
 
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