Trilogy NIV frustrations

[suebfla]

My husband was diagnosed with ALS in June 2022, limb onset with bulbar problems increasing. A ventilator was prescribed in August, delivered at the end of September and he's never been able to tolerate it. His SVC decreased from 64% in September to 40% in December. Our respiratory rep from the equipment provider has been here 3 times but has been unsuccessful in getting it right. We requested another rep but since we are in a very rural area, they don't have anyone else they can send. We took the unit to clinic (2 1/2 hour drive) for respiratory to check the settings. Some modifications were made but we only had limited time since there were so many other people to see that day. He is getting very frustrated because every time we try to test, it just tires him out. He says it blows when he is trying to exhale. He describes it as inhaling a gallon, expelling 3/4 and over time, he's being overrun.
We have the ability to get into all of the settings and they gave us both a passive hose and active hose with the appropriate masks. I really have no idea what to change or how to help him. Any ideas??

 

[lgelb]

I will PM you and help with your settings.

 

[affected]

Welcome Sue - hopefully you will solve this as Laurie is our resident expert on adjusting settings.

 

[suebfla]

Hi Laurie, I just e-mailed you! Thanks

 

[Mary2]

Hi Suebfla, Laurie helped us find the right mask so hopefully she can assist you.

 

[MupstateNY]

I hope that resolves things. If not, my naïve suggestion would be to have it tweaked during a short hospital stay. I think the key there would be for a medical provider to let the ER know that they want him admitted. If this is not a good suggestion I trust someone more experienced will let us know.

 

[lgelb]

A hospital stay, through used by some countries as a revenue source, is unwise for many reasons, from COVID to the fact that a hospital is a different setting from the bed/furniture/conditions at home.

NIV adjustment is needed throughout the course of ALS. It's not set and forget. ALS progresses. And during prolonged coughing, choking, etc., esp. for someone reliant on BiPAP for life, settings need adjustment on the fly (e.g., remove backup rate, change from volume support
to pressure support).

Always happy to help anyone with their settings/mask/machine.

Best,
Laurie

 

[affected]

Sue did you get some adjustments working today?

 

[suebfla]

Laurie is our Angel! She helped us get to a starting point that my husband can tolerate. We had to lower some of the settings but hopefully we can work on getting them to where he will benefit from the ventilator. Clinic and our respiratory rep have never been able to do that. THANK YOU LAURIE!

 

[affected]

Glad to hear it, Laurie is definitely our resident bipap settings expert. Remember, this will still need adjusting as progression will keep changing the situation, but now you can feel confident that adjustments can be made quickly in response.

 

[lgelb]

Thank you for the kind words, Sue. Always my privilege to help out. Actually, it may be worth noting that Sue's husband was put on PC mode in order to bill Medicare at a higher rate, since I have not seen this in a year or so. Very few PALS should be on any mode but S/T with either AVAPS [Respironics] or iVAPS [ResMed] functionality enabled. If you are on a PC, S, AC, or any other mode and do not have a tracheostomy, please reach out.