Assist Control issues

Please use this community for general discussions about Duchenne Muscular Dystrophy (DMD).
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Posts: 1
Joined: Thu Oct 04, 2018 3:37 pm
Diagnosis: DMD
Diagnosed: 1981
City: Nipomo
State or Province: California
Country: United States

Assist Control issues

Postby kurumaisu » Thu Oct 04, 2018 4:16 pm

I'm forty years old with DMD and have been using a Trilogy 100 for the last 8+ years in S/T mode (Current settings: 30/4). As is typical, I only used it overnight at first, and then started using it for a few hours here and there throughout the day as needed as I progressed. Eventually, I got an MPV setup going in a stationary location (my walk-in closet) and would take puffs as needed throughout the day as well. Needless to say, this proved unsustainable. Fast forward to now, where I find myself quite short of breath throughout the day, though never with a pulse ox below 96. There aren't any muscular dystrophy doctors in my area, so I have been running point on my respiratory treatment and basically just telling my local pulmonologist what I need.

Inevitably, a common cold it turned to bronchitis (though I fortunately avoided pneumonia) and I realized I needed to make some serious changes or die, so I immersed myself in Dr. Bach's ideas. Since then, I've ordered a kit to attach the MPV set up to my wheelchair so that I can use it several times per minute all day long and switched to Assist Control on the Trilogy at a volume of 1200, 10 breaths per minute, 1.5 seconds per breath overnight. Here's my issue: while, when it actually gives me volumes around 1200 to 1400, AC mode is great and lets me stack breaths really well, it becomes a monster every so often, especially as I'm falling asleep. I'm not sure whether I'm holding my breath a bit or not while I'm falling asleep and confusing the algorithm, but as it's happening, the pressure doubles to something around 60 cm and blasts me with two or three painful breaths well over 2 liters in volume and fills my glottis with air that I have to immediately burp out. Needless to say, this makes it very difficult to fall asleep, though my partner tells me that everything evens out and the AC mode works as advertised once I'm asleep. I wake up the next morning quite refreshed and with less shortness of breath, so I know it's an improvement, but it doesn't seem sustainable to me since I can only fall asleep with it running about 1/3 of the time.

My question is this: is there a ventilation mode that might work better for me (i.e. not randomly blasting me with 60+ cm of pressure at nearly 200% of my target volume every so often) but still provide me with the necessary volumes? AVAPS? PC? I like the idea of being able to set a max pressure because I'm a bit concerned about possible barotrauma.

Any help anyone can give me would be greatly appreciated.

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