Progressive use of the Trilogy bi-pap

[Roger4143]

My wife uses the Trilogy about 12 hours a night and then about 2 hours with an afternoon nap. Her last FVC test score was 25. Is there a “normal or expected” progression of needing to spend more time on the Trilogy? I saw on one post that the pals was on the Trilogy 24 hours a day. Can that be sustained or is the next decision one involving invasive breathing support?

 

[wishmobbing]

Just increase the use of bipap according to how she feels. There are many PALS using the mask close to 24 hours.
Invasive breathing is not automatically following step.

 

[lgelb]

It varies, but many PALS end up spending all or most time on BiPAP, and that may be sustained for months or years.

Because the FVC only measures the strength of certain muscles, there is not a linear relationship between the FVC and how many hours on BiPAP, nor does the FVC decline predictably stepwise. SVC and MEP are better indicators of respiratory impairment if they are decreasing, but still not strictly prognostic.

 

[Chincoteaguer]

This whole thing about using the BPAP (Trilogy 100) has me baffled. My wife has been using the machine for over 3 months but on a limited basis. 2 or 3 hrs a day at the most. Some days not at all. She has no noticeable problem breathing without it which makes it hard to convince her to use it.

I have heard that using the machine may improve quality of life, help her live longer, is therapy for the diaphragm, and other things.

Is there a blurb that I can access that discuss these things?

 

[lgelb]

Ernie, if she doesn't need it, she shouldn't use it. However, if she doesn't feel better with it/after it, that could be due either to where she is in terms of lung function (post the PFTs if you like), or settings that are not quite right. It's worth knowing which.

All the benefits you listed relate to the "if she needs it" scenario, not just for PALS generally.

 

[Chincoteaguer]

Needed that Laurie. Thanks.

When using the Trilogy my wife's quality of life actually decreases. She wants to use it because her clinic doctor wanted her to reach 4 hours per day usage.

Why would he want that?

Beats the starch out of me.

 

[Roger4143]

Thanks for the insightful comments. I get the feeling that ALS Clinic personnel avoid the questions we have about what happens at end of life. Maybe not. Maybe it is because they don’t know how an individual will move through phases. My wife and I have both completed Physician Directives etc. and decided no invasive ventilation is desired. Discussion led to questions about if and when 100% Trilogy is not enough, then what does that mean. There is apparently some threshold when the doctor puts you on end of life palliative care, but what happens then?

 

[azgirl]

I have reached the point of twenty four hour trilogy. This can extend for a long time, or not. Since I have opted for no tracheostomy or vent, this is I. Although I don't plan to check out soon, I began hospice. My plan is to ease out peacefully when the time comes, using morphine to make it not as scary. Having hospice nurse on hand gives me peace of mind.
I'm still enjoying life, getting out a bit. Just want to be ready with MY exit plan when it's time!

 

[Roger4143]

So helpful and meaningful coming from a PALS point of view. Thank you. Thank you. How do you accommodate the restrictions of a 24 hour dependence on the Trilogy? What was your “glide path” to getting to the 24 hour dependence - the slope over time of needing more from the Trilogy?

 

[bkite]

Over the past year I have been using my Trilogy ventilator 24/7. I have the machine mounted on the back of my wheelchair and go for walks and van outings to parks and visit my son's family and who live in with 4 precious grandchildren.

I use a lightweight hybrid mask when up and switch to a regular FFM when napping or sleeping the night in bed. The hybrid mask doesn't interfere with my eye control of my Tobii I12 that I depend upon for communication.

My quality of life is great. Here's a reassuring article...

Noninvasive Ventilation Prolongs Life if Used Right, MDA Clinic Director Says | MDA/ALS Newsmagazine

 

[lgelb]

Ernie,

The doc may be going on an outmoded view of "getting used" to the Trilogy. I would not worry about her reaching any particular threshold if she's more comfortable without it -- that's just silly. But if she has any breathing shortfalls off it, then it would be time to talk settings.

Roger, there may not be a glide path. My husband went from using BiPAP at night to almost all the time virtually overnight. The move from "almost all" the time to "all the time" was more gradual.

Best,
Laurie

 

[azgirl]

trilogy hangs on back of my wheelchair and goes where I do! The question you ask about slide varies for each of us. I went from night only almost three years ago. Then added nap time, then nap to bedtime. And finally all day. I knew when I needed more time on bipap and added gradually over time.

 

[affected]

Roger, while it really helps when PALS relate their own paths and timelines, it isn't something any of us can say will apply to any other PALS. I know this is one of the many most frustrating aspects of this monster.

I have just had two PALS friends, in the period of the last two weeks, pass suddenly when breathing issues had appeared to be minimal.

Having your PALs living will clearly state their wishes is probably the critical thing, then working with your health team to meet those wishes, as you adjust to whatever progression happens in what order.

Even as I type I know that sounds wishy washy, but the only one thing I have learned is predictable about this disease is how unpredictable it is. Your clinic are not trying to avoid answering you - they will have seen so many more variations on what may happen at the end than just the hundreds I have known.

 

[Orloppig77]

My dad started with Trilogy just at night and progressed to full-time use. For a while, he could go up to a few minutes at a time (during showers) without the mask, but now can't go more than 15 seconds or so without it.

He decided against invasive (tracheotomy) ventilation, but it's hard to say which would have been better. We have to rotate through three different masks - two during the day and a different one at night - to avoid pressure sores and skin irritation.

He uses an eye tracker to control his computer, but isn't always able to operate it very well. Some days he can't even blink properly. We worry about what happens when he's no longer able to communicate with us at all.

The studies I've read seem to suggest that the average survival is around 300 days after starting full-time noninvasive ventilation. Does anyone have any experience with this or aware of any other literature?

His hope was to go peacefully, but I worry about what will happen when/if he's no longer able to communicate.

 

[KarenNWendyn]

This thread has been helpful to me, especially seeing it from the perspective of Bruce and Arizona gal, who use Trilogy 24/7 and still get out and about with their wheelchairs.

I wanted to address Ernie’s (Chincoteaguer) concern: “She has no noticeable problem breathing without it which makes it hard to convince her to use it.”

I decided early on against invasive ventilation. When it came to deciding whether I would accept BiPAP/ Trilogy, I chose to accept it when needed because it is noninvasive and can improve my quality of life as well as conserve energy related to work of breathing.

I also read somewhere that some PALS without it would panic as their respiratory muscles failed and would feel as if they were suffocating, sometimes even fearing to go to sleep. Then I read that this sense of panic could be mitigated by noninvasive ventilation. That had me convinced.

I recently started BiPAP at least 4 hours a night, mainly to see if it would help headaches, but also to reduce work of breathing. I don’t really feel I need it at this point. I have noticed, that when the mask is sealing properly and everything is set up right, that there is a calming effect. There is also something reassuring about knowing that the thing will kick in a breath if I stop breathing for a bit. It does take a while to get used to the mask. Overall, I’m seeing the concept as friendly.