Trilogy Encouragement and Tips

Jimi

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Jim please don't stop sharing no matter that someone tries to correct you - you still have the right to tell us what has worked for you and it is very valuable. Sometimes this happens here - we understand.
You have years of important experience and I value your input 💗
Thanks. I'm too sensitive sometimes. I just want people to share their tips with no worries. Some day some weird out of the box idea might be just what I need and I would hate to miss it because someone is afraid to post
 

Doglady

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I always appreciate your input Jim. Each of us needs so many different ways to adapt to our individual journeys that it’s nice to hear about creative ideas that have worked for others. Even if we don’t adopt a particular one ourselves it might give hint at something else to try.

I have tried nose pillows and a full face mask but now use the same one Jimi uses, the Phillips DreamWear mask. I can’t stand the ones where the tube connects in front of your face. The options with the tube on top of your head feel less clostrophobic to me.

Im surprised at your medical suppliers rigid attitude about your mother needing a full face mask unless she breaths through her mouth while sleeping. Otherwise she should be able to choose whatever style she likes.
 

Jimi

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Thank you so much for everyone's advice and encouragement! We were told that she HAD to use a face mask that covers her nose and mouth by the Trilogy representative that comes out to the house. Seems like we need to do a little more research and push back on this. She has said that she thought she would feel much differently with a mask that only covered the nose. She gets really congested when we use the humidifier as well. I think it will just be a little trial and error to figure out the balance between the humidifier helping with the dryness without creating congestion. I think we will also try the ointment in her nostrils to see if that will help with the dryness. The encouragement was really helpful! My mother loved listening to the posts and made her feel more assured that we will get this worked out.

Jim, I also agree that I really appreciate your post! I can see why you felt upset, but please know that I thought the way you worded things was perfect, and it was clear to me that you were just sharing your experience, not telling us to do the same thing. I hope you keep sharing your experience with others because I know it was very helpful to my mom and I. :)
Thanks for saying that. Please be careful, but know that you can find a way to be comfortable
 

Jimi

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I always appreciate your input Jim. Each of us needs so many different ways to adapt to our individual journeys that it’s nice to hear about creative ideas that have worked for others. Even if we don’t adopt a particular one ourselves it might give hint at something else to try.

I have tried nose pillows and a full face mask but now use the same one Jimi uses, the Phillips DreamWear mask. I can’t stand the ones where the tube connects in front of your face. The options with the tube on top of your head feel less clostrophobic to me.

Im surprised at your medical suppliers rigid attitude about your mother needing a full face mask unless she breaths through her mouth while sleeping. Otherwise she should be able to choose whatever style she likes.
Thanks. You get it ! More ideas are good. You never know where it will lead....
 

KarenNWendyn

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Jimi, I watched the video you provided on the Dreamwear nasal mask (that guy is a hoot!). It sounds like you’re able to use that mask with relatively high IPAP. I’m a mouth breather when I sleep so am pretty much stuck with a full face mask at night. I use a similar Dreamwear mask that goes under my nostrils and also covers my mouth. But I would love to consider the type of mask you use if / when I need BiPAP during the day. My RT told me I couldn’t use a nasal mask with “high” pressures (IPAP over 12). Sounds like they’re wrong?
 

lgelb

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Karen, it's absolutely not true that there's a threshold for nasal mask use. There are also many different nasal mask designs, not just pillows or over the bridge. As I mention frequently, if your DME is not into sequential mask trials or limits selections (often due to contracts, etc.), cpap.com and other sites offer free return insurance for many masks, or it can even be worth buying it [the return insurance] in cases where they don't.

Jimi, I never said there were typical pressure/sensitivity/cycle/backup settings. That's why I help many people titrate theirs, and preach it's not "set and forget."

But sorry to say, in part from those many contacts, I know that some people here would not understand why they should not change to your settings, which could literally blow out their lungs (pneumothorax), esp. since you mixed them in with some good general advice, and I have seen it happen. I will err on the side of safety.

Swapping ideas is indeed very valuable, which is why we all try to (1) curate ideas instead of allowing miracle cures (not that BiPAP is that!) and to (2) post the options and caveats so no one has to worry about "is this dangerous." But when (2) would be a longer paragraph than the idea itself, that is a sign that it should have some surgery.

Since settings are individualized, I'm not sure why you would be upset that I deleted yours unless you wanted people to try them, which takes us back to the danger part.

So, always renewing my offer to help anyone titrate their settings to comfort/effectiveness 1x1 as it should be.

Best,
Laurie
 
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Jimi

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Karen,
I understand the mouth breathing issue. That is how I ended up with the tape/chin strap. I believe that the nasal mask is rated up to 20 ipap, and I have no leak issues at 21. I think that I am approaching the highest level of pressure that I will ever require. It even sealed at 27. Now because my life is dependent on the mask, If I am ever alone I have a backup air system available that I can activate and reach
 

Jimi

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Jim, I never said there were typical pressure/sensitivity/cycle/backup settings. That's why I help many people titrate theirs, and preach it's not "set and forget."

But sorry to say, in part from those many contacts, I know that some people here would not understand why they should not change to your settings, which could literally blow out their lungs (pneumothorax), and I have seen it happen. I will err on the side of safety.

Best,
Laurie
I understand what you are saying. That was the reason for my clarification of "works for me" Perhaps I'm giving people too much credit with the ability to think for themselves. With this in mind, if the user is unable to communicate or reach out for help, then by all means shove a full face mask on and be as safe as possible. For those able to articulate issues and wake up if there's a problem, then there is plenty of room for comfort/improvement.
 

Jimi

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Jim, I never said there were typical pressure/sensitivity/cycle/backup settings. That's why I help many people titrate theirs, and preach it's not "set and forget."

But sorry to say, in part from those many contacts, I know that some people here would not understand why they should not change to your settings, which could literally blow out their lungs (pneumothorax), and I have seen it happen. I will err on the side of safety.

Swapping ideas is indeed very valuable, which is why we all try to (1) curate ideas instead of allowing miracle cures (not that BiPAP is that!) and to (2) post the options and caveats so no one has to worry about "is this dangerous." But when (2) would be a longer paragraph than the idea itself, that is a sign that it should have some surgery.

Since settings are individualized, I'm not sure why you would be upset that I deleted yours unless you wanted people to try them, which takes us back to the danger part.

So, always renewing my offer to help anyone titrate their settings to comfort/effectiveness 1x1 as it should be.

Best,
Laurie
My intention was to give an example of what works for me. I had a great amount of fear as I kept getting weaker and weaker with my breathing. What is the pressure limit for NIV? Nobody was giving me actual numbers. If they had, it would have given piece of mind that it was still possible to use NIV for a while. Instead, I just winged it. I never shared the info expecting someone to use the same settings and clearly said so. I would love to know what settings others have used, what mask, what method to achieve comfort. Doesn't mean I am going to set my trilogy to a wrong pressure, tape my mouth shut while my nose is stuffed, run the humidifier when I don't need it, all because of what I read online ...
 

Jimi

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Laurie,
Can you give me an idea of the limit of pressure for non invasive ventilation? I would find it useful for myself. It would help me figure out when I might expect to suffocate. Or, it may help me decide to quit eating and speaking and get trached and vented. I don't know if I even want to do that. Real numbers and details are helpful to me..... Of course I know everyone is different, but gathering specific details from others going thru this is useful to me. Or perhaps sharing numbers and experiences would be too dangerous for my own good?
 

blitzc

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My mother has been using her Trilogy machine for the last three weeks. I think we finally found a mask that works for her. However, she is having some struggles. Any insight or encouragement for the follow concerns would be appreciated.
I would like to offer my experience and help to "ejb" and her mother.

I believe it took me at least 6 weeks before I could sleep with my Trilogy for 3 hours. I now sleep 8-10 hours each night after 7 months. The journey has been long but full of encouragement from my RT and pulmonologist. So be patient and don't worry about it being perfect right away.

I struggled with the mouth/nose mask so switched to nose pillows right away. It is easier for me to put on and take off by myself, although getting harder due to loss of hand function. I was a mouth breather as well and had to retrain my brain to keep my mouth closed with a tight chin strap. I had to find the right chin strap too.

I also experience dry nostrils and nose bleeds, I now use saline spray during the day and petroleum jelly on my sore, scabby nostrils in the morning. Within hours dryness has subsided.

My settings have changed several times to get it right/comfortable initially and then several weeks ago as my lung function has diminished. Discussions with my RT weekly have helped to make the changes necessary in order for my usage to become and remain beneficial.

Best wishes to you both. Keep checking back!
 

KarenNWendyn

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Cathy you might want to look into the Phillips Dreamwear nasal mask that Jimi references in the video on the previous page. It has a slit that fits under the nostrils instead of the nose pillows. There is also a Dreamwear full face mask which also has a slit that sits under the nostrils and the rest of the mask covers your mouth. These avoid the problem of sore scabby nostrils.
 

lgelb

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Jimi,
There is no practical "limit" apart from the machine's capabilities, and titration to safe and effective settings for a given person. That statement would apply to both IPAP max and Vt, as well as other settings that help you make the most of those.

Think of your lungs as a balloon that someone keeps inflating and deflating. Some balloons start and stay stiff and can't hold as much air as others. Others get stretched over time but if you fill them too full, they'll pop. Others can stretch very thin, even though old, and hold more air as they age. It's not the greatest metaphor but it does relate a little to the fact that PALS of the same height, weight and build will often have very different air volume/pressure needs and capacities (which, of course, are not the same).

I do feel compelled to note in the context of your question, that PALS are often titrated too high initially, as well as too low, and unfortunately that can have permanent consequences in terms of hypercapnia and over-stretching the balloon.

You might be interested in the works of Dr. John Bach, who practices on the theory that NIV can sustain most PALS indefinitely if used correctly. I also appreciate his pointing out that up to a given loss of mobility, some PALS do well on daytime mouthpiece ventilation (all you need is a 15mm mouthpiece that you attach to the hose instead of the mask) instead of needing a mask when awake. And I agree with the "indefinitely" paradigm that you are asking about philosophically (though we probably would titrate differently), but his clinical work of course does not address the quality of life that life extension entails.

Of course, any reasonable person would agree that whatever you titrate up/down to as you go (many PALS' needs change as progression, unfortunately, continues), regardless as to whether you have passed some RT or pulmonologist's imagined high or low limit, is the right choice for you. PALS here have run into both, which is one of the reasons we would both recommend that everyone know how to adjust the machine(s) themselves.

Best,
Laurie
 

Jimi

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Thanks Laurie. Yes, I agree with the caution of going over or under pressure. I have spent a lot of time with just enough air and only upped the pressure when necessary. At my current level, I believe that I can be comfortable even when what little force I have left to breathe is gone. I find this very comforting 😀 I will look Dr Bach up. Thanks for the information
 

Jimi

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Jimi,
There is no practical "limit" apart from the machine's capabilities, and titration to safe and effective settings for a given person. That statement would apply to both IPAP max and Vt, as well as other settings that help you make the most of those.

Think of your lungs as a balloon that someone keeps inflating and deflating. Some balloons start and stay stiff and can't hold as much air as others. Others get stretched over time but if you fill them too full, they'll pop. Others can stretch very thin, even though old, and hold more air as they age. It's not the greatest metaphor but it does relate a little to the fact that PALS of the same height, weight and build will often have very different air volume/pressure needs and capacities (which, of course, are not the same).

I do feel compelled to note in the context of your question, that PALS are often titrated too high initially, as well as too low, and unfortunately that can have permanent consequences in terms of hypercapnia and over-stretching the balloon.

You might be interested in the works of Dr. John Bach, who practices on the theory that NIV can sustain most PALS indefinitely if used correctly. I also appreciate his pointing out that up to a given loss of mobility, some PALS do well on daytime mouthpiece ventilation (all you need is a 15mm mouthpiece that you attach to the hose instead of the mask) instead of needing a mask when awake. And I agree with the "indefinitely" paradigm that you are asking about philosophically (though we probably would titrate differently), but his clinical work of course does not address the quality of life that life extension entails.

Of course, any reasonable person would agree that whatever you titrate up/down to as you go (many PALS' needs change as progression, unfortunately, continues), regardless as to whether you have passed some RT or pulmonologist's imagined high or low limit, is the right choice for you. PALS here have run into both, which is one of the reasons we would both recommend that everyone know how to adjust the machine(s) themselves.

Best,
Laurie
The RT who initially set the cough assist and trilogy for me didn't think the pressure was unreasonable considering the fact that I cannot breathe on my own almost completely. I would be interested in what people who never go on a vent finally level off at with NIV.
 
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