Anybody Knowledgeable About the Trilogy Vent?

[Madalot]

If anybody here has any working knowledge of the Trilogy Ventilator and would be interested in trying to help answer a question for me, I would be most appreciative if you could drop me a Private Message.

I don't want to clog the board with it since most people here don't use this equipment.

Thanks in advance.

[jnk]

If anybody here has any working knowledge of the Trilogy Ventilator and would be interested in trying to help answer a question for me, I would be most appreciative if you could drop me a Private Message.

I don't want to clog the board with it since most people here don't use this equipment.

Thanks in advance.

You don't clog this board, any more than those cute cats clog that sink in your avatar.

Plenty of room for all, Madalot, and especially you.

[Madalot]

If anybody here has any working knowledge of the Trilogy Ventilator and would be interested in trying to help answer a question for me, I would be most appreciative if you could drop me a Private Message.

I don't want to clog the board with it since most people here don't use this equipment.

Thanks in advance.

You don't clog this board, any more than those cute cats clog that sink in your avatar.

Plenty of room for all, Madalot, and especially you.

You are very sweet. Thanks.

I feel that sometimes my questions about the ventilator are bothersome since most people here aren't familiar with it. I don't want to be a problem.

If I don't get any help privately, I'll post my question(s) here.

[BlackSpinner]

If anybody here has any working knowledge of the Trilogy Ventilator and would be interested in trying to help answer a question for me, I would be most appreciative if you could drop me a Private Message.

I don't want to clog the board with it since most people here don't use this equipment.

Thanks in advance.

When people have issues and questions there are usually several lurking hungering for the answer to the question they don't know how to ask. Besides we never know when or if we or someone we love might be in your shoes and need that info.

[Madalot]

Okay -- Here goes. I actually have two questions/concerns:

1) I have a hard time believing that I am about to say this, but I woke up last night and FELT as if the ventilator was not blowing at the inhale pressure when I inhaled. I realize that being in S/T mode will force an inhale after about 3-4 seconds, but I'm talking about when I initiate a breath. I inhaled/exhaled about 3 times and never felt the inhale pressure I am used to. I have been on this thing since February and this was the first time I felt this upon waking up during the night. Obviously, I am NOT positive and will try to be aware (I wake up a lot these days). After all that nonsense I went through with the bipap (this same thing being the first thing I noticed then) I'm a little freaked out at the thought that this could be happening again. My question is: is it possible that something has changed and now the ventilator is having trouble recognizing my breathing pattern? What would be the first thing we should look at and/or think about adjusting?

2) I have had a problem for years (on and off) with severe night terrors. I've had a few since I've been on the vent, but aside from being able to scream through my mask loud enough to wake up my husband, they haven't been much of a problem. The ventilator screen saver is set on black because I don't like the light shining in my room. It stays on for about 5-10 minutes, then goes dark. It stays dark until I get up in the morning and press the power button (twice because the first time disables the screen saver and the second time shuts the vent off). I had a serious/nasty night terror the other night, one of the worst I've had in a long time. It occurred about an hour after I went to bed -- I am positive about this. I was also facing AWAY from the vent when I woke up. After I calmed down from my fright, I realized the ventilator screen light was ON. I was still awake when it had turned off almost an hour before and I'm reasonably sure I hadn't turned it on myself. Could this night terror have caused my breathing to become so unusual that the vent tried to get our attention in some way? This has never happened before.

I don't feel like I really have anybody I can ask about this stuff. If I don't get any replies (which is okay) I think what I'll have to do is contact my DME and have him call the RT at Respironics for help. I don't like just sitting here and not looking into something that seems "off" to me.

[jnk]

Way out of my league and light-years outside my realm of experience. But I will still say that someone on a vent should ask questions of the RT in order to be mentally and emotionally comfortable with what the machine does, not just physically. So being vocal with questions is the right thing to do, IMO.

[DoriC]

Can you make direct contact with the RT at Respironics rather than the DME? You're the one who knows what questions to ask better than anyone. Hopefully you will just need a minor adjustment or it may have been an odd night that won't reoccur. Keep us posted and what's this "clogging" stuff?

[jnk]

. . . . and what's this "clogging" stuff?

Ah, now that I DO know something about, Dori. Maybe this will help: https://www.youtube.com/watch?v=iRtnCwsMwZA

[DoriC]

I knew before I even clicked on it that's what I'd see! Very entertaining, thank you!

[Madalot]

Can you make direct contact with the RT at Respironics rather than the DME? You're the one who knows what questions to ask better than anyone. Hopefully you will just need a minor adjustment or it may have been an odd night that won't reoccur. Keep us posted and what's this "clogging" stuff?

I was thinking the same thing, but I have no idea who to call. I remember the former RT at the DME saying she was calling her "go to" RT at Respironics. One time, she said she was going to have him call me directly, but he never did.

I'm going to have to go through my DME either way I think. If they decide to put me in touch with the RT from Respironics, that would be good, but I don't know how that will go.

I also sent my doctor overnight pulse ox reports from three different nights. She said if I was desating into the 80's, she wanted to see the reports. I haven't heard back from her on that yet.

I didn't notice any problem last night when I woke up during the night. I'm hoping it was just a freak thing and not the first indication of a problem. However, I don't want to let it go either after the situation with the bipap.

[ozij]

I'm glad you decided to ask you questions publicly -- BlackSpinner is right that the replies may help someone one day.

I wonder if you could try contacting Respironics, and asking them specifically to recommend an RT whom they know is knowledgeable in the Trilogy, in your part of the country. They do after all give courses, and must have a list of the people who took the courses successfuly.

I have no idea how your insurance works -- but wouldn't they too want you to be in contact with an RT who knows the machine you use? Could you ask them?

[Madalot]

I'm glad you decided to ask you questions publicly -- BlackSpinner is right that the replies may help someone one day.

I wonder if you could try contacting Respironics, and asking them specifically to recommend an RT whom they know is knowledgeable in the Trilogy, in your part of the country. They do after all give courses, and must have a list of the people who took the courses successfuly.

I have no idea how your insurance works -- but wouldn't they too want you to be in contact with an RT who knows the machine you use? Could you ask them?

I have a call into my DME now and I plan to outline it to them. I need to speak to somebody with in-depth knowledge about the Trilogy (which isn't their RT) and ask them to help me get someone (preferably at Respironics). If they refuse to help, I will call Respironics directly and start down that path.

If I am correct and the Trilogy was NOT changing to the IPAP on my inhales, it needs to be addressed NOW rather than waiting until it becomes serious.

Plus, I really would like to know about that night terror thing because I know that my breathing is heavy and erratic at that point because I wake up screaming at the top of my lungs and usually crying hysterically for a few minutes afterwards. The fact that the ventilator light was on indicates to me the vent was having some issues. Because we've turned all the alarms off, I have no way of knowing what the vent was seeing.

I'll post after I talk with my DME and see what they say.

[Madalot]

My DME just called me and I explained the situation. Basically, I'm starting to have questions/concerns about things that are happening and I need a knowledgeable RT (or person) that knows the Trilogy to help me. I don't want to wait until things become critical to address them. The RT they are using is nice, but she isn't familiar with the equipment.

I was talking with the Assistant to the owner of the DME. She is going to talk to him and have him get back to me later today. She agreed that we need a plan.

So, let's see how it goes from here. Cross your fingers.

[kim flowers]

Did you ever find out what was wrong?

[Madalot]

Did you ever find out what was wrong?

That was a long time ago and I've had so many problems/issues since then.

I know that I DID speak to a knowledgeable RT about this and was assured that the Trilogy can and does sense my breathing so there's no real liklihood that it wasn't switching to the inhale pressure. And I haven't really experienced that much since - or at least that I can recall.