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tmasters

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Well, sort of... Help!

The RT came to my house this morning with my new Trilogy respirator. This has been in the works for 3 months so I was glad to see him.

"Mark, have you ever worked with a Trilogy before?"
"No."
"But you've been trained on it, right?"
"Oh, yeah."
"Are you familiar with ALS?"
"I had a patient once with ALS." Hmmm...

So he plugs it in and turns it on and immediately alarms go off (and it's LOUD) and air starts coming out. He can't figure out how to keep it quiet. He finally decides to not worry about it. My daughter is (was) sleeping upstairs. Sorry for the wakeup call sweetie, but it IS 11AM after all.

So in the midst of all this noise he gets the paperwork out that has the doctor's prescription and he isn't able to match up the settings terminology between what the Trilogy calls them and the prescription. He tries and tries for about 10 minutes and he starts to give up. I can tell he has no clue. He had lots of trouble just navigating the menus. I was actually pretty embarrassed for him.

Finally he just says "let's just try it" and tells me to put the mask on but there was hardly any air flow and it was difficult to breathe so he was trying to make adjustments but it wasn't helping.

Then he noticed the settings were actually for a different type of ventilator, not the Trilogy. This explains the terminology differences.

I was afraid he was going to leave and take the machine back with him. So I called the prescribing neuro's office. Speaker phone. He's out of town, but the nurse who runs the clinic repeats the settings we already have in the prescription. She says they have prescribed LOTS of Trilogy's and NEVER had a problem with an RT not being able to program it. What do we do? Well, she called one of the RT's that works in the clinic and that RT relayed some settings ranges that they typically use for ALS on the Trilogy

Anyway, he finally ended up setting it in "PC" mode (pressure control), with the settings I told him I'm using with my BIPAP. I could have done that.

My question is, for you Trilogy users, what mode are you using? Do you have separate day and night modes? Do you use sip-and-puff during the day?

I requested a different RT for my follow-up on Friday.

Thanks,
-Tom
 

Barbie

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Good Grief Tom! I hope the RT was embarrassed to be so imcompetent...probably didn't even realize.
 

momap53

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So many without a clue!
 

rose

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Amazing! but not in a good way. I hope things get sorted out on Friday.
 

brooksea

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Sorry, Tom. Wish I could help. Hope things go better on the follow-up visit from the new RT.
 

vlcare

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Tom: Trilogy is very sophisticated. My husband has used his for over a year (daytime use) in Pressure Control mode. At first, these were the settings: max IPaP 15; min IPap 12; EPap 4; I-time 1.2; sens 1.0; Rise 3; RAMP 5 min. A couple of months ago the settings were changed to IPap 17; EPap 7; Rate 1.

He still uses the Trilogy only during the day. They were not able set it up suitably for night time use after several tries. Instead, he continues to use the ResMed Bi-Pap at night because it has the humidifer atttached--very simple set up.

The Trilogy requires very qualified technicians. Good luck and don't give up until you are completely comfortable. My husband loves the freedom it gives him. Incidentally, he uses the Swift FX nasal pillows (Res Med) headgear as a rule. When he showers, we leave the Trilogy unplugged outside the shower and he uses the sip and puff mouthpiece, which makes it easy to wash his hair.

Hope this helps.

VL
 

halfin

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Tom - I've been using a Trilogy 100 for the last year. Now, I have a trache, but I still use it only at night. Basically the trache supplies a more secure and convenient connection than a mask.

Mostly I've been using ST mode, which supplies pressure support for my breathing, with a back-up breath on a timer if I stop breathing. But they set the timer at 4 breaths per minute! What's the point in that? Maybe that would keep me alive if I were in a coma, but it's certainly not enough for comfort.

I do stop breathing sometimes, sleep apnea, but the back-up timer hasn't activated. The reason is there's also an apnea alarm on the thing, and it goes off first and wakes me, and I make an effort to breath to shut the darn thing up. The alarm is very loud, even at its softest setting. Fran has actually gone to some trouble to muffle it. The speaker is on the bottom, so by setting the unit on something soft, it quiets it. Still it wakes me enough to take a breath.

I was worried and disturbed by all those episodes of apnea, so I recently switched to the other mode they had programmed, SIMV. I think this is similar to your PC mode.Also, I made them crank it up to 12 breaths per minute. This mode gives me a breath every 5 seconds. That is enough to silence the apnea alarm, hooray. But I don't really like the mode.It gives me a forceful breath every 5 seconds whether I need it or not. It follows my breathing, but what ends up happening is every other breath is given extra force. It's distracting, but I've learned to ignore it. I wonder who designs this stuff?

Our RT is better than yours, but we still have compaints. He is hard to reach and doesn't show up when promised. Luckily, our pulmonologist is very supportive and periodically yells at the RT. We have better service for a while afterward.

I don't think they fully understand the Trilogy. They maintained they couldn't silence the apnea alarm without getting rid of the back-up breath timer. And there are supposed to be monthly reports on my breathing. We've requested copies repeatedly, but no joy. Finally our pulmo confessed that he'd never successfully opened the attachments emailed by the RT. We've asked the RT to fax the documents instead. He insists that policy forbids him from providing the reports to anyone other than our doctor,

I asked the RT how my stats have changed over the last year, and he maintained off the top of his head that there had been no change. Well, I don't believe it. My progression has been dramatic in the past year. My breathing has held up surprisingly well, but I feel weaker there too.

I shouldn't have to be the one to point out these lapses and problems. But it's the same story everywhere, you have to take charge of your care.

Sorry, I got to ranting a bit. Tom, any other questions, I'll do my best to answer.
 
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