Moving forward with a Trilogy

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Barbie

Extremely helpful member
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Dec 29, 2007
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Lost a loved one
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01/2007
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Had an appt. with a pulmo today to discuss a trilogy. Really liked the guy--and next week we have the pulmonary function tests done and hopefully will be able to get a trilogy in the next couple of weeks.
 
Same with us Barbie . Pulmonary guy wants the trilogy because it has a battery back up in case the power goes out. My pals already has a bipap.
 
We recently switched from a ResMed S9 BiPAP to the Trilogy 100. For night sleeping, there is little difference (though we did prefer the heated hose and internal humidifier of the ResMed). During the day, however, being able to use the Trilogy on its battery for a couple of hours a day (we take it to work with us), makes it convenient to use. She's now using it about 2 hours in the afternoon while working (she watches Netflix) or while taking a break (she can now lean back and nap). She has found this to be a real bonus. It also has a "Sip & Puff" feature (not currently being used) that the ResMed did not have. When we went to the hospital for Darcey's PEG insertion, the Trilogy (operating on its 6 hour batteries) went in with her. Hope your PALS find it to be the help that we have...

Jim
 
Make sure you notify your power company just in case of power outages. Joe's vent had a 6 hour battery and a Marine Battery - I think 8 hours on that. We were put on a top priority list. First ones to get power back on. Our power company called me to confirm our status when a bad storm was headed our way. Impressed they were on top of things.

Debbie
 
Just one clarification to Jim's experience-- you can hot-swap your mask for a $5 mouthpiece to make any BiPAP "sip 'n' puff."
 
On our Trilogy, the Sip & Puff is on a separate "secondary" setting. That setting only has an IPAP setting (unlike BiPAP which has IPAP & EPAP). So I guess it would be considered more like a CPAP for the Sip & Puff use. And lgelb's $5 mouthpiece idea sounds like a great way to some extra use out of one's existing BiPAP technology!

Jim
 
got a call this afternoon--the supply company is coming out tomorrow morning to set us up! wow--that is fast service. we have not even had the PFTs done--that is next Thursday. I just hubby doesn't get frustrated and decide he won't use it after a couple of days.
 
My pals got his call today...they are coming on Monday. Kinda freaked him out when they called it a vent though:(
 
true dat vzandt
 
By definition a "sip 'n' puff" is one pressure only since you are breathing out against room air (no pressure from the machine). So there is less resistance than a typical EPAP of 3-4 would provide in BiPAP mode. That is good for some, not as much for others. And, of course, limited head and mouth mobility may mandate a mask.

The Trilogy and other combo vents can also set a different kind of second pressure -- "PEEP" -- air that keeps the lungs open at the very end of each breath -- and as disease progresses, may make breathing easier. The Trilogy and Astral offer more different possible circuit setups than BiPAP alone.

The vent guide has been updated recently and is always worth a look.
 
Laurie, I copied your sticky treatise on Ventilation, and gave it to the sleep center at Long Beach VA today. The person took it with a snort. They read the card out of my Respironics, and said it isn't working right. I assured them it is working very good. They will sked me with the Dr.
With your help, I am determined to educate them.

Thanks heaps.

GB
 
Graybeard,I hate to say it but its a losing battle if they dont have a clue about ALS. I would double check everything with clinic before you let them change anything.
 
Barbie, I am so glad you guys are getting a Trilogy. I hope your DH will be happy using it whenever he needs it. My DH was on a regular biPAP for about 3.5 years and then started complaining that there was something wrong with it. That is when our neuro said it was time for Trilogy and DH has been happy with it for a little more than a year now. He uses the machines only when he's lying down/sleeping, mostly.
 
The idea is that GB can adjust settings himself as he goes, like everyone should. We accept black boxes in areas we don't know (like in my case things like electrical wiring and plumbing) because the needs are relatively stable. We shouldn't accept them IMHO in areas that we know are changing and that we have the power to improve as change occurs, sometimes in a split second, like PALS' ventilation needs.
 
setup on the trilogy--last night used it in the evening for a couple of hours while we watched a movie (Lucy--very good!) . it went well, and then we went to bed. I refused to put it on him--I told him he has to get use to it first. The good news is he slept for almost 6 hours straight! I don't know if it had anything to do with it--but he has not had more than a 3 hour stretch for at least 3 weeks. he is on it now, while we watch tv and our plan is to increase the time until he can sleep with it at night.
 
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