Classic Bi-Pap vs Trilogy 100

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maryhahnward

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Joined
Jun 17, 2009
Messages
445
Reason
CALS
Diagnosis
06/2010
Country
US
State
NC
City
Wilmington
We were at the ALS Clinic yesterday and the team suggested to my husband that he use the Trilogy 100 instead of the bi-pap he has been using for a little more than a year. They said that people with ALS tend to live longer with this kind of machine rather than the one he was using.

They also stated that he wouldn't need to have adjustments made to it because it is more efficient than what he has. Right now his setting is just a little too high and we would have to trek 3 hours up to the VA to get it adjusted or mail it in hoping the sim card doesn't get lost so he lives with it the way it is. The clinic staff said the Trilogy 100 would eliminate the need for these adjustments.

It is pretty expensive, $2500 a month, which they said Medicare would pay for and the VA will not.

Thoughts on one versus the other?
 
Trilogy is portable. That is one of the biggest benefits. It has been a godsend for us.
 
Hey Mary!
Are you kiddin'... $2500 A MONTH?!?!? I was told the same thing at the same clinic last month, and it has been 'ordered' since then. I had no idea what the cost was going to be, but this amount is prohibitive. Hell, I just paid for the bi-pap 13 months ago!

I guess maybe I ought to look into Medicare too... never gave it any thought before.

Tell Tom I said "Hey"
Jeff
 
Mary;
Tim has both a VPAP and a Trilogy 100 which were both supplied by the VA. He uses his VPAP at night with a full face mask and the sip&puff Trilogy during the day. We do love his Trilogy and it can be programmed to do the same as the VPAP and is designed not to alarm as often as other ventilators when used in the sip&puff mode. The VA bought ours for us because we are in Canada, and I am totally responsible for its maintenance and settings. In the US they rent it for you, and the company that they rent from are on contract to take care of it. Maybe you need to contact the PVA and get them on board with you. Also lgelb is extremely helpful in instructing how you can adjust the settings for your bipap yourself, and I think that it is very important that a CALS can do that.

Paulette
 
Jeff you must be one of the veterans it was ordered for and it feel into the black hole of the Prosthetics department. Doc said he ordered it for 2 veterans who have yet to receive it. We said order Tom's and let's fight this one. We are having a problem with this department with Tom's service dog as well. It isn't right that some veterans get what they need from some VA's but not all VA's....that's got to stop.

Thank you for the info Paulette. I'm not sure the PVA can help inside for something like this since they are more on the VBA side of things. I have some contacts I can tap into including one of our senators who is on the committee for Veteran's Affairs. Tom's bi-pap is pretty portable. Our interest in the Trilogy 100 is that it will adjust to his needs without having to have a sim card programmed. I hope it gives him some comfort sleeping at night he has an awful time with the masks fitting properly. I'll report back on how this works for him and if I can yank some chains in the VA.

Jeff say 'hey' to your lovely lady...you'll have to come for a beach day soon.
 
Mary;
I am a bit confused, are you talking about using a Trilogy 100 with a tracheostomy, or non-invasive ventilation. If you are talking about non-invasive, he will still need to use a mask. My husband did use nasal pillows for awhile, with a chin strap that stopped him from opening his mouth, but once the pressure had to be increased to a certain point the air just blew out through his teeth and lips. We had to try at least 7 masks before we found one that he was comfortable with. In the end I found that if I made a gasket out of a micro cloth like the finer used to clean glasses, it stopped the leaks, and he no longer got any sores at all. It is not the sim card that is programmed, it is the bipap or the Trilogy. The sim card just lets you know about leaks, and panic periods, whether he is experiencing obstructive apnea or central apnea. It is not a detriment to have a sim card, and lgelb actually told me how to down load a program to read the sim card on my computer. I access the main controls and can make adjustments myself. I had to get quite assertive to have the RT teach me how to get into the bipap and make adjustments (although I actually went on line and figured it out for myself.) The trilogy also has internal settings that need to be programmed according to the PALS needs, so I am not sure what the clinic is telling you.
We also found talking to the ALS social worker at the VA Tim deals with was helpful, as well as the respirologist, and physiatrist that was following him. The more people you contact the better, as they say the squeaky wheel gets the grease.

Paulette
 
Thank you Paulette, I am talking about the non invasive ventilation Trilogy 100. When I think about it, it makes sense that it isn't the sim card they are adjusting but rather the bi pap itself. Tom won't be able to use he nasal pillows as his mouth drops open when he sleeps. I'll try your suggestion about the gasket that might help him.

The clinic was telling us the Trilogy has to be adjusted but with the same frequency as the bi pap, nor is the Trilogy the same in terms of forced pressure like the bi pap.

Maybe we were sold a bunch of hokey bull on this one, I don't know.

The social worker who did a lot for Tom has changed jobs. She helped us get all of the paperwork together for his service dog and even that didn't help. It feel into a black hole over there. She was great. It's to figure out who his new is and get them on board.
 
I got a call from the respiratory therapy org today. Medicare doesn't exactly pay for the whole thing. They pay 80% of the monthly cost and then you can apply for a hardship waiver for the other 20%. My husband has Medicare Blue Advantage, not straight Medicare, so doesn't qualify for the hardship waiver. I can't get him off of the Medicare Advantage until open enrollment in the fall. I sure wish these clinic people would get their ducks in a row when they tell you about equipment and such. The 20% is pretty pricey.
 
Mary, you might also check on other suppliers that accept your insurance. I have to pay 10 percent, that comes out to 110 a month. Simle math comes to a little over a thousand that my supplier is charging. Sounds like the supplier they are referring you to may be trying to stick it to you
 
It's a shame that on top of being ill, we have to deal with all this insurance #$%%, I just signed up with a Blue Cross Plan that says they will cover my trilogy. I got a letter stating that SC will cover my medicare premium but today I got another letter stating that medicare part B will cost me over 100 a month, this is such a mess, by the time I get it figure out, I'll be gone.
 
I'm sorry you are going through this Janie. I agree, ALS does not wait for bureaucracy, and PALS are the ones that suffer.
 
I have been using the Trilogy 100 for three years now. I believe it is part of the reason I on my 6th year with ALS. It is rented but not purchased by medicare or standard insurance. Costs around $15,000 to buy not including required maintenance. Sometimes insurance will fight you but if your MD helps they will supply it. When I went on hospice several hospice companies refused to supply it over a regular bipap (purely money no matter what they say). My respiratory company accepts Medicare's payment and doesn't charge copay. Even if they do charge the copay once you meet your max yearly out of pocket they will pay 100%. If you find a good respiratory company you will be very happy. If if it is supplied by a large national company that starts with A good luck. It will run up to 6 hours if you have internal and optional replaceable battery. It is portable but weighs 11 pounds.
 
I'm a happy user of the Trilogy as well. I like that I can change the settings on my own. That has come in very helpful when I've been congested with junk in my chest. Plus it can be used as a ventilator for a tracheotomy which was my original plan, so I would not have to learn a different machine. And it portable for going out.
 
Re Medicare Advantage equipment copays: you should have an annual OOP max whether it is a lease or buy situation. The OOP max should actually be less for an MA plan than traditional Medicare.

Re the "sim card" -- Paulette is right, you are in control of your own settings, not a card; and whatever machine you have, that holds true. If a RT tries to "prescribe via card" and lock you out of the settings menu, simply state that you feel more comfortable, since ALS is a progressive and terminal disease, having full access.

So as not to be tied to antiquated software, if you have a S9 or PR series machine, you should download Sleepyhead (available for the 3 major OS; there are a couple more models it handles, and some oximeters as well). Once you really understand the data minute by minute, hour by hour, you're in a much better position to adjust the settings as you go.

It is true that if you plan a trach later, why not get used to the Trilogy in advance...but for others, a BiPAP with or without a backup rate, with or without volume control (iVAPs or AVAPS) depending on your needs, is fine and has all the same features...except that they do not come w/ batteries, though packs are available. Also, as Paulette noted, if you want to use sip 'n' puff mode, the Trilogy accommodates that. Regular BiPAPs can be jury-rigged that way but it's not exactly the same.

Maybe your current BiPAP does not have a backup rate and/or VAPS mode, and that is why your clinic recommended the Trilogy. My point is, you don't have to jump up to the Trilogy to get those things. Bear in mind that RTs receive ... financial consideration, shall we say, for big ticket DME orders, even rentals, which are _extremely lucrative for the DME firms including the big A...it works many ways.

For a mask to try, I continue to recommend trying the Circadiance Sleepweaver nasal mask esp. if you are a back sleeper or need a mask for daytime.
 
If you are used to a nasal mask but need full face, I have been happy with the"Hybrid"mask. It is a nasal but also covers the mouth. It comes with 3 different sizes all in one pack so make sure that is what you get. The Liberty mask is similar, comes with 1 size. You can see them at cpap dot com.
 
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