Trilogy

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SKlocinski

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Mar 14, 2016
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88
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Lost a loved one
Diagnosis
02/2016
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SC
City
Summerville
Tom's trilogy is being delivered Wednesday. Anyone have any suggestions for questions I should ask or things I should check before the respiratory therapist who is setting it up leaves?
 
Ask the RT if he/she has had any experience with ALS patients. If not, then the settings will not be calibrated correctly. Be prepared to reach out to Laurie (lgelb). She is our resident expert and has helped so many of us with our settings. Also, it may take some time to get accustomed to it. I would suggest wearing it for an hour or two during the day while watching TV. Ease into it. For some of us it takes quite a long time to get used to sleeping with it. There are also many, many types of masks. Try them all and make sure you find the one that is most comfortable.

Best of luck!

Vince
 
SK, I'm happy to help at any time. I would ask about the data card -- ensure there is one and that the machine is writing to the card before the RT leaves. Make sure the humidifier is putting out heat/humidification and as with any appliance, listen that the motor is smooth -- that no one dropped your machine in transit, and that it has clean filters installed.

Make sure his face is measured for the mask size. We can also try a mouthpiece later if he prefers that during the day.

As Vince says, the initial settings are seldom ideal so expect some tweaking.

Since spring is in the air, allow me to also remind all that you do not have to suffer with the wrong mask. cpap.com is offering many right now with free return insurance if you don't like it. And, of course, if anyone is dissatisfied with their settings (defined as not getting a good night's sleep and/or feeling that something is amiss), please let me know. BiPAP is most valuable, like any tool, when used optimally.

Best,
Laurie
 
Ask the RT if he/she has had any experience with ALS patients. If not, then the settings will not be calibrated correctly. Be prepared to reach out to Laurie (lgelb). She is our resident expert and has helped so many of us with our settings. Also, it may take some time to get accustomed to it. I would suggest wearing it for an hour or two during the day while watching TV. Ease into it. For some of us it takes quite a long time to get used to sleeping with it. There are also many, many types of masks. Try them all and make sure you find the one that is most comfortable.

Best of luck!

Vince

I thought the same about the ALS experience. Tom has already said that he wants to "play with it" in the daytime before he tries sleeping with it. I am somewhat concerned about the mask as it pertains to his mouth hanging open when he sleeps as well as drooling at night
 
Thanks for the offer of help Laurie. Tom is not very patient with these types of things (this is NOT a result of ALS...he has always been that way) and I am afraid he might just say he's not going to use it if he perceives it to be "too much trouble". His PCP prescribed an antidepressant and he took it once, said it made him feel funny and would not take it again even though she told him up front that at first he might feel "not quite right" but that it would likely wear off. So I'm hoping he doesn't take that route with the Trilogy!
 
I use a Trilogy, I was like Tom, didn't use it for a while, felt horrible to me. Got used to it to a point that I like it on for naps now too. Hopefully you will have someone competent enough to set the settings correctly for him - might take a few tries. It travels well, I went to Hawaii, took mine on the plane. It has internal batteries. Make sure to get extra filters, depending on a lot of things you might need to change them more often. You pop it off and if its gray colored change it. went to Hawaii never needed to change it - went to Mexico, changed it three times - both places were very nice hotels. I buy 20 at a time on Amazon, they are inexpensive, plus the provider should give you enough. Just leave it near the bed - he'll get over it.
 
What they wound up bringing was not a Trilogy but an Astral 150. So far Tom has used it a for a while during the day. He has it downstairs by his lounge chair. When he's ready to try sleeping with it, we will take it upstairs. I'm guessing that one of these days he will put it on and fall asleep in his chair and that will be the catalyst for him to try it at night. The respiratory therapist said she has several ALS patients and will be back at the end of next week to see how Tom is doing. Now I just have to see if when we switch over to the VA from MUSC we can get them to pay for a "non-invasive ventilator" as opposed to a "bi-pap". The respiratory therapist didn't know whether the VA will pay for it but she gave me the phone number of someone who knows both Medicare and VA really well. I read somewhere that VA will not pay for it but it wasn't anything official from VA. We have two VA appointments coming up in the next couple of weeks - a PCP and the ALS Clinic so I will ask them.
 
SK,
The VA will most definitely provide a BiPap. In fact they'll provide two, one as a live spare.

They had a local provider issue me the Trilogy.
 
SK, the Astral is actually, just as is the Trilogy, an "NIV" that has BiPAP modes and can also support a trach if/as desired (which would be "IV.") So you haven't missed out on anything.
 
The VA ALS clinic lady called me today to let me know they got the medical records I sent her so I asked her and they said yes the VA will pay for it so that is good since VA is free and Medicare is not, although the respiratory therapist said we could most likely get a "hardship exemption" to pay our portion. She said she has never seen anyone not get it
 
Before the VA benefits kicked in, we were paying copays over $3k a month for 2 trilogy machines, and a cough assist. I filed for the hardship exemption and paid $30 a month instead.
 
SK, are you working directly with the VA?

If so, you'd be much better served if you let the PVA, paralyzed veterans of America, do the legwork.

Much better.
 
SK, are you working directly with the VA?

If so, you'd be much better served if you let the PVA, paralyzed veterans of America, do the legwork.

Much better.

We are just now transitioning to the VA. Benefits were just awarded in April. First PCP visit next week and the VA ALS clinic the week after. The VA ALS clinic has scheduled Tom for a fitting for a power wheel chair immediately after the ALS clinic. They seem to be very helpful so far even though we haven't even had our first appointment yet. I think the fact that the MUSC ALS clinic contacted them to get things expedited is helping. Some of the doctors from MUSC work for the VA as well so they kind of work hand in hand. Tom is fighting me on the power wheelchair though....doesn't need it, nowhere to put it, etc. He does still walk, although it fatigues him tremendously. I think we should get it and then when he needs it we will have it. I guess I will just have to work on him until he agrees that I am right as usual!
 
Before the VA benefits kicked in, we were paying copays over $3k a month for 2 trilogy machines, and a cough assist. I filed for the hardship exemption and paid $30 a month instead.

Tom has medicare so our portion would be between $200 and $300 a month. I don't know what it would be with the hardship exemption. But with the VA it is free and the VA so far seems less picky about what they will pay for and when than Medicare
 
SKlocinski would you mind going into your User CP (control panel) and adding the date of diagnosis. I forget so many details so it really helps me when I read a post to see all those little bits filled in :)
 
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