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Trilogy & Cough Assist Coming Tuesday

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KimT

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After a horrendously unsuccessful attempt with a company that has only one RT, I returned my BiPAP (medicare didn't even approve it because of a mix up with the RT's company), I have a Trilogy and Cough Assist coming on Tuesday.

This is from a new company. I'm still not optimistic but the regional rep did come to our local chapter meeting and arrange all the paperwork as well as coordinated with my doctor. I did nothing.

I hope he listens to me, keeps everything unlocked and lets me mess with it.

Thank God for Laurie.
 

GregK

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It's easy to unlock.
Google or Laurie can help.
 

chally

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I too am getting a trilogy. I am such a novice at all this stuff so I have some basic dumb questions,is it ok to post on this thread or should I start another?
 

GregK

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Considering the thread title and thinking of future searches, my vote would be this thread.

Does that work for you, Kim?
 

KimT

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Yes, I'd love to share info on this thread. I called the rep and told him to come the Tuesday after July 4th instead of tomorrow. I also talked to him about the first debacle and he said the doctor gave me plenty of room to adjust to my comfort. I will get it unlocked. I really don't need the cough assist but he said they approved it so I'm taking it.
 

KimT

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I too am getting a trilogy. I am such a novice at all this stuff so I have some basic dumb questions,is it ok to post on this thread or should I start another?
Chally, When is yours coming?
 

chally

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Hey Kim, it was ordered on Friday 24 th thru VA and was told maybe a week,we'll see.
Now I thought I was getting a bipap but when I got to the dr office he said no I needed the trilogy .
Now I really don't know much about either, like how they work or one from the other. I think I understand that both are to help get the CO2 out of my system. My breathing is going down hill
And I am tired and get headaches a lot.
Dr said between trilogy vs Astro he thinks trilogy is better and has been around longer,more experience.
I'll fill ya in when I git started love ya chally
 

GregK

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I think most of us use "bipap" and "trilogy" interchangably. Both are trademark names for bi-level positive airway pressure devices, ventilators.

The VA issued me a Trilogy, too.
 

KimT

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Trilogy is just a fancy BiPAP. It's been around awhile so lots of RTs have had experience with it. I bet it will help with your headaches and (especially) morning fatigue.

Let's stay in touch and work through it together.

I would also like Laurie (if she is willing) to post openly on this thread when we have questions. Our questions will help others and our experience will help others. We're in this together.
 

KimT

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Trilogies can also be used with a trach. Lower-level (price BiPAPS can't.) Not that I'm advocating that but one has the option.
 

BlueandGold

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Well Kim and Chally I wish you the best of luck with the trilogy.mi hope you get use to it quickly and it makes you feel better. I really do. As for me, I absolutely hate mine. Laurie was so helpful getting the settings tweaked so it wasn't blasting my cheeks full of air with each breath among other things. After trying just about every mask on the market, the only one I could tolerate was the Dreamwear mask. Just a sling under your nose with a swivel tube on top of your head that lets you sleep on your side.

I've been using mine for four months now. My FVC is 54%. The most I have been able to wear it at night is for about 4 hours. So, I'm lucky to get 3 hours sleep after I sling it off my head. I guess I'm just a big wuss but I hate it with a passion. I do ok if I wear it during the day while watching tv in my chair, but again no more than 3 to four hours and I don't notice any improvement in my energy. But then again even before I got it I didn't wake up with headaches just had to limit my physical activity. It's an alien to me and I don't think I can ever get used to the "mechanical" breathing.

Vince
 

soonerwife

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BlueandGold, my PALS is exactly the same way... Only makes it up to 4 hrs and doesn't like it at all. I keep encouraging him to keep trying but I know he hates it.
 

Nuts

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Matt's latest trial is with the Dreamwear. He can wear it while awake and watching TV, but manages to knock it off his face at night. This is his third (in addition to nasal pillows) and it has the least amount of leakage. FWIW, it's MY favorite :)

Chally, I'm delighted that the VA is getting you the Trilogy! The Durham VA won't---they provide the Astro. We use Matt's insurance now, and I guess once that ends he'll have Medicare and Tricare to cover it.

Becky
 

KimT

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Becky,
I think they are both good machines.
I'm holding my breath (figuratively, of course) that my BCBS Supplement will cover the monthly balance Medicare doesn't pay.
 

Buckhorn

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I have a personal interest in this thread, so yes, I too vote for the discussion to continue here. My PALS/Dave was set up with an urgent appt. with the pulmonary lab today. They did a full work up including blood gases, spirometry readings in sitting and lying down. Then he was put into this upright chamber in a sitting position, where they went thru 5 cycles of "normal breaths" followed closely by 3, quick panting breaths. I don't remember what this chamber was called, but Dave was seated inside it with a breathing mask (looked just like the mouthpiece they used with spirometry) and then they close the door to the "cylinder". It was only about an hour after testing that the nurse practitioner called. Dave's CO2 levels are high and there is a marked decline in his ability to breath when lying down (yep, we knew that!) as well as a decline in the regular spirometer readings since April. So, long story short here, the nurse practitioner is placing a call in for an "urgent" sleep study. Dave had been scheduled in late September ........ Not sure if all of you had to do a sleep study (in a supervised lab environment) or not? I was thinking maybe Medicare required this to authorize the Trilogy.....

I will follow this thread with much interest. BlueandGold, I'm sorry you hate your Trilogy (and Soonerwife, sorry for your PALS too). The way the respiratory therapist that attends our ALS clinics described it to us was that the Trilogy has more settings, and of course you can set it for "forced inhalation" to help to stretch the lungs out, since many PALS just cannot breathe deeply any more. And, if I understood correctly, the Trilogy can be fine-tuned better to help replicate the slower more shallow breaths that most people with a normally functioning diaphragm and intercostal (ribcage) muscles take after falling asleep. I'm hoping that whatever machine Dave gets that he feels better overall from the increased oxygen saturation levels. He is tired all the time and his scary night-time breathing is freaking me out! I hope most of the PALS who get a BiPap or Trilogy see some improvement in their life.
 
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