trilogy

  1. K

    Thoughts on When to Get Hospice

    My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is...
  2. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  3. D

    Trilogy in Hospice??

    I recall seeing a couple of posts saying hospice is not a possibility if one is on a BiPAP or CPAP. Is that correct.
  4. ReginaS

    breathing difficulties

    Hi all, My PALS describes that he has the feeling that the air passages in his head (above throat) are not staying open but collapse or close when his head is in certain positions. Do you know what is happening? He is uncomfortable lying down, elevated lying on one side is OK - on the other...
  5. chally

    Dry eye

    Does anyone have this issue? The perfect storm of atropine (mucus) Benadryl (sleep) our heating system, learning how to stay hydrated with feeding tube plus slight air leak of my trilogy mask going right to my eyes. Another sh*t storm side adventure to the nightmare. I use lots of eye drops...
  6. Jamesgol

    How much Trilogy?

    I've had a Trilogy 100 for a month, even though I have no problems breathing. When they tested me a month ago, I was at 90 and 64. But they kept having me blow over and over until I finally blew one under 50, which qualified me for the Trilogy. The RT came to my home and setup the Trilogy. She...
  7. K

    Air Hunger When Laying on Left Side

    My PALS is on Trilogy for about 12 hours at night and another 4 during the day. On two occasions, he has had difficulty breathing on his left side at night while on the machine. The first time it took about 30 minutes of sitting up to recover but last night it was longer. Our RT recommended...
  8. K

    FVC at diagnosis and progression rate

    My mom’s FVC was 50% during her initial respiratory evaluation at the ALS Clinic at Mayo. Because of this, she is not a candidate for any clinical trials. She will be receiving a cough assist and trilogy. Does her diminished pulmonary function indicate ALS progression is aggressive? She is...
  9. K

    Also...Slow or Fast Progression?

    Karen, I must admit I am wondering the same thing...slow, fast, average? I know today is a gift, we should live each day and day by day, but my wondering has to do with decisions that need to be made. My PALS was diagnosed in January 2018 with symptoms becoming very noticeable in August 2017...
  10. JimInVA

    Shifting Sands...

    Our journey began at a Joe Bonamassa concert in November of 2012. With no advance warning, Darcey was suddenly having difficulty walking. Later that same night, she'd be unable to rise from a seated position. It was the beginning of a life phase that neither of us anticipated. For all of...
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