fvc

  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. A

    I have to rule out ALS

    My story starts in Feb 2018. During an xray for shoulder pain they discovered my left diaphragm was elevated, but they didn't bother to tell me. They gave me painkillers for shoulder bursitis. I complained to my PCP in Sep 20108 of constipation. She ordered an abdominal CT scan that showed...
  4. J

    Brainstorm Nurown 'Right to Try' participant shares progress

    As some of you may know, Brainstorm granted one PALS free access to NurOwn as a 'thank you' for the work he did on Right to Try. He is not in a trial but is being given the course separately. His update is on Facebook -- matt.bellinski.7 Mod note -- not linking directly due to fundraising...
  5. 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...
  6. D

    Very low FVC

    How long can one survive with an FvC below 20%? (And no vent)
  7. 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...
  8. N

    what to do when...

    My PALS can't sip liquids or eat applesauce to get his pills down? I see him struggle now to suck the fluid through the straw and have asked the palliative nurse how he can take his meds if he can't swallow them this way and she said we just don't give them to him if they don't come in a...
  9. R

    Is this depression or something else

    My pals began a new behavior last week. She has been dealing with a lot of losses - speech, ability to swallow food, choking on pheglm etc. and started sleeping more and more. Sleeps 11 hours at night. Gets up and tries to drink a little coffee, goes to bathroom then gets back in bed. Family...
  10. Kristina1

    Getting bipap

    Update, they are ordering bipap for me now! Finally had that visit with pulmonary, supine fvc was 48%, down from 64% in June, so I won't have to argue with insurance after all. Oddly my upright fvc is unchanged and pretty good at 75%
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