Announcement

Collapse
No announcement yet.

Respiratory

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    Respiratory

    Well my respiratory appointment was good. Blood gas, co2 really good. Basically from oximetry when I go into dream sleep my oxygen dips and wakes me up.
    so only mild at the moment.

    Issued the nippy 4 which is tiny and comes with a battery. I've been given a tiny nebulizer also. All meaning I can get them on bedside table.

    The cough assist is bulky but seriously I've used it twice and its helping lots.

    Ellie your info on the humidifier is a great help thank you.

    I can understand now why some cannot tolerate n.i.v it is a weird sensation. I plan to build up over a few weeks.

    X
    Diagnosed May 2021 bulbar onset als.
    Tags: None
    • Likes 1
    #2
    That as good as one could hope for I guess...

    Which mask did you get? xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
    ​

    Comment

      #3
      Ellie its got words 'airfit f30' small and goes under nose and sits just under the lip.x
      Diagnosed May 2021 bulbar onset als.

      Comment

        #4
        shelly21 For me, those type win hands down for comfort, I love mine xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
        ​
        • Likes 1

        Comment

          #5
          That's good news shelly21​​​​​​, glad you've got some equipment that will hopefully help.
          • Likes 1

          Comment

            #6
            shelly21 - I hope you get on OK with it all. My latest CO2 was fine so all seems OK at the moment but I do feel NIV is something I need to start reading about and getting my head around, so your post has been really helpful, thanks x
            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
            • Likes 1

            Comment

              #7
              shelly21 Are you still happily using the Airfit F30, Shelly - any niggly or big issues with it?

              Philips have withdrawn some of their masks, including the wonderful Amara View which I use, or used, because there were 14 adverse events out of 17,000,000 masks 😱😱😱

              The strength magnets caused problems with pacemakers etc. but Resmed apparently uses lower strength magnets, so the Airfits are okay.

              It's really annoying that the vast majority of us have to suffer for the few... xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
              ​

              Comment

                #8
                Ellie they switch me to a full mask called f & p vitera. Its not great re when I need my reading glasses as no where to perch them on.

                I've still got the airfit on my 2nd daytime niv.
                X
                Diagnosed May 2021 bulbar onset als.
                • Likes 1

                Comment

                  #9
                  Thanks shelly21 They switched me to an F&P Evora mask, which is like the Airfit F30 and the Amara View, but it just doesn't fit my face properly - it's the smallest size, S-M, driving me nuts...

                  I wonder why you weren't given an Evora.

                  I'm thinking of asking Santa to bring me an Amara View - they're still available in Eastern Europe. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
                  ​
                  • Likes 1

                  Comment

                  Previous template Next
                  Working...
                  X