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    Well early doors a nurse notices my bed is completely soaking. I hadn't noticed. I ended up with a fresh bed and hospital pajamas. I have been on constant fluids and I was peeing a lot during the night but no one checked my bag until 6am. Good start πŸ˜˜πŸ˜πŸ˜πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Oh dear.Hope you get sorted and back home soon.
    Best wishes
    Mary

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      #3
      Hope things progress better now Matthew x
      Diagnosed July 2020, ALS bulbar onset.

      Comment


        #4
        They are letting me back my Prozac so all forgiven πŸ˜˜πŸ˜πŸ˜πŸ€— xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

        Comment


          #5
          Originally posted by matthew55 View Post
          Well early doors a nurse notices my bed is completely soaking. I hadn't noticed. I ended up with a fresh bed and hospital pajamas. I have been on constant fluids and I was peeing a lot during the night but no one checked my bag until 6am. Good start πŸ˜˜πŸ˜πŸ˜πŸ€—xx
          Tell them you're doing research for CQC I guarantee no urine bag left unemptiedπŸ˜‰πŸ˜…
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

          Comment


            #6
            It's not a bag you need, it's a bucket πŸ˜‚πŸ˜‚

            Good news re Prozac 😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            ​

            Comment


              #7
              Day three and I finally ask for an air mattress 😘😁😍😁 xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #8
                Good you are getting all the gear to keep you comfortable.
                Best wishes
                Mary

                Comment


                  #9
                  Originally posted by matthew55 View Post
                  Day three and I finally ask for an air mattress 😘😁😍😁 xx
                  Not like you to be shy and retiring πŸ˜‰ did you get one? xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    #10
                    Yes and very quickly πŸ€—πŸ˜˜πŸ˜πŸ˜ xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                    Comment


                      #11
                      With your pee problem you could have asked for a water bed

                      πŸ˜‚

                      Comment


                        #12
                        I always forget but what's that stuff we have to use instead of oxygen?
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                        Comment


                          #13
                          If you mean what to we breathe in if using NIV, that is just room air - is that the context of your question, or do they want to give you oxygen? xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

                          Comment


                            #14
                            They want to give me oxygen
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                            Comment


                              #15
                              NO!! DO NOT LET THEM.

                              because your respiratory muscles are weak, how you process oxygen is inefficient and you will retain too much carbon dioxide., that is dangerous.

                              Sometimes, using a very low volume of O2 is just about OK provided it is used in conjunction with NIV, and your CO2 levels are constantly monitored.

                              If they saw your Sats were a bit low, maybe 93-94%, and suggest using oxygen to get you up to 99%, that is not how ALS respiratory failure is treated. NIV is the only 'treatment'. xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

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