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    Respiratory failure

    It’s amazing how quickly you can go from needing NIV at night to needing it full time. I can’t really last more than 5 minutes without now. Just as well I now have one ventilator upstairs and one downstairs 😟😀
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

    #2
    PeterPan that must be very hard on your mental health. I've just started my niv journey. I love your blog by the way.
    Diagnosed May 2021 bulbar onset als.

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      #3
      PeterPan - how are you feeling about that? So far I am avoiding it totally, but my time will come.

      I suppose if it helps you be more comfortable or to continue with activities then maybe it feels positive. I just hope you are OK xx
      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!

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        #4
        I’m completely with you peterpan! Shocked by how much I need it now. What a good idea to have 2 machines!! I’ll get on to my hospital. Good luck! X

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          #5
          Originally posted by TinyLady View Post
          PeterPan - how are you feeling about that?
          We can strap the ventilator onto the back of my power chair, but inevitably having to be attached permanently is limiting. It certainly makes communication more difficult too. On the other hand (and I’m not depressed or morbid about this) there is now the option of my asking for NIV to be withdrawn and having a way out - at the right time. Sorry to be blunt!
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

          Comment


            #6
            Originally posted by Sarahw View Post
            I’m completely with you peterpan! Shocked by how much I need it now. What a good idea to have 2 machines
            The National Hospital at Queen Square suggested having a spare in case one malfunctions. I would be in serious trouble if that happened
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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              #7
              PeterPan I hear ya 😟 Thank goodness for NIV, eh. Have you 2 masks also?

              Peter, I know I'm a bore about this but, if you ever think you have a sudden or unexplained decrease in respiratory function, get a doc to listen to your chest.

              That reminds me: last time a doc listened to my chest, he told me to "take a breath in", so I did insofar as I could.
              Pregnant pause: "take a breath in" he said again. I was leaning forward and not in sight of my eye gaze to type, "that's what my breathing in is like" 😏 He removed the stethoscope,I typed, he cleared his throat and declared, "well, you have a strong heartbeat..." I hasten to add that he wasn't my usual doctor.

              ​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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                #8
                Ellie Yep, two masks (generous hospital!). The decline happened over about three weeks and the respiratory team are aware. Glad to hear your heart is still strong ❤️😀
                Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                  #9
                  PeterPan - no worries about being blunt. I appreciate your honesty. I'm here to learn, to share support and to feel part of a community who actually understand

                  If it gives you options when the time comes then I also understand that. Fingers crossed you find ways to adapt quickly. Hugs 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!

                  Comment


                    #10
                    PeterPan “On the other hand (and I’m not depressed or morbid about this) there is now the option of my asking for NIV to be withdrawn and having a way out - at the right time. Sorry to be blunt!”

                    I agree with you. , a comforting thought as my breathing deteriorates,
                    a feeling of some possible control over things x
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      #11
                      I am also glad to be hearing others talking about the options of withdrawal. We have such little control over each new decline. But we have control when it really matters. We need to be open and realistic on the chats. So thanks girls and guys x
                      Diagnosed May 2021 bulbar onset als.

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                        #12
                        I am too as we have so little control over the decline in this dreadful disease.

                        I am not on Niv yet but have it on my ADRT that I don't want to be on it 24 hours a day.

                        You are not being blunt PeterPan but in the absence of Assisted Dying it allows me some comfort that I can control things when the time comes x
                        Diagnosed 3rd November 2021 Bulbar Onset

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                          #13
                          I was told at diagnosis that I had ‘options’ if my breathing deteriorated. It is the one thing that gives me some comfort. Thankfully I am not yet on NIV but I do know I shall need it one day. x
                          Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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                            #14
                            PeterPan sorry your needing the extra NIV during the day but glad it is helping you. I think my husband will need to use his second machine during the day too soon.

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                            • Yes, my friend. There is an out, Peter.

                              Life sure is tough.

                              My breathing stabilised to the point of not being an issue for me.

                              I find it is a matter of descending to the next level when trying to find comfort. It may take some time. Hopefully you can get an excellent professional quickly.

                              All the best.

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