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Have other people on forum declined to use a NIV?

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    #16
    You guys are as biased for as I am against. I'm not doing it because I don't want to extend this life I am currently living but also due to the fact that I appreciate a good night's sleep. πŸ‘β€οΈπŸ˜˜πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #17
      It's good to know the pros and cons.

      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.​​​​​​

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        #18
        Originally posted by matthew55 View Post
        You guys are as biased for as I am against.
        Not me - my only bias is that my peers get to choose their comforts. 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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          #19
          I have found after initial problems, I now find the Bipap I have fairly easy to use and I seem to have some more energy in the day. If I didn't have this gain, I wouldn't use it, only seems sensible if there is a clear gain, which it doesn't sound it is for you Mary. What sort of NIV machine do you use? x
          Diagnosed July 2020, ALS bulbar onset.

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            #20
            Thanks Mary, that cleared that up. Sometimes, it's best to do what you think is right and good for YOU. Glad to hear you have had better sleep since, it is sooo important.

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              #21
              Slept well last night minus NIV and with fan on.Woke up refreshed.Visitors coming today.Intend to enjoy the day..despite intense heat.
              Best wishes
              Mary

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                #22
                I have to have surgery soon, a serious condition but not related to mnd. My breathing is fine but they are being more cautious, but I do remember someone mentioning a link about oxygen etc and being aware??
                Of course my surgeon is going to talk to my mnd consultant etc, but I wanted to read up. Having said that, I need the surgery.

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                  #23
                  There was a discussion in the living with MND thread and Ellie kindly posted this:

                  ​​​​​​https://www.mndassociation.org/profe...mptoms-in-mnd/
                  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.​​​​​​

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                    #24
                    Good luck with whatever surgery it is Olivia. If given oxygen it can cause a dangerous level of CO2 building up in you. It’s good that your surgeon is going to speak with your neurologist. I hope that it all goes well for you. Love Lynne x
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

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                      #25
                      Olivia H
                      Hi Olivia,

                      I strongly suggest you talk to the anaesthetist regarding your surgery, often they are the most important person/role in the operating theatre.

                      I really hope your op, recovery and hospital stay go well.

                      Love Ellie.

                      ​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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                        #26
                        Thanks everyone. Yes Ellie, the surgeon is arranging for me to discuss with anaesthatist πŸ™‚ x

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                          #27
                          Olivia H Pleased to hear that. 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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                            #28
                            Stephen had a bipap sent by taxi yesterday. It's been set up in hope it's ok before hospital on Tuesday.

                            NO not wearing that! It's not right. I'm too hot.

                            after I'd spent ages dragging beds about trying to find electricity and somewhere to stand the machine and set it up. I nearly put an end to his breathing problems πŸ˜†
                            when i can think of something profound i will update this.

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                              #29
                              Hi Denise, I understand how your husband doesn’t want to wear it.I am speaking to respiratory team next week to establish what the consequences are likely to be if I continue not to use the NIV.
                              Maybe your husband will get used to it if he uses it daytimes first( As advised by Ellie).I did try to persevere but my sleep pattern deteriorated rather than improve.
                              best wishes
                              Mary

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                                #30
                                Back in Portugal he took to it quite quickly after a few gripes. Having a beautiful technician probably helped πŸ€” I thought he's going to be a pain in the bum. He's not going to like this. Wrong he was fine. I'm supposed to do an email exchange with consultant nurse on how to alter settings. This should be fun but he will have a new check over Tuesday and a new machine .
                                when i can think of something profound i will update this.

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