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    #46
    Hi Dina,

    Well done and it's nice if you don't have to use it much during the day time as communication is not so easy. I have not let dislextica stop me from doing things but it is hard. I used to spell the same word three different ways in two sentences. I use a talking machine and that doesn't have any spell check, it does try to say some strange things.

    I have not heard or seen the mouth piece that looks like a pipe, maybe you could post a picture of it.

    Hope you are comfortable.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

    Comment


      #47
      Originally posted by Terry View Post
      Hi Dina,

      I have not heard or seen the mouth piece that looks like a pipe, maybe you could post a picture of

      Love Terry
      I think it was Music Man's Wife who mentioned a pipe, Terry.
      Dina

      Trying to keep positive, but not always managing.

      Comment


        #48
        Thanks Dina;

        I should have put her name on that bit.

        How are you coping in there?

        Our road is closed for a couple of weeks down in the village, so I can go along it safely in my wheelchair later maybe. The village is about a mile away.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

        Comment


          #49
          Hi all,

          I managed about 7 hours last night and my CO2 level was down to 5.5 - brilliant, or what?!?

          This afternoon, the specialist nurse is due to train my partner and a friend how to put on and remove the mask. Apparently there is something else they need to do before I can be discharged home but It should be early next week.
          Dina

          Trying to keep positive, but not always managing.

          Comment


            #50
            Hi Dina,

            That’s great news that you can tolerate the mask overnight and a significant improvement in your CO2 levels. Although as yet I have no serious breathing issues, my neurologist at Sheffield is always promoting how effective the system is in terms of quality and extension to life.

            I hope you are back home soon and able to resume normality.

            Barry x
            I’m going to do this even if it kills me!

            Comment


              #51
              Originally posted by Barry52 View Post
              Hi Dina,

              That’s great news that you can tolerate the mask overnight and a significant improvement in your CO2 levels. Although as yet I have no serious breathing issues, my neurologist at Sheffield is always promoting how effective the system is in terms of quality and extension to life.

              I hope you are back home soon and able to resume normality.

              Barry x
              Thanks, Barry. I must admit to being the teensiest bit proud of myself!

              Today they have changed me from a full face mask to a nasal one because I cannot remove the mask, myself. It makes sense but makes me feel like one of those silly photos where people give themselves ears and a silly nose.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #52
                Hi Dina;

                Brilliant, or what?

                That's good and do you feel more energized today?

                I would have thought that they would send you home and free up beds and staff.

                Take home different masks if they offer.

                Love Terry
                TB once said that "The forum is still the best source for friendship and information."

                It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                Comment


                  #53
                  Hi Dina,

                  That's brilliant and you should feel very, very proud of yourself ! Well done for tolerating the mask for so long, so soon. I cant imagine it is easy to get used to.

                  Hope you get home soon,
                  Love Debbie x

                  Comment


                    #54
                    Hi Dina,

                    It's great that you are doing so well with the NIV equipment and your CO2 levels have improved.

                    I hope the training session went well this afternoon - it must be very re-assuring to have a partner and a friend who are both willing and available to help.

                    Well done! - its great you have already become confident and comfortable using NIV.

                    Love Kayleigh x
                    Last edited by Kayleigh; 2 August 2019, 20:50.

                    Comment


                      #55
                      Hi Dina,

                      I am so relieved you got someone who knew how to set you up on the BiPAP / Nippy properly - believe it or not, this isn't always the case !!

                      You see, it works your CO2 levels are within normal range now, woohoo !!

                      I'm of the same thinking as Terry re the masks - try and bring home the full face one as well as the nasal pillows, particularly as you found the full face type more comfortable.

                      If you're like me, 99% of the time, the mask goes on me at bedtime and comes off in the morning without incidence - the 1% is usually when the straps are too loose and trigger the alarm due to air leaking. Sometimes the straps seem OK when put on but if you turn your head a certain way, even a mildly loose strap can cause air to leak.

                      You'll find out quickly enough that it's best just to use the quick release clamp to put on the mask and remove it and not to touch the adjustable straps, so the straps are set correctly and don't need adjusting every night. (My carers know to leave the strap settings alone when washing them!)

                      Hope your partner is enjoying some 'me time'.

                      Love Ellie.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #56
                        Hi Terry,

                        I think Music Man uses a 'Sip Vent' with his BiPAP during the day. (I knew a man who used one) I hope MMW will correct me if this is not the case.

                        They look like this, though they probably come in various sizes:

                        Sip Vent.jpg


                        Love Ellie.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                        Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #57
                          Originally posted by Ellie View Post
                          Hi Terry,

                          I think Music Man uses a 'Sip Vent' with his BiPAP during the day. (I knew a man who used one) I hope MMW will correct me if this is not the case.

                          They look like this, though they probably come in various sizes:

                          [ATTACH=CONFIG]1052[/ATTACH]


                          Love Ellie.
                          That's the one! It's great for during the day as hubby doesn't have to have the mask on. Like I said its fairly unobtrusive and as the ventilator is portable and runs on batteries you can go out and about with it.
                          Thanks for finding that Ellie.

                          Comment


                            #58
                            Thanks Ellie, Kayleigh, Deb and Terry,

                            I have asked if I may take both masks although I know they would prefer me to use the nasal one. It does make sense for me to use the nasal one as I regularly have bouts of nausea and vomiting during the night.

                            My partner is coming in for more training on Monday. If it goes well then I should be good to go home so I'm keeping my fingers crossed. Staff are a bit concerned about how he will manage the ventilator.
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              #59
                              Hi Dina. I hope that everything goes well with your procedures and Peter's learning. I know nothing about either about ventilations or bipap/nippys
                              . Take care, Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

                              Comment


                                #60
                                Originally posted by Lynne K View Post
                                Hi Dina. I hope that everything goes well with your procedures and Peter's learning. I know nothing about either about ventilations or bipap/nippys
                                . Take care, Lynne
                                Thanks, Lynne.
                                Dina

                                Trying to keep positive, but not always managing.

                                Comment

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