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    #31
    Hi Dina
    How are you doing. I am sure you will be fine and soon be back home. Thinking of you.
    Love Sheila

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      #32
      You may have a nose only mask as well for the PEG trials/procedure

      Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

      Good luck

      Comment


        #33
        Hi Dina,

        In a way no notice of your admission was good, it eliminated days of potential stress of an iminent stay. And I'm glad that bed didn't become available last Friday

        For the NIV machine, please be aware that the best mode setting for those of us with ALS/MND is pressure support mode, because it lessens the 'Work of Breathing' effort most of all on our respiratory muscles which, after all, is the purpose of NIV!

        Our lungs are not damaged, our muscles are, so we are different to those with chronic lung conditions, which not every healthcare professional gets

        Best wishes for your stay and for the sleep study.

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

        Comment


          #34
          Hi Dani,

          1 am, you must have got that time wrong. Nobody phones at that time unless they are in trouble. Crazy and ambulance transport sounds about right.

          As Ellie says, it stopped you worrying much. Please LISTEN to what Ellie says and also get all the settings, modes, times and write comments on each.

          Also record any information, especially blood Co2 and O levels.

          Great advice from Douglas and see if he has any more tips.

          Hope you are comfortable, etc.

          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


            #35
            Originally posted by Dis1960 View Post
            You may have a nose only mask as well for the PEG trials/procedure

            Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

            Good luck
            Thanks for that, Douglas.
            Dina

            Trying to keep positive, but not always managing.

            Comment


              #36
              Hi Ellie,

              I was quite looking forward to the stay as it has given my partner a break from his usual caring role. I had already told the consultant that I wouldn't be admitted until this week as my granddaughter's visit took precedence! Heaven help anyone who is fool enough to try and prevent this Nana from cuddles with her Cherub!

              I think the pressure support mode is the one I've been on today. They said the other mode is what I would have to be on during the PEG procedure.

              I was impressed with the consultant who came to see me today. He respected my stated choice of not wanting to use NIV during the day, in the future. Some of the medical staff have seemed to question why I would have it at night but not during the daytime. Well, that's their problem, not mine.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                #37
                [QUOTE=Terry;91371]"Hi Dani,"

                Hey Terry,
                Do you have Dani Minogue on your mind? I thought you'd prefer her blonde sister - Kylie! LOL

                Love Kayleigh x
                Last edited by Kayleigh; 31 July 2019, 17:36.

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                  #38
                  Hi Dina,

                  It good to hear from you and I'm glad you have got a good Consultant. Hopefully the nurses are making sure you are comfortable and you have everything you need.

                  Love Kayleigh xx
                  Last edited by Kayleigh; 2 August 2019, 12:11.

                  Comment


                    #39
                    Hi Dina;

                    Sorry about getting your name wrong. LOL.

                    Originally posted by Gillette View Post
                    Some of the medical staff have seemed to question why I would have it at night but not during the daytime. .
                    Some of the staff maybe don't know a lot about MND and breathing. I think that trying it out in the day time is good till you get it set up and then it's your choice. Most Mnd people seem to get their breathing troubles at night to begin with and not while they are awake in the day time.

                    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


                      #40
                      Originally posted by Terry View Post
                      Hi Dina;

                      Sorry about getting your name wrong. LOL.

                      Love Terry
                      It was probably the fault of 'predictive text' - it can be so annoying when a word we type automatically changes to a different word than we wanted it to be!

                      It can happen to any of us Telly .... oops, I mean Terry. (But If you ever refer to me as Kylie rather than Kayleigh - I'll know it's because you are daydreaming about those Minogue sisters again!) LOL

                      Love and hugs,
                      Kayleigh x
                      Last edited by Kayleigh; 2 August 2019, 12:12.

                      Comment


                        #41
                        Originally posted by Terry View Post
                        Hi Dina;

                        Sorry about getting your name wrong. LOL.

                        Love Terry
                        That's OK, Terry. I apologise as I had no idea you had dyslexia.

                        As for daytime use of NIV, it was simply part of the discussion about use of NIV. Some medics seem to think that once patients start using it they will continue to the bitter end, ramping up to daytime use as and when the breathing deteriorates to the point where it is needed. I have said that, at the moment, I don't see daytime use as an option suitable for you. Obviously, it's possible I will change my mind at the time.
                        Last edited by Gillette; 1 August 2019, 19:25.
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          #42
                          I had a useful session with the specialist nurse today about the NIV.

                          I managed to use it for 4 hours last night, which I thought was pretty good, especially considering how things had been in the evening. This afternoon I had a practice with the IPAP at 10, up from 8 last night. We have organised what the settings will be tonight. The IPAP will start at 8 and be increased to 10 a little while later.

                          This morning my CO2 level was 6.5 and O2 was 10.6.
                          Dina

                          Trying to keep positive, but not always managing.

                          Comment


                            #43
                            That's great news Dina, congrats on doing 4hrs.

                            What type of mask did you use? It must have been pretty comfortable - no leaks or skin marks?

                            I'm sure it was explained to you that your CO2 is a tad high, so hopefully with the IPAT at 10 and if you manage a few more hours on NIV tonight, that will come down.

                            Did you feel the machine worked in sync with your breathing and nothing felt forced ​once you relaxed into it?

                            I hope the rest of your admission goes as well.

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

                            Comment


                              #44
                              Hello Dina.
                              Hubby has been on ventilation for over a year now. We do put on dressings on his nose and gel strips on his neck. All to stop the straps digging in.
                              During the day he has an identical machine on different settings. He uses this with a mouth piece, a bit like sucking on a pipe. It's quite unobtrusive and the machine hangs on the back of his electric wheelchair. He just uses it now and then when he's headachy or tired. All to get rid of the Co2.
                              Better than sitting with a mask on during the day.
                              Anyhow hope all goes well.

                              Comment


                                #45
                                Originally posted by Ellie View Post
                                That's great news Dina, congrats on doing 4hrs.

                                What type of mask did you use? It must have been pretty comfortable - no leaks or skin marks?

                                I'm sure it was explained to you that your CO2 is a tad high, so hopefully with the IPAT at 10 and if you manage a few more hours on NIV tonight, that will come down.

                                Did you feel the machine worked in sync with your breathing and nothing felt forced ​once you relaxed into it?

                                I hope the rest of your admission goes as well.

                                Love Ellie.
                                Thanks, Ellie. I was pretty pleased that I had managed 4 hours. Mind you, I had asked them to wake me to put the mask on and when it was done I fell back to sleep immediately. Consequently, I wasn't aware of it at all! The mask is called a full-face mask and covers the mouth and nose. I tried the nose-only mask but didn't like it much. However, I have asked to have more practice with it in readiness for my PEG insertion.

                                The specialist nurse explained what all the readings are and explained about the consequences of the CO2 being above 6.
                                Dina

                                Trying to keep positive, but not always managing.

                                Comment

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