Announcement

Collapse
No announcement yet.

NIV assessment today

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    NIV assessment today

    Good Morning
    Off to hospital today to get the NIV to assist with overnight breathing.I didn’t realise I had a problem breathing at night until asked to wear a monitor by the respiratory team.
    It was a bit if a shock.This last week or two I am coughing more .
    So I need to keep positive and see it as a support.Let’s hope I get used to the mask wearing .
    Next in mid June comes the PEG fitting.I still can eat and drink but noticing subtle changes with my swallow.( bread harder to swallow).Apparently “the palliative care team” think it’s better to get this fitted ahead of needing it.

    Oh well has to be done...Inwill let you know how I get on.
    Best wishes
    Mary

    #2
    Good luck Mary. I hope that it goes well and the NIV helps a lot. 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.

    Comment


      #3
      All the very best for today Mary. Whenever we talked about possibly getting any new equipment I always told Ann all we were doing was adding to our tool box just in case we ever needed it. Some of it we didn’t use like the suction machine but we were comforted that it was sat ready even if all I did was dust it every week 😁

      Comment


        #4
        Best wishes Mary. Hope problem-free x

        Comment


          #5
          Thanks for kind wishes.Good way to look at things Phil.
          Kind Regards
          Mary

          Comment


            #6
            Hope all goes smoothly today for you Mary,

            Thank you for keeping us updated. A huge well done to you for getting these things sorted in advance... something I'm not good at !!!

            Love Debbie x

            Comment


              #7
              Good luck Mary. I will be interested to hear how you get on as I have an appointment on Monday for same reason! Never a dull moment eh?!

              Comment


                #8
                thinking of you mary. hope it goes well.

                love denise xxx

                Comment


                  #9
                  All the best Mary, thinking of you.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Originally posted by Sarahw View Post
                    Good luck Mary. I will be interested to hear how you get on as I have an appointment on Monday for same reason! Never a dull moment eh?!
                    Good luck for an easy and successful experience on Monday Sarah, 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.

                    Comment


                      #11
                      Sarah

                      Good luck from me

                      love and hugs Denise xxx

                      Comment


                        #12
                        All the best to you Mary x
                        Janette x

                        Comment


                          #13
                          Best of luck to you Mary. Stick with it through thick and thin my girl. 👍😍x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            Hi All ,
                            well the respiratory team at Walsgrave Hospital Coventry were excellent and went through the whole process offering reassurance and ongoing support if needed.So plan is to wear NIV mask for a few hours in daytime to get used to it before wearing it all night.Got a humidifier fitted with it as I get dry mouth.Mask fits under nose and over mouth with magnetic fasteners.
                            Good lunch Sarahw with your NIV fitting.
                            Thanks for your Good wishes
                            Mary

                            Comment


                              #15
                              Well done Mary. Really pleased you had a positive experiance

                              Comment

                              Working...
                              X