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    District Nurses re catheter

    I got the catheter. First nurse couldn’t manage so called another. She did my blood pressure: ok; did my oxygen and pulse: ok; temperature: ok. She said that she can see that I’ve still got a range of movement. She’s coming back next Monday with a tap to add at end of catheter tube so don’t have to wear a bag when go out. She’s also bringing barrier cream for me to apply to avoid bed sores. We’ll now have more freedom to go visiting and days out xx
    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.

    #2
    Happy weeing girl. 🎉👍👀xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #3
      Originally posted by matthew55 View Post
      Happy weeing girl. 🎉👍👀xx
      😂 thanks xx
      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


        #4
        Lynne K
        Sounds like catheter will be a help.Hope you can get out more.
        Best wishes
        Maryx

        Comment


          #5
          Lynne K glad to hear it went well....now you can keep well hydrated without worry 😉👍🏻😇😘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

          Comment


            #6
            That's great Lynne K Does it feel comfortable so far?

            No more worrying about not being able to get to a loo 👍👍👍🤗😘
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Originally posted by Ellie View Post
              That's great Lynne K Does it feel comfortable so far?

              No more worrying about not being able to get to a loo 👍👍👍🤗😘
              It’s not bad Ellie. I just feel like I’m need to pee all of the time but I’ll probably get used to that.

              The bag is strapped to my leg near to my knee so that the plastic tap thing and bit of bag comes below my dress. It’d be embarrassing but I got Steve to get out one of my late scarves (a soft cotton or rayon , off white with purple and green butterflies on, it’s my favourite) to put over my knees.

              I can check to a shorter tube so that the bag sits underneath my dress but they were saying that it could be uncomfortable with parts of the tube that stick out slipping between my upper legs. But I’m going to ask next Monday. Nothing ventured nothing gained xx
              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


                #8
                I sometimes forget I have one and feel myself going, for a brief moment of panic. 😬🤪😆😁xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  Originally posted by matthew55 View Post
                  I sometimes forget I have one and feel myself going, for a brief moment of panic. 😬🤪😆😁xx
                  I see 😘😌😄 xx
                  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


                    #10
                    Yes, it'll be a learning curve for you Lynne.

                    You can try the higher bag and, if it doesn't work out, go back to the lower bag - or maybe have spares of each type so, if you were going out, use the above-knee bag? xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Originally posted by Ellie View Post
                      Yes, it'll be a learning curve for you Lynne.

                      You can try the higher bag and, if it doesn't work out, go back to the lower bag - or maybe have spares of each type so, if you were going out, use the above-knee bag? xx
                      No Ellie, they’re bring a tap device so no bag when go out and Steve has to empty my bladder minimally every two hours but maybe sooner to avoid infections xx
                      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


                        #12
                        Originally posted by Lynne K View Post
                        they’re bring a tap device so no bag when go out
                        Oh I see 👍👍
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Originally posted by Ellie View Post

                          Oh I see 👍👍
                          Xx
                          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


                            #14
                            Hope it really helps Lynne, and frees you up for more going out xx
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment


                              #15
                              Hope it helps you Lynne 😘 I must sort mine out soon 👍 xx
                              Janette x

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