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    #16
    Oh Ellie, you are a real gem, thank you,
    Next instalment, ended up in a lot of pain and started bypassing it, District nurse came out and suspected it wasn’t positioned correctly, what a drama, hope it lasts the night, eeek

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      #17
      Oh no Hayls ! That's awful and so unfair, when you have brave enough to have this done .

      Hope you're more comfortable today and that they have been able to sort this out for you.

      Love and hugs,
      Debbie x

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        #18
        Aww thank you Debbie,
        Much more comfortable thank you, I’m now flowing freely and can sit forward, wohoo

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          #19
          Oh that's a big improvement Hayls!!

          Although it's less of a woohoo and more of a wheeee

          Thanks for being our test dummy and I know you'll give us the real facts, warts & all!

          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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            #20
            Ellie I hope that your husband realises just how lucky he is. 😉x

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              #21
              Just in case you think I'm being forward I'm not honest. I gave up on the opposite sex long before I got the sneaky MND.

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                #22
                Update, never under estimate the risks, oh my!
                First catheter ended up being completely replaced due to Bypass problems and ended up with a UTI with attitude!!
                I now have a new catheter and it fits perfectly but Just finished a weeks worth of antibiotics, no UTI and no antibiotics in my system and I’m feeling like me again, positive, determined and ready for some fun and for the next challenge, plus we get our WAV on Tuesday and don’t need to worry about needing a tinkle

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                  #23
                  Hayls, smashing that you’re now over the UTI and that you have a WAV coming. What is it? Shame about this pandemic we can’t go where we want to yet. But I hope that like us you are keeping yourself busy in whatever way that you can, and having a little fun now and again. Love Lynne x
                  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.

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                    #24
                    I can’t speak for anybody else Mathew but I didn’t think that you were being forward. Nor am I by the way. It’s nice sometimes to banter when things that we’re talking about aren’t serious or sad. How’s the new house now? Love Lynne x
                    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.

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                      #25
                      Great that you're settled with the right catheter now Hayls, UTI gone and ready to rock the WAV.

                      Was the first one the wrong size - is that what the problem was or was it just badly fitted?

                      Roll on Tuesday for Hayls On Tour

                      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 for the update Haylis,

                        It's great that you're finally sorted and comfortable with your catheter and that the UTI , with attitude is better.

                        Enjoy being out and about in your WAV. Hope you have lots of fun now you're feeling better.

                        Love Debbie x

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                          #27
                          Hayls on Tour, love that Ellie xx

                          Poorly fitted they think, I have the same make and size so assumed poorly fitted was the cause, definitely a tip for anyone considering a Catheter, you definitely need to be careful how your seated or sleep as a kink in the tube ANYWHERE from beginning to end can stop the flow and the only you know is the feeling that your gonna POP!! Not fun, it’s like the Krypton Factor trying to solve the dilemma, lol

                          Awww thank you Debbie, hope you are making plans to have fun and keep

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                            #28
                            On Monday managed to have a face to face appointment with a urologist regarding subpubic catheter and consultant said my podge/ size isn’t an issue and will be done under general anaesthetic as long as I can lay flat it will be able to be fitted
                            My urethra catheter isn’t comfortable 80% of the time, if it’s not underwear causing problems it’s how I’ve shifted, it’s not my friend

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                              #29
                              Yikes, if the urinary catheter is that bad Hayls, then it's really not worth it and the suprapubic is the way to go for sure - did you get a date for the op?

                              Your lung function is obviously very good if you're having a general anaesthetic??

                              You're great Hayls - I'm sure it'll give you a new lease of life and none of the ouch moments the current one tortures you with.

                              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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                                #30
                                Evening Ellie
                                Touchwood my breathing appears unaffected but last lung function test was February so I’m keeping my eyes crossed ( it’s the only part I can cross) lol
                                No date given but as soon as they have the go ahead I’ll be pre Assessed ( probably a lung function test) and hoping my non symptoms are a good indication ( although I know some people don’t have symptoms) that there is no change ( lots of eye crossing lol) and the consultant said no overnight stay, wohoo even better but knowing me I’ll be the 2% that complication will occur eeek

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