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    #61
    Originally posted by Dis1960 View Post
    Thanks Dina so far the only thing wrong is how many attempts were made to get blood samples
    Oh, crikey! I hope they won't want blood from me when I go there. It's not unusual for me to have to return another day because they can't get any of mine. I hope everything else is going ok for you.
    Dina

    Trying to keep positive, but not always managing.

    Comment


      #62
      Originally posted by Ellie View Post
      Dina, Lynne and Dis,

      I think it must offer a degree of comfort that you all can chat about, and compare notes on, your clinic experiences?

      The Manchester Amigos

      Love Ellie.

      Ha ha ha! Well, Lynne and I are already planning to go on the rampage in our powered chairs... The Terrible Twosome may have to expand into The Full Throttle Threesome, if Douglas has a powered chair, too!
      Dina

      Trying to keep positive, but not always managing.

      Comment


        #63
        Well they tried me with a fourth mask this morning for just over an hour so they want me to try it overnight for 3-5 hours

        Last night they swapped the bed/mattress for a different bed / air mattress - not impresse

        Comment


          #64
          Hi Douglas,

          Did you find the 4th mask comfortable and are relaxed enough to give it a good try tonight? No sore patches?

          And the air mattress may just be on the wrong settings - if you were OK on the standard bed & mattress, I'd ask to be put back on that if I were you, no point in trying the NIV overnight if you're uncomfortable in bed. One thing at a time !!

          Best of luck.

          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


            #65
            Sorry that it's not being straightforward for you, Douglas. I really hope you get sorted quickly and more easily than up to now.
            Dina

            Trying to keep positive, but not always managing.

            Comment


              #66
              Originally posted by Dis1960 View Post
              I mentioned that my nose is almost permanently blocked with catarrh
              Hi Dis,

              Nice they changed your mattress when you were reasonably comfortable.

              Sometimes our noses get blocked because we breathe through our mouth when asleep.

              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


                #67
                It never rains does it..now high blood pressure

                Comment


                  #68
                  Sorry about that Dis. Hope that medication sorts it out. 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


                    #69
                    Hi Dis,

                    Hope you are getting on with the mask. See if there's any pressure areas and ask their advice about it and any other concerns.

                    Have you developed higher blood pressure since you have been in there?

                    Would not be surprised because its hard and stressful for many of us in hospital.

                    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


                      #70
                      I think it’s being in hospital as the GP didn’t voice any concern about BP

                      Well I tolerated 8 hours in the mask until woken for blood pressure readings and blood gases sample from the ear lobe

                      For today the pressure from the Nippy 4 has been upped a smidgen and I’ve got through a test hour with that OK

                      Oh and the b.p. medication is administered in spoonfuls Of strawberry yogurt

                      Comment


                        #71
                        That is good to last 8 hours, dis,

                        Tell us what pressures etc, it won't mean a lot to me but handy to have a record and Ellie knows About it.

                        I reckon your blood pressure issues are mostly to the stress.

                        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


                          #72
                          That's great re tolerating the mask overnight Douglas - it should make a positive difference to your overall wellbeing by increasing your energy levels, appetite and improving your emotional state.

                          I'm the same re BP! Put the cuff on me in a hospice, hospital, or even by my GP in my own home, and my BP shoots up

                          If you do have sustained high BP, at least it's easily and successfully treated with meds.

                          Any mention of fitting a feeding tube during this inpatient stay?

                          Take care.

                          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


                            #73
                            Hi Douglas,

                            Good news that you are tolerating the mask so well.

                            As for your BP, "White Coat Syndrome" is a well-known phenomenon. I don't have White Coat Syndrome but my BP would go sky high at the thought of having to eat strawberry yoghurt!
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              #74
                              Originally posted by Gillette View Post
                              but my BP would go sky high at the thought of having to eat strawberry yoghurt!
                              This evening they used toffee yogurt YUK

                              Comment


                                #75
                                Originally posted by Dis1960 View Post
                                This evening they used toffee yogurt YUK
                                Oh, yeuch...
                                Dina

                                Trying to keep positive, but not always managing.

                                Comment

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