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    1st appointment with respiratory consultant πŸ—£

    Off to the hospital for this 1st consultation. I'm sure NIV will be discussed. One of the strengths of this forum is it's given me some insight into the questions I need to ask. So forewarned and all that....have my listπŸ“βœ” Thanks to all the people who have added their experience of NIV & breathing issues.

    Good thing about a list I can ask my friend to ask if I'm feeling too fatigued and my voice is ragged (it increasingly is)

    I also had my weekly blood test at GP surgery this morning checking liver function re Riluzole....now moving to monthly tests. The trek to the surgery felt draining couldn't manage their stairs so used the stairlift....that's a 1st...😏. Anyway home and coffee before the hosp.

    Will post back later with an updateπŸ˜‡πŸ˜˜
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

    #2
    Good luck with your appointment and good idea about friend with list, 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
      Looking forward to hearing the update πŸ‘πŸ€—πŸ˜πŸ˜˜xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #4
        Originally posted by LindaB View Post
        Will post back later with an update
        Great, but take your time if necessary πŸ€—πŸ€—

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

        ​

        Comment


          #5
          Hope goes well LindaB

          Comment


            #6
            Youll be fine. Stephens was great the other day.

            Comment


              #7
              Hi MND family I'm home safe and sound. Friend was great and also made me lunch...if there are angels on earth she is one.
              OK my views and personal to my experience. As often said on here we're all unique and what's right for me is not right for you blah blah...

              So the consultant...(just for context in my professional life I've worked with and fought in equal numbers quite a few)...I liked her style immensely. She was compassionate without being overly sweet (which I would dislike)...she listened to my views....answered each of my questions - I felt with honesty. Definitely approachable and I just felt yes she's someone I can rely on....I could be wrong but she seemed to know her 'stuff' I'm mindful I know next to nothing so maybe easily impressed.

              Process...I was wheeled (1st experience of wheelchair) to the other side of the hospital to have a blood test from my ear lobe...and oximeter finger test. Readings/printout given to consultant.
              10 minutes later and we're in with said consultant.
              We go through what seems standard for every health care professional I meet...the story leading up to diagnosis....such a bore to keep repeating and I feel I should just have printouts made lol

              Anyway I brought up the NIV question. Consultant then explains my readings which show that my breathing is an issue at night...explains the occasional headaches and also unnatural (for me) deep sleep. From the readings she could see this has been happening over a period of a few months....which I do thinking correct as I've noted shallow breathing.

              She asks for my views about my care personal to me...she was clear in that we all are free to make differing choices and her role was to support that. So far so good. This must be boring to read but anyway...
              She asked me what I know about MND...why respiratory team involved. I got out my postage stamp where my knowledge is written told her just what I know lol.
              In reality I told her I go on to the MNDA forum where I've learned such a lot. .particularly ppl writing their own personal experiences.
              She gave a detailed explanation about NIV....I truly didn't feel she was over selling it. Just very matter of fact.

              Once she finished my friend read out my questions. I make no apology for the simplicity of the questions
              ​​​​1. Consequences of not using NIV (thanks to the forum)
              2. Benefits of using?
              3. Is it possible to use too soon?
              ​​4. Does it weaken lung strength?
              5.Using at night only does this lead eventually to 24/7 use?
              6.Breathing exercises (non NIV question) pointless or useful?

              She asked me about my thoughts on peg feed and I just said I'm not wanting to talk about that today...it was seamless and we moved on.

              I could write more however hopefully that's a picture of my meeting. Bottom line I said yes to trying NIV...no point really waiting for other tests as it's clear it's needed. She allayed my fears...one from on here about settings and people being put off as the machine felt too forceful...she reassured me the point is to work with me to get it right for me. Although I'm reluctant to agree to anything invasive I'm hoping NIV improves my quality of life....for however long that may be. Nothing to lose by trying. I also like the fact it's telehealth if that's the right terminology so monitored.
              I can't thank forum members enough for at least giving me a steer about what to ask. I should be up and running within a couple of weeks...basically asap. πŸ€“

              St. George's....Tooting.
              Last edited by LindaB; 5 August 2021, 06:45.
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

              Comment


                #8
                Well done you. Sounds very positive 😘😚

                Comment


                  #9
                  Thank you LindaB for your thorough report πŸ‘πŸ‘

                  It make all the difference when your doctor (or any medical professional) is likeable and trustworthy, shame they're not all like that...

                  I think it's really important what she said about working *with* you to land on the perfect NIV settings, same goes for finding the perfect mask.

                  Big hug to you and to your πŸ˜‡ friend πŸ€—πŸ€—πŸ˜˜
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    #10
                    Hi Linda
                    Glad the appointment went well and you went prepared.Good to try the NIV and hope it works for you.Did consultant say it’s unnatural to deep sleep?What issue did she feel you have with breathing at night?
                    Interesting she touched on subject of PEG..is that because of your breathing issues or because of some other issue?
                    We all learn a lot from each other’s experience.
                    Best wishes
                    Mary

                    Comment


                      #11
                      Originally posted by Ellie View Post
                      Thank you LindaB for your thorough report πŸ‘πŸ‘

                      It make all the difference when your doctor (or any medical professional) is likeable and trustworthy, shame they're not all like that...

                      I think it's really important what she said about working *with* you to land on the perfect NIV settings, same goes for finding the perfect mask.

                      Big hug to you and to your πŸ˜‡ friend πŸ€—πŸ€—πŸ˜˜
                      Yes Ellie you're right she spoke about masks quite a bit...face shapes....all different etc. I'm hopeful....Thanks for the hug....xx
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                      Comment


                        #12
                        Glad you've had a positive experience today Linda and pleased you connected with your respiratory consultant...it makes a big difference.

                        Thank you for your detailed post... please don't say it's "boring" because you're really helping others to be informed about their choices. I get so much information from this forum.

                        Big hugs πŸ€— to you . You deserve a rest this evening,
                        Love Debbie x

                        Comment


                          #13
                          Originally posted by Mary C View Post
                          Hi Linda
                          Glad the appointment went well and you went prepared.Good to try the NIV and hope it works for you.Did consultant say it’s unnatural to deep sleep?What issue did she feel you have with breathing at night?
                          Interesting she touched on subject of PEG..is that because of your breathing issues or because of some other issue?
                          We all learn a lot from each other’s experience.
                          Best wishes
                          Mary
                          To be fair I was the one who said to her it was unnatural for me to sleep too deep and for too long...she felt this was as a consequence of my under breathing...my carbon dioxide levels were on the high side (I wish I could remember the figure) and she mentioned another reading that pointed to the night time issue ....I'm being vague sorry....when I have the report I'll update that bit. Ellie reminded me of the other reading....plasma bicarbonate see below.
                          She didn't relate the peg to breathing but in fairness that's where I ended the discussion. Thanks Mary xx

                          Update : readings from bloods was: capillary blood gas showed a PH of 7.45, pCO2 6.9 kPa, pO.2 9.3 kPa, bicarbonate 33, base excess +11.7 and oxygen saturations of 92.7%

                          Therefore sensible to proceed to NIV
                          Last edited by LindaB; 20 August 2021, 14:59. Reason: Added readings
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                          Comment


                            #14
                            Originally posted by Deb View Post
                            Glad you've had a positive experience today Linda and pleased you connected with your respiratory consultant...it makes a big difference.

                            Thank you for your detailed post... please don't say it's "boring" because you're really helping others to be informed about their choices. I get so much information from this forum.

                            Big hugs πŸ€— to you . You deserve a rest this evening,
                            Love Debbie x
                            I think I might even have a glass of red 🍷cheers Debbie xx
                            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                            Comment


                              #15
                              Originally posted by LindaB View Post
                              I think I might even have a glass of red 🍷
                              ... for a change 🀭😍😘

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

                              ​

                              Comment

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