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    Respiratory clinic

    Hi all. I had a chest infection a few weeks ago that impaired my lung function test. I asked for advise from respiratory consultant who said the community team would visit with a cough assist machine and also have to be there when I have my new nebulizer meds as they can cause severe wheezing. I was impressed.

    Now they also want to introduce niv. So in one day the will show me niv, show me how to use cough assist, administration of the meds via nebulizer and ear lobe gas test.

    I've expressed my concern that wouldn't it be tiring having to do this in one visit on the 20th of June and they said I would wait much longer for the community team to come out.

    Its a 3 hour round trip so can anyone say how long this all takes?

    It will be 5 weeks from being prescribed a medication to actually being able to take it.
    Diagnosed May 2021 bulbar onset als.

    #2

    Originally posted by shelly21 View Post
    ... in one day the will show me niv, show me how to use cough assist, administration of the meds via nebulizer and ear lobe gas test.
    Breaking it down Shelly, the NIV demo is probably the most straightforward as it’s preprogramed, so it should be plug in and play, with basic instruction - machine settings are usually locked. They’ll probably adjust the straps on the mask headgear to size and make sure the mask is a good fit (although you won’t really know if straps and mask are right until you’ve worn it for a few hours) all of which is likely to take maybe 30mins.


    The Cough Assist needs and deserves the most time to demonstrate how to use it properly/effectively, a pure guestimate is 30-40mins.

    The neb is straightforward too but, given that your first use needs to be supervised - 10-15mins is a typical treatment duration - you're looking at ~30mins maybe.

    The earlobe test is quick but the warming cream needs ~10mins to work, so maybe this could be done early on when they're faffing about with the machines to be efficient… The test result itself is immediate.

    So yes, by my guesses, you're in for a looong day with travel time - I have had demos on all of these machines, individually I should add.

    On that basis, it may be worth a gamble on the community team OR prioritising one or two machines for the 20th AND/OR seeing if Neuro/GP can hurry on community team AND/OR investigating if any other medic can supervise that first use of meds in the neb (the neb itself is a doddle to use)

    There are videos online if you are tempted to say 'Yes' to all being OK and getting out from the appointment asap 😏




    ​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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      #3
      We had similar, we had a 2pm appointment and an hour and a half journey to get there. We left hospital around 4pm so got home after 7pm due to Friday M6 rush hour traffic so very much a day out. That said, it was very good training and hubby slept in the car which made it less tiring for him. The respiratory team at Royal Stoke Hospital are amazing, and worth the time and journey. Only downside is I ended up being a pack donkey carrying 2 NIV's, nebuliser, cough assist and suction unit.

      The latest time, last Friday was the same timeframes, but I took both of our PA's who carried the equipment while I steered the power hair because they were having training on how to use the equipment.

      I don't know what the criteria is for home visits, but I find it is a good excuse to get him out of the house, albeit just for a medical appointment.
      Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

      Respiratory and blood gases still within normal range.

      No speech but sense of humour still fully intact.

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        #4
        Hi shelly21 my dad recently had an appointment with the Bristol sleep/NIV clinic. He had the ear lobe test, an appointment with the doctor to review the results, a check of his peak cough flow and then issued with and a demo of the cough assist machine. It took about an hour and half for that to be completed. Our travel time is only about 30 minutes each way.

        ​​​​​​The cough assist machine is fairly simple in terms of operating it as they programmed it for dad so it's a case of turning it on and pressing one button. It took a bit of time to set it and we ended back in two weeks to increase the settings as it wasn't helping him (I'm not sure it is now due to the extent of his mucus issues).
        ​​​​​​
        We ended up buying our own nebuliser and the community physio did a home visit and showed Dad how it use it. That didn't take too long and he's found it easy to use.

        Ww haven't reached the stage of NIV (yet) so can't comment on that.
        ​​​
        I guess it comes down to how much you feel you are able to do on terms of fatigue and how quickly any other appointment can be made.
        Hope it goes well and the equipment helps when you get it
        Claire

        ​​​​​​

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          #5
          Ellie you are a diamond 💎. Thank you for the detail of each item. I think I will go with the 20th and all in one. I am going to ask why a local team can't do the earlobe test. My local heath authority don't have an mnd nurse and respiratory re mnd experience.

          I know now it will be a good 5 to 6 hrs.

          At least its all done and dusted. X
          Diagnosed May 2021 bulbar onset als.

          Comment


            #6
            Claireflo thank you. I think I will be tired but its a need as my mucus is vile at the minute. Both cough assist and hypertonic for my nebulizer will sort that out. X
            Diagnosed May 2021 bulbar onset als.

            Comment


              #7
              MMG snap i use stoke for respiratory and they are lovely.
              snap also an hour an half to get there in good traffic. My appointment is 10.30 so hoping the M6 will be kind lol.

              I've got to take my nebuliser and will leave with 3 bits of kit so hopefully park nearby.

              Its a bonus re a morning appointment.

              Thank you for the feedback x
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                Originally posted by shelly21 View Post
                MMG My appointment is 10.30 so hoping the M6 will be kind lol.
                We got there almost an hour early as traffic was better than expected, we checked in early using the auto check in machines and then when we got to the "manned" reception I apologised for us being early and asked if we should go for a coffee until nearer our time. They were very nice and said that they understand that when you have to travel, combined with unpredictable traffic that they make allowances. We were actually seen early which was a bonus. They are a lovely team. We also saw the neurologist for the first time as we have been transferred from the QE due to geography.
                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                Respiratory and blood gases still within normal range.

                No speech but sense of humour still fully intact.

                Comment


                  #9
                  MMG that's good re getting you in the appointment early. I've only been to Stoke for ear lobe gas test. But the nurse was great. My neuro is at the QE but I've only met him once on diagnosis day. Dr mustafa at Stoke I've never met. All appointments via phone.
                  At the moment its ok .
                  Diagnosed May 2021 bulbar onset als.

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                    #10
                    shelly21 02.31 😬

                    In the past I'd have asked if the club was fun 😏 but now I find myself saying sorry if you were awake because of pain or other discomforts 😟 🤗😘
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Ellie I've always had this. I sleep really well normally but occasionally I just can't sleep. Tbh I am worrying re my sats. I've got a home oximetry tester and last night when slight inclined it hit 87. I've got a lot of mucus that just won't shift. At 4am I was on the pineapple juice. Its been 3 weeks since chest infection but cannot shift the jak stuff x
                      Diagnosed May 2021 bulbar onset als.

                      Comment


                        #12
                        Originally posted by shelly21 View Post
                        I've got a home oximetry tester and last night when slight inclined it hit 87.
                        87% - awake? What is a typical daytime figure? (leave it on for ~1min, to settle) xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Ellie yes 87 awake but in bed inclined. My day is still good at 94/95. The consultant wrote to me after he analysed my overnight Oximetry saying that need for me to trial niv. He said that it was a subtle change but showed variability.

                          I'm a little better tonight. Although only just got in bed. I've taken one of my anxiety meds which fortunately I don't need every night.
                          X
                          Diagnosed May 2021 bulbar onset als.

                          Comment


                            #14
                            Do you think the Lorazepam has an effect on your Sats Shelly?

                            It's probably hard to call - on the one hand, benzos suppress respiratory function but, on the other hand, anxiety causes us to breathe more quickly and more shallow, which also lowers Sats, and therein lies yet another dilemma for us 😏

                            It's a quality of life decision and it's a personal decision.

                            Roll on 20th June. xx
                            ​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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