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    What happens next?

    If someone simply can't manage NIV at home, is that it, end of life? This is an absolute nightmare, so little support, dealing with multiple agencies, plans being changed minute by minute, no coordination. I hate the NHS and all the so called agencies.

    #2
    Drumond30 - sorry, can't help, but I'm interested in the answer. I totally understand your frustrations though. Sending hugs xx
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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      #3
      Drumond30 in my situation(live alone) I assume if I can't manage to put on my NIV mask I would need carers to do that.

      I suppose it depends what you mean by 'simply can't manage'

      Sorry it's tough for you at the moment💙😘
      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.​​​​​​

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        #4
        Hugs from me too. I know what you mean. Xx
        when i can think of something profound i will update this.

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          #5
          Originally posted by Drumond30 View Post
          If someone simply can't manage NIV at home
          May I ask in what way NIV isn't being tolerated?

          As for the "is it then end of life", that very much depends on the person's respiratory function.

          I'm sorry you have to even ask this question for lack of support... 😘😘
          ​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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            #6
            My husband uses NIV at night time.Occasionally he wants to take the mask off and as he has a profiling bed I raise it higher so he can get more breaths in. Not sure why you can’t manage NIV hope you can find a solution.xx

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              #7
              Dad just doesn't seem to be able to handle it, he panics and fights against the mask. He's still in hospital and they've asked my Mum to stay another night with him to persuade him to keep it on, she is exhausted. His 02 levels are high so if he wants home, which he does, then he needs the NIV. The whole thing is a nightmare.

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                #8
                Well tbh, he's not going to get used to it easily if he's in a stressful situation, is he, and it sure sounds stressful with him being under pressure to 'pass the test'...

                The best way to get used to breathing with NIV is to breathe normally and to relax into the rhythm of the NIV, which should have been set up with your dad's breathing in mind.

                To that end, could your dad try it awake, sitting up tomorrow watching telly, reading or listening to the radio/music/podcast, even for 45-60mins.

                Are they saying or implying that, if he can't tolerate it, he can't bring it home?? Many people take a few weeks to build up to using it for the full night and I think it's unreasonable to expect your dad to go from 0 to 60 in such a short time.

                Originally posted by Drumond30 View Post
                His 02 levels are high
                Sorry, do you mean CO2, not O2?

                Did he have the PEG procedure in the end?

                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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                  #9
                  I'm really not sure, we've got a meeting with the care team tomorrow at 11am. The whole thing has been a nightmare since he went in. He successfully had the PEG but then his breathing deteriorated. They put him on oxygen despite us saying that wasn't safe for MND patients. Took hrs to get a Dr to see him or for any co-ordination with his MND team, although I use that word loosely. He ended up in HDU.
                  Now if he cant use NIV we are not sure what happens.

                  Yes sorry CO2 levels.

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                    #10
                    Originally posted by Drumond30 View Post
                    They put him on oxygen despite us saying that wasn't safe for MND patients ... He ended up in HDU
                    I don't know what to say to that...

                    Having him on O2 without NIV support will have raised his CO2 levels - I guess it remains to be seen if the deterioration was directly linked to the PEG procedure and, if it was, is it transient.

                    Perhaps if your dad were able to use NIV for a while tomorrow daytime, his CO2 levels can be compared before and after, then he can see its benefits. Notwithstanding his current respiratory function, which obvs the doctors know best, he should 'demand' a fair trial of NIV in his own home. Either way, your dad can opt to discharge himself but hopefully it won't come to that.
                    ​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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                      #11
                      Originally posted by Drumond30 View Post
                      Now if he cant use NIV we are not sure what happens.
                      Sorry, forgot this... That depends on how high his CO2 is and how low his O2 is, I guess that will be discussed tomorrow. 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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                        #12
                        Drumond30 Just a thought could it be the wrong mask. I have a mask that goes over my mouth but under my nose. I couldn’t cope with the full mask over my nose and mouth.

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