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Thread: Hello I知 Douglas

  1. #131
    Forum Member nunhead_man's Avatar
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    Hi

    Sorry for butting in but what is this CO2 reading about?

    My recent breathing jobette was based on the diference betwen a breath volume standing and lying down - they said 90%?

    Also they got blood from my ear by warming it with something that made it red and bleed like crazy after scratching and then catching the blood. But did not get any results.

    It was the 90% and my overnight blood "Ox" monitoring results that got me sent off to St Thomas's breathing unit for a Nippy.

    Warmly

    Andy (Vote for me as an MND trustee!)
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #132
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    My home respiratory team would not let me have a Nippy - so I bought my own. My etCO2 is 45mmHg now so I use the nippy if I get headaches upon waking. Most ALS patients will get type two respitory failure. This is because the diaphragm and intercostals become so weak there is not a large enough tidalvolume to flush out the CO2. Exhalation is 5% CO2 in a able bodiedperson bt this felies on a 500ml tidal volume

  3. #133
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    cant type much - right arm exhausted now

  4. #134
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    Sorry I wasn’t told last night’s reading as today was spent trying out nose masks that would be used in PEG - I really didn’t like the pressure bombarding my nostrils

    To be continued

  5. #135
    Forum Member Terry's Avatar
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    Hi Dis,

    I would have thought that they would have to do a RIG feeding tube opp because of your breathing. I think that still involves a very small tube going up your nose but I would have thought that a normal mask would then go over it.

    Love Terry

  6. #136
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    Well the last 2 CO2 readings were 6.4 then 6.6

    They aim to combine a sleep study with the overnight ventilation as the current settings sometimes send the next boost before I breathe out

    The doctor has come round to RIG so I need a CT scan to ensure the stomach is in the right place

    RIG may not happen in this stay

  7. #137
    Forum Member Ellie's Avatar
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    It's certainly turning into a saga Douglas, I'm sorry.

    Hope the sleep study gives relevant information on what's happening during your nocturnal breathing - be it apnoeas, actual BPM (breaths per minute) data and tracked O2 saturation levels etc. - so you can get the optimal benefit from NIV.

    Are your sats / O2 levels OK and fairly constant?

    Sounds as if you have to bear hospital food a while longer

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #138
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    Pressure Support vs Pressure Control ?

  9. #139
    Forum Member Ellie's Avatar
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    Pressure Support mode is best for augmenting breathing in people with respiratory failure due to ALS.

    However, I don't know your sleep study results Douglas and, if your Nippy is in Pressure Control mode, there may be a reason why. If yours is in Pressure Control mode, ask why. (The difference is to do with inspiration timing.)

    How was the sleep study?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #140
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    Still haven’t been told the sleep study results

    The consultant listened to my description and had the mode changed to support

    I told him “
    ventilation is brutal

    When the mask is fitted I’m Drowsy then the first blast hits and I’m
    Wide awake thereafter

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