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Thread: Hubby has MND symptoms but no diagnosis yet.

  1. #71
    Forum Member Ellie's Avatar
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    Twinkle, I'm sorry your husband is so ill - it's one thing after another for you both.

    Sending you love and support.

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

  2. #72
    Forum Member Boiler68's Avatar
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    Thinking of you tonight Twinkle and sending you lots of love xxxx

  3. #73
    Forum Member Twinkle's Avatar
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    Hi all, my husband is on the Bipap machine still at hospital, his lung infection got worse overnight so they put him on the Bipap. His recent blood gases show some improvement. It's very hard to digest what Dr's say about the bipap machine. Can anyone explain it so I can re-read it and has anyone been on it before?
    Thanks X X

  4. #74
    Forum Member Twinkle's Avatar
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    Thanks everyone for your replies, it helps me so much to not to be alone through MND as we're the only one here on a ward of 27 with MND.

  5. #75
    Forum Member Ellie's Avatar
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    Twinkle, our breathing muscles (diaphragm & intercostals) weaken too, reducing how much oxygen we can breathe in and how much carbon dioxide we can breathe out (gas exchange) That's why giving us O2 is bad, we can't expel enough CO2, causing it to build up in the blood.

    BiPAP increases the volume of (room) air we breathe in and crucially also increases the amount of CO2 we expel making for a more efficient exchange of gases.

    The BiPAP settings are important - the IPAP (breathing in) is much higher than the EPAP (breathing out)
    Can you see what's on the screen?

    For example, my IPAP is 11, EPAP is 4. I am 5 years using BIPAP.

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

  6. #76
    Forum Member Twinkle's Avatar
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    Ellie, I've attached a photo of the machine readings.
    Attached Images Attached Images

  7. #77
    Forum Member Ellie's Avatar
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    The IPAP is a bit high but that could be because of his pneumonia. If he's comfortable breathing in @20, that's fine, but if he feels he's being "force fed" air, there is scope to reduce, but only if it's causing him issues.

    EPAP @5 is ok as is Backup @14 breaths per minute unless he feels it is too many.

    It's a balance of not forcing his muscles to overwork and managing the pneumonia. xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #78
    Forum Member Terry's Avatar
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    Thanks for the update Twinkle,

    Good to hear that his blood gasses have improved. Take notice of what Ellie says and it might be worth asking tomorrow about the pressure.

    Hope his infections show some improvement over night and please try and get some rest, think about your wellbeing as well.

    Hugs Terry

  9. #79
    Forum Member Boiler68's Avatar
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    Hello Twinkle...yes to reiterate what Terry said I hope you are getting some kind of decent rest. The hospital watch can really take its toll. Take care of yourself too xx

  10. #80
    Forum Member Twinkle's Avatar
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    Thanks Boiler and Terry, I've been having plenty of rests thanks.

    Dr's say hubby's pneumonia is most likely aspiration pneumonia and it's mainly in his right lung.

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