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Thread: Hubby has MND symptoms but no diagnosis yet.

  1. #81
    Forum Member Kayleigh's Avatar
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    Hello Twinkle,

    Glad that Ellie and Terry were able to advise you about your husband's breathing yesterday.

    I hope that Mr Twinkle is feeling a bit better today and that there will be an improvement in his health soon.

    It is good that you are getting some rest and I you are able to eat regularly too to keep your strength up.

    Thinking of you and you family.

    Love and best wishes,

    Kayleigh x

  2. #82
    Forum Member Twinkle's Avatar
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    Lol at Mr Twinkle

    He's slightly improved, the nurse mentioned that some reading was at 93% & they'd like to see it higher before they'll wean him off the Bipap machine.

    There was phelm in his throat so we told the nurse. Is that normal when on the Bipap machine?

  3. #83
    Forum Member Kayleigh's Avatar
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    I can imagine you being Mr and Mrs Twinkle. You sound like a lovely couple with very friendly and bubbly personalities. I expect that he is the twinkle in your eyes and you are the twinkle in his eyes!

    Glad that he is a bit better. Sorry that I cannot help about the Bipap machine - I will have to leave that to the wonderful Ellie and Terry to advise you.

    Kayleigh xx
    Last edited by Kayleigh; 24th November 2018 at 18:42.

  4. #84
    Forum Member Ellie's Avatar
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    The 93% is probably O2 saturation.

    TBH Twinkle, there's no rush to get him off BiPAP - even with O2 Sats above 95%, we can struggle to clear CO2.

    The IPAP level can be reduced from 20, assuming he doesn't have asthma or COPD, and his CO2 levels can be monitored, given where he is.

    BiPAP shouldn't cause phlegm/thick mucus but not getting enough fluids can. Unfortunately thick secretions are a consequence of MND.

    If he finds the hospital warm & stuffy, adding a humidifier to the BiPAP will moisten the air he breathes.

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

  5. #85
    Forum Member Twinkle's Avatar
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    Hi, Can I have some advice please, hubby's reading is 89% and he's on the maximum levels on the Bipap machine. Is there anything these Dr's should be aware of? They're talking of turning of the machine if his levels don't go any higher.

  6. #86
    Forum Member Terry's Avatar
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    Hi Twinkle;

    I've no experience of a breathing machine first hand. I can only think that the infections are affecting how the gasses are being exchanged and that is not working well.

    I guess that the phelm in his throat could be removed with a suction machine.

    I feel for you and your husband.

    Hugs Terry

  7. #87
    Forum Member Ellie's Avatar
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    Hi Twinkle,

    Have infection, blood clot, collapsed lung and airway obstruction as reasons for dropping O2 levels been ruled out?

    His previous level was 93% - does it fluctuate or drop slowly?

    It is true to say that there comes a time when a person no longer gets benefit from using BiPAP, but (from afar) it doesn't sound like your husband has "air hunger" or gasping for breath, or does he? If he is breathing comfortably on BiPAP, leave him on it - it is about COMFORT not O2 NUMBERS!!

    Is he on midazolam, morphine or lorazepam?

    It's not a case of "turning it off" as one would think of with life support, it is not a life sustaining machine.

    Twinkle, I think you should ask Drs if he can be transferred to a hospice. I am NOT saying it's the end of the road for him but they're the best in palliative care and know MND.

    Big hug,

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

  8. #88
    Forum Member Terry's Avatar
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    Good idea, Ellie,

    A hospice is normally a lot better place for a Mnd person and there partner.

    Love Terry

  9. #89
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    Hi Twinkle,

    I am so sorry that your hubby has had so many problems and is in hospital. You must be exhausted yourself. Do take care.

    Just to say thinking about you and hoping there are better days ahead.
    Love Debbie x

  10. #90
    Forum Member Twinkle's Avatar
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    Thanks all for your kind messages. My husband is still in hospital, bipap on maximum, good results from the blood gases, blood markers are up and down, he has some liquid at the bottom of his lungs on a recent x-ray. His tummy is huge through being on constant Bipap and I guess no food, he's on a hi protein drip through his foot as he has sore arms/hands. They're still continuing treatment here in hospital.

    Atm, my husband is mainly asleep, he's on a continuous pain relief drip because of his tummy, it makes such strange noises, like a waterfall going on inside.

    The consultant says if he's better soon he'll be transferred to Wytnenshawe which is a better equipped hospital for MND patients.

    In my honest opinion I don't think he'll get better, and I don't know what to do next, whether to give his body more time on anti-biotics, more time to recover etc. My husband wants to continue treatment, but I see he's becoming more ill.

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