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  • matthew55
    replied
    I used to not worry about chest x-rays, then I got MND 😉😁x

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  • richard
    replied
    Jo jo Thinking of you and Darren and sending BIG HUGS to you both

    Richard

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  • Gordan1111
    replied
    Sounds awful JoJo. You could maybe have a couple of days rest at home then after BH maybe try phone again & check in case if have any cancellations if feel up to it x

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  • Ellie
    replied
    Oh, what a horrid experience for you both 😪

    Hopefully he can keep up his weight whilst waiting for the scan which, fingers crossed, will be sooner than 3-4 weeks.

    Stay strong Jo Jo x

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  • Jo jo
    replied
    Well what a nightmare we have had. Arrived at the hospital on Thursday ready for peg down his nose procedure. On Friday we were informed that the room he was to have the procedure was at the other side of the hospital and could not use his NIV between wards or corridors. This led to him having panic attacks about going. After a few hours and medication to calm him down we went for it. He was so brave and managed to allow them to put the camera down only to be told that due to his stomach being so high they couldn’t find a light and so couldn’t do it. That are talking about him having a scan to see where his stomach is sitting and if it has gone behind any other organs. He was informed if he stayed in they would scan him next Friday but if he went home it could be 3 or 4 weeks before his scan. He obviously wanted home. They are saying if his stomach is sitting behind any organs it won’t be able to be done. Bless him he’s been pulled from pillow to post this last few days. All this when they say he may never need it. The things you have to go through when you have MND is horrendous. You are all so brave ❤️❤️❤️

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  • Ellie
    replied
    Oh how disappointing and frustrating for you both - all psyched up only to have to face it all over again next week.

    Big hug to you both, Jo Jo.

    Love Ellie.

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  • Lynne K
    replied
    What a nuisance Jo Jo. Hope not to long to wait. Lynne

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  • Jo jo
    replied
    Just an update.... Darens procedure was cancelled 😠. The hospital couldn’t get him a bed so sat waiting all day Thursday heard nothing then Friday got the call to say they couldn’t get a bed for him and they will try again next Thursday.

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  • denise
    replied
    Thinking of you and wishing you the best
    love and hugs Denise xxx

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  • Heather R
    replied
    So sorry to hear this, Jojo, all the best for Friday x

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  • Ellie
    replied
    Best wishes to you both for Friday. xx

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  • Jo jo
    replied
    Thanks for the replies,
    They say it’s to dangerous to sedate him due to his diaphragm loosing all muscle. They say it’s a NU tube but haven’t yet explained in full. They are concerned that his stomach may have gone to high in his diaphragm to even do it but they are going to take him into hospital on Thursday and do the procedure on Friday. it’s so heartbreaking and he’s being so strong.

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  • Ellie
    replied
    Too dangerous because of his breathing?

    Hope the NG tube works out well for him.

    Big hug to you Jo Jo.

    Love Ellie.

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  • Jo jo
    replied
    He’s been informed today that it’s too dangerous to have a peg or rig fitted and his only option is to have the procedure done through his nose sat up. We’re unsure how or when this will be done.

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  • Ellie
    replied
    Jo Jo, please let us know how the appointment went and, if your partner was refused a PEG and RIG procedure, he can get a 2nd opinion from a more specialised doctor.

    The tube they proposed for him is an NG tube (nasogastric) and is passed through the nose and down into the stomach. It's usually more of a short-term option, is visible on the face and can feel a bit odd at the back of the throat, but it does the job.

    Good luck.
    Love Ellie.

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