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Thread: Hello I知 Douglas

  1. #111
    Forum Member Terry's Avatar
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    Hi Douglas ;

    Something seems very wrong from the beginning. I am no expert to say the least but I fail to see how your CO2 levels have not decreased, especially as you have managed to stay on it for so long a time.

    I don't know if any of the drugs you are talking have affected the breathing muscles, I know that tamazipan and others affect mine after a few days.

    Do try to get any settings and record them and make notes.

    Good to hear that you have plenty of TV channels.

    Love Terry

  2. #112
    Forum Member Ellie's Avatar
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    700ml sounds right for your target weight/previous weight of 98kg, so your settings may need more tweaking.

    That alarm can be muted btw...

    Hope tonight is a good one!

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

  3. #113
    I'm sorry to hear them things aren't sorted yet. Round our way the machines are managed by respiratory physiotherapists.
    I know they have tweaked hubbies machine so it doesn't alarm so often.
    Hope they things go better tonight.

  4. #114
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    i didnt know weight was a factor in the settings. Mick was over 16st , now 15 10 when he weighed in 2 wks ago at 5ft 6 /7 his nurse said not too worried about slight loss when she called tue

  5. #115
    Forum Member Gillette's Avatar
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    Hi Douglas,

    I hope things improve for you soon.

    I should have thought the staff would be more knowledgeable, after all, Wythenshawe is supposed to be the specialist chest and breathing hospital in the area.
    Dina


    Trying to keep positive, but not always managing.

  6. #116
    Forum Member Barry52's Avatar
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    I wish that Doug gets relief soon.

    It is clear from the posts that only the 22 MND hospitals are capable of managing the symptoms associated with the disease. Once again this is an example of how scant the knowledge and experience of dealing with MND is in most health professionals. We need to change this but it will require money and training.

    I don’t have a solution but I can see the problem.

    Barry
    I知 going to do this even if it kills me!

  7. #117
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    Quote Originally Posted by Gillette View Post
    Wythenshawe is supposed to be the specialist chest and breathing hospital in the area.
    Yes I知 in the North West Ventilation Unit ward

    Most of the men who have been in this side ward are fellow MND sufferers so most of the staff are great with it. What痴 a bit worrying is how many are past alumni...

    Anyway the CO2 is now 6.7

  8. #118
    Forum Member Terry's Avatar
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    That's a bit better, Douglas,

    I would like to see below 5 in a few days.

    What do you watch on TV?

    Love Terry

  9. #119
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    Watching Amazon Prime ( Good Omens ) and Netflix ( iZombie and Lucifer ) when I can

    Yesterday my wife was given a whistle stop tour of the Nippy screen

  10. #120
    Forum Member Ellie's Avatar
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    That's good to hear Douglas - the CO2 level is heading in the right direction.

    Enjoy your TV !!

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

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