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Hello I’m Douglas

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  • Sheila
    replied
    Well done Douglas on your birthday fundraiser. Such a good thing to do.

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  • Gillette
    replied
    Hi Douglas,

    What a rotten time you're having. I really hope things turn around for you soon.

    Well done on the money donated to your birthday fundraiser.

    Leave a comment:


  • Ellie
    replied
    Oh Douglas, you could do with some good news, couldn't you??!!

    What about a hospice bed (for symptom management)?

    Big hug.

    Love Ellie.

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  • Dis1960
    replied
    Well the assessment bed offer has been withdrawn as I’m too complex for them...they actually objected to the cough assist machine

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  • Terry
    replied
    Hi Dis;

    Well done raising monies whilst in hospital, you put most of us to shame.

    Love Terry

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  • Dis1960
    replied
    Back up to 6.5

    On the positive side my Birthday fundraiser on Facebook has raised £190 for MNDA

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  • Terry
    replied
    Hi Dis;

    PLeased something has gone well, any news on the date of the opp.

    Love Terry

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  • Dis1960
    replied
    Well tweaking continues pressure down to 22, slightly different rise time and 6.1 ...more pertinently it was a much more pleasant night on the reduced pressure

    Oh and the PEG test went well
    Last edited by Dis1960; 26 June 2019, 09:16.

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  • Terry
    replied
    Thanks for the update Dis,

    I was hoping that co would be improving. Hope your OK in there.

    Love Terry

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  • Dis1960
    replied
    So 21st 5.1
    22nd no reading
    23rd no reading
    24th 6.1
    25th 6.5

    They are talking about moving me to a local authority assessment bed as there’s a waiting list for PEG
    The doctor is finding out about where on that list I am and has stated the pressure is high due to bulbar problems

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  • Ellie
    replied
    Originally posted by Dis1960 View Post
    They want to use the same profile for both masks
    (I am holding my tongue here!!)

    Your Nippy can have 3 different profiles set for that very reason - people's daytime settings are often different to their night time settings, for obvious reasons, and for different mask types, as in your case.

    The type of mask you wear is relevant to your IPAP setting, so having different profiles is not uncommon.

    Love Ellie.

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  • Dis1960
    replied
    They want to use the same profile for both masks

    24 into the nose mask was not bearable 22 or 23 were ok but 16 was better still

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  • Ellie
    replied
    Originally posted by Dis1960 View Post

    The nose mask for the PEG trial started at 12/5 and the last hour was spent at 16/5
    Hello young man

    I'm guessing you mean you started off on an IPAP of 12.5 and ended up on 16.5 for the last hour? (I know it wasn't your mask mask)

    Were you struggling at 12.5 - is that why it was ramped up? I know I'm kind of badgering you but given they didn't have your NIV in Pressure Support mode, I'm left wondering if it's on the optimal settings for you.

    I put my IPAP to 24 last night to feel what it was like - it was very uncomfortable!!! (My IPAP is 10.5 and I have swallow difficulties too, having failed the biscuit test many moons ago)

    Happy Anniversary to you and Chris, though I know you'd much rather be at home with her

    Hugs to you both.

    Love Ellie.

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  • Dis1960
    replied
    No CO2 reading last night - the nurse said they didn’t need to !

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  • Terry
    replied
    Hi Dis;

    It sounds like they have put the right switch on now. I would expect (5.1) after the first 8 hrs night nearly 3 weeks ago, but hey, what do I know.

    Great wedding anniversary then, I bet you never got her some chocolates.

    Nice to meet others on the forum even if in hospital.

    Hope you have a alright birthday.

    Love Terry

    Leave a comment:

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