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  • Ellie
    replied
    You did really well, Mary, not many manage 4 hours straight on night 1 - go you!!

    There are special pillows for side-sleeping NIV users, with cutaways on the sides, so the mask does not get squashed/moved - maybe one would help you? It's worth asking your resp team, who may have one, if not, they are available to buy.

    Maybe the humidifier was set too low?

    Anyway, well done. I knew you'd do it! (The PEG procedure only takes ~30mins)

    Love Ellie.

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  • Deb
    replied
    Originally posted by Sarahw View Post
    Hi Denise,
    It was me! (Hospital bound). I was given a NIV yesterday but I haven’t taken it out of the bag yet! Trains and toilets (Changing places toilet excellent at St Thomas’s- but couldn’t reach soap dispenser!) left me wiped out! I have to start today as, like you, they monitor how much you use it. It’s a very weird sensation but i will persevere. Good luck Matthew!
    A huge well done to you Sarah for going to the hospital and negotiating the train ! You must have been exhausted. Good Luck with trying it today 🤞x

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  • Deb
    replied
    Well done Mary, I don't use NIV but four hours sounds like a really good job for a first night. You should feel very proud of yourself.

    You deserve a treat today! X

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  • denise
    replied
    Hi Sarah

    chicken not taking it out of the bag. Can't blame you but you have to be brave and eventually go for it! Think Mary has the right idea little bit at a time and do what suits you.

    good luck let us know how you're doing.

    Denise xxx

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  • Sarahw
    replied
    Hi Denise,
    It was me! (Hospital bound). I was given a NIV yesterday but I haven’t taken it out of the bag yet! Trains and toilets (Changing places toilet excellent at St Thomas’s- but couldn’t reach soap dispenser!) left me wiped out! I have to start today as, like you, they monitor how much you use it. It’s a very weird sensation but i will persevere. Good luck Matthew!

    Leave a comment:


  • Heather R
    replied
    Good to hear how you are doing Mary, hope it gets easier over time. Big brother keeping an eye on you as well! x

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  • Bowler
    replied
    Mary C good on you Mary. Do what’s right for you tho

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  • denise
    replied
    good for you mary. i cant imagine that it could be easy. i think a natural response to anything on our faces is to try and rub it away. so 4 hours is really good. stephen gets fed up with his and might take it off and leave it if he cant be bothered to put it back on. after all its for your good and if you feel you get some better sleep without it then you have to do what makes you feel good. no good hanging on to it then feeling exhausted during the day. you could always use it during the day. might be easier awake and reading, tv or listening to something.

    well done
    love denise xx

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  • Mary C
    replied
    Hi Deb,Denise and Heather,
    Well the first night of the NIV done.So I lined up relaxation you tube stuff, donned the mask with help from hubby Steve.Settled down but took a while to nod off .I am a side sleeper and felt when I moved air was leaking from mask.The indicator on NIV machine. Showed the mask seal was fine though.
    Managed 4 hours before loo call and need for drink as dry mouth bothering me( despite a humidifier fitted to the NIV).
    I took it off as was exhausted and needed some good quality sleep.

    Tonights plan is to try and keep it on longer..I was advised by respiratory team it might take a couple of weeks to get used to wearing it all night.
    The respiratory team at the hospital are going to monitor the usage by me remotely..so no chance of not getting on with it.😂
    Oh well at least I am trying .
    Best wishes
    Mary




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  • Deb
    replied
    All the best for tonight Mary. I really hope you have a comfortable sleep. X

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  • denise
    replied
    Good luck Mary I will be thinking of you.

    wasn't someone going to hospital today?

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  • Mary C
    replied
    Thanks Heather, I take heart by reading encouraging messages on here by people who have learnt to get used to the NIV.
    Nobody wants one ..but let’s hope I can feel some benefit.
    Lined up relaxing music etc for my bed time tonight when my NIV and I become acquainted.
    Best wishes
    Mary x

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  • Heather R
    replied
    All the best, Mary and Matthew. They certainly sound tricky, I look forward with trepidation to having to use one myself x

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  • Mary C
    replied
    Hi Matthew,
    I start NIV wearing tonight and hope I can manage it.
    I have been reading up on tips that’s might help me..on website called hope2sleep.co.uk.It seems to have handy hints for beginners like me on how to get used the NIV.
    Glad your machine is working well again.
    Best wishes
    Mary

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  • denise
    replied
    Got it in one. 🙄

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