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  • PeterPan
    replied
    Originally posted by Ellie View Post

    What about nasal pillows for daytime NIV use Peter, rather than the full face mask? xx
    Thanks I did try that in hospital but my mouth kept getting blown open !

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  • Doug Carpenter
    replied
    NIV 24/7

    Hi Peter

    Our journeys, our MNDs and related circumstances are all unique. But may I offer some encouragement over wearing an NIV during the day. It is definitely not the beginning of the end.

    I should explain. I am virtually immobile from the shoulders down. This means that when I am put somewhere, e.g. bed, riser-recliner or power chair, I cannot move from that location. Therefore, day or night, having a two- metre air hose is no additional handicap.

    At night I wear a ResMed AirFit F30 covering my nose and mouth. This is secure and comfortable, but, as you say, it interferes with communication. During the day I switch to a Philips Respironics DreamWear under the nose nasal mask (Ellie referred to nasal pillows). These are widely worn by people with sleep apnoea.

    Once the single strap has been properly set and the soft silicone pad settled into place I hardly know I’ve got it on. I can talk, eat and doze very comfortably.

    With this combination of masks my blood oxygen saturation has remained constant for almost eighteen months.

    I can remove the nasal mask for periods of, say, ten minutes so that the carers can wash my hair or shave me, for example, but I wear it the rest of the time because it makes my breathing so much easier and more comfortable, especially talking to visitors.

    I hope this information is reassuring.

    Doug

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  • Ellie
    replied
    Originally posted by PeterPan View Post
    It certainly makes communication more difficult too.
    What about nasal pillows for daytime NIV use Peter, rather than the full face mask? xx

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  • Graham
    replied
    Yes, my friend. There is an out, Peter.

    Life sure is tough.

    My breathing stabilised to the point of not being an issue for me.

    I find it is a matter of descending to the next level when trying to find comfort. It may take some time. Hopefully you can get an excellent professional quickly.

    All the best.

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  • Piglet
    replied
    PeterPan sorry your needing the extra NIV during the day but glad it is helping you. I think my husband will need to use his second machine during the day too soon.

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  • Hope
    replied
    I was told at diagnosis that I had ‘options’ if my breathing deteriorated. It is the one thing that gives me some comfort. Thankfully I am not yet on NIV but I do know I shall need it one day. x

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  • GillB
    replied
    I am too as we have so little control over the decline in this dreadful disease.

    I am not on Niv yet but have it on my ADRT that I don't want to be on it 24 hours a day.

    You are not being blunt PeterPan but in the absence of Assisted Dying it allows me some comfort that I can control things when the time comes x

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  • shelly21
    replied
    I am also glad to be hearing others talking about the options of withdrawal. We have such little control over each new decline. But we have control when it really matters. We need to be open and realistic on the chats. So thanks girls and guys x

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  • Heather R
    replied
    PeterPan “On the other hand (and I’m not depressed or morbid about this) there is now the option of my asking for NIV to be withdrawn and having a way out - at the right time. Sorry to be blunt!”

    I agree with you. , a comforting thought as my breathing deteriorates,
    a feeling of some possible control over things x

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  • TinyLady
    replied
    PeterPan - no worries about being blunt. I appreciate your honesty. I'm here to learn, to share support and to feel part of a community who actually understand

    If it gives you options when the time comes then I also understand that. Fingers crossed you find ways to adapt quickly. Hugs x

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  • PeterPan
    replied
    Ellie Yep, two masks (generous hospital!). The decline happened over about three weeks and the respiratory team are aware. Glad to hear your heart is still strong ❤️😀

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  • Ellie
    replied
    PeterPan I hear ya 😟 Thank goodness for NIV, eh. Have you 2 masks also?

    Peter, I know I'm a bore about this but, if you ever think you have a sudden or unexplained decrease in respiratory function, get a doc to listen to your chest.

    That reminds me: last time a doc listened to my chest, he told me to "take a breath in", so I did insofar as I could.
    Pregnant pause: "take a breath in" he said again. I was leaning forward and not in sight of my eye gaze to type, "that's what my breathing in is like" 😏 He removed the stethoscope,I typed, he cleared his throat and declared, "well, you have a strong heartbeat..." I hasten to add that he wasn't my usual doctor.

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  • PeterPan
    replied
    Originally posted by Sarahw View Post
    I’m completely with you peterpan! Shocked by how much I need it now. What a good idea to have 2 machines
    The National Hospital at Queen Square suggested having a spare in case one malfunctions. I would be in serious trouble if that happened

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  • PeterPan
    replied
    Originally posted by TinyLady View Post
    PeterPan - how are you feeling about that?
    We can strap the ventilator onto the back of my power chair, but inevitably having to be attached permanently is limiting. It certainly makes communication more difficult too. On the other hand (and I’m not depressed or morbid about this) there is now the option of my asking for NIV to be withdrawn and having a way out - at the right time. Sorry to be blunt!

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  • Sarahw
    replied
    I’m completely with you peterpan! Shocked by how much I need it now. What a good idea to have 2 machines!! I’ll get on to my hospital. Good luck! X

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