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Thread: Living with a Ventilator

  1. #11
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    Quote Originally Posted by Ellie View Post
    Hi Miss M,

    Try short periods of daytime use as Terry said, to get used to the feeling. Using BiPAP will make your life more comfortable.

    Given you've tried nasal pillows, which have the least facial coverage, and still aren't comfortable wearing any, I wonder about taking a small dose of an anti-anxiety med before bed for a few nights? It's "mind over matter", which I know is easy for me to say Ask your nurse.

    I wear a Total Face Mask at night, which is very comfy but I'm not claustrophobic.

    Ellie x.
    Thanks for advice and my district nurse is sorting out something to help me relax a bit more and hopefully use the nippy machine to improve my breathing.
    The longest I have worn my mask is 1 hour and 20 minutes but that was a while back.My main concern is that my arms and hands are now weakened and I won't in time be able to remove the mask when I want to.

  2. #12
    Forum Member Ellie's Avatar
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    Yes I know that concern too! My arms & hands are next to useless so I need someone to put on my mask at night and remove it every morning.
    I've no access to my sleeping beauty at night as he sought sanctuary in the spare room a while back!!!

    All I know is the Nippy improves my life

    Good luck Miss Muffett.

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

  3. #13
    Forum Member Terry's Avatar
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    I think 1 hr 20 mins is quite good and you could keep trying for an hour and build up a bit of trust.

    Let us know what the nurse says.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #14
    Forum Member nunhead_man's Avatar
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    Good afternoon,

    I see this is quite an old thread, but it is the obvious one for which I need to add my query.

    I use a nippy breathing machine, more for sleep apnoea than for my motor neurone disease, but it is useful for that, of course, given the oxygen loss that occurs with sleep apnoea.

    The mask that St Thomas's Hospital (the Lane Fox unit) have provided to me is giving me issues in that it seems to have opened up some sort of growth I have on the left-hand side of the bridge of my nose and marks the bridge of my nose during use - the mark fades during the day to be woken up again, as it were, as I use the mask during the next night.

    Do folk here have a recommendation about a different sort of mask that does not have to rest on the bridge of my nose in order to make a good seal?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  5. #15
    Forum Member Gillette's Avatar
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    Hi Andy

    I use a Nippy 3 overnight. The mask I use sits beneath the nostrils and doesnít actually touch the front or sides of the nose. Itís the ResMed AirFit N30i

    The packaging says you can see more at :

    ResMed.com/Support/AirFitN30i
    Dina

    Trying to keep positive, but not always managing.

  6. #16
    Forum Member Ellie's Avatar
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    Andy,

    Hopefully that N30 mask will suit you, but, if you're a mouth breather, a nasal pillow may not be the best option - full face masks are better because of their better seal.

    Is your mask rim silicone or gel? (Gel is softer) You might solve the issue using barrier cream or a thin plaster (eg Duoderm extra thin) to protect the area.

    Or there is a full face mask, the Respironics Amara View, picture below, which doesn't go on the bridge of the nose.

    Respironics Amara View.jpg


    I wear a full face gel mask or a total face mask, alternating between the two styles - I can't wear any nasal type mask as my jaw now cannot stay closed, making me breathe through my mouth.

    Did you ask your Resp team?

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

  7. #17
    Forum Member nunhead_man's Avatar
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    Good afternoon and thank you both

    The mask that St Thomas's have provided as a kind of gel boundary to it that makes the seal with my face, but I think it gets crushed where it crosses the bridge of my nose.

    As it is for sleep apnoea I guess it needs to cover both my nose and my mouth as of course I do breathe through my mouth sometimes.

    This is the 2nd mask I have had in a period of about 12 months as the 1st one, the gel (?) skirt split and the nurse who exchanged it for me, warned me against using face cream which indeed I had be used been using before because it affected the Velcro and what I am calling the skirt?

    I need to talk to St Thomas's anyway because they have sent me overnight oxygen monitoring device and I am not sure whether they want me to use the nippy or not when I use it.
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  8. #18
    Forum Member Terry's Avatar
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    Hi Andy;

    I have sleep apnoea and I think that I stop breathing around 35 times, not sure if that's all night or an hour????????

    My oxygen levels are quite good over night so they've decided not to give me anything. I have always had a bit of sleep apnoea and my over night tests have not changed much in seven years.

    Hope you're the same.

    Love Terry

  9. #19
    Forum Member Gillette's Avatar
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    Andy, when you were fitted with your mask did they try a wide selection with you? They should be able to offer you many different masks to try.
    Dina

    Trying to keep positive, but not always managing.

  10. #20
    Forum Member nunhead_man's Avatar
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    Hi Terry

    The monitoring I had showed I stop breathing, perhaps 8 times a night.

    My oxygen level seems to hover around between 92% and a 100% and has been for a couple of years - long may that continue!
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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