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Living with a Ventilator

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  • Sheila
    replied
    Hi Dina!
    Thanks for your reply! It only happens when I am lying down, a bit like a hiccup. Makes my body jump!! Sometimes my chest is hot and aching. I get up and it goes! Very strange. I went to the doctors with this hot chest and he thought it was reflux! so I got some medicine.

    Thanks for your help
    Sheila x

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  • Ellie
    replied
    Yes Sheila, could you please explain more so we can help you?

    Has it only recently started?

    Is it just chest muscles that jerk rather than a 'startle' type of reflex?

    And have you any breathlessness when it happens?

    Love Ellie.

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  • Gillette
    replied
    Hi Sheila,

    I’m afraid I don’t understand what you mean by ‘jerk’.

    The Nippy is used when your chest muscles have lost some of their strength and your lungs are no longer able to expel enough carbon dioxide. The ventilator is used overnight and it helps your lungs to do their work. It simply uses the air in the room, not an oxygen supply. It takes several hours to reach the point where it reduces the CO2 levels which is why it is used overnight..

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  • Sheila
    replied
    Hi everyone, just need a bit of help. I am not using a nippy yet, but I notice when I wake up or try and have a nap. I get a jerk reaction from my chest, it can happen a few times. I mentioned this to my nurse and she said it was nothing. Does anyone have this?
    Sheila

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  • Ellie
    replied
    When I saw that "h", I thought, Oh Oh....

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  • Gillette
    replied
    Originally posted by nunhead_man View Post
    And Dinah - I do not think the family think I am stoic either, since I occasionally throw my toys out of the pram about this bloody disease!
    And Andy, my toys have not just been thrown out of my pram but directly at *you* as you have scored a direct hit on my Achilles heel. I am unbelievably touchy about people getting my name wrong. (I’m joking this time but beware...)

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  • nunhead_man
    replied
    Hi Ellie,

    Thank you for calling me macho - I will pass that on to the family and see what they think!

    And Dina - I do not think the family think I am stoic either, since I occasionally throw my toys out of the pram about this bloody disease!

    I now have an answer to whether I need to wear the mask when I am doing my overnight test as there was a missing letter which arrived in the post today with apologies, saying it ought to be the packet with the equipment.

    I am waiting to hear if I can pop in and find a different mask
    Last edited by nunhead_man; 13 November 2019, 12:28. Reason: Dina name change - voice dictation smacked

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  • Ellie
    replied
    Andy, how macho are you

    There are lots of full face masks out there, so I'm sure there's one that won's cause you skin trauma.

    My one, for example, has different settings at forehead level allowing adjustments as to how the mask sits on the bridge of the nose itself (Joyce Gel Full Face)

    I'm sure (I hope...) St Thomas's will find you a mask so you won't look as if you've been in the boxing ring!

    Love Ellie.

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  • Gillette
    replied
    Originally posted by nunhead_man View Post
    Hi Dina

    No, I am afraid that was properly my fault - probably a man thing, putting up with a bit of pain and discomfort until my wife pointed out that what I think is a bit of a growth on the side of my nose has had split open and was bleeding!
    ...
    I am now talking to St Thomas is about trying to sort this out.
    Hi Andy

    It’s good to hear you are being sensible. With MND being stoic is not a good option - it tends to come back and bite you on the bottom!

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  • nunhead_man
    replied
    Hi Dina

    No, I am afraid that was properly my fault - probably a man thing, putting up with a bit of pain and discomfort until my wife pointed out that what I think is a bit of a growth on the side of my nose has had split open and was bleeding!

    I have had one or 2 skin tags removed in the past - as I used to cycle a lot, come rain, come shine, I have always been on the lookout for bits of growths that might be cancerous.

    I am now talking to St Thomas is about trying to sort this out.

    Leave a comment:


  • nunhead_man
    replied
    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!

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  • Gillette
    replied
    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.

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  • Terry
    replied
    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

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  • nunhead_man
    replied
    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.

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  • Ellie
    replied
    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.

    Leave a comment:

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