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Thread: Ventilator queries

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    Ventilator queries

    Hi everyone

    Just a quick bit of feed back needed from those that have a ventilator, Mick uses his ventilator every night and has only had it since July as he was having CO2 headaches and his lung function had dropped more than they liked within a month. The headaches and neckache have completely gone which is great,but he is now experiencing more breathlessness during the day and we don't go back to clinic until October so was wondering is this normal ?? Ang

  2. #2
    Batty
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    Ive been in the same situation since march, and use the ventilator during the daytime to top up when needed. You would be best to contact your consultant to see if he advises the same, if I need a lot in the daytime it is usually down to having secretions in the lungs and I have a cough assist machine to help this. Regards Mark

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    Thanks Mark so does using the ventilator make you more dependant then ?
    I didn't realise he would maybe need it for daytime too, not so soon. Ang

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    Forum Member Jeannie's Avatar
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    Hi Ang,

    I agree with Mark. Contact Mick's clinic asap, better be safe than sorry because everyone is different. It could be a plug of phlegm which will cause more breathless.
    Best wishes

    Jeannie

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    Batty
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    Hi Ang, I have asked the same question about dependency and the answers I get is that we are all different, everyday for me is different. Some say while you are using the ventilator it gives your muscles a rest others say as your progression moves on the you will need the ventilator. Regards Mark

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    Forum Member computatec's Avatar
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    Hi Ang

    The clinic that supplied the ventillator normally give you a telephone number for you to call with queries like this. There is usually a six week follow up where the patient comes to a day case clinic for a review. This is such an important area that you can't drag your heals. At the first sign of difficulty you must phone in and ask for advice.

    I got my ventilator from Papworth, and the specialist explained that when the diphragm muscle becomes weakened we need help from a ventilator when lying down, but while we were up gravity helped the diaphragm and it was not needed during the day. However, in my case, I can not support my body so spend most of the day slumped in a chair, so my lungs cannot expand properly. I try all sorts of pillows and back supports to try and improve my posture and keep my lungs open and working well.

    Clive

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    Quote Originally Posted by computatec View Post
    Hi Ang

    The clinic that supplied the ventillator normally give you a telephone number for you to call with queries like this. There is usually a six week follow up where the patient comes to a day case clinic for a review. This is such an important area that you can't drag your heals. At the first sign of difficulty you must phone in and ask for advice.

    I got my ventilator from Papworth, and the specialist explained that when the diphragm muscle becomes weakened we need help from a ventilator when lying down, but while we were up gravity helped the diaphragm and it was not needed during the day. However, in my case, I can not support my body so spend most of the day slumped in a chair, so my lungs cannot expand properly. I try all sorts of pillows and back supports to try and improve my posture and keep my lungs open and working well.

    Clive
    Hi Clive
    That actually makes sense as Mick is also slumped in a chair all day due to losing his core muscle and he cant sleep flat but at around 45 degree angle. Our Physio has been today and she said to ring the lung centre if he wasn't happy as he is also getting swelling of the feet, again probably because of immobility and posture. He said he felt a little better today with the breathlessness and has agreed that if it doesn't improve to contact the centre, we don't go back until October and like you thought there would be a six week follow up, but when he was released I rang them and asked and they said his next appointment would be October. Its so funny you mentioned pillows as he is always complaining and actually just been out to buy him yet more to try. Ang

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    Forum Member computatec's Avatar
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    Quote Originally Posted by angnmick View Post
    Hi Clive
    That actually makes sense as Mick is also slumped in a chair all day due to losing his core muscle and he cant sleep flat but at around 45 degree angle. Our Physio has been today and she said to ring the lung centre if he wasn't happy as he is also getting swelling of the feet, again probably because of immobility and posture. He said he felt a little better today with the breathlessness and has agreed that if it doesn't improve to contact the centre, we don't go back until October and like you thought there would be a six week follow up, but when he was released I rang them and asked and they said his next appointment would be October. Its so funny you mentioned pillows as he is always complaining and actually just been out to buy him yet more to try. Ang
    Hi Ang

    I am going to Papworth on Tuesday for my 6 weekly review and I have also done an all night oxymeter recording in preparation for the checkup. This will be my second checkup as they had me up there after two weeks with the nippy.

    I had very swolen left leg and foot but an older doctor sugested it might be a side effect of Amlodopine, a blood pressure tablet. I stopped taking it and the swelling went away completely. The doc said that when battling with MND it was inapropriate to be fussing about blood pressure and all medications had side effects so now I take nothing at all. The foot swelling can be a side effect of the drugs ending in ...pine.

    Do you have a rise and recline chair for Mick? The MNDA can help you with a loan chair.

    Clive

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    Hi Clive
    Thanks for being so helpful, We do have a loaner rise and recline and can't find that any of his medication ends in pine, but PT suggested a blood test from the docs to see if maybe his protein or maybe something else could be causing it just to rule out, but she does think it will just be mobility issues as he can't reposition his legs or feet himself . Hope your check up goes well, Sounds like you and Mick may be at similar stages, think I will feel a little easier when he has had his first check up too.
    Can I ask does it make you, make a noise once your a sleep strange question I know but Mick makes a sort of loud groan on it which he never even snored previously. Thanks Ang

  10. #10
    Forum Member computatec's Avatar
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    Hi Ang

    I have just checked with my wife and she says I only do heavy breathing noises. Previousli I snored so badly it was a problem for her.

    My guess is that the mask is not well fitted, pinching the airways or causing mouth breathing. My ventilator is a Nippy 3+ and I have a mask with a very soft seal, like the skirt on a hovercraft. If Micks is the same I can give some advice on fitting.

    I have to tell you that I have not taken easily to the ventilator and have woken up every three hours since I started until very recently. Last night I slept seven whole hours before waking, which is the best sleep ever.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

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