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Thread: Breathing

  1. #1
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    Breathing

    Hi All,

    Had another lung function test and my lungs capacity is at 50% still but the blood test showed that I have CO2 in blood. Apparently under 6 is normal and mine is 6.1

    December 2019 I had my first lung function test and the lung capacity was 50% but I didn't have CO2 in blood then.
    Have to start NIV at nigh soon.

    The lady from the lung function was very eager to tell me that the prognosis is not good. What are your thoughts?

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Arta, I don’t know how to translate your results but I wanted to send you my thoughts and best wishes. Are you still doing breath stacking? I ought to get back to it. I hope that you can hold on to your current score for a good while yet and reduce carbon dioxide in your blood through breathing exercises. But who am I to comment, sorry if you’ve already tried everything to improve things. In that case I wouldn’t have helped

    I haven’t had my breathing or bloods checked for about 5 months. Breathing was 75%, a bit lower than at my previous 3 monthly clinic. My clinic isn’t doing face to face appointments currently. My next appointment is mid June but I suspect that this one will be on WhatsApp video the same as my last.

    Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Ellie's Avatar
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    Oh Arta, how utterly insensitive of that lady to say what she said, when the reality is she hasn't a clue about your prognosis

    The great news is your lung capacity hasn't deteriorated in 5 months - that's hugely positive!

    Your CO2 is only marginally above normal and you're starting NIV soon, another positive thing, which should reduce that CO2.

    I've used overnight NIV for about 10 years and my last full set of pulmonary tests was in 2013, when my FVC was 26%. I daresay that Respiratory Scientist rated my longevity as he said it was so difficult for me to perform the tests, he "wouldn't put me through it again". Now I know that's my experience and that everyone is different, but I'm telling you to show that nobody knows a prognosis for sure.

    If I can suggest a mask to ask for when you get the NIV, I found the Amara View by Philips Respironics, to be by far the most comfortable mask I've had over the years. Try to get 2 different masks to try - usually they give a 'full face' mask but a substantial number of people find it hurts / marks the bridge of their nose, so it's handy to have an alternative type and not to give up or only use the NIV for 2-3hrs because it hurts!! That Amara View mask doesn't go on the nose itself.

    All the best.

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

  4. #4
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    Quote Originally Posted by Lynne K View Post
    Hi Arta, I don’t know how to translate your results but I wanted to send you my thoughts and best wishes. Are you still doing breath stacking? I ought to get back to it. I hope that you can hold on to your current score for a good while yet and reduce carbon dioxide in your blood through breathing exercises. But who am I to comment, sorry if you’ve already tried everything to improve things. In that case I wouldn’t have helped

    I haven’t had my breathing or bloods checked for about 5 months. Breathing was 75%, a bit lower than at my previous 3 monthly clinic. My clinic isn’t doing face to face appointments currently. My next appointment is mid June but I suspect that this one will be on WhatsApp video the same as my last.

    Take care, Lynne
    Thank you for your response. Ive never been given any breathing exercises and when I asked today she said they don't recommend exercises as they are not sure if they are beneeficial. I don't agree with them at all. xx

  5. #5
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    Quote Originally Posted by Ellie View Post
    Oh Arta, how utterly insensitive of that lady to say what she said, when the reality is she hasn't a clue about your prognosis

    The great news is your lung capacity hasn't deteriorated in 5 months - that's hugely positive!

    Your CO2 is only marginally above normal and you're starting NIV soon, another positive thing, which should reduce that CO2.

    I've used overnight NIV for about 10 years and my last full set of pulmonary tests was in 2013, when my FVC was 26%. I daresay that Respiratory Scientist rated my longevity as he said it was so difficult for me to perform the tests, he "wouldn't put me through it again". Now I know that's my experience and that everyone is different, but I'm telling you to show that nobody knows a prognosis for sure.

    If I can suggest a mask to ask for when you get the NIV, I found the Amara View by Philips Respironics, to be by far the most comfortable mask I've had over the years. Try to get 2 different masks to try - usually they give a 'full face' mask but a substantial number of people find it hurts / marks the bridge of their nose, so it's handy to have an alternative type and not to give up or only use the NIV for 2-3hrs because it hurts!! That Amara View mask doesn't go on the nose itself.

    All the best.

    Love Ellie.
    Thank you so much Ellie. She's upset me a lot today. I don't know why but every time I see respiratory team, they seem to have a very bleak outlook whereas my neurologist is more positive.
    I"ll ask about the masks. xx

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