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    Oximetry readings

    I’ve just received the results of overnight oximetry readings, and it seems they were fine so will have them done again in 3 months. I have Bulbar onset, diagnosed a year ago, and I now have practically no speech, very poor swallow ( I have a PEG) although I can still walk. I become very breathless if I try to use my voice while walking , and also when trying to swallow. Would it not be advisable to also do oximetry readings during the day during normal activities ? This is when I feel most breathless. Any thoughts or similar experiences out there? Love, Lizzie x

    #2
    Did they give you the overnight results (figures) Lizzie? Great to hear that your results were good.

    It's no harm to have your own Sats monitor - it helps give a snapshot of your SpO2 level at any one time, rather than an overview but, as you say you get breathless on activity, the monitor will pick up any cause and effect.

    My monitor can take a minute or so to stabilise readings, so leave yours on for a few mins. They're widely available and not expensive (maybe don't go bargain basement though!)

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Thanks for your reply Ellie. No, I didn’t get the readings because someone phoned.....and I can’t speak, so they left a voicemail. Not really very satisfactory. I will get my own monitor as you suggest and try it during the day. Love Lizzie

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        #4
        I wish people would automatically give us proper results and discuss them with us in detail, I find just being told they're fine is not treating me as an intelligent adult who has a right to know any results. I have had 3 blood gas tests so far, and she just says fine, and I am now pushing for figures so I can see any change. I have these tests in a drive through, using a prick to my ear. I asked her last time to explain the tests she was doing, and what results are okay. She said bicarbonate gave the most reliable results (not so dependent on when you do the test) and should be less than 7. She then told me my results were fine, and only when pressed, said my bicarbonate levels was 6.5, and when I asked what it was last time in January, she didn't know and had to look it up. It was 5 in January. I have asked for all my results of the 3 testing sessions. It is important for me to know if I am overworrying about my lungs (as being told they're fine all the time), or if I getting near needing NIV. This is very important to me, because I am being asked about having a PEG, which I have been resisting because I seem to be deteriorating slowly, and my swallowing and weight have not deteriorated for a while and may have slightly improved (maybe now stress of diagnosis and house move are passed). But I know if my lungs deteriorate too much, PEG will be more tricky, and longer waiting list. I sometimes have headaches on waking, and am very tired these days, as well as breathless.
        Sorry, Lizzie, I am wondering whether I ought to put this all in another thread, don't want to take away from your question. Sounds like you too need more info and discussion about best way to monitor, and so difficult if you're not able to just talk. Hope your own monitor helps. x
        Diagnosed July 2020, ALS bulbar onset.

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          #5
          I couldn't agree more, Heather!! Why on earth don't Doctors etc. automatically give full test results to people who want them - well, I guess it's because they think they'll have to explain every last line of the results and how much of their time it'll 'waste' 😫 I appreciate not everyone wants to, or needs to, know their test results, which is fine too.

          I politely told my healthcare professionals right from the start that I needed to know my test results so, if it was easier for them, I'd just take a photo of the results page (or rather, hubby did) and now I have a record of lots of different tests to keep me entertained 😄

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            makes me laugh when we see the doctor and we are asked have you been tested for............ ? so we look blankly at him. ok so have you had your blood test for............? i said well he's given loads of blood but we have no idea what for and no idea what the results are. sometimes i think why on earth do they ask us when they never share what they are doing, testing for or even letting us in on the results unless we ask but how can we ask when we dont know whats going on. its a mystery to me.

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