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Neuro Rehab Community Team (Physio) visit yesterday💙

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  • Ellie
    replied
    ShelleyMarie Hope Dougee has a comfortable night tonight - send him our best.

    And you try to have an early night! 👍😘

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  • LindaB
    replied
    ShelleyMarie sounds an absolute nightmare day & night. Hope today is better & less stressful🙏xx

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  • ShelleyMarie
    replied
    Originally posted by Ellie View Post
    ShelleyMarie If he isn't already on it, maybe also ask about Carbocisteine, a medicine which can help thin secretions, making them easier to cough up (with or without a cough assist device) xx
    He is already on Carbocisteine. Appointment yesterday, decline in all areas. They are admitting him today for sleep study / training NIV and cough assist. Got home yesterday and Doug had a strange turn, rolling eyes, slurring speech, nausea. I genuinely thought he was having a stroke. Phoned an ambulance approx 8 pm - by midnight, still not arrived and after managing to get some fluids into him, he became more stable. Thinking he may have been dehydrated from the day at hospital. Went to bed and then woken in early hours by ambulance crew querying why we’d cancelled. Therefore, even more tired.

    anyway, we’re off to Papworth today. Fingers crossed these things will begin to help him.

    Leave a comment:


  • Ellie
    replied
    ShelleyMarie If he isn't already on it, maybe also ask about Carbocisteine, a medicine which can help thin secretions, making them easier to cough up (with or without a cough assist device) xx

    Leave a comment:


  • ShelleyMarie
    replied
    Originally posted by Ellie View Post
    A warm welcome to the forum ShelleyMarie sorry to hear that your husband is poorly.

    I don't know how long he's been taking the antibiotics but, if he hasn't improved after a few days, he may need stronger ones or, I'm sorry to say, IV antibiotics.

    It's great that he has an appt at Papworth tomorrow.

    Wishing you both all the best.

    Love Ellie xx
    Thank you Ellie. I am hoping to talk to them again tomorrow about cough assist as he gets exhausted trying to clear mucus. Also, may be time for NIV. I think we’ve been fobbed off at previous appointments when querying cough assist and now feels like we’ve hit a crisis. Frustrating and scary.

    Leave a comment:


  • shelly21
    replied
    Hi re breathlessness my palliative care doctor prescribed it for pain but she also said 5mg (low dose) is used for breathlessness.

    Linda & shelleymarie don't know if this would help x

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  • Ellie
    replied
    A warm welcome to the forum ShelleyMarie sorry to hear that your husband is poorly.

    I don't know how long he's been taking the antibiotics but, if he hasn't improved after a few days, he may need stronger ones or, I'm sorry to say, IV antibiotics.

    It's great that he has an appt at Papworth tomorrow.

    Wishing you both all the best.

    Love Ellie xx

    Leave a comment:


  • ShelleyMarie
    replied
    My husband is suffering with this right now. We also had a home visit from a GP who told him he had a upper respiratory infection and gave him antibiotics. Nothing has improved. His blood pressure was really high and blood oxygen is 91/92. He hasn’t slept properly for about a fortnight and is exhausted. He is not on NIV yet! Fortunately, we have an appointment at Papworth tomorrow morning. We need solutions as this is so stressful.

    I hope things have settled for you.

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  • LindaB
    replied
    Originally posted by Ellie View Post
    LindaB Definitely not Covid?? 😘😘
    Not covid...🙏💙

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  • Ellie
    replied
    LindaB Definitely not Covid?? 😘😘

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  • LindaB
    replied
    Heather R feeling much better but still overly breathless IMO.

    In defence of the physio I don't think she overly pressed me but my post may have been badly written. My view is there may be a blood pressure issue...keeping an eye on it.

    Going to hospital when mobility...breathing etc is a problem to me is all wrong. We deserve community support...maybe there needs to be a campaign around this?

    So sorry to hear you had a stressful day ....will read your post with great interest.

    💙😘

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  • Heather R
    replied
    Hope you're feeling better today Linda. How insensitive to press you when you were feeling so breathless and tired, no wonder the blood pressure rose. I was impressed when you said someone was giving you a home visit, but sorry they didn't do equipment, though hopefully you are referred now. I had a stressful day yesterday going to the hospital respiratory physios, but will do a new post for this. xx

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  • Tabbycat
    replied
    LindaB thanks for posting the link. That's a really useful resource.

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  • LindaB
    replied
    https://www.acprc.org.uk/publication...tion-leaflets/

    How to cope with being short of breath - breathing exercises

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  • LindaB
    replied
    Thanks Deb I will be sending back the 2-wheeled frame they left me🙄

    Hope you're enjoying your hols😘😘💙

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