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Losing my swallow

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  • GaryM
    replied
    Originally posted by DJW View Post
    Caution when increasing fibre make sure you also are taking enough liquid or the fibre will have the opposite effect. X
    Thanks Dennis. I didn't realise that. I'm on two bottles with fibre out of six in total. 5g per bottle.

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  • DJW
    replied
    Caution when increasing fibre make sure you also are taking enough liquid or the fibre will have the opposite effect. X

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  • Ellie
    replied
    GaryM If you're looking to increase your fibre intake, there are high-fibre supplements in liquid or powder form. I used the liquid for a while and it improved my bowels - the powder form can end up like wallpaper paste, not great when it's going through a tube! If anyone is thinking of using supplements, start off on a low dose as the sudden increase in fibre can cause cramps and wind.

    These days I blend up fruit (mostly pear, apple, banana) mixed with water and take it through the tube. I am also on fibre-enriched feeds but still need laxatives, even though I get about 30g of fibre daily.

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  • matthew55
    replied
    I no idea about how much fibre. I just hope that my feed has some in it. But honestlly I cant pass anything bigger than a golf ball so it's a moot point init? 😁x

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  • GaryM
    replied
    Originally posted by Ellie View Post
    You're not too far out - I get a 6 month supply of syringes and giving sets, plus 30 bottles of feed every month, then there's all my meds 🙄
    I might just keep that to myself. Louise may resort to the shovel across the back of the head if she sees it. 😁

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  • Ellie
    replied
    Originally posted by GaryM View Post
    We're applying for planning permission for the bottle store. 😉
    You're not too far out - I get a 6 month supply of syringes and giving sets, plus 30 bottles of feed every month, then there's all my meds 🙄

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  • GaryM
    replied
    Originally posted by Ellie View Post
    GaryM How did get on with the Dietitian - happy enough with what was said?
    Yes, she's recommended six bottles a day to start with (1800 cals) via bolus three times a day. We're just trying that for now. She mentioned 2cal, but I'm sticking with 1.5 for now. She's happy to supply a pump and even a rucksack if I want. We've got the bolus feeds down to about an hour now. We're applying for planning permission for the bottle store. 😉

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  • Ellie
    replied
    GaryM How did get on with the Dietitian - happy enough with what was said?

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  • GaryM
    replied
    Originally posted by matthew55 View Post
    I have actually put weight ON using a pump feed during the day. I'd given up hope. 😁x
    My weight had been holding up reasonably well until about two weeks ago. I might get a pump in a few weeks. How much fibre do you have each day matthew55 ?

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  • GaryM
    replied
    Originally posted by Ellie View Post
    Bit of an affront 🤔


    Gary, not to put too fine a point on it, but vomiting for anyone with an impaired swallow is a particularly horrific experience, potentially dangerous too, so it's always advisable to have antisickness meds in the house - I keep a bottle of Domperidone in my medicine cupboard.

    How ironic if it is the hyoscine causing your nausea - it itself is for preventing travel sickness 😏

    I know you're 'only' nauseous, but it's something for everyone to consider (NIV users too)

    Love Ellie.

    I meant he'll be talking to Louise because I can't speak, not well enough to be understood over the phone anyway.

    I'm not sure what else could be causing the nausea. In both cases I'd just walked from one part of the house to another and felt a bit light headed. Maybe I should check my blood pressure.

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  • matthew55
    replied
    I have actually put weight ON using a pump feed during the day. I'd given up hope. 😁x

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  • Ellie
    replied
    Originally posted by GaryM View Post
    I've got a phone appointment tomorrow with the breathing consultant. I'm not sure what that will achieve as he'll just be talking to Louise.
    Bit of an affront 🤔


    Gary, not to put too fine a point on it, but vomiting for anyone with an impaired swallow is a particularly horrific experience, potentially dangerous too, so it's always advisable to have antisickness meds in the house - I keep a bottle of Domperidone in my medicine cupboard.

    How ironic if it is the hyoscine causing your nausea - it itself is for preventing travel sickness 😏

    I know you're 'only' nauseous, but it's something for everyone to consider (NIV users too)

    Love Ellie.


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  • GaryM
    replied
    Originally posted by Ellie View Post
    If your swallow went suddenly, it's worth getting the GP to look at your throat and take a listen to your lungs while they're at it - better to be sure, so what if it's a 'wasted journey'.

    .........

    And, sorry to be Mistress of Doom & Gloom, but get the ball rolling on NIV. Gary, I know how crap this is for you, we all do, and I hope you get into a plateau mode after the rough few months of relentless progression you've had 😘
    GP came last night and he listened to my chest. It was okay. Also I've got a phone appointment tomorrow with the breathing consultant. I'm not sure what that will achieve as he'll just be talking to Louise.

    On a separate note, I've had nausea twice in the last few days. Very unusual for me so maybe it's the hyoscine patch. Who knows?

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  • matthew55
    replied
    Carbocisteine and Lansoprazole are working wonders for me in that department 😁👍x

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  • GaryM
    replied
    Originally posted by Ellie View Post
    If your swallow went suddenly, it's worth getting the GP to look at your throat and take a listen to your lungs while they're at it - better to be sure, so what if it's a 'wasted journey'.

    That feeding regimen sounds onerous - a pump in one of our much-loved jetpacks would free both you and Louise up!

    And, sorry to be Mistress of Doom & Gloom, but get the ball rolling on NIV. Gary, I know how crap this is for you, we all do, and I hope you get into a plateau mode after the rough few months of relentless progression you've had 😘
    GP phoned this afternoon. First contact I've had from them. He's coming to see me next Tuesday. The SaLT told me to ask him to prescribe gaviscon advance in case there was some reflux involved, which he has done.

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