Losing my swallow

[GaryM]

Over the last few days I've been having increasing difficulty with swallowing. Everything seems to result in a pool of saliva lodged in my throat which makes me 'growl' trying to clear it. I contacted the SaLT and she came to see me this morning and advised that I should give up on eating for calories and go over to tube feeding to get the bulk of my nutrition needs. She said just eat small amounts for enjoyment and if it's not enjoyable don't bother eating it. So I've had two bottles of Ensure earlier and I'm going to have two more later. Louise has just made me a fruit smoothie, which we thought might go down okay, but even that's making me cough. Also my throat feels 'hot' which is odd.

[matthew55]

Welcome to my world. I have a pump feed but I can still swallow albeit weakly. When I have to drink water it always makes me cough. Isn't it a wonderful world mate. 😉x

[Ellie]

Sorry to hear that, Gary, it's just pants to know functions are ebbing away.

Safety should come first so, if that means reducing oral intake, it's something to seriously consider - aspiration can happen very easily, so is to be avoided if you want to steer clear of chest infections and pneumonia.

If you are happy to stick with bolus feeding, great, if not or you maybe want to mix & match, get a pump - might be no harm having one in the house, along with giving sets and some food containers.

Even mild citrus fruit will catch your breath. And... any chance your hot throat is an infected throat??

If saliva is an issue throughout the day, it can be reduced.

Big hug to you.

Love Ellie.

[GaryM]

Sorry to hear that, Gary, it's just pants to know functions are ebbing away.

Safety should come first so, if that means reducing oral intake, it's something to seriously consider - aspiration can happen very easily, so is to be avoided if you want to steer clear of chest infections and pneumonia.

If you are happy to stick with bolus feeding, great, if not or you maybe want to mix & match, get a pump - might be no harm having one in the house, along with giving sets and some food containers.

Even mild citrus fruit will catch your breath. And... any chance your hot throat is an infected throat??

If saliva is an issue throughout the day, it can be reduced.

Big hug to you.

Love Ellie.

Thanks Ellie. A chest infection would probably finish me off, considering my lung function is only about 50% of what it should be. The dietitian has been informed of my situation by the SaLT and she was already booked in to see me next week. I think pump feeding might be preferable to three bolus feeds a day, each one taking about 1.5 hours at the moment. I could probably increase the feed rate, but I was being cautious. I'm not sure how I would know if I had an infection. I'm using half a hyoscine patch at the moment.

[Ellie]

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 😘

[denise]

Gary Stephen is getting a new back pack for his pump and grub. The one I converted was big and bulky. He looked more like one of the Ghostbusters.
it's going well and I know he's getting nutrition and he doesn't even notice it's happening.
he's also got a breathing machine and thats been really good for him. He's been sleeping well and I'm sure the nutrition has helped too.
only thing wrong is him singing along to the good, the bad and the ugly which has ended in a coughing fit. Stupid *** 😩

[GaryM]

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.

[matthew55]

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

[GaryM]

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?

[Ellie]

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.

[matthew55]

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

[GaryM]

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.

[GaryM]

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 ?

[Ellie]

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

[GaryM]

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. 😉