Excess thick secretions - tracheostomy

[Claireflo]

Hi all, my dad has been suffering with excess mucus since March (when he got covid). Its been really difficult to clear despite having the cough machine, suction machine, regular nebuliser and highest level of carbocisteine. He's using a pump he brought off the Internet with a flexible tube that goes down the throat to then pull the mucus up. Other than that he has to make himself gag to be able to clear it 😔 shortly after clearing it it starts building back up and so the cycle starts again.

3 weeks ago it got even worse, he seems to have noticeable progression and his right arm got noticeably weaker at the same time. He is exhausted dealing with it for hours before going to bed, waking up in the night needing to clear it and then again in the early morning.

I've tried speaking with everyone to try to help. We've just seen the respiratory team who have put his cough assist machine to the highest level and its still not helping. I've asked several times for medicines I've seen others say they've been given (erdosteine and NACSYS). the neurologist won't prescribe them but theres a multi-agency meeting next week and the respiratory physio and consultant are putting them forward strongly for us.

The other option that's been raised is to have a trachy. I wondered if anyone else has had this or considered it. It seems very high risk, they've said dad is frail and may not make it through the op or get back out of hospital so it's not sounding like a viable option. Also he would need a high level of care that would be hard to put in place. It seems very high risk and so frustrating that this sort of thing is being considered yet they won't let him try extra meds to thin the mucus.

Sorry for the long post!

[Ellie]

Claireflo I really don't understand that Neurologist's thought process Can the doc from next week's meeting tell your dad's GP to prescibe those meds on an ongoing basis? IMO, trying those meds is imperative before even thinking about a trache.

Apart from all those very valid observations regarding the trache, there is no guarantee that secretions will lessen, in fact they may increase, but suctioning may be easier. xx

[shelly21]

Claireflo how silly that they won't prescribed. This is what I do. I have bulbar als and cough is weak.

1.5litres of water. This is a must and Ellie taught me how important this is. I have 0.5 litres in pineapple juice & coffee etc.

Hypertonic 7% solution x twice a day via nebuliser.
straight after I use cough assist.

Carbocisteine
Erdosteine
Nacsys

I was told by my respiratory consultant that some nhs areas won't allow certain meds.

I have my water through my peg so its easier.

Re trachy I have no knowledge but I know the level of care etc is higher re care.

x

[Claireflo]

Ellie I'm glad it's not just me that can't understand it. Why would you contemplate a procedure where there's a risk the patient would die rather than at least let him try some additional mucus thinning meds?

When I asked the neurologist for additional meds her response was that nothing was being withheld from him. But it clearly is! I'm just hoping the respiratory consultant and physio can get further than I have with her.

She suggested a wider tube on the suction but the physio says that's not possible. She told dad 'we'll keep chipping away at it' after we left he said 'she'd better not take too long chipping away or I'll be dead'.

Whilst I'm grateful dad still has his mobility I hate what the disease has taken from him, and everyone suffering from it (and their loved ones) xx

[Claireflo]

Thanks shelly21 my dad doesn't do coffee and struggles with more than 1.25 litres (all through the PEG and he has 7 or 8 fortisip a day and really struggles to get more in).

Other than that the only difference are the 2 additional meds that they won't give him and won't even let him try. Apparently they may cause an upset tummy and at 62kg he can't really afford to not get the full calorie intake but he is just so exhausted with it. If they just let him try it he might not get side effects or they might be able to give him something to manage it. But at least he'd have a bit of hope for a while and maybe even see some improvement x

[Ellie]

... my dad doesn't do coffee and struggles with more than 1.25 litres (all through the PEG and he has 7 or 8 fortisip a day and really struggles to get more in).

Claire, I wonder if he'd be better off using a food pump and proper tube feed, rather than having so many Fortisips. He could use the pump overnight, fully or partially, with the remainder during the day - the pump is hand-sized and comes with a dinky little backpack.

At 62kg, his water intake ideally should be around 2000ml - water intake is weight dependent, typically 35ml/kg, but it is always advisable to check in case there are contradictory issues - and perhaps not being full of Fortisips would allow for higher water intake.

[Ellie]

... after we left he said 'she'd better not take too long chipping away or I'll be dead'.

Bless him, he must be so frustrated 😟

I'd rather a top of the range ⛳ driver was used, not a piddly little wedge.

Hope you have your agenda and notes ready for the meeting! xx

[Claireflo]

Thanks Ellie, the food pump is one of the things that has apparently been suggested. I think dad is worried about pulling the tube out when he moves around overnight I've said that's very unlikely but he could try an evening feed with it first to get used to it.

I'm not sure if the pump is any more fiddly than the gravity feeding? His right hand/arm is getting weak so I suspect in a few months (hopefully longer) he'll find the feed hard to do himself but that would probably be the same for either method.

Sadly we don't get to go to the meeting, what's the point in having the person you're talking about actually present!?! we'll have to wait for an update from the physio.

[Ellie]

Wriggly kids don't dislodge their feeding sets when they're on overnight feeds, so I don't think your dad has much to fear 😏

It's a fair point about DIY feeding: there's not much involved in setting up pump feeds and it requires some degree of manual dexterity, as does gravity feeding, but the pump would only need to be attached and detached once, not faffing around with 7-8 gravity feeds.

It's yet another thing to think about 🙄 xx

[John D]

Claireflo I have just started having 1 Nutricia pump feed a day through my PEG which I have resisted upto now. Glad I am because it’s taken the pressure off trying to eat enough and relieves my wife from cooking some meals. I also take 2 Nutricia 2Cal per day so I don’t have to take as many other supplements.

Trache sounds too extreme to me.

While straightforward he will probably need help setting the pump up. It does take a few hours to take the feed all in one go depending on the rate it’s pumped through but you can start/stop/start. Dietician should be able to arrange pump.

[Claireflo]

Thanks all for your comments, I have some good news to report! The respiratory consultant and respiratory physio have worked some magic and gained agreement to try the erdosteine 😀 apparently there's a form to fill out for it to be authorised but hopefully it'll be provided in a couple of weeks.

The trachy is off the table for now. There's the possibility of trying to replace/reduce glycopyrronium with either the drops under the tongue or the patches (when I previously asked about them they weren't prescribed).

Also the dietician is visiting and hopefully looking at options for trying a pump feed.

The not so good news - sadly Dad was very upset at the appointment and is obviously very frightened by choking on the mucus especially now that its got worse. It feels like he's had enough as he's just exhausted.

I just hope one of these things can help him and alleviate it a bit. I asked about prognosis given I have a brother in America I'm trying to keep updated and she said he might want to think about visiting rather than leaving it til much later. 😔

[Ellie]

Claireflo That's great news about the erdosteine, hopefully it won't take long to come through.

I'm so sorry that your dad got upset - it's hard keeping a brave face sometimes...

Love to you both. xx

[shelly21]

That's good news re the clinic visit.
when my secretions were not managed I started to spiral down. Its a very hard part of this never ending crap disease.

I hope you're proud of yourself Claire. Keep pushing at the departments. The nhs are struggling but so are we.

Xxx

[Zante]

Claireflo I just wanted to say u are in my thoughts. I was sad to read about how u were advised to let your brother know about coming over. But I hope this new medication can help your dad and he can improve a little. Xx

[Claireflo]

Thanks all, it's amazing the difference one person can make when they go the extra mile and I feel like the respiratory physio is currently that person. If nothing else she's given us some hope that something might work.

Dad's been so brave throughout. He's stubbornly independent and is still doing little jobs around the garden so it's hard to reconcile that with someone who was described as really very frail. The concern seems to be that if he gets a chest infection he may not be able to fight it off so wise for my brother to visit incase he gets ill but hopefully he won't and we'll have some time yet.

I really appreciate your thoughts, especially with all that you are going through yourselves xx