Cough assist

[LindaB]

shelly21 Thanks for the update that’s really helpful to me as I’m due a respiratory review💙🥰

[shelly21]

Hi all. So had respiratory consultant phone mr me today. He suggested cough assist, the Erdosteine and NACSYS and also something called hypertonic for my nebulizer instead of saline.

MMG huge thank you for the recommendation.

So those struggling maybe ask your team. I'm yet to hear try it but hopefully be good x

[Ellie]

🤞 Shelly, you could do with something going your way... xx

[shelly21]

Ellie I'm certainly going to enquire. Got a phone consultation with respiratory consultant Monday. I have religiously used my nebuliser x4 times per day for the last 2 days and its starting to loosen my chest. X

[Michael Nicholas]

Ellie I had been asleep for several hours before deciding to post. I do get enough sleep.

[Ellie]

shelly21 Michael Nicholas My heart always sinks when I see posts made in the wee hours 🙁

Obviously neither of you slept too well, sorry 😟 Hoping tonight is better.

Shelly, can you get those other meds? xx

[shelly21]

Michael Nicholas have a look at mmg post above. Makes mention to some more medication that may help.

I've heard dairy causes chest congestion. I think its one of the worst parts isn't it re this disease.

Grape juice i stupidly drank lots and I really paid for it (laxative).

[Michael Nicholas]

shelly21 - I am suffering symptoms similar to those you are.

It is distressing.

Sometimes the cough-assist machine helps clear the mucus, but often not. (I find its actions very tiring.) Pineapple juice also briefly helps, The nebuliser also brings temporary relief.
Neither carbocisteine nor the glyco reach the mucus.

I have tried papaya juice and grape juice. The latter tasted horrible. The former (fermented) is expensive, difficult to obtain, and comes with advice about daily consumption limits.

My suggestion...avoid dairy products. I tried non-dairy yoghurt yesterday and it cleared the mucus for a while.

[shelly21]

MMG thank you .that is a great help. Gp yesterday just read out what was on the mnd association page!

X

[MMG]

My husband had a combination of Carbocisteine, Erdosteine and NACSYS when his secretions were really bad following a chest infection. Then dropped back to just Carbocisteine which he takes 7.5ml x 3 per day.

He was issued with a cough assist, nebuliser and suction unit at the same respiratory appointment. He is not yet on NIV but has a very weak cough.

The suction unit is a godsend.

The drugs were initially prescribed by MND consultant but reviewed by hospice.

[shelly21]

Claireflo I understand re your dad re following instructions. The list gets bigger by the month. I am one of those if I'm told I do lol.

I don't blame you chasing the departments. I am my own manager re my care. Think you have to be with this challenging disease.

Thank you for your wishes. Hopefully a blip x

[Claireflo]

Thanks Shelly, my Dad is a bit of a challenge and doesn't always follow advice! If something doesn't work immediately he writes it off as no good rather than persevering, good job I'm good at nagging!

I totally get that NHS resources are under staffed and mistakes sadly happen. I need to try to do my best for my dad, to get him the best care and the best quality of life possible so if that means ringing and emailing and asking lots of questions to seek answers then so be it. Our local community team have been great, but it's hard to hear that there's nothing more they can suggest.

Once Dad's last chest infection cleared up his peak cough flow went to the previous level. I hope your chest infection clears up soon and your lung function returns to better levels once its cleared x

[shelly21]

Hi Claire your dad sounds very problematic. I have to agree re the mistakes made. My respiratory team are so bogged under with long covid I'm being missed. Last lung function test results due Feb 8th. Consultant was honest that he hadn't received the test results and also oximetry test not done. It took further 7 wks to get the results.

Mine also is worse in the morning re stuck in my throat. But I'm hoping its the result of a recent chest infection.

I really feel you re the frustration of dealing with all this x

[Claireflo]

This is something my dad is really struggling with. He's got really thick stringy/elastic mucus that he can't bring up. It's been going on for 2 months since he had COVID. His cough is week so he started on a cough assist machine last week.

He's had 2 lots of antibiotics and just started his third lot as a recent sample suggested a respiratory infection.

He's on glycopyrronium bromide and carbocisteine (increased to 15ml liquid 4 times a day by the hospice nurse).

He's now on lansoprole twice a day, I believe to line his stomach proir to taking his meds.

He has a suction machine but barely uses it as it only clears what's in his mouth and he feels that he has a blockage by his Adams apple that he is choking on. He has 'attacks' up to 4 times a day (usually late at night and early morning when he isn't moving around doing stuff) when he feels that he's choking, they can take an hour plus to clear and then it's back again straight away. He's using a kingsize box of tissues plus daily and putting them down his throat to make himself sick. He tried pineapple juice but felt very acidy.

It's really affecting his quality of life, he's been in A&E once already. The physio has tried all he can suggest, the speech therapist can't suggest anything more.

The sleep/NIV Clinic are now doing an urgent review of the cough assist settings on Friday (after offering an appointment for 20 June!)

I've contacted the coordinator who said the consultant would send a prescription for new medication. After a week it arrived and its for Carbocisteine (that he's already on) but at a lower level and by capsule - he's using a feeding tube and can't swallow easily / safely. I'm beyond frustrated!

The hospice nurse suggested increasing his fluids (thankfully someone else to nag him about fluids), increased carbocisteine, nebuliser every 2-4 hours, humidifier for the room and she's looking into home suction (not sure what this is as he's got a suction machine).

If this doesn't work along with the antibiotics I don't know how much longer he can carry on like this, it's completely taken over his daily life.

I wish I had some useful suggestions to help but despite linking in with every different care team (repeatedly!) we haven't found anything that has helped as yet.

Hope you find something works for you.
Claire

[shelly21]

Ellie yes re do the test in two weeks. I did stop pineapple juice but started again Sunday.

Its the tail end of a chest infection. Just not shifting especially first thing in the morning x