Cliff

[skipwork]

I have severe bronchiectasis, sarcoidosis, lung fibrosis with honeycombing in upper lobes. Despite 3 x 1 hour drainage sessions, I have trouble when going to bed at night. Grunting and clearing for ages. I was kept awake for 3 hours one night before I slept. I have an Atrovent inhaler. My bed is tipped up 7 inches at the head and also I have a bed wedge under the pillow. PLEASE HELP. AT WITS END.

[MELNEL]

Hi cliff, I would suggest that you get in touch with your GP or consultant to discuss this problem and get support to see that this get sorted out for you. Sorry to hear that you been not well. I hope that either can do something for you.

Take care and keep up updated that something has changed. 🙏🌹🙏

[skipwork in reply to MELNEL]

Have been to my GP, the Royal Brompton, my own Lung Specialist, but they do no give any coping mechanisms for my problem of grunting and clearing for long periods before I sleep and during sleep.. Who can I get help from?

[MELNEL in reply to skipwork]

You could call the nurses here on Blf, you find the numbers on about on the home button. Or let you refer to another consultant. Sorry not much help, but don't give up. Take care best wishes 😃🌹💗

[skipwork in reply to MELNEL]

Thank you. Consultants keep telling me in technical terms what problems I have. They are brilliant.... some conditions which I already know.......brochiectasis, sarcoidosis, lung fibrosis. A consultation at the Brompton was very good and the Professor sent two sheets about my condition to the GP & me, but no coping mechanisms for my left lung. (Mind you he did identify an anti-biotic I needed). I will also try AeroBika along with all the other mediations before I do my 3 x 1 hour daily drainage sessions. Kind of you to reply.

[Patk1 in reply to skipwork]

Hiya.do u use nebuliser prior to lung clearance? I find use ventolin neb,hypertronic saline neb,then ventolin neb helps.i tend to do that x2 day but I'm very aware of mucous in lungs and clear it approx 2hrly - not dedicated lung clearance - just cough,huff etc to get up what's there,even during night.i do wake ea cpl hrs so I'm used to doing it and doesnt take as long.ru on carbocysteine + antibiotic

[skipwork in reply to Patk1]

Many thanks. Yes, I use a nebulizer and most of the medication you mentioned.

[Patk1 in reply to skipwork]

Good.its worth trying ea cpl hrs and after meals - I get lot mucous aft meals - do u?beyond those meds, puffers + lung clearance,there's not much for us.xxx

[skipwork in reply to Patk1]

Thanks for replying. I am on my 3rd day of Ciprofloxacin anti biotics. Starting to work. Less mucus. I reckon I had been coping with an infection for days even though I had sent sputum samples to the lab. The third one found bacteria.

[skipwork in reply to Patk1]

A dilemma. How can I do my 3 x 1 hour lung clearances after a tooth extraction when I bleed a lot with blood thinners. Even if stop the blood thinners a few days before, there is still a big problem how to do it. If I ignore my lung clearances, there will be a massive build up of mucus. Any ideas. Sitting up or lying down would not really work but aggravate the blood loss.

[Patk1 in reply to skipwork]

Oh dear.your having tough time.no easy answer but I'd put lungs 1st.damned specimen results - it's time it was overhauled.for ours,I'm beginning to think its a waste of time too.I combine sitting and lying for dedicated lung clearance but for 2hrly bouts,I'm able to get it up whn sat,or stood,leaning over.i do soft punches to chest + ribs,it helps xxxx

[skipwork in reply to Patk1]

Thanks indeed. Cliff

[Patk1 in reply to skipwork]

Sending u a hug,thinking of you 🤗😘

[Damon1864 Volunteer]

Hello Cliff please do asMelnel has said and have a word with your GP or respritory team it needs sorting for you, hope you start to feel better soon, have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

[skipwork in reply to Damon1864]

Been to the Royal Brompton, my doctors, my own Lung Specialist. They do not seem to give me any coping mechanisms for when I go to bed. 3 hours a day drainage does not stop my grunting and wheezing at night in bed.

[peege]

It sounds so tough to be going through 3 hours of lung physio every day. As the others say, please get in touch with your consultant or at least GP or respiratory nurse. There could be newer drainage techniques to use. I friend spent time at the Royal Brompton learning a different technique from a lung physiotherapist. Also, you could ring the medically qualified BLF helpline 03000 030555 office hours

Good luck

[skipwork in reply to peege]

Many, many thanks. I will ring that number.

[gingermusic]

I have a similar problem on going to bed. My pulmonary nurse suggested I might have reflux and started me on Omeprazole tablets 20mg 1 x twice daily and also 10ml of gaviscon before bed and I have to say I do sleep much better with far less wheeziness

[skipwork in reply to gingermusic]

Thanks for your reply. I have two Lanzoprazole (morn & Evening) but I still have difficult nights. Maybe my brochiectasis, sarcoidosis and lung fibrosis is too far gone.

[Alberta56]

Sorry I can't offer any helpful suggestions, unless anyone thinks an AeroBika or similar device would help. I do hope you find a solution. Best wishes.

[skipwork in reply to Alberta56]

So kind of you to reply. I really appreciate your suggestion to use an an AeroBika.. I did have one but left it off. I will try again.