Help bronchiectasis consultant recommendation

[carolg1]

Too much mucus to cope desperate measures now need to be taken before this god awful mucus chokes me, I have seen and read where a procedure can be carried out to kill the nerve that produces mucus in bronchiectasis patients, so I am trying to find a reputable consultant who would perhaps see me private , has anyone got any suggestions for me, I am reaching the end of my tether ! Plus things are much worse and my docs don't seem to suggest much at all , just the nature of the beast . Thanks xx

[knitter]

I have heard it mentioned before......if you type ' nerve' into the top right hand corner search box....you will find at least two previous posts.

' targeted lung denervation'

Vagus nerve and COPD.

They may be more.....if I remember there was a Daily Mail article a few months ago about a woman who had the procedure .

Has your GP prescribed any medication to help thin your mucus, or a device to help bring it up. If you live on the UK have you tried contacting the BLF helpline for advice, by phone or email.

[carolg1 in reply to knitter]

Hi knitter, thanks so much for the reply I will check it out, yes I've seen the article in the daily mail I'm just trying to source someone who will see me even if I have to pay, if you read most of my posts it's the volume of mucus I have I'm literally drowning in the stuff, sometime it is difficult to shift but I am at it for hours at a time now, thanks so much xx

[Hidden]

This has been trialled for COPD in which the lung damage and responses is very different to bronchiectasis. The vegus nerve controls a lot of body functions and I would be very wary of damaging it. Certain types of bronch simply do result in heavy sputum production which has to be expelled every day. However, when this is controlled by the correct antibiotic rherapy, daily self physiotherapy and a routine to empty the lungs it is possible to lead a very normal life. I should know. I have lived with it since I was 3 and am now 63. I have read every idea which has come and gone. Be careful of private doctors. They know no more than the experts working in the NHS but have access to private money and therefore can play with 'toys' which bring them a lot of personal satisfaction but are not necessarily advantageous in the long run to the patients. The bottom line with bronch is that all doctors are simply chasing the cycle of infection and further damage and we, the patients have to stay on top of it.

[carolg1 in reply to Hidden]

Hi stillstanding, I read and agree with your concerns but I am pretty desperate at present spending literally 6 to 8 hours a day clearing the thick frothy gunk out its as if i have got a massive PND but the medics say Not , I feel like I have an horrendous cold most of the time but my samples say clear no action necessary although yesterday my gp did give me some antibiotics saying my chest sounded congested and my oxygen was quite low, I have been on 2litres about 8 hours per day for the past couple of years and the mucus has tripled may be just a coincident not sure, sometimes , when I have an xray resp medics say their dosent appear to be much mucus on my xray, the discomfort and shortness of breath comes when my midriff feels full of the stuff once I start it just pours out what seems like forever, really appreciate your response, thanks Carol

[Hidden in reply to carolg1]

Hi Carol. It does sound as though you have a bad exacerbation of an uncontrolled infection which is producing so very much gunk. I do not use oxygen and so do not know anything about that. Samples can come back clear when they are not looking for the right bugs. I think that insisting on seeing your consultant is probably the best way to go. As you are coughing up so much the doctors should not be ignoring it because even with bronchiectasis it should be cpntrollable. xx

[SAMMYJFL]

Hi Carol It's early days, only 6 weeks, but a change in my diet has certainly reduced my sputum production. I now avoid sugar and sweeteners using only local honey, I don't eat dairy and wheat products. Thought it would be difficult to give up tangy cheese and crusty bread and butter but it wasn't and results worth it. I also eat sourdough bread as a probiotic , could be coincidence but have been infection free for two months which is great for me. Hope that this helps. Best wishes Sammy jfl

[carolg1 in reply to SAMMYJFL]

Hi Sammy, Well I am going to give that a try so no sweet pastries or anything with sugar in ? mainly veg fruit and protein is that correct any guidance will be greatly appreciated. thanks so much Carol xx

[SAMMYJFL in reply to carolg1]

Good luck Carol. A fully qualified acupuncturist gave me this advice. She said also to avoid bananas, something that I used to eat every day. Fruit and veg and salads, almond and walnuts, button mushrooms, celery, shrimps and clams, black pepper, mustard, marjoram, thyme, garlic, licorice, peppermint ( I use a peppermint and licorice tea from Asda, very nice.) Ordinary tea okay too. These are some of the things supposed to resolve phlegm. Best wishes. sammy

[Kirkton15 in reply to SAMMYJFL]

Thanks sammyjfl, it's worth a try.Am going to give it a try.

[SAMMYJFL in reply to Kirkton15]

Hi kirkton. I do hope it helps you. Best wishes Sammy,

[carolg1 in reply to SAMMYJFL]

Thanks again sammy I luv liquorice and mint so that's good , and strangely enough I have a banana every morning because it's easy to eat and I need help energy wise !! Maybe il have to think of something else I'm not good at eating especially with de mukeing !, your a star thanx xx take care carol oh by the way what do you think of stavia for sweetening is that ok or not ? Xx

[SAMMYJFL in reply to carolg1]

Sorry carol haven't heard of stavia and yes like you I ate bananas daily because it was easier,. I now have a couple of satsumas or mandarins or porridge with honey and almond milk is filling and gives energy a boost. Take care, xx sammy

[tomhatha]

I hope this helps regards Tom

Read more: dailymail.co.uk/health/arti...

[carolg1 in reply to tomhatha]

Hi Tom, Thanks again I at least have a name now to work with thanks xx Carol

[carolg1]

Thank you So much for that Hanne thats really helpful xx

[tomhatha]

glad it helped

[19441934]

Excess mucous is bothuncomfortable and exhausting to electorate.Ask your G.P or Consultant if you can be prescribed Carbosistiene, it's well worth a try.It gives relief to many patients by thinning mucous secretions.Good luck.😄 .

[carolg1 in reply to 19441934]

Hi, it's not that it's difficult to expel most of the time there is too much of it and it just flows up from the back of my throats and nose and the midriff area , I have been on carbocystien for years my gp said to come off it and see if it made any difference but it didn't really it is sometimes hard to expel I have to hack and huff a bit which is tiring and disabling totally gross really, many thanks for your response xx

[carolg1]

That's exactly what I say I don't think he realises how much I'm talking about, so yes I think your right I need to do that, after the day I've had today I feel I have a bad cold , I will need a glass bucket lol, I have to laugh or I would be crying most of the time, thanks hanne xx

[sarcoid123]

I don't have bronchiectasis or COPD (I have sarcoidosis) but I produce mucus in my lungs all the time, although not as much as you. Have you heard of active cycle of breathing technique to help cough up the mucus? I was taught it by a physiotherapist and I do ACBT in the morning and evening. It has completely changed my life as now I don't cough during the day. There is lots on the internet about ACBT; this is a good site youtube.com/watch? v=XvorhwGZGm8

Also, you could buy or ask your doctor for a flutter or acapella device which vibrate the lungs and helps to get up the phlegm/mucus that gets stuck! Even though I do ACBT every night at bedtime, I sometimes wake up in the middle of the night and need to use my flutter to cough up mucus that seems to be stuck.

[carolg1]

Hi sarcoid, what it actually feels like is a bottle filling up when it gets to a certain point it's uncomfortable then my breathing becomes harder I start the clearance generally by hacking or (sorry in advance) putting fingers down my throat to make me wretch once it starts to come out there is no stopping it except a few tricky bits, but I can never get low enough to clear what feels like a golfball stuck at the bottom of my esophogus, them I'm free for a few hours while the bottle fills again, I have aceppela and I've tried it , I cough very little to be honest, thanks again for replying I will look at active breathing though take care . Carol x