British Lung Foundation
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Bronchiectasis

Hi, This is my first post here. Diagnosed with non CF bronchiectasis last year after a five year period of on/off coughing fits and infections. Physio gave me a flutter device which I use faithfully every day. I also have crohn's disease and take immuno-suppressants which may have been the cause of bronchiectasis. Oxygen levels pretty good at 95% and initially prescribed domperidone to thin the mucus, but advised to stop these as they can cause heart problems. However, a few months on the cough is getting pretty bad again and mucus thicker and gummy. I've been trying to find out as much as possible about the condition and possible solutions and saw the suggestion of mucolytic meds or nebuliser with saline solution. I'm prepared to buy the nebuliser myself. I've read quite a few of the current posts on the subject and just now figuring I need to learn more about the condition. Any advice would be appreciated.

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Hello, welcome to BLF forum. You're in the right place, everyone helps each other here.

Lots of members have bronch who have daily clearance regimes as its so important to clear the sticky stuff. Many take mucolytics to help break up the stuff making it easier to shift. In the UK it's prescribed carbocysteine/Mucodyne. We can also buy N-A-C over the counter in health food shops (I've been prescibed this in both France and Croatia when I've run out of carbocysteine). I'll have to put NAC in the search bar as I've forgotten how to spell it's full name!

If you're British I'm surprised you've not been given it already. It doesn't suit all but many find it a godsend, as I do.

The experts patients will be along soon. P

Addendum: NAC = N-Acetyl Cysteine

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Thank you for the reply. I am in Scotland and will indeed take note of what you've suggested for my next GP visit which is within the next couple of weeks. Will let you know how it goes :)

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You are an expert patient peege.

cx

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😷 😘

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Welcome to the site,

I have Bronchiectasis probably from childhood and chronic Asthma, about 6years ago COPD joined in and now I am living with one of the versions of the Bermuda Triangle of lung diseases. I take Carbosistein to loosen the mucus in my lungs, I have a flutter device and a nebuliser for saline solutions and when necessary Ventolin nebules. We Bronchies seem to have quite varying degrees of symptoms which can make everyday living and flare ups trying. You will get to recognise if you feel things are different from the normal and then with a bit of trial and practice take the right action to help yourself.

When I start to feel as though I'm starting to swell up and my skin feels solid, I know its time to take my emergency meds, I don't get a temperature or change in colour of my mucus, like some other Broncs do until the infection has really caught hold.

I feel that you need to visit your GP just in case you have bacteria in your lungs planning to hold a late new years party.

There are lots of people on this site with Bronchiectasis who are more knowledgeable on the subject and I am sure they will be along soon. Take care, drink lots of water and avoid people with colds and flu.

Cheers

Sue

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Thanks Sue for the advice. I too am asthmatic although very mild and thought, for a while that was the issue. I have noted wherever I've looked for help that as far as possible, exercise is encouraged and for my age (64) I've always kept relatively fit, swimming, walking and kayaking although for the past wee while I've struggled a bit with breathlessness which I had just put down to getting a bit older. Now I know different and will try a bit harder in that department. Your condition seems a lot worse than mine, which makes me feel a bit selfish. I hope you get the help you need and don't suffer any more problems. :)

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Hope you don't mind if I call you Paddin,

Is the physio who gave you the flutter part of an NHS respiratory team, if so have a chat about attending a exercise course that is run for people with lung diseases, I know you wrote that you were active and doing exercises and perhaps you might find the exercises a bit low key but when you are feeling poorly its nice to know of a few things to do without wearing yourself out and I found it was nice to be able have a chat with other people in the same situation unfortunately I also have Meniere's syndrome and lose my balance easily so I'm a health and safety to other participants. I now have a respitory physiotherapist who comes to my house and checks on my home exercises.

There is no reason for you to feel selfish about feeling poorly and concerned about what to do to keep yourself as well as possible. We are all at different stages with these blooming awful diseases and I know there are many on here who's condition is worse than mine and I am lucky in having a good GP and Asthma clinic at the surgery and good people at my NHS Hospital.

Take care

Sue

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Hi Sue,

You can call me anything you like, but my name is actually Margaret :) I did attend an NHS physio who got me the flutter and did take me through a good exercise regime, she was also pleased that I already do a fair amount of exercise and knows what I do. I can also ask for a self referral if needed and had actually thought of doing so. i'm really glad to have found the website and already feel a bit more positive about the situation. Thanks so much for your support, much appreciated :)

Margaret

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Thank you for your response to paddlin l found it so helpful

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Me too

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Don't put yourself down Sue - you are very knowledgeable.

cx

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Hello paddlin-maddlin and welcome. I am three years older than you and have lived with bronchiectasis since I was three. We are all different and our condition is also very different to COPD, needing different and specialised management. Something which many GPs and some general respiratory consultants do not appreciate. Your desire to know as much as possible about your condition is the most important first step because this is how you will get control of it and become your own pro active and vociferous advocate in getting the treatment that you need.

I presume that you were diagnosed by ct scan because this is the only way to correctly diagnose bronch.

Do you have a bronchiectasis specialist as opposed to only a general respiratory consultant? If not I suggest that you find the name of one in your area. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral.

A bronch specialist will decide the course and manner of treatment and their team should help you to recognise when an exacerbation is starting up. ‘Flare up’ is a term associated with COPD ‘exacerbation’’ is when the bugs in the lungs of people with bronchiectasis have a party. The result can vary from slightly thicker, slightly darker gunk to masses of thick dark green muck, a fever and complete exhaustion. The consultant should tell your GP to give you a supply of the right antibiotic in a large enough dose for at least two weeks treatment, to keep at home so that you can begin it at the first sight of an exacerbation.Your GP should also send off some sputum to be tested to see which bacteria is in there so that the correct antibiotic is being taken. A word of caution here, tests often come back clear when there is obviously something in there. Labs are not infallible

I am concerned about your Chron’s disease as oral antibiotics can cause problems in the gut anyway without your problem. I suggest that you get your bronch consultant and chron’s consultant to cooperate regarding this. It is possible to nebulise antibiotic on a permanent basis in order to attempt to keep down the bugs in the lungs. I and several others on this site do this. It may mean that by doing this you would be able to avoid having to take oral antibiotics as often.

As far as loosening the mucus and getting it out every day.The mucolitic drugs have their place but I find them useless. Iearning to loosen the mucus yourself through breathing and exercise tecniques gives you more control and is more effective in the long run. I have been doing it this way all of my life and now use an aerosure medic device (a flutter with a motor) to help me if it gets particularly sticky. You will find what suits you best with this. I do nebulise 0.9% saline sometimes. Any more concentrated saline needs to be tested first in a bronch patient as it can cause problems.

I have given you a lot to take in and so I am going to leave it there for now. Good luck with it all. I am sure that you will soon be fully in control.

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Hello little pom l just wanted to say haveing recently been diagnoses bronchi after years of asthma and copd l found you andwer so informative and given me lots of food for thought just wanted to say thanks

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Thank you so much for taking the time to post. I don't in fact have a bronchiectasis specialist and will take this on board next time I see my GP I did have a CT scan to diagnose the problem. My consultant told me he thought this was what I had ahead of the scan, at the time I had never heard of the condition and did start to find out a bit about it. My sputum samples usually show a negative for the first one and more likely a positive for the second which I do press. My GP is as helpful as can be, so I'm sure when I gather all this info you guys are giving me he'll be delighted :) Thanks for all your help I have something to move forward with. :)

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You have a right mixture which must be a bit like juggling fog for your GP!

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My asthma clinic recommended eating fresh pineapple as it contains bromelain which can thin mucus down. I eat it regularly but not in great quantities as it can give you mouth ulcers. Worth a try but make sure you're not allergic. It has to be fresh pineapple and not the tinned variety. Maybe try it in conjunction with your medication?

All the best.

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This is a very pleasant suggestion for me as I love all types of fruit. Will give it a go :)

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Have you tried a Himalayan salt pipe. Don't know too much about them. You might have to use it for a while before results. Worth a try.

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Never actually heard of that, but will look into it. Thank-you

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Have you tried a Himalayan salt pipe. Don't know much about them but might be worth a try.

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This is a link to The BLF website, blf.org.uk/support-for-you/...

It will tell you all you need to know about your condition. I use Mucodyne to keep my mucus runny and also nebulise saline.

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I did find this group from looking at the BLF website, but thanks anyway.

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You may find this page useful blf.org.uk/support-for-you/... especially about help with coughing up he phlegm

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Thank you. Just about to go have a look :)

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HI paddlin--maddlin. I too have bronchiectasis and Asthma. I use flutter vlve and i use a nebuliser. My nebuliser uses salbutamol more for asthma but it does help. I use Carbocistine capsules which are for mucus production which I think do help. You may find going to Pulmonary Rehab a big help as it helps open your airways. I found it very helpful. Ask your physio or gp for referrel. Hope this helps.

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I'm trying to take note of all the info you guys are giving me. Hope my GP is ready for all this when I see him this week :)....joking aside, he's very receptive to anything which helps.

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Hi and a very warm welcome. It does make things very complex when you have other health issues in the mix. You have had some very good advice and it seems you have good medical support and a willingness to manage this condition well yourself.

This might help. I was one of the Patient Advisory Group and many folks on here answered questions from a very proactive consultant in the field of bronchiectasis. Partners were also the CHSS and the PCD Family Support Group. This version was part of the soft launch. It gives basic information through to clinicians talking to clinicians, so dip into what you are interested in.

europeanlunginfo.org/bronch...

cx

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Thank you very much. I am trying to be positive and help myself as much as I can. I've already been blown away with how much help and advice folks here are willing to impart and I'll take in as much of what you've shown as I can. Hopefully I may be in a position soon to do the same for others in similar situations. In the meantime, I have a lot of reading to do. :)

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Hi All, Just a wee note to update you all as to how much you've helped after my questions re bronchiectasis. I have seen my GP and given him all the info I've been given here. So, I have now been prescribed carbocysteine to help thin and loosen the mucus. We also had a discussion around the nebuliser which he has said won't be available to me through the NHS but since I've said I'm happy to buy one myself, he is getting on for me to try to make sure it's the correct option for me and if it is he will prescribe the saline solution for the nebuliser I then purchase. So, thanks to all who have given me any info, even my GP was impressed with what was available. Will keep you up to date :)

Thanks again,

Margaret

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Hello hoping your day has been better, you mentioned that you are in Scotland I am as well and suffer with this evil disgusting condition, I hate hate hate, I can't help myself how I feel about it. Say that I was referred to Dundee Ninewell hospital to the best consultant. I don't think am supposed to mention any name but you can google and you won't be disappointed, He has help me to see they is future beyond bronchiectasis.

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Hi Kirkton, Thanks for the info and sorry I've not answered before. Have had some family stuff to deal with and haven't had a minute. I too have no love of the condition but am beginning to deal with it as best I can. Hope you do too. Good that you've been referred to someone who knows what it's all about. Hope things improve for you also.

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