Anyone here been diagnosed with 'Bronchiectasis'?

I've had a persistant cough for years but my doctor always thought it was COPD as I used to smoke (10 yrs ago) However it got a lot worse since Xmas when I was knocked of my feet with that rotten Sickness/Flu bug that was doing the rounds. The Chest Clinic sent me for a CT scan and it isn't COPD its something called Bronchiectasis which is scarring on the lungs thought to be caused by some childhood illness such as Whooping cough, Pneumonia,, measles etc;

Just wondered if anyone has any advice they'd like to share.

12 Replies

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  • I was diagnosed last November with bronchiectasis. I am plagued with infection, but have still been able to get on with my daily life. I also have asthma. I follow my GP and consultant advice. When I was diagnosed I read too much about it and some of the information scared me. I think it about getting to know your own body. The physiotherapist gave me some good advice about breathing properly and methods to clear my chest. I have also found this site very helpful.. X

  • Thanks teddyd, kind of you to answer only been diagnosed 3 days so haven't had much advice yet.

    Infections are the bane of my life also due to several auto -immune diseases, Afraid I'm a bit of a veteran when it comes to ill-health, I don't scare easily but like to know what to expect.

  • Can I suggest that you have a look at Rhunter's post under blogs blf.healthunlocked.com/blog... Have just read it and hopefully you will find it helpful.

    p.s. I also have bronchiectasis.

  • I am a fellow sufferer. Perhaps I am not quite the one to join in, since I am old anyway. These things are to be expected - wear and tear. Despite this I am going through the process of applying for Pulmonary rehab which can be very helpful. Enjoy the rest of my life.

    What medication are you receiving? Have you been given a rescue pack of antibiotics in emergency when the surgery is closed. Have you had a chat with your respiratory nurse?

    love annieseed

  • Thanks annieseed, none of that has happened so far, though I was given a purple inhaler which is good.

    Have to supply 4 sputum tests so they can decide the most suitable Anti-bi to give me when I get an infection. I'm already on one Penicillin tablet a day due to my auto-immune probs so not sure what the next course of action will be.

    Hope you manage to keep yourself comfortable.

    delilah

    x

  • I'll do that easybreather many thanks for the advice.

    x

  • I was diagnosed 2 years ago, I do not go to the Hospital anymore as I am signed off, I have no meds at all just anti antibiotics should I need them. I am one that has never brought any thing up, so a pot is no use for me, but I find it annoying when lying down I tend to sleep on my side that seems to be when I can hear the mucus moving around, also in the car sometimes for some strange reason. It took me 18 months to get my head round it and I am hoping slowly that I am dealing with it in my mind.

    I can tell you that both my children had whooping cough at the time this started for me and the Dr in Hospital that I saw connected strongly a link here..I hope you mange well and stay fit, this is really important for chest problems.Also keeping a positive mind, I think you grow into things really with time.x

  • Agree with that Birthday1 not much you can do if you have something that isn't going to go away but a positive attitude helps.

    x

  • hi delilah

    Sorry to hear you have bronchiectasis hun but glad you have joined us here. diagnosed just 3 days you must be quite overwhelmed so I will try to keep to keep info short and sweet!

    I have had non cf bronchiectasis for 65 years at the age of 5 months old folllowing double pneumonia and whooping cough, so I have always lived with it and didn't get that shock diagnosis you have just experienced.

    Check out online at your local hospital or Dr. Foster your respiratory consultant has a special interest in cystic fibrosis/bronchiectasis - believe me it can make a difference.

    Your consultant should refer you to a respiratory physiotherapist who should teach you lung clearance techniques and gadgets such as the acapella or the flutter (you can now get the flutter on prescription) until you find a method which works best for you. Mucus clearance is the most important thing we can do for ourselves.

    You will get to know what is normal for you eg sputum colour, when to recognise you have an infection coming on. You will need to have a supply of antibiotics at home for when you become ill over the holiday and weekend.

    It is quite useful to get sputum samples cultured. 1. If the bugs are not sensitive to the ab you are taking, as soon as your results come back they can give you the right one. 2. It gives your docs and you a pattern of bugs you tend to grow.

    Stick to the reputable sites only, the new one mentioned above, BLF and Bronchiectasis R Us.

    Enough to be going on with I think, except write down any questions in bullet form for your consultant as you don't get long and don't want to forget anything. If there is anything you don't understand ask them to explain.

    Any specific questions you have please feel free to ask.

    Good luck hun

    Love cx

  • Very useful info; cofdrop thank you for taking the time. I'm so glad the consultant told me to check out the BLF site, feel better already.

    I was all set to provide the sputum samples required re; the correct anti-bi's but unfortunately its had to be put on hold for a few weeks bcos my GP has just had to give me ant-bi's for a recurring leg infection so I suppose they'll be busy zapping everything in range..

    Will just have wait & see how it goes, so frustrating.

    Luv

    x

  • Hi Delilah, Sorry about your diagnosis. It is so overwhelming, especially with the lack of information available. You should look at the NTMir facebook page. They post excellent information about orphan lung diseases such as non-tuberculous mycobacteria, bronchiectasis and COPD. You will find the latest news and information as it is available, as well as another community for support and to answer your questions. Scroll down their page and you will see several recent posts about bronchiectasis. I hope this is helpful! Their page is at facebook.com/NTMinfo

  • Thank you lisalewin

    I'm very grateful for all the help and advice I've been receiving and I will check everything out.

    Don't feel any differant at the moment to when I thought it was COPD but theres a glimmer of hope that I might just feel a little better if I start getting the right treatment.

    Thank you for wanting to help

    luv

    x

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