Living with Bronchiectasis

Bronchiectasis is damage to the airways of the lungs which make it hard to fight off chest infections.  It is an irreversible condition.  I was diagnosed with mild, bilateral Bronchiectasis about a year after having a fairly severe pneumonia.  In the three years that followed, I had five or six chest infections each year, was using a inhaler, and felt a bit lousy most of the time.  I was beginning to wonder whether I could continue in a full-time job, and was tested for late onset Cystic Fibrosis (I didn’t have it). I should emphasis that I only have mild Bronchiectasis – and I’m full of admiration for the courage of those with more severe symptoms than I have ever had.

While the damage the pneumonia caused to my lungs has not receded, I now feel considerably better than I did, indeed more or less back to where I was before the pneumonia, and I’d like to outline here some of the reasons – beyond luck and natural healing processes – that I think have aided my recovery, in the hope that they’re helpful to others.

Keep a strong immune system: Bronchiectasis can lead to a vicious cycle of chest infections, with the antibiotics you take (and need to take) to fight off severe infections weakening the body ready for the next one – this is certainly what happened to me.  I now take high dosage Vitamin C (500mg a day) & Zinc, plus sometimes odourless garlic & Echinacea to strength my immune system.  If you were only going to take one of those, I’d go for the high dosage Vitamin C – and I’d suggest higher dosages when fighting off a cold or infection. I’m convinced that using these supplements has helped transform me from someone with weakened immunity to someone who can now fight off most bugs.  I’m well aware that conventional western medicine would dispute the efficacy of these supplements, but the problem conventional western medicine has is that its understanding of the workings of the immune system seem partial at best, and it offers no convincing remedies of its own to help strengthen a weakened immune system.

Physiotherapy: it took a while after the diagnosis of my Bronchiectasis to get an appointment to learn how to do the physiotherapy that keeps my lungs clear of infection. When I’m feeling dodgy, I do my physiotherapy properly, lying down and doing the breathing/pushing exercises. If I’m feeling ok, I just sit down first thing in the morning with a big mug of lemon & ginger tea (fantastic for dodgy chests!) , and clear out any gunge. The physiotherapy helps a lot, especially if you can combine it with keeping your immune system strong.

Tried a salt pipe, but it didn’t do a lot for me.

Exercise: I was gutted when I first had my lung problems that my ability to exercise was so compromised. Before the pneumonia I was running half-marathons, after it I could barely cope with the average working day. However, as  things began to turn round health-wise, I was able to exercise more fully, and now I’m back to running and biking happily. My suspicion is that overdoing the exercise previously (like training full-out for the half-marathons) was probably part of what brought the pneumonia on (as in runners flu)  so I now try to take it easy and do little & often. And I also dress in warm clothes if its cold out – which is clearly the kind of thing your mother would tell you, and equally clearly therefore wouldn’t do. But exercise is brilliant for strengthening the immune system, and sharpening the brain.

Relaxation: the ability to relax is essential to living with Bronchiectasis, which brings stresses of its own. I’ve learnt to know when I’m overdoing it, mentally or physically, and learnt that I need to rest if I have overdone it. And I do my own curious, self-taught version of meditation to still my over-active brain.

Diet: I eat loads of fruit, drink loads of water, and have cut back on the booze.  While I was doing all this, but was still getting the chest infections, I began to wonder if it was worth living the life of a nun, but it does pay off in the end.  And I’d stick up for old cliché of moderation in all things, including moderation.

I’ve learnt to respect my Bronchiectasis, but also learnt that, if you adapt your life to cope with it, and if you are lucky, your condition can improve substantially, and you can live a normal life.

21 thoughts on “Living with Bronchiectasis

  1. Zubair

    Hi, I’ve been coughing sputum since childhood and recently and I was coughing up blood in sputum, I found out I have Bronchiectasis. Lately i’m coughing blood alot as i’m in Dubai(sand storms are frrquent). Dear all, I’m worried i have to live with this all my life. Please tell me how is your experience and how are you coping with it, specially when you go to work?

    Reply
    1. admin Post author

      Really sorry Zubair, I missed replying to your post. I can’t really add a lot more to what I’ve already posted – I found work tough when I was regularly getting chest infections. I can only say: rest when you need to, fight on when you can. Try and keep your immune system strong. Look after yourself. I hope your condition improves. James.

      Reply
    1. admin Post author

      Hi Davy,

      Not any more. When I first got Bronchiectasis, I was using an inhaler regularly, and was regularly taking anti-biotics to fight off recurrent chest infections. It got to the point where I was nearly prescribed a constant lower dose of antibiotics to try and stop me getting the regular infections. But now, as I said in the blog post, I’m very lucky to be a lot better, and I don’t need medication. I just take various things – Vitaminc C, Zinc, garlic – to keep my immune system topped up so I can fight off coughs and colds.

      I hope your wife is able to cope well with her Bronchiectasis. All the best to her,

      James.

      Reply
  2. Debbie

    hi all
    I have bronchiectasis but, like James, it has improved greatly. I am on constant antibiotics though as a precautionary measure to protect against any further scarring – I had a constant chest infection for 7 years doing IV antibiotics at home. During all this my immune system tests always came back as super duper and my SATs were 98 ! in 1 per cent of cases the lung tissue repairs itself – I am in that 1 per cent. My bronchiectasis has gone from moderate and widespread to very mild. I no longer use inhalers. I used to do physio for 20 mins three times a day and I swear that this is the most important treatment. I no longer need to do any at all.
    Re work – during the bad 7 years there was NO WAY I could have worked. Even now, with mild bronchiectasis, I only work part-time due to the chronic fatigue that comes with this illness due to a constant fight against infection.
    My good friend has set up a support group Bronchiectasis R Us – check it out:)

    Reply
    1. admin Post author

      When I was first diagnosed, I found the Bronchiectasis R Us website, and the forums particularly, very informative, with some incredibly supportive & strong people involved.

      I didn’t know about the 1% of cases in which the lung tissue can repair: I can only assume I’m in that (extremely lucky) 1% too.

      Reply
  3. yolande

    Hi Davy,
    I was diagnosed with mild brochiecstasis following a really bad chest infection, and within a couple of years was told I had right bundle brach block of the the heart which was probably related to getting the brochiecstastis, The main thing is , as you say to keep your immune system really strong. Has anyone evry tried probiotics? or would these also be unwanted bugs , there does not seem to be a lot of info on this? at any rate keep well,
    Yolande

    Reply
    1. admin Post author

      HI Geoffery, Can’t speak for Davy – I did have yearly checkups for a while, but haven’t seen my consultant for a few years now. Really depends on how you are – you’d need to talk to your GP/consultant. James.

      Reply
  4. patricia

    Hi James, I am 41 years old and I was diagnosed with mild bronchiectasis just over a year ago,I had three episodes of hemoptysis within 2 months which scared the hell out of me, after three months they discovered the reason.I am one of those people where they are unable to tell the cause of the my condition. I do not have a constant cough as some of the sufferers, I was advised to take Amoxicylin everytime I felt like I had an infection. I am extremely happy that I have found people with the same condition, I have to admit I have been quite depressed and it has taken me a long time to come to terms with it. All the information I read in the Internet is quite scary and depressing and this is the first time I have seen some positivity, I just find it really hard to cope with it, I have this constant fear..I would love meet or to be in touch with any of you. Thank you James for this page. It has done a lot of good already.

    Reply
    1. admin Post author

      Hi Patricia,
      I’m really happy if you’ve found the page helpful. My only real aim in writing it was to think of all the things I’d wished I’d known or been told at the point I was diagnosed. I definitely think I’m at the lucky end of the Bronchiectasis range – I feel even fitter now than I did when I wrote this original post. I no longer feel stuck in the cycle of lung infection and inflammation that makes Bronchiectasis tough both physically & mentally – but there are no guarantees that that will continue. Key thing is that there is stuff you can do that can help – but you do need to give it time.. Hope things get better..
      James.

      Reply
  5. Radie Bunn

    I have also been diagnosed with mild bronchiectasis and without a constant cough. I also have idiopathic of unexplained bronchiectasis.
    I take a green tea called Bronchophyt from Russia/Ukrained.

    Radie

    Reply
  6. Mandy

    I was diagnosed with mild Bronchiectasis in 2010 after having constant chest infections for 8 months. I take azithromycin 3x week but even though my bronchiectasis is considered mild I have about 6-8 chest infections/year and generally need 2 additional courses of antibiotics and then suffer the chronic fatigue that follows. I have recently been dismissed as a secondary school teacher after 10 years even though I always received good to outstanding observations and my department was running well…. coincidence??? I have now got to take hold of this blasted disease instead of letting it take hold of me!!! So was thinking of starting with a salt pipe and will also take on board the zinc and vit C. Any other recommendations would be more than welcome :-)

    Reply
  7. Steve

    Hello–
    Very glad I found this post. I am a runner who, after two years of constant congestion, was recently diagnosed with bronchiectasis. I take antibiotics 3x/week, but have not yet tried any physical therapy–but, I am determined to continue to run regularly, because I think it helps and because I like running. And, possibly foolishly, I still want to run a marathon, which was my goal when I got this. Looking for any advice from fellow bronchiectasis sufferers.

    Reply
    1. admin Post author

      Hi Steve, thanks for the comment! I think the key is to run regularly and not excessively. My uneducated theory is that exercise stimulates the immune system, and therefore can be really good to avoid infections, but if you had a burst of exercise (e.g. training for a half/full marathon) and then have a real lull in activity afterwards, your immune system is actually weakened and you are more susceptible to infection. So its just a case of maintaining the exercise at a sustainable level. Really like your blog, by the way! James.

      Reply
  8. Car

    I had empyema in 2000. They did a thoracotomy to scrape out pus. I have some scarring. In 2010 my pulmonary test was 50 percent. I was referred to a pulmonologist. I have been followed,for 2 years because I had enlarged lymph nodes. They have been stable for 2 years. They n I only mad to be followed for that long. Last CT scan showed mild bronchietases. The past 2 years I did have one pneumonia and 1 bronchitis.

    My question is, is it inevitable that this disease gets worse?

    I take vitamin C and will now start taking zinc. I do know I need to lose weight and start exercising again. I was walking but have not walked for a month.

    Right now I have a drip. I just started using. Nasal rinse.

    Reply
  9. mike50

    i feel quite different than most on here seem to have it mild where i was diagnosed as chronic i do get several chest infections a year but i am constantly feeling unwell and suffer with a lot of pain in chest

    Reply
  10. Sam

    I guess one stably it does get worse depending on life style as last two years chest pain gas in teased I cough so much I rip my muscles then cannot move for weeks :( but everyone’s different immune system has to be kept strong as it fights infection and no matter how much vit c I intake or fortisips drinks a day I not getting any better I have it in patches both sides but left also started to get worse but they wnt rescan me just yet so gotta keep strong and fight I guess in my case having other factors I.e asthmaa and co cop cord dysfunction isn’t helping . So I guess it differed in everyone but all we can do is stay strong as stress doesn’t help and I’m a rite dress head too deep think things to much . But I guess not having the ability to work is making me all the more sad as I barley get through a day without bien fatigued but who do you explain all of this to who listens and who can help ? Had life all maped out but no energy to do :(

    Reply

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