Best way to manage Bronchiecstasis? Chest infections seem to be increasing. Are they inevitable?

I have bronchiecstasis on both lungs. First diagnosis on one lung appx 13 years ago. Had a severe infection that went unchecked for a while about 5 years ago and now have it in/on both lungs. In the last couple of years I've noticed more chest infections, more debilitating. 3 to 5 a year. I want to know how to manage them or prevent in any way. I am 59 and want to look forward to a healthy retirement. Are increasing infections inevitable? So many questions!

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  • Hi Johnboy and welcome, although I am sorry you have bronchiectasis.

    Firstly if you haven't already got a proactive respiratory consultant, you should certainly get referred to one, preferably one with a special interest in cystic fibrosis/bronchiectasis. Very important.

    As for management your consultant should refer you to a respiratory physiotherapist to learn a technique for clearing your lungs of the mucus, which suits you. Most, but not all bronchiectatics make quite a lot of mucus to varying degrees. This gunk must be cleared daily or it will just lay around in your lungs and become infected. Physio is integral to the management of bronchiectasis. There are various gadgets to aid clearance which your physio should show you. The flutter is one which can now be prescribed by you GP. Another useful piece of kit is the acapella - you may be lucky enough to be given one by your physio.

    You might want to ask your consultant if nebulising a bronchodilator followed by saline or hypertonic saline would be beneficial. Saline aids in mucus clearance.

    I have learnt over many years you really have to be your own advocate and make sure you are both getting the service you deserve and help yourself too in the management of your bronchiectasis.

    If you have any specific questions, please don't hesitate to ask - there will always be someone around who can help.

    Good luck hun.

    Love cx

  • hi cofdrop, you remarked about getting a consultant that has special interest in bronchiectasis how do you do that, did you have to go private? my doctor would fall of his chair if i asked for this. i have had bronchiectasis all my life(i am 74) and the last five years have been difficult, i have seen chest specialist on and of for all my years, but have learnt more on this BLF site than from any chest specialist, the one i am seeing at the moment is very kind but so very young, but bless him he did get me through a bout of pneumonia last winter. take care sylvia

  • Hi friendly - lovely name.

    Good question - and no hun I don't go private.

    You can check your consultant's name out on your hospital site or on the site Dr. Foster. For anyone who hasn't got a consultant yet you can search on the hospitals of your choice for respiratory consultants. They should list by their name what they have a special interest in i.e. cf/bronchiectasis, copd, asthma, respiratory industrial disease etc. They should all know and treat all respiratory disease, but believe me when it comes to bronchiectasis you really do want one with a special interest in cf/bronchiectasis, and they are usually attached to a cf centre. CF centres are usually in large cities, and if you need any help please don't hesitate to pm me and I will do my best to help.

    Really sorry Sylvia you have been so unwell over the last 5 years. You have had bronchiectasis 10 years longer than me, so you must be doing something right sweet and I guess you could teach me a thing or two!!!!

    Hope this has answered your question - if not please let me know.

    with love

    cx

  • thanks for your reply, i did look on the doctor foster web site and yes there was a good selection of consultants but hopefully i will not have to see any for a while, thanks to the good summer i have been feeling really well as being outside in the fresh air helps me a lot. best wishes, sylvia

  • You're welcome.

    cx

  • I found the pulmonary doctor consultant that treats me, but I didn't find the Queen Victoria Hospital Herne Bay, where he operates, as well as at the Kent and Canterbury.

    In fact, Thoracic medicine or Pulmonary medicine is not represented at the Kent and Canterbury list of diseases.

  • Took a look at QVH and Kent and Canterbury website - not very informative I agree. You are not a million miles away from the Brompton London or Frimley Park Hospital if were talking bronchiectasis, but I realise it may not be easy for you to travel there. If you pm me your docs name and what your condition is I will have a go at getting some useful info if you wish.

    Love cx

  • Hello Johnboy, a warm welcome to the forum. You will find lots of support here, lots of hints and experiences of other people. A great reply from Cofdrop above.

    My GPs and registrar at the chest clinic have been expecting me to be diagnosed with bronch. I've only just found out I dont have it (whoop whoop).GP had told me that if I have it they would manage it with a 3 times a week dose of Azithromycin. I would have been happy to have done that as it's been the only antiB to shift my chest infections (I've taken so many over the last 4 years I've lost count). Azith also helps in drying up the mucus. I have it in my resue pack along with steroids if I have an infection at weekends or when away.

    Many of us also take Mucodyne which helps keep the mucus moist thereby easier to shift.

    Also ther is a Pulmonary Rehab course - PR - that you can request. This too is marvellous, made up of strengthening exercises, cardiovascular and knowledge sessions. You learn a lot to help you to help yourself.

    If you get the right medics to give you the right medications for you then you will have it well under control.

    More people will be along shortly with more words of support. Ask as many questions you like, someone will help.

    You could also call the BLF help line, they are said to be wonderful and will guide you on the right questions to put to medics.

    All the best to you, peeg

  • welcome,lot of peeps on hear will help you,i don't have that,others on hear do,bernice

  • Welcome Johnboy you have landed at the right destination there are several people with your condition here that will have lots of info for you and a wealth of experience to share.get stuck in and ask away,there is a lot humour amongst us important to keep smiling too. :) Janexx

  • As another bronchiectasis suffer I can't add much to the excellent advice you have been given. One thing I do though when feeling a bit iffy is take manuka honey for a few weeks. It often helps with my inflammatory levels. I used to take it constantly but felt I needed a wee break now and again.

  • Hi Flibberti, usually just a spoonful a day. But I can take it in my porridge etc! M x

  • Me too Mo 20+

    cxxxx

  • Hi Johnboy, welcome to the Forum. All that has been said above is very right. Are you a member of the BLF and do you have access to a Breathe Easy Group, check on the BLF website to find one near you, there you will meet people in a similar situation who will offer help, support and advice. Take care. Skinnylizzy.

  • Hello All,

    Thank you for your really prompt replies. They have really set me thinking.

    I think that I have not been at all proactive in managing my condition or perhaps taken it seriously enough to date. I do know that it is starting to impact on me and affect me mentally in a way that I feel out of control and that they will become more aggressive and frequent. A victim to it.

    If I get an infection my GP has given me a 7 day course of antibiotics and sent me off. He never actually listened to my chest or followed up.

    I go to another GP at the same surgery now who is more responsive. This time she has sent me for an x-ray, sample and referred me back to a consultant.

    The consultants signed me off a couple of years back after 6 monthly and annual reviews post the major infection episode.

    I will certainly raise the issue of physio and PR - I assumed my case was not 'chronic' enough?

    Is any exercise better than others for keeping you clear - cycling, running. walking etc?

    I also have a question about any side effects of the condition that you experience? Are there any more common ones?

    I have experienced periods where any exercise -sometimes not even rigorous exercise - will make me nauseous for prolonged periods. Usually after an infection. The doctor sent me for a heart check and this was all fine. I instinctively feel that it is related to the Bronchiectasis?

    The infections certainly affect me emotionally - make me feel low - is that common?

    As I sat at home this week I started to research the issue and that's how I came across this forum.

    I was also prompted by one site which said that B sufferers would have a reduced life expectancy. That was certainly a catalyst to find out more.

    Do you have good tips on boosting the immune system?

    I think I probably have more questions that will come up soon.

    I really appreciate your responses. It is very generous of you all.

    johnboy

  • Hi Johnboy

    I was interested to see that you said one site you explored said that with Bronchiectasis life expectancy was shortened,

    Well, I have Bronchiectasis for the last sixty years and still going strong! Still here anyway.

    All the information you have received from other members was excellent so if you follow up on that, you will do well.

    Stay well

    Tamara

  • Thank you. It's good to have some positive experience and information.

  • Dear John

    Please take note of Tamara's comments regarding unhelpful sites and life expectancy. Like many others I have had bronchiectasis since babyhood and I am now 65. As regards to websites I would recommend you only stick to reputable sites such as BLF and Bronchiectasis R Us.

    It seems to me you are being short changed by your medical carers. I was in 5* recently and the plan was I stay for a few days on IVs and to complete the 14 day course at home. Unfortunately I had side effects and by day 7 I was about to give up the IVs. The consultant I was under said could I manage ten days as 7 is not long enough for bronchiectatics (and you will find this is in the guidelines). He did say there is not enough evidence to say with any certainty that 14 days is any better than 10, but they usually go for 14.

    Whatever excercise you can manage is good - you will find it more difficult following an infection - best to build up again slowly. Re PR (and this is just my opinion) the excercise part I found to be excellent. However it is really geared up for copd, so whilst some of the stuff is relevant to us, certainly not all. eg the length of time recommended for abs. and very little on lung clearance.

    Yes, yes and yes John as well as being physically draining bronch can also leave you feeling emotionally drained sometimes, but once you feel more in control and your needs are met, you will bounce back - we usually do with a few blips along the way.

    Is there a large city you can access easily as we might be able to point you in the right direction for access to a good cf unit or consultant where you will receive the treatment you deserve. I really do feel that is your first port of call towards better health.

    Good luck John

    Love cx

  • Hi Johnboy,

    I have the same with COPD. I used to be them same with constant chest infections. MY GP sent me to see the Immunologist and it turned out it is the best thing he has done for me. Let me explain my Immunologist does not just look at my blood results and say oh this is high and this is low. He took his time to find out why and the results were amazing. He discovered that my bloods were no longer producing antibodies.Therefore my immune system was shot to piece.i.e. I have no immune system yet. Now I go to the hospital every three weeks for Immunoglobulin Replacement Therapy. In short transfusions of antibodies.In the long run these will increase my immunie system but not over night.

    This treatment is for life and although I still get chest infection it will be 9 -12 months down the line before I see any real difference.

    I am convinced this is going to work. The old adage don't knock it until you have tried it.

    I thought that I would pass this on to you I know how you feel fighting infections after infections. My Immunologist has also gave me 2 months emergency supply of antibiotics and steroids. plus I am on long term antibiotics. He say if you feel that an infection is starting take the antibiotics straight away, take two weeks antibiotics to hit it on the head.

    Something you may consider asking you GP to send you there

    Best of luck to you

    Berwick

  • Thanks so much for your time and reply.

    Good luck and stay well. Johnboy

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