Bronchiectasis

Hi there everywhere. Have been out of action for a while as am going through bad spell with breathing and fatigue. This is not usual for me. I am posting this as I have a question regarding bronchiectasis. I was at the consultant this afternoon and he arranged an x-ray while I was there. He compared it to the last one I had a couple of years ago and he said the area affected in my lungs has spread. That was all. I recall that the last x-ray had showed a spread too. I didn't have time to ask him and now I won't see him again for another 8 weeks so I am asking you guys who have bronchiectasis. I am 54 and this has me worried. There doesn't seem to be a way to stop the spread of this damage in the lungs once it has started - am I right in thinking that? I have antibiotics to take for this current exacerbation. I can't help feeling that this is going to be a condition that justs spreads despite exercise and antibiotics though. Judging by my xray results. I hope I am wrong. Is there any control on bronchiectasis?

49 Replies

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  • Sorry I can't help, but someone will be along who can.

  • Thanks Toci - there is always good help on this site! Better than the GP (well in my case anyway...this doesn't apply in most people's cases!) xx

  • It applies in my case too. xx

  • I've learned almost everything I know about emphysema on this site,

    I'm so grateful for all the help i have got on here,

    Sally x

  • I agree Sally. I seem to be going in to my GP and suggesting things we try for bronchiectasis that I have learned here! It is also helpful to share what we are all going through as everyone has different experiences to offer and can therefore contribute some solutions and advice because they have been there too. Of course, it is also upsetting to see what some have been going through. It is a wonderful forum.

  • I can't help, but I have COPD Emphysema and have only just heard that I might have Bronchiectasis (too?) I have been going to the Lung Physio consultant at my hospital and learning new breathing techniques to try and stop me coughing so much. Must admit, with concentration they have helped and I mean to keep going with them. It is certainly worth going to find out about them. Good luck.....I am 77 and I am trying to stay positive, so do try not to worry quite so much but I understand that you do. We all do at times. Take care :)

  • Thanks Louisiana. I have always tried to keep up exercises and have just been to a local pulmonary rehab course. However, there were a few people there who were poorly and had infections and I guess that is when I started to go downhill! I do breathing exercises and walk a lot too but have been knocked back by this exacerbation as it is probably the first one of this length that I have encountered. I was diagnosed in 2010(bronchiectasis) and later in 2013 with bronchiectasis AND COPD, and since then, I have had a mild spell of infection each winter where I have needed amoxicillan and all has been well again very quickly. Not this time! Yes, I have noticed I am getting very drowsy easily too. I was just concerned that there was an evident spread of this disease when I had thought that up till now, I was managing it well. It has been a wake-up call for me. I can see now that any lung damage is irreversible and how any sort of infection can cause that lung damage. This is certainly a tricky condition to have. I am pleased to hear you have a good positive attitude and I commend you for that. It will help you a lot. xxxx

  • Keep up the good work!! I am not brilliant with the physical exercise 8-)

    Clearing the infection is the most important thing to do. I never seem to get completely clear and so do take a lot of antibiotics.....I am soooo hoping this lot will sort me out ;-)

    Good luck :)

  • I have bronchiectasis and asthma and yes, I get tired faster than I used to. However, it is variable so I have learned to not beat myself up if I do not get as much done as I would like to. Maybe you are working so it will not be so easy for you to adjust your activities according to your energy levels. As with many conditions people vary so I cannot comment on whether bronchiectasis spreads or not but guess exacerbations will not help.

  • Thanks Pentreath. Best wishes with managing your bronchiectasis. xxxx

  • Hi stillmovin

    Just wondering as it was an xray if con meant the infection had spread. Although bronch can rarely be picked up on xray, the extent of damage is usually seen clearly on ct. You don't say hun if you do mucus clearance and what drugs you take for your condition.

    If you don't get a copy of the letter from the con, why don't you give them time to send the letter to your GP and discuss con's findings with GP.

    Good luck - let us know how you get on.

    love cx

  • Hi cofdrop.Hope you are keeping well. I have been given some careless info on all of this by my GP regarding my lung condition so I think I will try to milk the consultant as much as I can in this case. As far as the x-ray goes, the consultant pointed out the spread in the lungs of the bronchiectasis disease. The infection he said wasn't clearly shown and he wanted me to try the antibiotics as a safeguard. He didn't want to give a ct scan as I had one last year and the year before and he said that I was still relatively young and he didn't want to expose me to another scan. I get his point and I accept that. He seemed very knowledgable. My worry is that this spread of bronchiectasis seems to be continuing despite a good record of few infections, lots of exercise, good oxygen levels (100% today) and reasonably good lung function tests.

    I take Spiriva and Serevent, currently on antibiotics for longterm facial dermititis and now antibiotics for bronchiectasis infection Coamoxillan or something like that (plus lots of other conditions require my medications of anti-epilepsy and acid reflux, etc).xxxx

  • I have had bronchiectasis for a few years, and unfortunately was really ill last year, and on life support because of serious lung infection caused by pancreatitis, Although recovered now, my lungs have been worse since, as when I get a flare up I cough such a lot of mucus up, it is quite awful. Unfortunately if each period of inflammation affects the elasticity of the lungs, bronchiectasis does get worse, BUT it's one of those things that every case is different and it progresses at different rates in different people, so obviously you need to keep as well as you can, keep up the exercise in order to keep the healthy parts of your lungs as healthy as possible to compensate. this is just my interpretation, so I have included a link for you.

    nhs.uk/Conditions/Bronchiec...

    Hope this helps.

    jan x

  • Thanks Jan and really sorry to hear you have been through such a lot with pancreatitis and the after effects of that. Here's praying you make a full recovery and get fit and strong again. I understand what you are saying about how everyone is different. I know a couple of others who have bronchiectasis (not on this site) and they aren't having as much problem as I am. They have had it since childhood too! Get well soon. xxxx

  • Hi stillmovin, so sorry you are still struggling.

    As i think I've may have mentioned before, my sister in law has had bronch since childhood, loosing a lobe in her late teens.

    She gets loads of infections but they are never all that serious. As stated it seems to vary so much and it makes me wonder if long term bronchs are affected differently.

    If i were you i would phone your consultant's secretary and explain about being unclear after your con appointment. Secretaries are great people to make friends with. Ask her advice as to the best way to get some more info. She may well write down your queries and speak to him and get back to you. So if you do this, have all your queries well worked out before hand.

    As Im a bronch newbie Im still finding out stuff myself. I certainly wasn't told anything about bronch after having X-rays, but i see why they don't want to expose you to another CT scan.

    I would be very cheered if I ever showed 100% oxygen :D

    I asked in PR why they didn't tell people with infections not to attend and was told that you still need to exercise when you feel ill. We go round the circuit in twos and my partner in the maintenance session we go to have promised to tell each other if we are sick or brewing something so we can keep some distance between us.

    Think its probably co-amoxiclav you've been taking - amoxicyllin plus clavulinic acid. This makes the amoxicyllin work better.

    Do hope you feel better asap stillmovin.

    Sending love and best wishes, jean

  • Thanks Jean. I suppose I am feeling that I am now not controlling the progression of this condition & that is making me anxious. I am getting an awful feeling that the bronch has spread without infections. I haven't had an infection for about one year and yet the xray shows more spread. That is what is worrying me. This recent exacerbation may not even be an infection. I will take your advice and contact the secretary. Hope you are managing as well as you can.

    By the way, I was quite enjoying the Pulmonary Rehab and I think I did pick up something there. I mentioned it to the administrator when I phoned last week to tell them I couldn't attend the final week. I think it leaves us all open to pick up each other's infections!

    Still thinking that I wish I had the means to have at least a holiday getaway or something by the sea! I don't have a chance, I'm afraid! Take care.xxx

  • Hi o2 another reply from me - I was thinking was it ok for me to send you a PM? If not, don't worry.

    xxxstillmovin

  • Of course it is stillmovin. Look forward to it xxx :)

  • Hi again O2... haven't yet got round to PM you but will do soon when I am not spending so much time in marathon stints in front of the PC screen & a bit more relaxed! Thanks for your very good advice regarding befriending the consultant's secretary. I know it is just common sense but it made me think about how I approach these people and I phoned her today and was very polite, watching my tone and keeping it pleasant, etc . The result was that the consultant rang me this evening at home and spoke to me about my concerns. I was gobsmacked. It turns out the comparison he is making with my xray taken this week and the one he was looking at from a few years back (yes- a few years, not last year) did show a spread. As it would, I suppose! It wasn't actually how he explained it hurriedly at my appointment! He said he will know more when we see how I respond after taking this week's supply of Co-amoxiclav. I will try to be a little more determined to get all the info I need before leaving the consultant's room the next time, as following it all up and worrying about things is such a horrendous deal. At present, I still feel very clogged up with a sort of blockage (unshifting phlegm?) when I take a breath in and I am trying my best to use my flutter device again and do some serious sessions of forced expiration exercises regularly too. I got very lazy with all this over the past months and I realise now how important that all is with bronchiectasis. xxxx

  • So pleased to hear this stillmovin. Often easier to provide advice than apply it to oneself. I am in a similar situation re my gastroenterologist, I have so many questions i didn't ask, though the difficulty there is that when the reflux gets out of the oesophagus and into the windpipe it becomes the responsibility of the ENT department. How crazy is that?

    Anyway i hope the exercises really help and the blockage shifts and you start feeling seriously better.

    Look forward to your PM when the time is right :) xxx

  • I sympathise with you and the acid reflux issues O2! I too have been seeing some gastroenterologists over the past few years about GERD and have had 2 gastroscopies, 1 colonoscopy and 2 tests with tubes going down the nostrils into the stomach!!!! YES I SYMPATHISE!!! I suppose we EDS III people have similar problems don't we!!!! My next step is yet another dietitian to get my weight up to a normal BMI.

    One respiratory consultant mentioned that I could be breathing in the acid from my reflux into the lungs and I kind of think that makes sense in my case as my breathing gets bad after eating certain types of food such as dairy or bread. Does that affect you?

    All the very best with those investigations and I understand what you mean about seeing different specialist consultants about overlapping things. xxxx

  • Can't help but wish you a very speedy recovery. Hope you get a better explanation re your results.

  • Very sweet of you joyce and all the best to you too. xxxx

  • I have asthma and have been diagnosed with bronciectasis about 4 years ago after getting pneumonia. I am on long term antibiotics and take seritide, spiriva and ventolin inhalers. Before being put on the permanent antibiotics I had a bad chest infection every 3/4 weeks, now I haven't had a bad chest infection for nearly 2 years. I feel like I'm tempting fate when I say this. But I have a lot more energy than I have had in a long time. I have a flutter device which helps with lung clearance.

    What I'm trying to say is when you get the right meds for you it can be controlled and contained. Good luck x Shirley

  • Hi Shirleyj I am so pleased you have been infection free for a good time and long may it continue! I am on Serevent, Spiriva, and at the moment a week of antibiotics (Co-amoxiclav). Other meds for other conditions too. I have a flutter device too but stopped using it ages ago as didn't think it helped. I thought it tired me out and put a strain on my lungs! However, if you think it helps you I might just give it another try. I always felt I wasn't getting phlegm up when many people reported that it worked really well, so I got fed up! Take care xxx

  • Hi, I have severe asthma with fungal sensitisation (SAFS), bronchiectasis. I am told by my consultant that the bronchiectasis was as a result of pneumonia that I had several years ago. I am on continuous antibiotics (doxycycline was initially azithromycin), these help to reduce mucous production and also prophylactic. I also have hypertonic saline via nebuliser once daily to clear my secretions. I have many chest infections requiring even more antibiotics and steroids. I have attended pulmonary rehabilitation in the past which I found extremely beneficial. Fortunately not needed any antibiotics a since my last hospital admission and IV antibiotics in May.

    I have suffered from shortness of breath on exertion for past five years. This got considerably worse following a flu type virus and chest infection 8 months ago and I was suffering from extreme fatigue. My consultant decided to perform a bronchoscopy. It was during this procedure that I was diagnosed with severe tracheomalacia (my windpipe collapses in on itself greater than 90% when breathing out). I have since been told that this condition takes years to develop and can be caused by repeat infections and inflammation. I just wish that I had this diagnosed earlier before it got severe as it severely affects my life and I have had to give up working at 53.

    I agree with cofdrop bronchiectasis is diagnosed by ct scan. I think that you should discuss the possibility of a ct scan and discuss bronchoscopy.

    Good luck,

    Carolyn

  • Thanks Carolyn and after all that you have been through I am glad to hear you haven't had an infection since May. I really hope it stays that way for a lot longer this time and many best wishes to you.

    I agree that a ct scan is better and I did ask for this yesterday but the consultant said that as I had a CT scan last year and one just a few years prior to that, he thought that as I was still relatively young, he wasn't going to expose me to another CT scan just yet. I agreed as that seemed fair enough. Yes, the xrays are always a bit foggy but an experienced consultant should be able to tell when comparing previous xrays, if there is a spread and apparently, there were signs of that yesterday, so I have to accept his expert opinion. The spread has worried me though. Especially has this is the only infection I have actually felt was an infection for about a year. xxxx

  • The short answer is - no! I've had it all of my life and it was always in my right lung when I was a child. As an adult it spread to my left lung as well along with Emphysema.

    It cannot be cured, but it can be managed, so don't panic. I'm sure your GP can recommend something to help? XX

  • Thanks Nikkers. Do you mean 'no, there is no control of bronchiectasis'? Just wasn't sure if that was what your 'no' meant. That is what I find very worrying indeed. I thought that, although it is not reversible, we can control its spread. But are you saying we can't control it's spread? xx

  • The exacerbations weaken your lungs when you have them, that's why it spreads. The problem is, that the damaged parts are not repairable other than by a transplant. You do not need to worry, it's not something that happens fast, and then only if you don't manage it properly. I have only had 1 exacerbation in the last 3 years - thank goodness. So try to stay away from smoky, dusty environments, from people with coughs/colds etc., Wrap up warm in the winter time and rest when you're feeling tired. In other words.....just take care and you'll have many, many years ahead of you. XX

  • Excellent.

  • Thanks nikkers. Good advice there. I was chatting to a lady today who kept coughing in my direction and I couldn't help but recoil and try to back off! I am more aware of things like that now when I am out and about. Unfortunately, my dad is in hospital at the moment as he has an infection and I can't get to visit him as I don't think it is the best place to be for me right now. xxx

  • Perhaps if you call the BLF nurse she maybe able to answer your question. They were very helpful with me xHH

  • Thanks HungryHorse. Called them last week.xx

  • i was diagnosed with bronchiectasis about six years ago. I had had a long spell of infections then coughed up a frightening amount of blood. Had a bronchoscopy and ct scan and diagnosis of bronch. I do daily breathing exercises and cough up sputum regularly, I get tired and quite often get pain in right lower rib area where the bronch is, its both lower lobes affected but right side more so. I haven't had antibiotics for a year now, often think its an infection coming but feel betternext day. Just get many days of feeling unwell. when I am well I feel almost hyper, and probably overdo it! I'm 81 so hard to tell if tiredness is age or illness. Its not an easy condition to manage and hard to ignore. Best wishes for your health, Iris x

  • Thanks Iris. Will reply later as have to go and get my hair cut. I am looking like a cavewoman....

  • Iris, as I was reading through your reply I got a surprise at the end when you revealed your actual age. Well done to you. You sound as if you are managing well, despite feeling some days tired and not well. You probably have a very positive attitude, sounds like it to me..xxxxx

  • thanks, still movin, had to laugh about the hairdressers as I too had just come back from getting a haircut! I put it off and put it off, its quite a long walk to mine as she moved premises and I like to stay with the one I know. I hatemaking appointments for anything because INever know how I will be feeling. I was lucky as she had had a cancellation so was able to go straight away. Love Iris x

  • Hi Iris you are lucky you have a trusted hairdresser! I have long very thick hair which takes a lot of maintenance and all the hairdressers charge me a bomb for a cut and finish (about £40 is the average price now). So, I have as few cuts as I can get away with in a year and spend a lot of time feeling miserable with how my hair looks! It would take even more cuts and maintenance if I had it all chopped off! sigh. xxxx

  • Sorry to hear that you have been suffering. I have bronchiectasis, and since diagnosis 3 years ago, there has been no change, despite having a bunch of other medical conditions sneak up on me. I'm not sure what, if anything, is keeping me healthy, or if it is just luck. My current medication includes Seretide inhaler, montelukast (for asthma, but definitely helps with mucus too), antihistamines and levothyroxine (unrelated thyroid problem). I have been on azithromycin for periods of up to 9 months, but none since spring this year and only one mild infection in this time. I also follow a gluten free diet with lots of fruit and veg - I have no idea if it helps, but since my being health coincides with when I started, I'm inclined to think it can't be harmful.

    My point really is that I am wondering if you are on the right drug regime - My consultant is very pro-active in trying new things and we fiddled about with what I was taking for a while. And maybe try the gluten free thing if you can.

    Good luck, Monkey

  • Thanks Monkey. I do agree with you about food. I did try gluten free on and off for a while but found it so expensive. It is about £3.00 for a Genius loaf now! However, I know it has been said to be very good for you. I found the rolls and bread just very dry and crumbly (I can't take butter or dairy as I get stomach probs). xxx

  • I just don't buy bread or cakes at all. Occasionally those Newbarn wraps. Otherwise use rice, potatoes (lots!) and pasta - Tescos own brand GF pasta tastes best and is not too expensive. And I make my own cakes -lemon drizzle is good both gluten and dairy free because the syrup keeps it moist.

  • It sounds yummy...I have acid reflux so have to watch a lot of what I eat as there are many triggers (have lost an awful lot of weight because of it and I was already slim so it is not easy to get it back on, I'm afraid). Pasta is a problem for me now but I could always try the gluten-free sort. I rely on bread a lot as without it, I would lose even more weight. Anyway, I will be seeing a hospital dietitian soon to look at my loss of weight, so I will talk about gluten, etc. with them. xxxx

  • I've had bronch for about 10 years after being misdiagnosed with asthma. For about 4 years I had constant infection, about one a month, which Doxy or Amoxicillin helped. Since my first pseudo colonisation, I've had one every April/May which required 14 days on Tazocin, although this year Taz didn't work, so had to have Meropenem. This time I've taken longer to recover, and I'm very SOB. I have my second CT scan in a couple of weeks time. First one was at diagnosis. Just had my Seretide changed to Fostair. I haven't been told how much of my lung(s) are damaged.

  • Hi poemsgalore, I think the ct scan will definitely show the extent of the change in your lungs. The xrays don't seem to be all that clear in that respect. I remember taking Seretide 250 for a short while but I didn't react well to it and asked the GP to put me onto a non-steroid one, which is why I take Serevent. However, I don't know whether or not it is any good. I haven't had an infection for about a year until this recent problem. I know what you mean about getting SOB and feeling that the antibiotics aren't working and then getting put onto one type of antibiotic after another. I am wondering will all these abs mean that I won't be able to fend any winter infections off when they come, as they do. Is Fostar a steroid inhaler? When you said pseudo-colonisation, what did you mean? I ask because my consultant yesterday asked me to give 3 sputum samples into the hosp next week. As I have already started his antibiotic prescription today, won't that interfere with the sputum results? It is a bit confusing. xx

  • You could try and ask about azithromycin to keep the bugs in there under control. Doesn't work for everyone but its been brilliant for me.

  • OK Marie, will discuss that with GP when I know more about my sputum results and if I cannot get this infection down. Many thanks. xxxx

  • Still Moving. This is the information about Fostair, it does contain steroids

    medicines.org.uk/emc/medici...

    Normal tablet antibiotics won't touch Pseudomonas, it colonises your lungs and needs intravenous antibiotics for 14 days and possibly eradication treatment by nebulising either Colymycin or Tobramycin for about 12 weeks.

    I already take Azithromycin on Monday, Wednesday and Friday.

  • thanks so much poemsgalore. I will be leaving in samples next week so may know more when tested. This is all very useful and helpful info you have given me and it is worth keeping so I can discuss anything with my GP or consultant. Much appreciated. xxx

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