Daily lung sensations - bronchiectasis

On a daily basis how do your lungs actually feel? I would very much appreciate a description from you so I can see if I'm normal.

When I read information about bronchiectasis it never says how your lungs will actually feel. It's says tiredness, phelgm, coughing, maybe bleeding but never what the lungs will feel like.

Then could you say how you know if you need antibiotics? I have so often felt I needed some but a sample always came back clear. I now haven't sent a sample in for at least two years.

Thank you very much.

35 Replies

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  • Well, what a simple question that is almost impossible to answer.

    Bronch is very complex, and everybody with it is different. The area of the lungs which is damaged is different in everybody as is the extent of the damage and the problems which this causes.

    Also the perception of how it feels is very subjective and everybody experiences it differently. I have had a lifetime of 'getting on with it' and have never been allowed, or allowed myself to dwell on it.

    Having said all of that I do have signs when things aren't right. I have a lot of daily fluid, whether I have an exacerbation or not. If I have not done my chest clearance it builds up, I feel breathless and very uncomfortable so have to get rid of it - every day. the best thing of course is to do it before it feels like that.

    If I have an exacerbation I get a heavy 'solid' pain in the lower part of my right lung where most of the damage is. Since I had an empyema two years ago I can get a sharp pain on the right hand side where the empyema was if I am lying down and breathe in quickly. This is where the pleural membranes are still sticking together. If I get a virus I have a sore pain and irritated cough at the top of my airways. Many healthy people experience viruses like that.

    You may not recognise any of that because your bronch is different but I hope that you found it interesting.

  • You've had an excellent reply from Littlepom Lizzab so 😉 good luck! X

  • Thank you, yes it is very helpful and reassuring to hear about others' direct experience.

    I seem to hit walls of tiredness from time to time and just choose to stop and sit and was wondering whether others get it. Sometimes the pain/discomfort in the bottom part of my lungs (both sides) turn up. This I find very distracting...it occupies my mind greatly due to its pervasive presence and never know quite what I should or could be doing to deal with it/prevent it.

    I do get times of 'over-production' but it always comes up very easily but don't take this as a sign of infection. It never lasts very long.

    I think if I know how others experience this and as you say 'just get on with it' I can feel more confident.

    I'm also mentally tired and don't socialise very much or very well and if I don't feel great, which is of course a lot (because this is 'normal') I'm not great company.

    Thank you again.

  • I recognise everything you say about being tired and the mental tiredness. This, together with The presence of persistent pain in the lower part of your lungs suggests to me that you are struggling along with an infection that needs a good clear out. This is the trouble with bronch. It grinds you down and because we walk about when we need aggressive treatment doctors miss how bad we are. They are used to sudden chest infections in the 'well' population and the type of infections which those with COPD patients get.

    Ours is more insidious. I do suggest that you go to your GP now and explain how you feel and also get to a specialist.

    If your GP is unresponsive to you ( I have had several of them) it means that he/she knows nothing about bronch and you need to find someone who does.

    I know it is exhausting but with bronch we have to be our own advocates and vociferous in getting the right treatment.

    You have been allowed to slowly slide down the pole and that isn't good enough. With the right treatment you can feel much better

  • That was useful.

    A revisit sounds sensible. There is one named specialist at our hospital, who I haven't actually seen. I'll give the secretary a call.

  • Good idea. 👏

  • I have the same sort off stuff but its my right lung. Cant sleep as it sore. Can walk about as it get sore . Legs and feet get swollen. Cause off steriods. And it winter. So cold and flu all over.

  • To answer the last part of your question. Deciding whether you need antibiotics is where your knowledge of your own body and your instincts come in. If you don't feel well, you have more sputum than normal, a different colour and maybe some chest pain you probably need some. In bronch this is two weeks of a high dose of a broad spectrum ab. The trouble with lab tests is that in bronch they can often come back clear because many labs only run scanning for a limited amount of bugs. Many GPs do not realise that bronchs need immediate antibiotic treatment when an exacerbation starts up. The danger is that we walk around for a long time feeling under the weather ( which we are used to) and living with low level infection which can cause further damage to the lungs. You need abs to keep at home to start when you know that an exacerbation is starting up.

    Have you seen your bronchiectasis specialist lately? If not, or if you don't have one it is imperative that you get under the care of a good one. They can usually be found at big teaching hospitals. Take the name to your GP and insist on the referral. At the moment itdoes seem that you are being neglected.

    You need to be able to ask the expert about your queries and they should tell your GP how to treat you. They also decide whether you need abs by a different delivery system ( IV for a short period or daily by nebuliser), Which abs you should keep by you etc. My main relationship is with my consultant and her secretary. I only use my GP for the prescriptions.

    I hope that helped a bit.

  • Thank you. I have seen 9 different hospital doctors (teaching hospital). I haven't been for about 2 years but they did say they would be happy to see me again anytime. I can call the Secertary. I do have ABs at home but never take them as I really can't work it out. I have felt really ill with a cold a couple of times but the GP didn't seem worried. I think perhaps on one of those occasions I should have taken them.

    Very useful, thank you Littlepom!

  • great. I think that you are at a point where you need some specialist support and help to sort out in your mind if and when to take the abs. Call the secretary and get the ball rolling and after that make sure that you see them at least twice each year.

    Just make sure that you are seeing a bronch specialist not a general respiratory consultant because the latter know very little about bronch. Get the name. When you get to clinic ask the nurse to put your file on the pile of the specialist, not the registrar.

    Make sure that they tell the GP what you will need and then only take your advice from the specialist. Things are looking up. Good luck, do let us know how you get on.

  • Hi, i can i dentify with you. I have suffered with bronc for almost 6 years. But i knew before it was something more than asthma which i had since 1999. But brochietasis was not pickecd , i was told i had scared Lung which they thought i got as a child. But my life was nomal only i was prone to flues cold and pneumonia infections. But since bronch diagonosis my life started going down the hill. I cant leave house most times, cant socialise. Pefumes ,pollen and dust knock my lungs down till i am left needing hospitalization. Tireddness is another one . There is no quick fix because you have to send sputurm for them to test which infection you are dealing with. I have more than four types of antibiotics which i havevhad in the past. I record my systoms and most of the times it helps to know what type of infection i am dealing with. I see the Gp and and then they will tell me which one to start before my sputurm results comes. Keep a good diary of your broch, and the antibiotic you have taken. So you know which ones are more effective to treat some of infection you get. I mostly deals with two or sometimes nomal cold .

  • Thank you for the reply. I'm so sorry to hear what a struggle it is for you. Your advice to keep a diary is something I will do. I used to but will start again. Keep well. Xx

  • Hi there

    I think you just know when the time is right to take antibiotics.

    My bronch is like this if i can cough and produce mucus i am well...when that stops i am not.

    Thats the bit where my understanding of my symptoms and care kick in

    Jenny x

  • Thank you Jenny. I'll beat your experience in mind as that does ring a bell.

  • that is so true Jennie. That is how we slide down the slope because often we are too debilitated and poorly to realise that we need strong abs or IV -now and GPs really don't know about it. In early 2015 I walked around with pneumonia which developed into an empyema for six weeks. I went to my GP four times and they kept telling me to keep taking cipro because I was hardly coughing anything up. My brain had siezed up because I was so poorly. Finally I got into the QE in Bham via A&E and my consultant was horrified. It took two hospital admissions, six weeks of IV and aspiration of the fluid from my chest cavity to get me back on my feet. All because my GPs know nothing about bronch and I was too ill to recognise what was happening. The consultant told them that they nearly lost me and now they are constantly asking me how the bronch is. You have to laugh.

  • Gosh that's awful. Very glad you're well now. X

  • Oh my word littlepom

    How scary and totally horrific reading that.

    It really is shocking and disturbing how this goes on..we end up knowing more than our gps dont we...but we dont need our lungs more damaged do we.

    You sound very very brave x

  • Thank you dazzler. Everybody on this site is very brave. Every day we open our eyes and fight the boggart that is trying to get us. Be proud.x

  • Hi great advice from Littlepom. I don't have bronch only copd but I know immediately when I have an infection because I either cough convulsively or have a sore throat. If my mucus is clear but I feel ill I know it's a severe chest infection.

    You will get to know your own symptoms with experience. Remember the old maxim though - if you aren't sure then take your rescue pack anyway as it's better to be safe than sorry. xx

  • Thank you lilaclil. Also very helpful.

  • It's really something you have to monitor yourself because your body may react differently from mine.

    For me it will start with a cough which is hard to shift even with my inhaler (I also have asthma), that doesn't always mean a chest infection but it does mean I need to be more aware. I will start coughing up more and thicker phlegm and my breathing will seem more shallow. I will start getting pains in my left shoulder and under my left breast at the side of my chest (If you get this I would get it checked out though as it can be indicative of heart problems- I just know for me that it is what happens if I have a chest infection). Coughing and breathing will continue to get worse if I don't start antibiotics as soon as this pain comes, but it is the time when I'm sure it's an infection not just a cold.

  • Thank you. I wish it was easier to know when an infection is present. Maybe I don't get them? Anyway, you've all given me good indications and a revisit to the hospital is a good idea I think. Thank you everyone, all this helps a great deal.

  • I have asthma too lucy bird

  • I have asthma also

    Had rheumatic fever 9 years ago and just had a new mitral valve replaced.mine was so infected.

  • It's all very complicated with me. I have Asthma, and brochichietis, and aortic regurgitation all which can cause similar symptoms. I had my aortic valve replaced this year, so with recovery illness is worse, and also initially made it difficult to really know what was recovery, what was lung health, and what was something I should be concerned about for my heart. Now I'm largely recovered symptoms are easier but I have had to calm GPs who don't know me down because of where I get pain with a chest infection!

  • Yes i can relate to you here

    I have asthma,bronchiectasis,severe mitral stenosis as to which i have just had open heart surgery to replace my mitral valve.its certainly not easy is it 😢

  • Hi Dazzler,

    I also had rheumatic fever approx. 13 years ago. Just as a matter of interest - how did yours begin and what were you symptoms? It's still in my system and will return if my immune system is down. Luckily I had no long term effects from it.

  • Hi there,

    I actually had parvo virus which led onto strep a infection which was not treated as was waiting for the virology blood test result.

    So sore throat,chest infections,swollen joints.i was ill for almost a year..i never knew it was rheumatic fever until my mitral valve was diagnosed nearly 3 years ago

    I still get unwell now also but with other ailments all is enhanced sadly and then you start to identify which on it is.

  • I also have asthma, bronchiectasis, and have had this since I was a fortnight old, as I was a blue baby but am now in my 70s and although most of my schooling was missed due to having many terms at a time off from school/college, still managed to do well in life. Most days my lungs hurt at the bottom of the lung cage and cannot walk and talk at the same time, plus have bad arthritis in my spine.

    I hate the winter with the cold bugs as if someone has a cold they only have it for maybe a few days but I end up with pneumonia and it lasts for 2/3 months, but I think I am a tough old bird just some days do not feel as tough as I should. Let's hope we can get through this winter better than last year. October to March are my killer months, but this year I am not going to allow my body to come in contact, do try to be positive but sometimes it is very difficult. Good health to you all.

  • I found this video talk given by Professor Adam Hill called An Introduction to Bronchiectasis and what great care should look like. I can't paste the link for some reason but go to:-

    Videos.rsm.ac.uk and put the title in the search bar and his video is the first one in the list.

  • i have no symptoms of cough. phlegm or anything like that. around 4pm i start to get anxiety and cant get a deep full breath. sometimes i relax wait a minute and it gets in. other times i start to panic and then a downward pulmonary and mental spiral ensues. but once i fall asleep i sleep a minimum of 6-8 hours so i would think i am clearly breathing ok, it is just that 4-8 pm time that causes me grief

  • Do have a diagnosis of bronchiectasis? Is it dry bronchiectasis? Sounds like your body is waking you up at that time as it is having difficulty. Have you tried sleeping upright from 4am onwards? I presume you mean 4-8am and not pm.

  • no my breathing worsens at 4PM, and my current diagnosis is AIR TRAPPING. once i fall asleep, sometimes with the help of a benadryl i sleep 6-7 hours straight

  • How do My lungs feel ?

    Well as they are the largest organ in our body we take for granted that they work ,until we struggle to breathe.

    My Lungs feel as if the tissue 'aches ' at times especially around the lower lobes.I feel a tightness -Itchy , scratchy ,feeling in my throat ?/chest ? my voice changes to deep How can we explain such symptoms ...

    some thing is different and I know I need antibiotics

    Grace-Olive

  • ...aches and tightness are good descriptions. I would say the bottom of the lungs feel thick and sticky too sometimes. I get congested at the top too. I used to get prickly feelings at the top of my back but haven't had that for a very long time. Thank you. Strangely it does feel better when someone has the same experience; somehow reassuring that I can get by with these very distracting lungs.

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