Hi can you please tell me more about bronchiectasis as I found out last August that I have this by haveing a ct scan. All most every 3 to 5 weeks I keep getting chest infections and I am always out of breath even when I walk up and down the stairs I have to stop and take my inhalers. Thank you I like to know more on this I will be 60 in December and seems like my life is all ready given up. Thank you Tina
Miss tuncel mani. About my bronchiect... - Lung Conditions C...
Miss tuncel mani. About my bronchiectasis
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Babyboy12
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Hi and welcome . I found out in April 2020 that I have bronchiectasis as well - it had been mis-diagnosed as asthma for 20+ years with frequent (5 x per year at least) chest infections. Since I have been diagnosed I am on Carbocystine (thins the sputum) x 3 daily and am also on an antibiotic on Mon, Wed and Fri for ever. This has stopped my chest infections in their tracks. If you were diagnosed by a Respiratory Consultant they should be sorting your meds out following sputum samples etc. I'm 70 now and still managing to excavate now my meds are sorted. Good luck.
Hi digger I was told I had Asthma when I was in my early 20 and I was allways haveing coughs and chest infections until it got bad last year when my coughing would not stop and my Dr send me to hospital had a ct scan and showed up I had bronchiectasis. I am on 3 inhalers and also on carbocisteine also but I still getting out of breath and my chest hurts a lot when I breath do you have this problem. Thanks somedays my I can't sleep with the pain
Have you seen the respiratory physio yet. She gave me some breathing exercises that I do every morning to clear my chest, which has helped greatly. If you get to see one, ask about some gentle back mobilising exercises as your ribs joints etc could be stiff. I get breathless on slopes and hill (living in the Peak District in Derbyshire is not ideal) but am slowly progressing. I am also waiting for heart surgery for a congenital hole in my heart, so that might add my breathlessness.
Hi I am waiting to see them I am on the list so have to wait few more weeks I quest. Its my chest that hurt the most and my side when I cough. I am always tired car't sleep much. Thank you for haveing me on this group I did not know anything about it until my oldest sister told me about it. I was going to do breathing exercises in a video link but I got ill so I am on the waiting list I had both my covid injection but after the 1st one after two weeks I got covid and I was so ill with it since having it in February I have not been right. I am not sure in I want to have to 3rd one now. Did you had to stop In with the lockdown as I did had a letter. Thank you for getting back to me x tina
Is it possible that you have long Covid and it is this that is causing breathlessness and fatigue?
Hello could you tell me what app I have to go on to get my message as it goes on to my email or is that how it is thank you
Hi I just want to know I finished two weeks of antibiotics about a week ago but I can tell my chest infection as not clear up as I was bringing blood up this morning and was out of breath walking. Dr told me seems like your infection not cleared up so given me two more weeks of antibiotics and if still the same will sent me back to hospital.
Plus I never smoked in my life and when you tell people you got this they thing you smoke
Babyboy12
My lung consultant told me that bronchiectasis can be a result of some of the common childhood illnesses that we older generation were always exposed to, eg Friend up the road has measles, all local children went to visit so they too could catch measles!
The NHS website bears this out:
nhs.uk/conditions/bronchiec...
Around 1 in 3 cases of bronchiectasis in adults are associated with a severe lung infection in childhood, such as:
severe pneumonia
whooping cough
tuberculosis (TB)
measles
I stopped smoking about 35+ years ago and asked him if my prior smoking would have had anything to do with it and he said no.
Hi thank you. I always had chest infection when I was younger and I never smoked in my life it could be maybe when I was born I am a twin and my brother was over 6lbs in weight and I was less than a bag of sugar and was in hospital for months back than I do not thing they knew much
Hi, from the age of 37 I always used to have an extended cough for weeks after a cold and was treated with a puffer to use as and when needed and occasional steroids. In early 2020 a Locum felt I needed to be referred to the Respiratory Team; after many tests I was diagnosed with mild bronchiectasis (I didn't smoke) and was told that the condition was caused by having Whooping Cough when I was 37 years old! Another 37 years later my chest xrays showed as 'Normal', it was the CT xray that confirmed the diagnosis after 37 years! I have Rescue packs of antibiotics to use when I suspect a chest infection and I use a facial steamer to inhale steam to help clear lung mucus.
Hello yummybear do you still have bronchiectasis. For the last 30 years our Dr was treating me to asthma and I was always having colds and cough and chest infections so went back to see my Dr and she said I thing you got copd I said I never smoked in my life part from being around people that did. So went to hospital and the nice lady doctor I saw she said you have mild asthma but I thing you got bronchiectasis also but need to do a ct scan to see what shows on it. Had one within couple of months had a letter come through the post saying I got mild bronchiectasis. Since I found out all I been getting is chest infection after chest infection and coughing all the time and all ways so tried. I am glad you feel a lot better in yourself xx
According to my leaflet on bronchiectasis it's not caused by smoking. If you get very breathless as for a 6 week course of Pulmonary Rehab.
Hi, welcome,,i was diagnosed 4 years ago having been treated for asthma, reflux and pneumonia following multiple chest infections. Am now taking the antibiotic Azithromycon for. 3 days a week and am lots better. My respiratory comsultant has given me an antibiotics ‘ holiday’ until 29th September. If i get a flare up i am given different staged antibiotics as well. Dont wory, you should be taught of manage this condition through a respiratory physio and maybe pulmonary rehabilitation.This is what happens in the UK but i am unsure a out other countries.
Good luck! sops
Can you tell me please having bronchiectasis will it get worse as we get older and I was told no cure. I do get worried sometimes as haveing pains in my chest is painful. Sometimes I thing no understands about bronchiectasis they thing you get better. When I get out of breath and get chest infection I do not feel like doing anything. Can anyone also tell me please with having bronchiectasis do any of you have trouble swolleing as some times more often now my food get stuck at the back of my throat and that scares me
I was diagnosed with Bx in my late forties, after 10 yrs of being misdiagnosed. I am now 72. I feel better today than I did 25 yrs ago. Better even 10 yrs ago.
It took me years and several doctors to find the right fix of meds to take to keep me feeling good. Also, I retired 6 yrs ago (less stress), I moved to an area of the country with better air quality. Our house was checked for hidden mold. 10 yrs ago, I was diagnosed with an immune deficiency, so I go the outpatient infusion once a month to receive med by way of an IV.
Your environment, your stress level, the right mix of meds can make a difference in your health and management of Bx.
Also, you may want to try alternatives to just taking prescribed meds. I take Turmeric w/pepper twice a day because of its anti-inflammatory properties.
Talk to your doctor. If you don't get answers, see another doctor. If the meds he/she prescribes is not working, have the doctor try difference ones.
Hope you feel better, Beth
Thank you Beth for your message I will speak to my Dr tomorrow trying to get to see them these days are so hard to even book a appointment. Thanks everyone who message me on here been a lot of help. You tell people you got bronchiectasis and they do not understand. I will phone my hospital tomorrow also if I can get through. X
A very warm welcome to you Tina, although I am sorry to hear of your diagnosis.
I have had bronchiectasis from the age of 5 months old following double pneumonia and whooping cough at the start of the NHS, so in those days with little by the way of medication I was lucky/tough Enough to survive, albeit with damaged lungs.
There are a few genetic causes and for many of us the cause was an insult, as with me. For some the cause is never discovered.
What matters now for you is that you find online a respiratory consultant with a special interest in cf/PCD/bronchiectasis. You should e pect a consultant to check for elimination cf. they will also refer you to a respiratory physiotherapist who will go through lung clearance techniques and clearance gadgets to see what suits you best.
They will also be up to speed with your asthma. I too have asthma and It does make things more difficult.
It also sounds as if you need a medication review from a consultant
I know the wheels are turning slowly due to covid but best to find a consultant, at one of the larger hospitals close to you. You can go further afield but the downside to that is if you have an unplanned hosptial stay it would be at a local hospital.
I will put on a link for you to dip in and out of. The ERS are very reputable and I had the good fortune to be part of the patient advisory group for over 18 months, although I am no linger involved. In fact many of our friends on here with bronchiectasis were kind enough to answer questions asked by the consultants involved. It is updated constantly.
Enough to be going on with🙄
I will put link separately, ‘cos I know I will lose this stuff.
Love cx
Thank you for a lovely message I learnt more of here than I have with my own drs. I have got the pharmacy phoning me on Tues about all my medication so hopefully will get that sorted I am on so many as bronchiectasis is not the only health problems I got. But thank you for sending me the links I will do them. I am so sorry to hear you had bronchiectasis since you was so young how you coping now. Since I found out last year I keep getting chest infection every 4 to 5 weeks and it's getting me down as I get better than I go back down hill again. Right now I finished two weeks of antibiotics and steroids and I do not like to keep taken them as I know they work for about a month and starts again. How's everyone else but having covid in February after my 1stjab I have not been that good and get out of breath so easy.
Hello Babyboy12 and welcome.Along with cofdrop I am one of the lifelong bronchs and I continue to have a full life.
Please follow her advice, read the link which she gave you and find a good bronchiectasis consultant. GPs and general respiratory consultants don't know enough about bronchiectasis.
Self management through lung clearance, exercise and life style are the key to living with this condition, together with an experienced consultant to decide on the correct regime and means of administration of antibiotics when needed. They then advise your GP or arrange hospital treatment.
You can feel better than you do now when you get on top of it and we are here to support you.
Babyboy12 in reply to
Thank you I just looked it up thanks for that I will do these I got more of here with the two hours I been on than when I found out I had bronchiectasis over a year ago
Hello good morning first of all I like to say my name is Tina and its lovely to come on a group and talk about our health issues. As I found out I got bronchiectasis last year does anyone on here have it and do you find it that you haveing trouble sleeping and sometimes it's hard swollw food and get stuck in your throat and I start to panic. Thank you as the drs and hospital do not tell you much about bronchiectasis I look it up and does it come under illness thanks
Hi Babyboy12,that's how mine started in2014 with lots of chest infection regularly and after the ct scan I did pulmonary rehabilitation given resue medication 💊and prednisolone also breathing techniques with clearance of mucus devices and still do those everyday to ward off bugs.I also take a mucolyte to loosen up any nasty stuff in my lungs .keep active as much as possible and beware of germs from snotty kids lol
Hi, I cant help you with informtion about bronchiectasis but there will be others who have the same who can. I just wanted to welcome you to the site. Good luck. John
Hi babyboy12, I was like that for a long time until I saw a new consultant, he changed my seratide to fostair with saline nebs, also physio gave me a Arabica to help with the exercises. wow what a difference, I can breath a lot better and get to the top of the stairs it's great. It did take a few weeks to get used to it at first. Now I have not had any chest infections in the last year. Good luck.
Hi. In 2014, I had a chest infection with a bug, Staphlylococcus Aureus (the SA bit in MRSA) which in spite of a number of antibiotic courses, would not go away. This went on until my "own" doctor came back from his hip operation, and he sent me a the consultant at the hospital. He arranged a CTI scan, which showed I had bi-basal bronchiectasis. The bug was finally cleared by intravenous ab. That SA bug went on from end of March into November, and I am sure this is what has caused my bronchiectasis. In 2016 I had a lot of chest infections, so in 2017 I kept a diary and recorded 18 infections, so one every 3 weeks. In 2018, in March we found we had a black mould in our bathroom. The bathroom floor was replaced getting rid of the mould, and since then hardly any chest infections. Worth checking?
Thank you Lupton I will check this out since I found out I have bronchiectasis last August I been getting chest infection within 3 to 4 weeks and it's getting me down was up all night with chest pains. Can you let me know do you or anyone else who as bronchiectasis get pains. Its like can't do much. Thank you for everyone messages means a lot and I know more on here than I did a year ago
Hi Babyboy,
I have Bronchiectasis and suffer with bad chest pains which is normally one of the signs of a flare up and infection. The other signs for me are increased and coloured sputum also the sputum becomes thicker and harder to get up, more breathlessness, shallow breathing with an increase in breaths per minute and an irritating coughing. At this time I give my surgery a sputum sample and contact my GP while starting my emergency pack of Doxycycline antibiotics. The sputum sample is then analysed and they telephone if the results show any bugs and I need different antibiotics. When I am on the right antibiotics, they clear my chest of the nastier stuff and the pains in my chest disappear. Of course everybody is different and the signs, symptoms and remedies are different for each and every one of us. Hope this helps.
Hi Babyboy12- sorry to hear about your chest pains. I have bronchiectasis too and suffer regularly from chest pains (weirdly only on the right side of my chest). My consultant doesn’t seem to know what’s causing them and says that some people with bronchiectasis do get pain. I was only told I had bronchiectasis in February 2020 although apparently I’ve had it since a bout of severe pneumonia about 25 years ago and am still alive and kicking 🤣! I’ve been doing some gentle aerobic exercises everyday recently (from the BLF pulmonary rehab video) which has made me feel much better alongside daily chest clearance and carbocisteine. This week I missed a couple of days of chest clearance as we were away and hey presto the pain is back😳. I’ve asked for a sputum test as I suspect it may be an infection. Anyway to reassure you it’s perfectly possible to lead a full and active life with bronchiectasis- exercise and daily chest clearance are vital though. Take care and hope you get some good support from your gp x
Thank you for your message I have pains in the middle of my chest and does scare you. I have not had much support from my gp or the hospital as they say you got bronchiectasis and put me on 3 lots of inhalers and carbocisteine. I had the covid jabs after the 1st on I got covid and was so ill I throught my time was up. Have you been told that you have to go on oxygen machine later in life. I was getting treated for asthma for over 20 years but still was getting coughs and chest infections so I was send to hospital and when I saw the Dr there she said you have got mild asthma and not copd as my Dr throught I got she said sounds like you got bronchiectasis but will not know until you have ct scan and after haveing that It showed up. So that's when they put me on new inhalers and tablets
Hi there. I too have Bronchiectasis diagnosed 21 years ago and asthma since birth. I too take Carbocistine for thinning mucus and also have a flutter valve(ask gp/ physio) this helps shift the mucus. Ask Dr about going to pulmonary rehab great for giving you ways to help shift mucus through gentle exercise. There is lots of help out there. Talk to specialist via GPreferral if possible . I feel so much better and no chest infections since being on Azthromycin 3 times a week. Ask gp for help on this via referral. Good Luck.
Hiya.i too have bronchiectasis + asthma ( + other airway probs).As LP + others suggest - lung clearance is absolute must at least 2x day.i do on a smaller scale, approx 2hrly,whn aware of the mucous.
I use my salbutamol before doing anything + have learnt to change from running round to 🐢 speed.
Controlled breathing techniques are also essential - practise when relaxed so it becomes natural to use it whenever needed.
Hi and welcome ,I too was like you, constant infections ,worn out with constant cough ,after 18 months of treatment and investigation I had pseoudonomas and colonised with other bugs I am now on inhaled saline and azithromycin 3 times a week ,hope you get well soon .There is light at the end of the tunnel xx
Thank you tinker I am going to phone my drs back tomorrow as I am so worn and and my chest was killing me last night maybe need more antibiotics but getting fed-up taken them. I hope so as it does get you down
I really feel for you. I have been recently diagnosed with bronchiectasis which has been caused by auto immune disease. I keep getting an infection every four weeks too, it is constantly exhausting, the cough and mucus never ends. Also have the chest pain and choking on food very easily. I have found sipping lots of water helps, I am awaiting to see a lung specialist nurse, the breathing techniques seem to be very important. I hope you can find a way forward and a way to manage this cruel condition.
Hi. During one of my periods of constant chest infections, I was put on Doxycycline 500 (I think) for 14 days. This gave me esophagitus which gave me a terrible pain down my breastbone area. I took Gaviscon, which helped somewhat. I have bi-basal bronchiectasis which is behaving quite well at the moment. Also, for choking on food, check out acid reflux!
Do you mind me asking what bi-basal bronchiectasis is, I am new to all this and still learning. I have found Doxycycline helpful with infections but sorry to hear it gave you esophagitus,that sounds very painful. Also does bronchiectasis go together with acid reflux? Thanks for your advice.
Bi-basal bronchiectasis means there is damage to both my lower lobes of my lungs. I think acid reflux is usually as a result of having a hiatus hernia. This allows stomach acid to come up the esophagus into your mouth. Also makes it difficult to swallow. I used have trouble particularly with pickled eggs. I am on a medication, Lanzoprazole (there are others) and you can take Gaviscon, which control it pretty well. Your stomach acid is Hydrochloric and is quite strong, so anywhere outside of your stomach is not good.I believe acid from your stomach finding its way into your lungs can damage them.
I am sure a long bout of chest infections of a bug called Staphylococcus Aureus caused my lung damage. Hope this helps.
Thanks for your help regarding stomach acid etc. I too have had Staphylococcus Aureus on my lungs this year and is proving difficult to eradicate, just been told once you've had it, it stays at a low level inside the lung.
Eventually after 8 months of various oral AB's, my SA was sorted by a course of intravenous AB. However, one week later I had another bug infection, which was sorted by a regular oral AB.
It seems antibiotics is the only way forward, have you had any success with natural treatments?
Yes, AB's are all there is, and their effectiveness is waning. Personally, I've never believed in homeopathic remedies, so never tried any.
In answer to your question 'did I still have Bronciectasis', as I said in my previous text, I only had it diagnosed in early 2020, so yes. It is a condition I will have for life, it is manageable but alas not curable. Only the new Locum felt it was necessary to refer me to the Respiratory Team, after having an intermittent cough for 37 years, after being ill with whooping cough.The team arranged a standard chest xray which showed up as Normal but the Consultant felt I should have a high resolution CT Scan; the result showed I had mild bronchiectasis.
HiMy wife has Bronchiectasis, and this was caused by the medication she was taking for Leukaemia. You need to see a respiratory specialist for advice. She found using a flutter was better than anything else in clearing mucous. See media.allergan.com/actavis/... . She also takes NAC to thin the mucous. See healthline.com/nutrition/na... . I recently came across this as well: connect.mayoclinic.org/disc.... But do see a specialist.
Hi, i found that once i knew how to manage with correct breathing and medication to stop clogging mucus I am fine.i have supplies of carbosteine to help with mucus. i do get fare ups occasionally but just rest up, and take things easy. You should ask to see a respiratory physio for advice as i believe management is the key. I am in my 70’s and it has not become worse. Hope this helps!,
Greetings and Welcome, I see there are 42 replies to your query I hope you have found them helpful, As I've not read all the replies unsure if anyone has mentioned BLF pages on Bronchiectasis.
All explained here:-
blf.org.uk/search/site/Bron...
You need to keep on top of lung infections, if you can provide a sputum sample soonest for your surgery to send to the hospital for testing and to help determine the correct antibiotic for whatever is breading in your lungs.
From the above link you can also access the BLF helpline who will be able to advise you further if required.
Best wishes, I hope you can manage to stabilise things so that you can enjoy your days more than you have recently experienced.
best wishes
BK
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