Bronchiectasis

I'm 63 years old now and have had bronchiectasis since childhood. Life has not been easy but with determination I carried on, married, had a son who is now 40 and until last year I have worked since I left school at the age of 15. I consider myself to be lucky because, unless I get a chest infection, I don't become breathless. It is very tiring coughing productively, day in, day out.

The social stigma of chesty coughing has plagued me all these years.

From time to time I have to be hospitalised for 15 days to try and reduce the pseudemonas bug - nasty thing it is too! but because I have widespread bronchiectasis and the bug seems to be colonised in both lungs, doctors say it will keep on growing and come back to haunt me again.

Does anyone relate to this condition and lifestyle? If so please let me know.

19 Replies

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  • Hi - whilst Sarcoidosis has essentially ruined my lungs, they are also sure I have Bronchiectasis at the base of my lungs too. I take azithromycin to try and keep it at bay. I have been seeing a physio for the last 6 months to correct my breathing and this along with the azithromycin seems to have made a huge difference. I cough up in the morning but after that it's relatively cough free for the whole day. My sputum is monitored regularly though. I'm 41 and only been diagnosed 15 months although they suspect the Bronchiectasis to have been damaging my lungs since around birth.

    It's a bit rubbish isn't it? Marie

  • Hi MarieWF - thanks for your reply. I forgot to mention that I too take Azithromcycin 1 x 250 mg Mon,Wed and Fri each week to keep down the inflammation. It doesn't stop the coughing or production though it must be doing something. I don't know what Sarcoidosis is so I'll be looking on the web. Cheers Marie

  • Hi Maxi

    I was diagnosed with Bronchiectasis at the age of 5 which was caused by Pneumonia at the age of 6 months. I am now 62 yrs and have two grown up sons. I have been relatively well since an adult but like yourself have the awful chesty cough, which does wear you out day in and out and if I get a cold always goes to my chest making me need antibiotics. I am now alergic to penicillin so have to have others. As it is on both lungs I was unable to have surgery to remove the affected area.

    Yes it is rubbish and I would love to have a time with normal lungs to be able to do normal things as I do get breathless a lot and so restrict walking up hills etc. Jill

  • Should have read Hi MarieWF and Maxie sorry

  • Hi All

    New to this site, I too have Bronchiectasis i am 52 yrs old been reasonably healthy until 3 yrs ago started with a persistent cough, was treated for asthma until Ct scan August 2011 showed Bronchiectasis im still trying to learn more about how to help myself, but have been getting infections one after another and what with the cough find it all really draining and depressing, anyway my question is diet? do certain foods make it worse I usually have porridge for breakfast a healthy option, but have tried just toast a couple of times this week and my cough seemed to be better is this possible or is it all im my head!!

  • I have bronchiectasis, was diagnosed a few years ago. I am aged 60. I have had chronic brittle asthma all my life. The bronchiectasis is a result of too many chest infections after I had ovarian cancer and my lungs collapsed during the operation. I take 500mg Azithromycin x 3 a week and find this has cut infection by half. I have to do the autogenic breathing technique to release the gunk as it does not cause too much coughing, which causes asthma attacks. My consultatant tells me I have it in 25% of both lungs.

    My son was dianogised with Sarcoidosis of the lungs 3 years ago. I am beginning to think I could write a book on all three conditions with everything I have learnt!

    Milk does tend to make more phelgm in your throat. But I find things change daily and what might not be ok one day is perfectly all right the next. If I have an infection I stay clear of milk, cream, etc and drink hot vimto instead of tea or coffee.

    Keep positive and stay smiling is my outlook

  • I have bronchiectasis, which was diagnosed just over 2 years but had probably had since having pneumonia at 3 months. I'm 57 now. I used to take azythromycin but it didnt work so nebulise colomycin twice a day among many other things. Since I've been on colomycin i have had no chest infections. I still work full time, have the younger daughter living at home etc. I get very tired. I try to work at home twice a week if I can - my GP wrote a fit note saying I should. I don't do housework or shopping. The Internet is wonderful. Supermarket shop delivered to my kitchen!

    You just have to do what you can and then rest. I also go to the gym to exercise to keep my lungs going. Usually rest after the gym but it helps ....

    Good luck and keep in touch.

    Judith

  • Hi everyone, so good to hear all your updates, thank you.

  • like you i have had bronchiectasis all my life. i will be 74 in september and have six grandchildren, some years i have been ok and sometimes not., i am immune to a lot of antibiotics now but luckily they are always ahead with new ones.do not always take to heart what your doctor tells you about your health prognosis i never did and i think he would be surprised if he saw me now(he died of lung cancer even doctors smoked in my young days)as these last three years i have never been to see a doctor although i have to use my inhaler regular with that and lots of walking i manage to get rid of that horrible stuff which accumulates in my lungs every day. so i hope as like me you improve with old age.

  • Thank you so much for those motivating words Friendly - that will really help me as I get even older!!!

  • Yeah Maxie I can relate to your post. I too have had non cf bronchectasis since 5 months old resulting from double pneumonia and whooping cough. I am 64 and like you have one grown up offspring - although I have a daughter and now a delightful granddaughter. I had a lobectomy section when I was 15, but I don't think they would even do it in this day and age as my bronch is and was then scattered throughout both lungs.

    I personally, as far as I know, am not colonised with pseudo but there are many peeps on bronchiectasis r us who are. I am however colonised with haemophyllus influenzae and it is a bummer when it rears it's ugly head. I also have asthma and inflam arthritis.

    From your post I can tell you are a very strong and determined woman. In fact I think all bronchs are pretty strong and we in the main just get on with the nebbing and physio. Not saying it doesn't p us off sometimes, but we are tough cookies.

    XXX

  • wow cofdrop - you sound amazing - let's keep going us bronchs!!!! xxx

  • Hi Maxie .

    I too have bronchiectasis , also emphysema and asthma . My problems started when i had double viral pneumonia aged 2 3/4 and nearly died . I have carried on a normal life , Worked , married and had 3 children , eldest of which is now 38 . I have always been short of breath on exertion but have modified my life as much as possible . As i say , i have worked most of my life but working in a furniture manufacturers with sawdust and spraying did not help but it was the only work i could get at the time .I also smoked in my teens and early 20's , rebellious , actually i started under peer pressure and it made my cough more productive instead of dry and irritated therefore cleared my lungs which i stupidly thought was good at the time .

    I used to see a specialist at the hospital until i was about 9 or 10 when they said there was nothing more they could do , i'm not quite sure now what that meant but we took it that i was ok but had to be careful in the winter when i always had a chest inf at least 3 times, usually more , then i would have antibiotics and benelin cough mixture .

    I started getting worse when i worked in london , probably traffic fumes , and was medically retired in 1994 aged 38 . I wrote to proffessor Newman-Taylor at the Royal Brompton hospital and eventually saw him and was diagnosed with Bronchiectasis which i was told was SWYER JAMES or MACLOUDS SYNDROME , which is apparently caused by pneumonia in infancy . I now take ventolin nebs , spiriva , seretide , uniphyllin and o2 during the day and BIPAP at night . I don't think i have the pseudonoma bug though .

    Yes social stigma has plagued me too , coughing fits are so embarrassing . Things are a bit better now i think as people have more knowledge and the liklihood of it being TB is less now , i think people were worried it was that maybe ??.

    I keep trying to excersise and then another chest infection floors me again and i am back to square one , still i must lose weight so onwards and upwards .

    Dinny xxxxxxx

  • Know just how you feel, I've had it since childhood but have never let it stop me doing things. Mind you I get breathless even on very short walks. Get fed up of people saying'that's a nasty cough you've got!' My cough is very precious as it keeps my lungs clear of mucus every day. Good luck anyway.

  • Ah Dinny - you make me feel so humble. You really have struggled through life hey? Thank you for sharing your story with us. Have you tried aqua size at all? xxx

  • Hi all.

    Boy!. reading some of your stories makes me feel so lucky.

    I have asthma and bronchiectasis along with chronic pain and hiatus hernia.

    I work as a lawn mower repair engineer, January past I was floored with infection and passed out at home struggling for breath. Woke up ( luckily ) in hospital three days later to a lovely nurse sweet talking me. ( thought I had died and gone to heaven ).

    I promptly gave up smoking!!!!.

    I now again, am getting very breathless at the least amount of activity and feel I am getting an infection again tried to make an appointment to see doc only to be told two weeks in spite of telling the receptionist of my condition.

    Am scared to go to hospital as at last two week admission an intern gave me a row for not seeing my GP. his comment was that's why they are there we cant be expected to replace him. I was discharged from hospital much to the objections of my attending nurses, Frankly I was disgusted with the lackadaisical attitude and lack of info from the doctors at hospital and it took almost three months for my GP to get a hospital report on my admission and condition.

    I am 62 and as I said, have other health issues but I take my hat off to many of you here for your courage and determination.

    Tom.

  • Hi Tomc

    I also have Bronchiectasis, only diagnosed last April. I have found that you must fight for help. GP's are good at what they do but they are not specialists. You need help from people in the know. I have just started seeing a pulmonary physio and I also go to a Pulmonary rehab class (I make time even though I work) My Breathing and chest clearance is much,much better now and I feel as though I can now live with this thing instead of letting it get on top of me. Mixing with other people with lung conditions also makes you feel not so alone with your problems. MY Hospital are very slow in releasing my CT scan results also and the physio needs them to make sure he is doing the right things.Looks like I may have to do some more pushing!

  • Hi, as a baby I had Pink Disease (my GP has never heard of it so only help has been on internet for information). it causes, along with many other problems, Mercury Poisoning which in turn damaged my lungs (and a lot more besides. My lungs callapsed when I was 13 years old causing Bronchiectasis and since then lungs have gradually got worse. I also take Azithromycin daily along with Seretide 500 twice a day,Tiotropium once a day, and 6 carbosisteine tablets a day (along with other medication for other problems relating to the Mercury poisoning. I am now 64 and to me the worse thing has always been the embarrassment of the chesty cough and the mucus. My sputum is never checked. I've been in hospital so many times, especially as a child, that staying in hospital has never bothered me. After all this complaining I am still able to enjoy life and my family. I'm 64 now and my painful complaints like arthritis bother me more.

  • Maxie I am 59 now, recently diagnosed bronchiectasis, asthma since childhood, COPD 10 years. Identify well with social stigma of coughing. Been advised by the health police to see a doctor, try honey and lemon and asked if it's catching. Recently went into hospital first time with breathing in 30 years. Pseudomonas! What a pig of an infection. Had 5 weeks co-amoxiclav followed by 2 weeks ciprofloxacine followed by hospital and 10 days tazocin. I absolutely identify with what you are saying. I can't work anymore. I have osteoporosis from predisolone for breathing. Ruptured achilles tendon from the same. Coughing is exhausting. Like being on the ropes and thumped by Joe Frazier. I do get breathless unfortunately and my walking has diminished. Keep going mate.

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