zen.gif I was diagsnosed with Mild Basal Bronchiectasis in 2007. It took me a lot of energy to try to get anwers for my increasing shortness of breath and a very competent and caring doctor in a specialised hospital for heart and lung diseases and the help of my gp,  to try to find out what was happening to me and why my lungs felt as it they were feeling up with mucus all the time. After a cat scan, it all became clear. Because if you have a lifetime history of lung problems, you know the changes in your lung pattern and you know when things are not right … so it is up to the medical world to find and give you answers.


 is a very rare and chronic condition and it belongs to the group of diseases identified as chronic obstructive pulmonary diseases (COPD) in which mucus accumulates and sticks in the airways of the lungs, called bronchi. As a result, the airways become infected and inflamed, eventually leading to enlarged and weak airways, which allows more mucus and bacteria to accumulate. Eventually, it leads to the destruction of the airways.

Origin of  my bronchiectasis
I had it at birth which is a probable possibily according to the doctors. The other been a long life of repeated bronchitis and at times, a pneumonia which may have dramatically impaired my lungs.

Lungs with bronchiectasis
First, inflammation occurs in the walls of the airways . This inflammation causes injury to the airways. The resulting loss of the normal defenses in the lungs leads to the loss of the ability to clear mucus. This makes the airways susceptible to infections. Repeated lung infections can worsen the damage to the airway walls.


Among the three types of bronchiectasis I have :
Cylindrical  bronchiectasis and it refers to mildly inflamed bronchi that fail to taper distally. It’s located at the base of both my lungs though the disease is starting a bit everywhere.

Symptoms of bronchiectasis:
– a cough and often raising mucus from the lungs. With infections the mucus may be discolored, foul smelling and may contain blood. Chronic productive cough is prominent, occurring in up to 90% of patients with bronchiectasis.
– Fatigue, shortness of breath and abnormal chest sounds can also occur.
Some people with bronchiectasis also have chronic sinusitis. This requires further evaluation since bronchiectasis and sinusitis may be due to other diseases. If left untreated, symptoms of bronchiectasis may progress. Further symptoms may include increasing shortness of breath, worsening quality of life and even heart failure.

Diagnosis of bronchiectasis
– A complete medical history and physical examination.
-Blood tests
– Breathing tests, called pulmonary function tests. These determine the presence and severity of abnormal airflow out of the lungs.
– A CT scan
– X-rays
– Testing of the mucus to identify any bacteria present
– Checking oxygen levels in the blood

Bronchiectasis is not curable. The goal for treatment is to control secretions and minimize the risk of infections.

Dealing with bronchiectasis as far as medication and treatment go, is pretty much like dealing with asthma:
Inhaled Short-Acting Bronchodilators; Inhaled Long-Acting Bronchodilators and  Inhaled Steroid Medicine

Conditions with bronchiectasis
– Sinusitis which I suffer from, now and then but I must say it is very rare, though I often have sinus pressure.
– Gastroesphageal Reflux for which I have a daily treatment. The backflow of stomach acid into the esophagus. This reflux response may aggravate lung problems. In my case, it always leads to an athma attack.

Techniques to clear the mucus. So far I have not been able to clear the mucus.
If you produce a large amount of mucus, you need to clear it. Chest physiotherapy and postural drainage are used to remove secretions from the lungs. An individual program is usually developed where exercise and breathing techniques to clear the lungs of mucus are taught.

Conditions contributing to Bronchiectasis should be treated
– Prompt removal of any foreign object in the lungs.
– Treatment of immune deficiency disorders with immune globulin if appropriate.
– Treatment of ABPA (allergic bronchpulmonary aspergillosis) with steroids and anti-fungal agents.
– Treatment of chronic infections such as non-tuberculous mycobacteria.
– Surgery is occasionally indicated – usually only if bronchiectasis is very localized in the lung and medical treatment and other therapies are not effective.

Managing bronchiectasis
– Give up smoking and avoid exposure to passive smoke; second-hand smoke is as bad. I keep repeating it to everyone I know who smokes. I rarely get an approval and a willingness to stop smoking but I am on a mission to help people avoid the condition I have to live with every single day of my life. And I did not smoke, a lot of people around me did since my early childhood. Nowadays it is impossible for me to be in room with smoke or next to a person who smokes.  Because I cannot just breathe, it is as simple as that. And I always appreciate when people make an effort around the fact I am ill because I have refused invitations and parties because I just cannot deal with the smoke, it makes me breathless.
– Get a flu shot every year in the fall.
– Get a pneumococcal vaccine every 5 or 6 years
– Exercise regularly because this helps you breathe easier by improving your muscle strength and tone and helps improve clearing the mucus from the airways
– Eat and maintain a well-balanced nutritious diet and drink plenty of fluids and avoid dust and other respiratory irritants.

The complications of bronchiectasis . Among those I have the first three:
 pulmonary hypertension ; ESR raised ; breathlessness; cough ; haemoptysis ; empyema ;   respiratory failure ; pneumonia ; digital clubbing ; abnormal sputum ; yellow nails ; short stature ; right ventricular ; hypertrophy and AA amyloidosis.

180 Responses

  1. Hi, I’ve been coughing sputum since childhood and recently and I was coughing up blood in sputum, I found out I have Bronchiectasis. Lately i’m coughing blood alot as i’m in Dubai(sand storms are frrquent). Dear all, I’m worried i have to live with this all my life. Please tell me how is your experience and how are you coping with it, specially when you go to work?

  2. Hi Zubair, I must say the part of the world you live in is not really ideal for that type of illness. Unfortunately, it is not curable but it can be treated with some medications that will slow down the progression of the disease, Bronchiectasis being a degenerative disease. I myself had to stop working on the advice of my specialists. Though I carried on working years before I finally stopped as I was always ill and had to be on sick leave much too often. I hope you will get better and you have good specialists where you live.

  3. Hello, I just found you on the internet. I also have almost exactly the same medical problems as you. I am 69 years old and was diagnosed with Bronchiectasis changes in my lungs in 2001.

    I won’t write anymore until I know we have contact.

  4. Hi Donna, you wrote me a long time ago but the summer was a bit difficult and I’m just starting to get back on track. How are you doing?

  5. Hi Carolle,

    Love your blog! Considering starting my own for this journey. I have cystic bronchiectasis in which I’m told is on the moderate to severe end of the spectrum. I have mucoid pseudomonas which recently became antibiotic resistant to cipro – so a PICC line and TOBI are my main drugs. Recently started azithromycin, long term care. I do the smart vest daily. I’m 33 now and was diagnosed with bronchiectasis at 31 after a lifetime of battling pneumonia, bronchitis, aspegillus infection, ABPA and most recent a bout with Nocardia. Doctors have run an expanded CF test as they are convinced i’ve gone a lifetime undiagnosed. What bacteria do you harbor and how are you kicking it’s butt??!!!😉


  6. Hi Felicia ! Thank you:)
    You should write if you feel like it because it’s therapeutic. I’m sorry you were diagnosed so late in your life because at least something could have been done to help you to deal with all this.

    Even though I have cylindrical bronchiectasis, I do not have a “particular” bacteria, at least so far, and the only thing I’m told when I’m sick is that I have a lung infection and my ESR is elevated. In fact, it’s often elevated. I’m usually given antibiotics like Clarithromycin and Prednisone, or if things get really bad I’m hospitalised and put on drips. I take a lot of meds every single day and I have always the option to plug myself to my VPAP in case I cannot breathe well. I have a slow pace and I take it easy, as I’m easily breathless and the lifetime asthma is not here to help. My big allergy is dust. Apart from leaving in a bubble, there is no solution so it’s one day at a time. I had to learn to slow down and keep my spirit up.

    Breathe easy !

  7. i am interested in talking with people who have bronchiectasis like myself to discuss how they coping

  8. Hi Pamela
    With a lot of ups and downs to answer your question. How are you coping ?

  9. I am 45 and was diagnosed about 5 years ago. I have had asthma and bronchitis my entire life. In 1998 I was also diagnosed with non hogdkins lymphoma and my Dr thinksi have brinchiectasis due to the extensive radiation on top of my underlying problems. I am however glad to be alive. It is just very frustrating and when I get an infection I can’t seem to get rid of it. Right now I have been sick since end of Dec on and off but have been almost non functional for last two weeks. It is nice to know there are more people out there struggling like I am.

  10. I was diagnosed with Bronchiecstas at age 8, 9, or 10. It took two doctors to diagnose me after years of random testing. I am 37 now , I go up and down with this illness; but from age 19-27 I seemed kinda normal. But it’s rearing it’s ugly head and now I wonder if this next chapter is going to repeat ; with lots of hospital visits , another collapsed lung, ect.. My mom told me I would grow out of it, ignorance must be bliss for some people:(. Self pity is a weak trait of characteristics but now that my lungs have been shutting down on me lately… I so need some encouragement from someone.

  11. Pamela.
    I too have the damn thing. I was diagnosed when I was seventeen when I went for a medical for a job. Now after 2 children, 2 grandchildren, so far and reaching 61 years of age I am still alive. I have had a few visits to hospital and now both my lungs are affected, I am in good general health and I think the thing that kept me so well was the fact that I did the exercises every day religiously all my life once a day and I still do them. I now find that I suffer from shortness of breath when I do anything too strenuous like walking uphill etc, but T.God I can cope with everything else. Hope this is some help.

  12. Hi Kimberly,
    Unfortunately, Bronchiectasis is a lot of ups and downs for some of us. Booken is right to say that excercise is a good thing and keep doing things as long as you can. I certainly would not say or call worrying about what is going to happen next : self pitying. I think the sooner people accept that for some life is difficult and talking about one’s feeling is actually good for the soul. Everyone is different and while some are stronger than others, there is, I’m sure, times when everyone is worried and scared. It is a draining disease. I’d say live the good moments to the full in order to get the energy when you’re not doing well. Personally, I found meditation helps me a lot. I hope you’re going to get better. Breathe easy !

  13. Hi Caryn
    You had to show strength and determination. I understand the “glad to be alive”. Infections seem to stick to our lungs and weaken our body in such a way it’s difficult to fight them. I hope you got better and life is smoother for you now. Breathe easy !

  14. Hi Bookeen,
    It’s fantastic to see you are doing so well, despite the disease. You’re so right in saying that excercise has been the drive for you. Because it builds up strength and allows you to function much better. Breathe easy !

  15. Thank you Carolle and all for the encouragement.
    I went to Whistler,Canada this weekend. I took your advice.
    Although, a little sick and spitting up blood,self pity is not the way to go. I took a little walk around the village and enjoyed the mountain landscape. I only could stay for one day, the altitude usually is risk for people like us.. it was so beautiful there. SO worth it, I maybe slower than some but hey… I’m still here:)

  16. I too suffer from bronchiectasis. Diagnosed over 30 years ago by two different pulmonologists, I thought my life was over. My husband, a D.C. did a lot of research and started me on supplements that thinned the mucous and helped with the sinusitis, plus I had a lot of people praying for me. My last really bad reoccurrence until this year was 26 years ago. I was always a faithful “in shape” exerciser which I know now helped a lot. I realize now that STRESS is a number one factor in causing a flare up. My daughter was hit by a car while on her run and I flew out to take care of her (in a very high altitude state), did not rest for 8 days and have been battling getting my health back for 8 months. Haven’t been able to exercise, have been on several antibiotics, do acapella, postural drainage and just when I was almost well, got a cold and it went straight to my lungs! I’ve decided at last, to retire this year from teaching and not expose myself to all the little germies out there. It’s not worth it! At least I was able to work for 24 years. I’ve also found out through trial and error that some foods produce a lot more mucous in me than others even though the M.D.s “poo poo” the idea. Have been through the pity party myself but am determined to get my health back!

  17. Hi there, like the blog. I to was diagnosed with chronic bronchiectasis at around 15-16, im 21 now. I used to sit in the bathroom coughing up stuff for like 30mins to a hour every morning before school but just over 2 years ago I developed Cryptogenic organizing pneumonia and was sent home to die, but thank you Jesus about a week after I left the hospital it disappeared. After that they put me on prednisone and now I hardly cough anything up anymore and my wheezing is almost gone. Sadly the sickness jaked up my lungs and I still get out of breath walking through my house but it’s nice not coughing constantly. I was wondering how you or anyone else with bronchiectasis sleeps? Like at what angle do you sleep? I got so used to the hospital beds and falling a sleep sitting up that i bought an adjustable bed so i can but im wondering if it’s bad to sleep like that.

  18. I’ve had bronchiectasis all my life; docs finally put a name to it 3 years ago. Have done hours and hours of research to understand and have been looking for another patient with what I have. I also have mycobacteria avium complex. I can see from these blogs that I have been in denial, always expecting to get over this. However, it is clear today that the integrity of my lungs is eroding slowly as time goes by. I have to lead a quiet life and stay away from all the bugs out there; hard to accept; have been fighting that. The fatigue is overwhelming, though.

  19. does anyone have bronchiectasis with a +3 Pseduomonas Aeruginosa bacteria?

  20. My husband was diagnosed with bronchiectasis last year what physiotherapy exercises have some of you found work for expelling the mucus? He coughs a lot he uses flutter valve some didnt think acapella helped

  21. Hi all,

    In 2004 i went into hospital after being at home sick for 2 weeks. my body was shutting down (all my organs, Everything) i ended up with double pneumonia and the doctors just thought that i was bulimic as i couldn’t keep my food down as my intestines had also stopped working. after a week in hospital they managed to get everything working so i was sent home. 4 years later i started coughing and coughing. went to the doctor and they found out i had bronchiectasis and gave me antibiotics left right and centre. nothing was helping it. constant recurrent chest infections. i complained to several doctors that i felt tired all day and they just said low iron levels its normal for a woman. i kept telling them something else was wrong. one doctor finally did a test for CVID and bingo thats what the problem was.. i didn’t even have measurable readings of immune globulin in my system i was told to see a specialist that dealt with these problems and she straight away had me on monthly lots of intragam. i am now feeling a lot better although i notice that alcohol has a massive effect on my health. i have just started fortnightly infusions so hope that makes me feel even better. as for sleeping well i find that i have more fluid in my left lung so i sleep on my right side to let the fluid drain out over night in the left. i cant believe it took them 6 years to fully figure out what was wrong. glad im still around.

  22. dont sleep on high pillows makes one uncomfortable,neck strain and lack of sleep. 2 pillows desirabel for good sleep and no neck strain

  23. Hi Melissa,
    The diagnosis is overwhelming indeed. Adequate medication and care are very important for the well being of a patient. I’m really sorry to hear about your daughter, I hope she’s ok now. You have to give yourself time to recover from all the worries and the lung infections. It was very wise to stop teaching. You seem to have cope very well with the disease and kept active in the past and I know how hard it is to have a hard time to recover from the lows. With time we learn what makes our body well or unwell and we adapt as well as we can. You are a very courageous and determined lady and I have no doubt things will improve maybe slowly but most certainly surely. Breathe easy !

  24. Hi Joey,
    Lung diseases are not easy to deal with and I am glad you are doing much better. I think it’s a very good idea to have the type of bed you have. I wish I had because indeed the hospital bed is very adequate. As long as you do not have any back problems I do not see why you should not sleep the way you do. It’s certainly easier to sleep propped up, the breathing is smoother. I personnally sleep sitted in my bed if I wheeze too much when I go to sleep. Otherwise, I have two pillows or more. I sleep with a Vpap so air comes to me with not much effort. I usually sleep on the side. Breathe easy !

  25. Hi Ireba,
    Bronchiectasis is a degenerative disease and there is no cure. However, you can try as best as you can to make your life a happy one. Once you know what to avoid and slow down when your lungs are tired, you will be ok. I know the psychological aspect of being a patient of such disease is not simple. Some people deal with it well and some do not. Some people are able to do a lot and some are not. We are all very different because our bodies are. You may feel drained one day and it’s ok to feel this way and you have the right to be upset. Accepting your disease and its limitations can be a path to emotional recovery. Breathe easy !

  26. Hi Judy,
    Maybe someone will answer you. I do not .
    Breathe easy !

  27. Hi Sharon,
    I think everyone has their view on what works the best to expell the mucus. I was shown ACBT while hospitalised. Personnally it’s not working because my major problem unless I cough a lot and I am very unwell, is that the mucus does not want to get out. I have a flutter valve too. Chest percussion helps me a lot better. Breathe easy !

  28. Hi Anneke,
    Better late than never as we say, though it’s really outrageous. I’m glad you have a diagnosis and that everything was dealt with accordingly. I’m glad you’re feeling better too. Breathe easy !

  29. Hi Paul,
    You’re so right about the neck strain. Breathe easy:) !

  30. HI All,
    I have had bronchiectasis since I was born and I have sitius invertus. I was diagnosed when I was 13 and now I am 31. Everyday is a challenge for me in work, as when I start of in the morning I am not too bad but then by midday my lungs start to fill and i go look for an empty rest room in work as I am so embarrassed having to cough up so much stuff , I feel a bit relieved if im lucky enough to get an empty restroom. I could be waiting a awhile! Then by the time I am home from work I am full again and I try and hide this from the boyfriend and wait until he is out and cough up more! I am so paranoid about it!! its just a constant battle.
    I am pregnant now and this is causing a challenge for antibotics, the doc has prescribed me with Azithromycin which I hope will be ok for the baby. The doc says it is but really hate taken antibotics when Im this way. Its terrible cause even when I laugh properly my laugh sounds awful with such a rattle all the time. I feel better looking at this site as I am not the only one. I know I could be whole lot worse and I normally never complain to anyone as I try to hide it from people as much as I can !!! just wish theyd come up with a cure!!:)
    Anywho it was good to get this off my chest pardon the pun!:) I do think exercise is great even though its a lot harder for people with this condition.

  31. I have been recently diagnosed. Along with the disease I have GERD, MRSA, FIBROMYLAGIA. I did understand the severity of the disease until of late. It was a mystery to me why I kept getting reocurring infection. I will take a round of antibiotics and a couple of weeks I would be taking another. I have been hospitalized several time since being diagnosed. I am taking 3-1200 mg of Mucinex DM to help with the mucuos, Nebulizer treatments 2x a day, and inhaler every 4-6 hours or as needed. I was takinf Nexuim for the GERD but it does not work properly now. I had one physician to recommend GERD surgery while another was not sure it would do any good due to my lung disease( oh my I said it, I could not put these two words together and relate them back to me). My pulmonolgist suggest I apply for disability. Anyone else has been suggested this and if so how did you go about the process?

  32. Hi I was also diagnosed with brochiectasis in 2010 after coughing up blood. I had pnemonia as a baby so that may have caused it. Everyday I have an annoying habit of having to clear my throat its enbarssing in public. I worry I could have cystic fibrosis the doctors wanted to test but I havent been able to afford it yet. No one in my famiky has,it. living with brochiectasos is miserable and I worry about my life expectancy, I have two small children.

  33. To Tiffany Rios,
    As far as life expectancy is concerned, nothing is going to happen to you. You need to maintain ur self only and you can do anything means anything as a normal person.
    Ur case is 99% similiar to mine. I was also diagnosed with this prob in 2010,was only 30 yrs old, coughing up blood, had pnemonia as a baby.
    I was told by doctors that I will spend my remaining life on bed but only 1 doctor said that nothing has happened and u can life a normal life, just need to have faith in urself. I spend hours on walking for 2-3 months. Today, I am doing a very hectic job involving a lot of mental tension, working hrs 10-11 hrs daily under harsh conditions with no holiday but is focussed on health and job only. Earning good and able to run family fairly good, able to help others in office also.

    Just believe in urself, be focussed.

  34. I was just diagnosed with mild central bronchiatases
    I had empyema in 2000. I had enlarged lymph nodes and have been followed by a pulmonologist for 2 years. On my last Ct scan it showed the bronchiatases. What are the exercises Charlotte mentioned.? What about the natural medicine that thins mucous. My doctor said

  35. Hello eveyone, I was diagnosed with Bronciectasis when I was 15 years old. The doctors told me to do breathing exercises and that is when I decided to take up running. I am now 53 years old. I have religiously done posteral drainage with percussion everyday of my life without fail. I have run in 22 City To Surf races which is a 14klm fun run and ran my first half marathon (22klm) last year. For me the running has kept me well. Hope this gives you hope. Keep well!

  36. I am writing from India. I have asthma (under control) since 1980s. I had bronchiactasis in Aug 2011. A really severe attack. I am using the Vest for the last three months or so. I suppose it helps. Has any one tried the Buteyko method…..
    Ms Anila Gupta

  37. I was diagnosed with Bronciectasis February of 2009. CT read properly for the fist time by a new CT Doctor and a specialist. I was 60 years old at the time. Now obviously 64. To date I have NEVER been healthier, I repeat NEVER BEEN HEALTHIER. The specialist started me on 10 days of inhaled TOBI each month, now I am down to 7 days ever other month. I started exercising every day for 45 minutes to an hour on an elliptical getting my heart rate to a minimum of 130 BPM. I do get a flu shot each fall and I have had the Pneumonia shot. Now the healthier part – not one cold and not one infectious flare up since 02/2009, NOT ONE. I also use the alcohol based hand sanitizes all the time, even have four in each car. I have also gotten into the habit of not touching my face unless I’ve washed my hands or used sanitize

    Based on my personal experience if you are not under the care of an aggressive specialist get there. Get on Tobi, it works beyond your dreams. I was misdiagnosed for over 10 years by another specialist and had monthly infections with two ten day courses of regular antibiotics each month. Now as noted above, just the Tobi every other month. .

  38. Hi ,I was dx w/ bronchiatasis several yrs ago and also have a trach. have had many problems that all of u have had and have found not an easy road. lots of hosp. stays, PICC lines, what I find interesting is that many of you have dev. immune def. prob. esp. from our repeated useses of prednisone. another thing I found that randomly happened for no reason is that my body for no reason just quit absorbing iron, dont know if it is at all connected but it seems to happen at same time. I have developed MRSA, pseudo, aspergellious, plus what I consider just a plain ole vegetable garden. I seem to catch what ever variety is coming along that part. month. I find the hardest thing to deal with is the shortness of breath , I try to exercise is sm increments to increase the work load but not always very successful. I have a saying”if I wake up in the morning and I can walk and talk , anything else is a plus in my life”.

  39. what is TOBI? I wear a vest 2x day, nebulizer version of symbicort and azithromycin plus allergy meds and still cough up yellow mucus. Is TOBI a med?

  40. Tobi is an inhaled antibiotic. Each dose is in it’s own vile, kept refrigerated until use. Tobi is administered through a nebulizer. The drug is a primary drug used in the treatment of Cystic Fibrosis, which I do not have. The drug is very expensive and can only be secured from specialty pharmacies. The side affects with me are a feeling of mild flu for the days I am taking and a day or so after. I am now down to 7 days every other month from 10 days each month at the start of treatment four years ago. I recently saw my specialist and had a new CT done, the area of the Bronchiectasis is shrinking. In addition to the Tobi I also use a Pulmonary Flutter Valve daily as well as an hour on an Elliptical. Both activities help to clear out the build up in my longs of mucus, so that throughout the day, no coughing and no mucus comes out but each morning with the two activities I do expel some. Less each year and now down to almost none when NOT using the Tobi. When using the Tobi it is a significant amount is produced but instead of yellow green, most is white.

    Best of luck

  41. Thanks. I am seeing a new pulmonologist for 2nd opinion in a couple of weeks. As long as I stay in the house I do pretty well, but outside activities really get the mucus going and nighttime coughing up mucus. I am an outdoors person so this sucks! Thanks for the info.

  42. I was diagnosed with bronchiectasis 11 years ago (I’m 66). There are a couple of natural products I use that really help to loosen the mucus and make it easier to cough up — bromelain and mullein. Also, drinking lots of water helps. My aunt by marriage told me her father developed bronchiectasis in his forties and lived to be in his nineties. That always gave me encouragement!

  43. I am 62 and have had bronchiectasis since I was 3 years old. I have kept myself going by sheer determination and antibiotic therapy. I am now colonised with PA which has become resistant to cipro. I have also developed a heart problem which means that I can no longer take azithromycin which gave me a very good quality of life for 5 years but interacts with the heart drugs. My clinic at a well respected hospital are now looking at giving me nebulised TOBI. I see from this site that many people have been on this drug for years but my consultant told me at least 4 years ago that if I had CF he could give it to me at any time but that as it is non CF bronchiectasis he could not.
    Now my clinic have to make a case for funding for short term use and my GP says that she will have to go and beg for the money to give it to me. In England the research and treatment of bronchiectasis is lamentable. There are very few, small studies on the efficacy of various drugs in our treatment. Having taken part in several drug tests I can tell you that the various drugs work and yet when they are marketed they are limited to CF patients and we who have tested it for them are denied access. For years I was told that bronchiectasis was a ‘dying disease’. Eventually we would all die off and there were no new cases so it did not warrant sufficient expenditure. In fact there are more people being diagnosed with this ‘dying disease’ than at any time.
    We have the same bugs in our lungs, the same condition in our lungs and our lives are a similar round of infections, debilitating exhaustion and hours spent getting fluid off our lungs.Yet we are treated as a condition unworthy of the drugs and other support that CF patients receive.
    I am sure that I am not the only person using this site who has spent a lifetime struggling against the monster within in order to appear to lead a normal life.
    So why don’t we support each other and stand up and shout about it.
    We are too exhausted that’s why!

  44. I am reading this blog for the first time, as I breathe my TOBI, and get ready for another busy day. I’ve had bronchiectasis all my life, diagnosed when I was 12, had surgery twice to remove dead lung tissue, and have done lung physical therapy, first by myself but now with help from family and friends, for several decades. I think the physical therapy is responsible for my ability to lead an active life. My parents were told I would not survive to adulthood, but I just turned 66.
    Learning to breathe deeply, pay attention to (be mindful of) breathing, doing a lot of walking, and having good doctors who listened — all these have been important. I also avoid cow milk products, use ginger and turmeric (I have craved ginger since early childhood), and am very careful to avoid smoke and air pollution when possible. It isn’t always possible.
    How exiting to find a blog like this! I would love to share breathing ideas — this has helped me so much, but there is much more I would like to learn. What sort of breathing exercises do you all do?

  45. I am 29 years old and have just been diagnosed with cystic bronchiectasis. I always figured I had something for a long while but I attributed it to smoking. So after waking up at night literally choking on the mucus I was bringing up I quit smoking. Then the cough never went away or got much better. After several lung infections and 2 years later I finally went to seek medical attention. I had been dealing with lung infections for many years but always thought it was from my smoking.

    I am a mechanic in the Canadian navy, I think my occupation has aggravated my condition, I breath in exhaust fumes, diesel fumes and general dust and irritants daily. The medical system I am going through (military medical) has diagnosed me with this condition. Im told I will see a specialist next month and we will go from there.

    Thus far I have been told the name of my illness, the probable way in which I got it and what the effects are. I have also been told I may need a section of my lung removed. I havent been given any coping techniques, prescription drugs, or advice on what to avoid to prevent recurrent infections. I have been diagnosed and simply left alone to carry on as per normal until next month when I see a specialist. This has me rather anxious and more then a little frightened. I have learned a good deal by doing my own research online.

    I guess I just needed to vent and explain my situation. I’m very much happy to read of people living a healthy life here. I have a wife and three young children to raise and support. I have many concerns.

    Thank you.

  46. replying to the person who found metronidazole to be useful. This drug acts against anaerobic bugs in the lungs. They are just one of the types of bacteria which we get. Unfortunately, like all the other bugs, the first time an antibiotic is used which attacks the bug, it is marvellous. Then it comes back and the drug is less effective. I had several years of increasingly frequent doses of metronidazole. It is a vile drug. The anaerobic problem was finally solved by a steroid inhaler and long term treatment with azithromycin. This year the azithromycin seemed to be increasingly inaffective. I have recently started inhaling Tobramycin and am waiting to see what effect it has. You cannot cure bronchiectasis. You live with it and treat it as the enemy within. It changes the rules and moves the goal posts so you chase after it with whatever is available to you at the time. This way, like me you can live with a severe form of it for 60 years and still be giving it trouble. good luck everybody. Keep going!

  47. Alicia –

    I was diagnosed with bronchiectasis about 14 years ago. When I could not get an answer to my problem, I saw an acupuncturist. Bless him – he took the time to listen. Then after 2 or 3 visits, he said your problem in your lungs, “go see Dr. . . . . ” Which I did. He ordered xrays and diagnosed the problem. I am 86 and the disease is advancing to the point that I often have to leave a room, meeting, etc. because the coughing is so bad. I have had quite a bit of weight loss.

    Like some of you, I had many bouts of bronchitis and pneumonia as a young child.

    Now I’m wondering what else I can do other than alternating antibiotics every other month, inhalers, etc. Has anyone tried Reiki? I think perhaps Yoga might help. I would like an answer other than medications if possible.

  48. Ask your Doctor about the inhaled antibiotic Tobi. I am 65, was diagnosed five years ago. Put on Tobi 10 days every month for GA years now seven days every other month. I have not had any once tions or colds for five years. I also exercise pretty hard for an hour every day. The disease is not gone as you know, but last ct in Feb showed a much smaller area.

  49. I use Tobi and have for four and a half years with good results. I also use exercise to clean the lungs each and every day. I use an eliptical for 60 minutes each morning and I also use a flutter valve prior to the exercise. These were both presecribed by my specialist. No infections for 4.5 years which prior I had two a month with all kinds of oral antibiotics which would clear the infection for a week or so and then back.

  50. can you believe that in England TOBI is not licensed for use in non cystic fibrosis bronchiectasis. I have been really ill over the last few months because my bronchiectasis has gone haywire. I had nebulised tobramycin which caused my lungs to become so irritated that it set up a massive infection. My consultant told me that TOBI is really what I need but that NICE won’t licence it for us and if they did nobody would pay for it. This is discrimination and a disgrace when cystic fibrosis patients get exactly the same form of bronchiectasis in their lungs as I have.

  51. I was not aware there were so many people out there with Bronchiectasis. I was told I would be one of the youngest group with this. I am 64 and have had it since I was about 2 apparently. I still work 32 hours a week and have had 3 children. I have found yoga was good when I was younger and it taught me how to breath properly. To use all the lung capacity. I am not on any medication at the moment but know when I need to start antibiotics. I do have chronic sinicitus and also arthritis which I have been told is another side effect. I try and exercise. Right now I an doing stretching exercises and I think it is helping. I am thinking of going to Peru but am a little concerned about the altitude. I believe in positive thought, I have been told over the years that there are a lot of things I could not do ie have children etc. You need to know your lungs and what works for them, listen to your body. I am really pleased to find this site.
    Have fun.

  52. Levalbuterol (inhaled) is giving me heart palpitations, even at half dose. Has anyone else ever had this problem? Dr. says I will get used to it, but it has been three months and I think I need to listen to my body which is saying NO.

  53. I have bronchiectasis, too, and am in my 50s. Just want to echo what the people who exercise and use the vest say: these have been lifesavers for me.

    I think outside of the US, health insurance plans may not offer the Vest. If you can buy a second-hand one yourself or have some supplementary insurance help you buy one, do it! This vest creates vibrates that shakes up the molecules of the mucus and moves it out of your bronchial tubes, especially if you do a huff cough. You can find out how to do the huff cough on YouTube.

    The doctors are nice, but truthfully I don’t think they know as much as I do about what works! Keep looking around online and take notes on your own condition.

    Finally, someone said she did not like to do outdoors activities anymore such as hiking because that really gets the mucus going. I don’t think you need to avoid “getting the mucus going”. I think that means your lungs are really working and moving out all that glop that gets stuck in there. The more healthy, fun activity you do for yourself and your body, the better!

    Good luck!

  54. Hello all I have been diagnosed with bronchiectasis 1 month ago they said I got it coz I use to suffer a lot when I was young with pnemonia I am trying to find a lot out about it and really stressed coz I feel embrassed in front of people coz coughing mucus up all the time and also get a lot of pain mostly all the time what could I do to help relieve the pain anybody

  55. Hi I am new to this site someone mentioned a vest what is the vest and what is it used for. I am 64 and have had Bronchiectasis since I was 2 diagnosed at 12 thanks

  56. Hello – i also have the diseasd – i also cough up stuff but my worst thing is shortness of breath. Does anyone else get a shortness of breath?

  57. I got repeated infections in my lungs from the time I had my second child.
    My doctors finally after 2 years found it to be CVID I had and bronchiectasis
    as a result of not getting diagnosed with CVID sooner. I used to live in Co
    and then moved to Pa and had kids. Has anyone experienced moving to
    a drier climate helping them? I live on a farm that is very damp and has a
    lot of foliage around and around our older farm house. I was wondering if
    climate change has helped anyone. I get weekly treatments of subcutaneous
    immunoglobulin treatments and I do daily treatments of my flutter valve.
    I also use an albuterol inhaler for emergencies and I use my nebulizer
    alot this summer with the wetter and high allergy conditions.
    I get pneumonia at almost every change of the weather and I was doing
    good for awhile but now have been on three different antibiotics in a row
    and no clearing of the lung infection yet. I am 32 with 4 kids and obviously
    a busy lifestyle. I work outside when I can and exercisee used to be a
    habit but now when I do I get sick. I have 2 kids in school and two at home.
    So of course lots of germs aroound. Attend church and help in nursery
    probably not the best idea, but I enjoy it and do so only once a month.
    If anyone has any experience with drier climate after living in a wetter
    moldier one please say so. Thanks!

  58. Hi Julie,
    I am sorry to hear that you are struggling. I remember the utter exhaustion when raising my children, but good for you for staying very involved in the community. I am concerned about your treatment. I think that you need to demand to go to a consultant at a good centre for bronchiectasis. It may be that you are not being given the right dose of antibiotic for long enough. There are also a range of inhaled antibiotic which get straight into the lungs. I am now nebulising colomycin which is a cystic fibrosis drug which has been licensed for us.I have found that inhalors only help with the problems but do not tackle the real problem of fluid and bugs in the lungs.. Those such as salbutamol help to open up up the airways and steroid inhalors reduce inflammation. you need the bugs in your lungs identified and to fight them with aggressive antibiotic treatment and constantly removing the fluid from your lungs. It may be a good idea to get tested for aspergillosis as you live in a rural area where fungus spores may get into your lungs. this is a simple blood test. I have been living in a dust bowl which becomes full of wet leaves etc and during a bad period for my bronchiestasis it was discovered that I had developed a reaction to aspergilla. This was treated with a steroid inhaler and long term azithromycin. Also check that you do not have any reflux which could further damage your lungs. I have coped fully with life since I was diagnosed at 3 years old but during the last ten years undiagnosed reflux led to further damage to my lungs. I am now 63. surprisingly, despite this my lung function has only decreased in line with the healthy population since 1994. My docs are amazed but I know that this is because I lead a busy and active life and make sure that exacerbations are treated straight away. Good luck, keep at it and pin those doctors to the floor!

  59. The weather does play a part with some people and I know it does with me. Humidity is my enemy, so it is something you have to try for yourself. Do you get vaccinations for pneumonia. Good luck

  60. Hi Christine and Teri I used to get a lot of pain and it can come from different sources, what I discovered was that it was either muscular from coughing or sometimes it was so severe I would be diagnosed with pluracy I would be given a injection for the pain go to sleep and wake up pain free so it could not have been pluracy. What I discovered about 10years after it first started was that I had had numerious Pulmonary embolisms so I dont know if that was the cause or not. I also get breathless if I am doing something like walking up stairs or just walking quickly the severity of this depends on the weather as I said previously I don’t do well in humidity.
    All I can say to both of you learn to live with the disease you need to control it not let it control you. I have had 3 children and am now 64 I was told I could not have children or at least look after them but I have learn to try and find ways to expand your lung capacity. Keep your weight down (something I have not done but am still trying) think positive. Good luck and keep well.

  61. The vest I believe is something you put on once a day and it vibrates and helps to dispel the congestion in your lungs. It is kind of like a flutter valve except for with a flutter valve you blow into something to rattle the mucus loose from your lungs and the vest is wrapped around your lungs and shakes it loose. I use the flutter valve and it is the cheaper method but not always as effective as the vest. I may have to switch to one soon too.

  62. A brief update open for comments or suggestions. I am till on Tobi once every other month as mentioned in previous posts. That said for the last two Todi sessions, including last night on the fifth, sixth or seventh or eight nights using Tobi in the AM I wake up after three hours coughing up a lot of stuff, none colored, mostly white or clear. But I end up sleeping or sort of sleeping in a chair instead of bed.

  63. I was diagnosed with bronchopnuemonia a month ago, it was discovered that my lungs are full of water. I had infusions for 7 days to days to drain the water. I now struggle to breath in deeply without chest pains when I walk I run out of breath – I still have body aches as if I have flu. How long will this last? Is it normal? When I laugh I choke and cough.

  64. Christine on 14th September at 5.55pm.

    I am on several drugs and a long term antibiotic, but I want to know if it is normal to feel unwell most of the time?
    I’m 72.
    I also hope you are all feeling not too bad.

  65. I have just been told i have Bronchiectasis and feel so worried. I’m 52 & have had Asthma all my life, It’s on the top of both of my lungs.I’m trying to be brave in front of people, but feel so upset. I was reading on the net about it and a doctor said that expected death will happen within 5 years. I cough up stuff all day from my lungs and i think i must have had it for about 2 years.

  66. Oh these stupid doctors! When I was 16 I was told never to have children or travel to hot countries. I had two children with very easy pregnancies and births. and I have travelled all over the world.When I was 30 I was told that I would be in a wheel chair at the age of 40. I am 63 and still fighting the good fight. I have bad times when my doctors forget me and I have to chivvy them for the right drugs but mostly I am fitter than many of my supposedly ‘well’ friends. Stop being the victim. Do lots of exercise whether stretching, walking or something more active. Get a good consultant and the right drugs. Most importantly. Spend lots of time each day getting the fluid and therefore the germs out of your lungs. If you are finding that difficult get a physio to show you how to do it most effectively. There’s a lot of life left to you. Enjoy it and good luck!

  67. Tracey, many people on this blog have had bronchiectasis for much of their lifetimes. Some since they were infants. I would look for another Doctor, if I were you. Bronchiectasis itself is a chronic disease that you can learn to live and cope with, without a decrease in your lifespan. This is directly from my doctor who is considered one of the most respected doctors in the world on this particular disease. As long as there are not other serious complicating factors, you can overcome the difficulties you are experiencing. Stay positive and learn as much as you can about the disease. Read through this blog and you will see many people who are successfully coping. There is definitely hope for you and for all of us who have this disease.

  68. Does anyone else have CVID (common variable immune deficiency)
    along with Bronchiectasis? I was diagnosed first with the CVID and do
    weekly immunoglobulin therapy of 30ml. (A low dose from what I hear.)
    As a result of reoccuring pneumonias I got diagnosed with the
    bronchiectasis. My specialist just has me using a flutter valve to clear the
    mucus daily. I had a bad case of pneumonia that wouldn’t leave, it has
    never put me in the hospital (perhaps I should have been on some of
    my illnesses, but I am stubborn and so wait it out and use antibiotics.)
    I just had my biannual checkup with my doctors and all looked great. I got
    over the last bad pneumonia when I was finally put on an antibiotic from
    what my doctor called the Gram negative antibiotic class. All other ones
    like Augmentin, Biaxin, and Bactrium did not even touch it.
    I say all this to ask, does anyone else have the combination of CVID and
    bronchiectasis and are in their early years, like 20s and 30s ?
    And if so how often do you get sick where you need an antibiotic? I have
    4 kids all under the age of 9 and so I am pretty busy. But seem to manage
    and can keep a pretty normal life.
    I try to exercise a few times a week. Living on a farm and canning and
    freezing this time of year keeps me busy.
    Is life expectancy normal with both of these?
    And I don’t stay home away from germs a lot. I go to church and help
    in nursery. I have a boy under 5 and another under 2 and so I guess
    I figure being around a few more shouldn’t hurt.=-)
    I want to live a normal as possible life and be active and enjoy each day
    because it truly is a gift. I want to invest in other people’s lives and be
    open to and willing to let others invest in and help me in my life.
    Sometimes when you are ill or not feeling so great the hardest thing
    is asking for or allowing other people to help.
    Especially those closest to you. But i have found there is actualy strength
    and courage in allowing others to step in and help.
    And I hope what I have is not hereditary. I pray that none of my kids or
    their kids or anyone else ever gets it.
    I am truly blessed to be alive and especially in a time with all the technology
    and medical information and medications are available that decades ago
    were not. If I had been born then I would be dead long before now.
    So I have chosen to live free of feeling like I am a victim of my disease and
    rather have chosen to see life through new eyes and have sympathy for
    those around me that have it worse off than myself. Because you can
    always find someone around you that is much sicker or having a harder
    time than yourself. I can’t wallow in self pity very long. And I want my kids
    to have a full of life and love and able bodied mother that does all she
    can for them and for my husband and shows love because after all isn’t
    that what life is all about. Giving and being able to recieve love?

  69. Hi Tracey,
    I understand your worries and it is ok to talk about it. But it’s been shown times and times again that people can live much longer than five years with this disease. Some people go through life without realising they have had it for years. For some of us, life is more complicated and every day is a struggle and smile does not come that easy. But some days are much better and those are the days where you can get as much as strength as possible to go on. I agree with Tim and Verity.
    Breathe easy:) !

  70. Hi Christine,
    Antibiotics and a cocktail of medications can wear you down. Unfortunately rest is of the essence when you don’t feel well, if you can. Medication is supposed to make you feel better. The body feels it is too much to take. However, if you do not take the meds you may feel worse. I would talk with the doctor to see if things can be changed or added to make you feel better.
    Breathe easy:) !

  71. Hi. I just found out last week that I have “relatively” mild bronchiecstasis. I was very shocked to hear the news of course and felt really down for a couple of days. I had bronchitis a few times in my 20’s so not sure if that caused it. Last few years I had developed sinus issues and the doctors kept telling me that my cough was from the post nasal drainage. I tried all kinds of allergy medicine and it didn’t work. In the last year I noticed that in the mornings I would have coughing fits so I demanded a chest x-ray. They didn’t see anything. I then asked for a ct scan and that’s when they found the inflamed sinuses and the bronchiecstasis. I’m a 43 year old mom and I’m very active. I like to run and lift weights so this was hard to hear. I’m getting over a cold right now and have been coughing for three weeks. They finally put me on antibiotics.

    Do all you have most of your mucus problems in the morning? Have you found anything to help with this? How about diet changes? Can I have a normal life with this condition?

    I appreciate your responses.

  72. one other question..the doctors are running a bunch of blood tests to see if there is an underlying condition. One of them is cystic fibrosis. I am terrified that this will come back positive. Have any of you figured out if you have an underlying condition that caused this?

  73. Ingela, I’ve had bronchiectasis finally diagnosed in 1979…. 34 years ago but I definitely had it before then. While it is chronic (no cure), you can live a very normal life with this condition if you find an EXCELLENT Doctor who really knows this disease and follow his/her instructions. I can’t emphasize finding the right Doctor enough. I had to fire several of them before finding a world renowned Doctor in my part of the country who has a very specific interest in bronchiectasis and does clinical trials at the University hospital where I live. Do your homework and find a real expert on your disease.

    Your question about an “underlying condition” is a normal process done for all patients with bronchiectasis, so I would not worry too much about that. They never could find out how I contracted bronchiectasis in my specific case, but I learned it could typically come from a bout with pneumonia as and infant or later. The possibility of a cystic fibrosis condition is pretty easy for them to determine quickly and ruled out or dealt with accordingly. Many if not most people who have cystic fibrosis develop bronchiectasis, so it is normal to be checked for that condition. But there are also many persons who have bronchiectasis but no other serious underlying condition.

    The mucus problem in the morning is a ritual that all of us go through. The real key is to get all of it, or as much of it as possible out. So, coughing it up using deep huffing techniques is really a good thing since the “germs” that can infect our lungs reside in that mucus. Some people have a very difficult time getting the mucus out and that complicates issues and causes more frequent infection episodes that have to be treated progressively over time with various antibiotics. The problem with the infections is you can eventually run out of antibiotics that will work for you. The way my Doctor explained it to me is like this: the germs get smarter and smarter and eventually outsmart the antibiotics causing you to have to go to more powerful antibiotics…….. the down side being eventually there won’t be an antibiotic that will work any longer. This is why it is important to get a flu shot each year and to limit your risk to infection. The lungs are not a sterile environment, so anything that irritates the lungs of someone with bronchiectasis (dust, vapors, germs, molds etc.) make it hazardous to making your condition worse over time. In my case I have “bronchiectasis with exacerbation” which means bleeding when infected. That is pretty scary, but is also common for people with bronchiectasis. That is why it is important to avoid risks to you lungs as much as possible. Examples: If you enjoy wood working, make sure you protect yourself from inhaling saw dust….. common sense, right? Since you enjoy running, use common sense and don’t run on days when the air quality is poor, or in areas where molds, dust, or other irritants are persistent. The fact that you run is great for your condition, however. Strengthening the pulmonary system is a real key to having a normal life with bronchiectasis. My doc always asks me how much walking I am doing or bike riding since it is good for my condition.

    I use and expectorant (tussin, i.e. 100% gaufenesin) to keep my lungs clear. I use it once a day in the morning, but some recommend using it several times per day. I happen to like the liquid version but there are also pills….. brand name Mucinex…… that do the same thing. Some people say that these do not help them, but I have found that the tussin really helps me to keep the lungs cleared out. I judge whether I’m having a good day or bad day with my condition by how many tissues I use each day…….. 5 to 25 is a good day and 50 or above is a bad day. You will become a big buyer of facial tissue since you have bronchiectasis. I always make sure I have them available so I can expectorate the mucus rather than keeping it in my lungs or swallowing it.

    I hope this helps you. You can have a very normal life and learn to deal with the risks and effects of your condition. But, make sure you find a great Doctor…….. not just a nice guy or gal, but someone who has experience and know how with your condition. God Bless and good luck.

  74. Hi Ingela
    I am glad you insisted to have some tests done. Unfortunately patients often have to do so. I think you should go on being active as much as you can and when you still can. Lying down brings more mucus problems for me, so when it is too much I sleep sited part of the night. Exercises to expel the mucus do not work for me, as they trigger asthma attacks. But I know they work well with some patients.
    As for the diet, you should notice what makes things worse for you. For me it is things like: couscous because the small grains tend to go and stick themselves in my throat, sugar and powdered sugar is worse, fatty food like pizza, fries, cheese and any vegetable that have strings like celery.
    Some people go on living a normal life. Besides, when you have to slow down you will and you will get used to it. Some people are stronger than others and there is no right or wrong.
    My specialist thinks I may have had this disease all my life but because of the chronic asthma it was not diagnosed before. At the same time, the asthma, bronchitis, endless cold and pneumonia may have been contributed to the bronchiectasis.
    Each patient is different. As far as I am concerned other diseases contribute to my poor health but I can still enjoy my days. When things are tougher I just go on with the flow and hope for better days. they always come:)
    Breathe easy Ingela !

  75. My story may help give some hope to those who have just been diagnosed with bronchiectasis and want to know if there is some hope.

    I was 19 years old when I was diagnosed with bronchiectasis and thought my life was over (for over a year my chest rattled and was full of mucous). I despaired and was very depressed and embarrassed. I used to cry every day. However, I managed to find a very, very good specialist (quite a few I met were hopeless) who treated the condition aggressively with strong antibiotics, subsequently followed by an ongoing antibiotic with anti-inflammatory properties (part of the macrolide family of antibiotics).

    By treating the bronchiectasis aggressively at an early stage and clearing my lungs from mucous, I have had to take less and less antibiotics as the years have gone by.

    I am now 35 years old and in the last 16 years, I have learned to dance, met my wife and had a beautiful baby daughter and managed to get a job in a top ten law firm in the City of London where I work as a corporate lawyer (that’s a demanding job with very long hours). My lungs are no longer full of mucous and apart from when I get an infection (once a year) you would not know I had bronchiectasis (my chest is now completely clear).

    In my experience, the key is to be put on the right antibiotics for you and to have a consultant who really is an expert AND is willing to listen to you and respond to your needs.

    Also, bronchiectasis is a progressive illness so you need to treat it early to prevent it progressing.

    My consultant retired about 6 years ago and I have not met anybody who is like him since. However, he did leave me with an action plan that suits me and I stick to it whenever I get a chest infection.

    I do not have all the solutions and I have had difficult times (sometimes it takes 6-8 weeks to clear my lungs after an infection) but there is hope provided you search for the best treatment and you can have a wonderful life.

  76. I have been recently diagnosed with bronchiectasis as well as ABPA. I have been referred to a surgeon. Has anyone out there had or know of anyone that has had surgery for bronchi ecstasies.

  77. Verity, how have you got the inhaled TOBI if it’s not licensed here?

    Its shocking that its not available to none-CF bronchiectasis sufferers? As if this condidtion isn’t bad enough – how unfair. I wonder how this could be changed.

  78. Yes, I have had surgery. My right middle lobe was removed 20 years ago after a bout with mycobacterium kansasii contracted in India. After 18 months of antibiotic treatment, my RML was too compromised to remain, especially after I went septic with pseudomonas. I have done very, very well since then. The surgery was not as difficult as I had anticipated, and I understand that current surgical techniques are even more improved. The risk of repeated infections is dangerous, so if you are being encouraged to have surgery, please do consider it. I get a few infections each year but overall have done well.

  79. I am nebulising coilstin which is the only cystic fibrosis drug licensed for us. I am doing very well on it but my consultant had to get the funding for me. It is a disgrace that in the UK cystics are given drugs by the shed load. We would benefit from many of these drugs but the establishment has always ignored us, pretending that this is a disease of old people which is dying out.
    As we know, many of us have been living and fighting with it since early childhood and more people are being diagnosed than ever before.
    There is less money for research than in the 1980s.
    Cancer patients receive special allowances and free parking at hospitals because of the debilitating nature of their disease. We don’t even get free prescriptions!
    It is very frustrating that we do not have a voice or anyone with power to fight for us. Consultants are frightened of losing their jobs and many patients are phased enough at their diagnosis and do not realise the disgraceful state of our treatment.
    ANYBODY UP FOR A. CAMPAIGN To get the authorities to cough up!

  80. Hi Verity, I’m totally up for a campaign. I really think this inequality needs to be highlighted. No idea how to begin but I’m going to have a look and see what other groups have done. I hate the idea that some diseases are more ‘fashionable’ and attract better research, funding and care. The crazy thing is that bronch patients could benefit so much from the CF research.

  81. Does anyone have a compression vest machine they are interested in selling? Or even just the actual vest and hoses for it?

  82. I needed some encouragment tonight. Thank you all for your comments. Although I don’t wish this on anyone, I’m grateful to know I’m not alone.

  83. Hello people, I too suffer from bronchiectasis. For years I hammed and cough too much. My specialist doctor tried everything including putting me on antibiotics for 12 months. Until recently I found a solution that I like to share with fellow sufferers. I am not sure if this is a cure but I no longer have that dreadful phlegm in my lungs and the wheezing and crackling sounds are gone. I do have a little phlegm in my upper throat but it nothing compared to my congested lungs before. I started drinking ginger tea made from ground ginger + tumeric + cinnamon powder. The receipe for the mixture is 70 gm ground ginger, 20 gm tumeric powder and 10 gm cinnamon powder. This concoction cost only $1 from a spice shop. Mix well and store in an airtight jar. To make a cup of ginger tea, use 1 teaspoon of the mixture + 1 teaspoon honey + 1 slice of lemon in hot water. Stir well and sip slowly while its hot. Try this for a week and if it helps then continue drinking it twice a day. Goodluck and get well.

  84. I wish to clarify 1 teaspoon of the powder mixture means a heapful, not that of a flat teaspoon. If you wish to measure by flat teaspoonful then use 2 flat teaspoonful. Also one cup is roughly 200 to 220 ml.

  85. Thank you for the idea of the tea. I will definitely try that and get back on how it works. I deal with phlegm all day and night. I use a inhaler and cough syrup at night to sleep without being woke up from the hacking. Natural is always best! Thanks!

  86. I’m trying this tea concoction Michael posted as well, and will let everyone know how and if it works for me. I looked up turmeric, ginger, and cinnamon health benefits and can see that all three of these are rated good for reduction of inflammation, which is a hallmark of bronchiectasis, and turmeric and ginger are also good for reducing coughing, and cinnamon is good for improving circulation. So, I think it is at least worth a try. I’m on my 3rd dose. I’ll have to say it is not a very tasty drink at all, but if the results prove to be good I’ll stick with it. So far, no real change for me, but I’m only a day and a half into it. I wonder if there is some way to make it sweeter without ruining the benefits? Anyone know…… how about you, michael? BTW, thanks for the suggestion. Tune in, in about a week for my report.

  87. Trying to get back your email messages after a change in email address. I am 86 years old with bronchiectasis. Diagnosed over 20 years ago. Condition is worsening. I use inhalers, some cough syrup and antibiotics. After a bad coughing spell, I become exhausted. This happens several times a day.

    Any suggestions?

  88. Looking forward to feedback from Tim’s experiment with Michael’s tea. Perhaps you could give it a go Alice?
    Thanks all.

  89. Rather than ginger/tumeric/cinnamon tea as someone suggested, it is easier to take ginger and tumeric supplements. This has helped reduce my imflammation enormously.

  90. Thanks for that carrolisimo. I have made up the concoction but it tastes vile and is very powdery so I think that I will try the supplements. However, I have tried lots of alternative treatments including manuka honey but I’m afraid that it is only the drugs that really make a difference. Still, whatever helps, however little, is useful.

  91. This sounds very much like Ayurvedic treatment.My Bronchiecstatis started after open heart surgery 2011. I am Going to try this remedy .
    Mike,hope it works xx aida

  92. Well I tried the tea concoction that Michael suggested and found that there is indeed a slight improvement for me in the several hours after drinking it. However, the concoction tastes so terrible that after about a week, I just could not drink it any longer. It just tastes terrible no matter how much you try to sweeten it, etc. I found that I was dreading taking it and decided that I’ll stick with my OTC tussin (100% gaufeneisen) instead. It gives me about the same relief and it tastes good. I take it in the AM and in the PM now. I know that some have reported that the OTC stuff just doesn’t work for them, so I suppose it depends upon the individual nd the severity of our condition, as so many things do. For me, I’ve never really had trouble getting the mucus up and out and the tussin just helps make the process easier, so it works for me. Be sure to use deep huffing techniques to clear your lungs daily, again in the AM and PM and problems such as infections and sever coughing spells will lessen. Also, be super careful about what you breath in. Use breathing filters whenever you are going to be exposed to dust, smoke, lint, etc. Also, I’ve found the best tissue for a lint free coughing experience. Keep in mind that breathing in those tiny paper particles from those nice soft tissues is a problem that will just exacerbate your coughing. Anyway, I found one on Amazon that is virtually lint free and about 1/2 the price of the drug store brands. It is called Marcal Pro. Check it out if this applies to you. God Bless all of you and hang in there.

  93. I also have Bronchiectasis. I am 27 year old Female. My Mom has it and so did my grandma. She died at 47 from the Disease. My Mom has a lung capacity of 36%. I am rather healthy besides the disease. I was officially diagnosed just over a year ago. Our Bronchiectasis stems from Primary Ciliary Dyskensia. Fun!?!

    I work out regularly and take lots of vitamins and Echinecea. I think it helps. So far this past Fall and winter I have not been sick. This is the longest I have gone without being sick. I also have the aspergillosis in my lungs. No reason to treat it, it will only come back. I live in Washington state and would only breathe it in again. It has only caused minor problems. It caused a blood vessel to burst and my coughing up a lot of blood. Totally freaked me out. I went to the hospital of course and they ended up keeping me till my Pulmonologist could see me. The next time it happened I didn’t go to the hospital because I knew what was going on and waited till I could get in to see my doctor.

    I have done lot’s of reading (of what is out there) and Bronchiectasis stems from many factors and affects people differently. When you think you are alone after diagnosis it is comforting to find others in the same boat and you can lean on them for support.


  94. Hello, all you Bronchiectasis sufferers.

    Just for the record, I’ve had this diagnosis for many years – and probably had it before the diagnosis, but I just turned 87 and I’m still “hanging in there.”


  95. Hi Alicia
    I hope you feel a bit better now. A lot of rest , sited with many pillows in my bed usually helps me too. I do not take other things than my required medication.
    Breathe easy !

  96. Hello Bud, Tim and Tiffany,
    I’ve just been diagnosed with mild bronchiectasis three months ago and it seems to be worse already, although I’ve just finished 10 days of Azithromycin and my lung infection is gone but still congested. I can’t tell you much hope your posts have given me. I have seen now on two blogs where diet and exercise have kept this issue under control. After reading your post I immediately went out for a long walk/jog and I feel a million times better. Hope to hear how you are now and that I can also report staying fairly well with strengthening my pulmonary system as has been suggested to do. Looking forward to hearing your news again coming up. Diane

  97. Correction on my note: Hello Bud, Tim and Tiffany:
    I meant to say “I can’t tell you HOW much hope your posts have given me.” Totally trying the ginger tumeric and cinnamon tea or supplement pill of these. Will update on how it works.

  98. Diane

    Good to hear. After monthly or more often infections for 15 years I have not had an infection in four years this month. My specialist and I agree its the result of bi monthly inhaled Tobi and vigorous daily exercise each morning for 45 minutes. At 66 I hit 85% max heart rate for 40 of the 45 minutes. If you can try both, Tobi is expensive so we cut back on other things to fill in where insurance does not cover

    My Best


  99. I just tried the tea for the first time, arrrgggh so vile I was retching when only half-way, had to tip the last part down the drain. I think if I was told I was going to die in the next hour if I didn’t drink it I would still be unable. Pathetic I know, but I think I’ll order the supplements! Does anyone have any tips for avoiding pulled chest muscles? It seems I don’t even have to cough that much to re-pull the muscles which makes it so painful. I’m only newly diagnosed and I haven’t had a physio appointment yet so perhaps that’s something they cover. It’s strange as I have some days where I barely cough and others when I sound like a rattly old smoker. I also seem to cough more in the evening and not at all in the morning or night which seems contrary to what others are saying. I also have asthma so if I’m having an attack I completely dry up as my airways tighten. Presumably this is a different area of my lungs effectively sealing off the airways effected by bronchiectasis so I don’t have any mucous symptoms at that time if this makes sense. So what does anyone think would be the ideal climate for a sufferer to live in? I was thinking by the sea side as salt is very therapeutic. Dry climate, humid climate? Away from polluted towns and roads? Anyway, this is a really useful blog plus comments so any useful tips are gratefully received.

  100. My mum had Bronchiectasis diagnosed when she was a child she spent a lot of time in Great Ormond Street Hospital. All I remember is the constant chest infections the Physiotherapy to cough the mucus up. Spending time in hospital and my mum was also crippled with Rheumatoid Arthritis. My mum had part of her lung removed as a child. Mum could not be anywhere near smoking. Unfortunately my mum died just after her 53rd birthday.

  101. Have you been checked for Acid Reflux. Night time and bed time are the worst for this disease.

  102. Kim, try 100% guaifenisin (some call it tussin, micinex, et al…) to keep your lungs from drying up. It is best to keep the mucus coming up so an infection has less of a chance of occurring. As to the pulled chest muscles. They can take up to 6 weeks to heal, but once you have them healed up, only regular exercise can strengthen them and that is what you need to do. Note: (brisk walking or casual bike rides would do the trick). As to climate, the drier the better, in my opinion, but even more important than dry is a CLEAN air climate where there is less pollution especially from autos. Also, take the extra steps in protecting your lungs when doing chores that may cause dust (vacuuming, sweeping) or fumes (painting). Get excellent quality disposable air filter masks and you’ll thank yourself in the long run. What may seem like overkill on protection to one who does not have lung infection risk, is really important for you. Avoid inhaling anything that is dusty, musty, dirty, etc. Sometimes the only way to do that is to wear an air filtering mask when you are going to be in an environment where you will be exposed.

  103. Hi Bud,
    Yes I have and I have been on omeprazole twice a day. I have more problems during the day actually and for a while now it has been every single time I have eaten or even when I am eating. The worsening of acid reflux came with the problem of swallowing the food. Unfortunately, the acid reflux has burnt the bottom of my throat.
    Do you take anything for it Bud?
    Breathe easy !

  104. I do take apple cider vinegar. You can buy it in a health food store. If you can’t find it I can send you the email address, but its cheaper in the store than on line. It stops acid reflux. Except when I am taking the Tobi, then I did have reflux issues and for several days after I finish the tobi

  105. Tim, thank you – you were about right as all healed now which means I will start some Pilates again to try and strengthen the chest muscles, no excuse now! I already walk the dog every day, but that doesn’t feel enough, just haven’t felt well enough for a while so all the exercising went by the way side. I’ve had the physio and at first it didn’t make any sense to me as nothing would come up, but now I have finally twigged that I wait to do it to the point in the day when I start hacking like an old crone. That’s when it seems to work best and when done, no more coughing, so pleased as I had visions of a very complicated process and it’s all so simple. I have started holding my breath when a smokey car or person go past, this possible as I live in the country, not sure this option would work in the city as there would be a lot of fainting going on:) I might get some masks for cleaning the house, I mean at least then no one has to see me! Non some ways I think having this diagnosis will in the end make me a lot healthier than I have ever been. It can make you much more aware that life is fragile and you really do get back what you put in.

  106. Hi All, I am once again looking for a new pulmo. Went to top respiratory facility for tests last year and was dx w/silent gerd, mild emphysema, mild COPD, mild bronchiectasis, eosinophilic bronchitis, and a batch of mild to moderate airborne allergies. All well & good but when you put together all those “milds,” you end up one sick puppy! I cough mostly all night, which interferes with my sleep. I have noticed that woodsmoke, strong fragrances and certain stores that have a lot of softgoods trigger attacks. When I spend 2 or more successive days inside my home I fare better than the days I am outside having fun….heck of a tradeoff, huh? The only “lung” med I am on is percussion vest and 7% saline. Also take Singulair for allergies and a couple drugs for the gerd. Does anyone else have this history? I do cough enough during the day that I find myself refusing invitations to lunches and other social events because people ask me if I am contagious and it is embarrassing. I guess where I am going with this is: could the allergies be triggering reactive airway issues that I wouldn’t have if I didn’t have all of these “mild” diseases? Look forward to your input! Thanks!

  107. to Bud
    Is apple cider vinegar for acid reflux? And how do you take it?

  108. Hi All, Davy aged 68, from N. Scotland seem to be the oldest on here. Had Bronchiectasis from birth, and I’ve no intention of popping my clogs anytime soon! I feel for everyone of you brave people on here, it is a distressing and debilitating Illness/Disease. You have to be brave to endure bronchiectasis a lifetime, and probably some of you will suffer from Acid reflux, exhaustion, fybromylagia, sinusitis, breathlessness etc. I was officially diagnosed in 1970, had an op. called a Bronchogram, which I think is discontinued these days. I have also smoked for 55 years, now cut down to around 14 a day, as I maintain the ciggies helped get the crap out of the chest I have never dwelt on my bronchiectasis, and always tried to go through my daILY life like a ‘normal’ person, not always easy of course. I was 15 years in Uniform, Army and RAF medically discharged in 71′ Bronchiectasis. I’m afraid I don’t have much time for GP’s or so called Specialists, suffered two strokes April of 2012 hospitalised for a few weeks, then 2013 could’nt walk with a trapped nerve in my back, getting back to some normality hopefully now. I have had 60 odd years to form an opinion of the characters mentioned above, sorry if I have offended anyone here,not my intention. I have stories of the NHS that would curl your hair, as a lot of you probably have. My BronchiectasisTreatment recently has been quite lamentable. I have a struggle to get Prednisolone (40mg daily) I got 4 days worth last week, 1st for 2 years, anything that helps me, I have a struggle! there again it would’nt do to have pensioners skipping down the road to the Post Office to collect the state pension, now would it? I have been made aware however over the years that my illness is my responsibility, no one else’s! So I get on with life.
    Blessed Be Y’all

  109. Hi Davy,
    I am 63 and was diagnosed in 1953. I have very extensive damage to both lungs and yet the powers at the hospital are amazed at my FEVs and oxygen levels. It is a lifetime of self administered physio, exercise, sheer bloody mindedness and an occasional drug support from a consultant. I am disgusted and wretched right now because they simply will not put us under the COPD umbrella when what we have is in many cases worse. You should see the treatment programmes and drugs which they have and we get whatever our current consultant can get funding for! In Birmingham they are currently testing a drug for COPD patients on bronchiectatics because the issue which they are addressing is worse in bronchiectasis than in COPD.At the end of it they will get the drug if it works and we will be denied it. I have learned my lesson. I have done drug tests where although the drug worked in us it was only given to those with cystic fibrosis bronchiectasis. Sorry about the rant but the more that I read on this site the angrier I get. And don’t get me started on the smokers! (I know you smoke. That is rare in bronchiectasis and purely self destructive, especially as it is a progressive disease.)
    Keep breathing!

  110. Hi, I am 59 yrs old and was diagnosed with Bronchiectasis about 6 years ago. At that time I had a persistant cough and lots of mucus. The doctor recommended surgery which I refused. I thought and thought about it and couldn’t imagine removing a piece of my lung. My condition got worse as far as the amount of mucus I was producing. My second doctor also recommended surgery. I had the lower right lobe removed and I thought that would be the end of my problems. However in the year and a half since my surgery I am producing as much mucus as before the surgery. I was dumbfounded. I first wondered why i did the surgery then I wondered where is the mucus coming from. Now my doctors tell me I had some bronchiectasis on my lower left lobe. I wouldn’t want surgery for this as there is only two lobes on the left side and I already removed 1 lobe on the right.
    I use the inhalers twice a day and take an antibiotic, clarithromysin every day but nothing seems to stop the flow of mucus.

  111. I have been diagnosed with bronchiectasis which was probably from birth bcause I have suffered from ashma all my life and I am dextro cardiac with complete situs inversis of my organs,the info I have read thru is very interesting and have helped me to. Understand my condition a lot better,are continuos chest pains symtoms of bronchiectasis

  112. Bupsy….. I have had mild bronchiectasis for almost 30 years (or more?) and have never had or heard of continuous chest pains related to the disease. Please have it checked out thoroughly. Good luck and God Bless.

  113. David….. My doctor tells me that getting the mucus out is very important and when you have this disease, it is a good thing, not bad. The general idea is that the mucus will lie in your lungs and eventually generate an infection due to the resident germs. That will damage the tissue in your lungs and cause bleeding episodes. So, living with all the mucus as long as it is coming up is better than the alternative. My Doc has said that those who have trouble getting the mucus up are in the most danger.

    My advice is to take extraordinary care to avoid fumes, dust, smoke and anything that might create irritation in the lungs. Use a dust mask when doing anything that stirs up dust, etc. in the air. Give up hobbies that generate dust, fumes, smoke etc. The real key is to minimize the exposure which will actually decrease the amount of mucus (hopefully). And also learn to develop good deep coughing techniques that help you to clear your lungs on a regular basis.

  114. Hi David, Tim is right, getting the mucus out is vital. For some of us it is complicated to get that mucus out, whatever we do. Removing an infected part of a lung which does not clear anymore is part of the survival process because the infection will have spread and the damages would have been greater. But bronchiectasis is a degenerative disease so eventually the all lungs get infected. However I understand your frustration with that persistent cough. I suffer from cough episodically and it is very annoying. Some food triggers the mucus, so I tend to avoid it unless my weakness beats me. I hope things get better.
    Breathe easy:) !

  115. Hi David,
    Tim is right. I am 63 and have lived with extensive bronchiectasis for 60. I have led a normal life, lived abroad, had 2 children and still get furious with myself if I have an exacerbation which makes me ill. The big big thing is to keep getting rid of the mucous, at whatever time of the day and by whichever means suit you. It looks as though you will have to live with mucous production from now on but keep nagging those docs to get it tested frequently, especially if it changes in amount, colour or consistency. Then they need to give you the right antibiotic. Bronchiectasis is the devil within. You have to be on top of it and not let it win and I’m afraid, because we are the orphan of lung diseases you also have to keep on top of the docs. Good luck. I’m sure that you will do well.

  116. Hi bupsy,
    I suffer from chest pain and along with bronchiectasis, I also have asthma. I am not sure if the pain comes from the bronchiectasis but indeed chest pain is one of the symptoms of bronchiectasis. As patients we have similar/different experiences and sharing is important.
    Breathe easy:) !

  117. I’m a little concerned about this comment in relation to it being degenerative – my consultant explained that if I stayed on top of ot ie expelling mucous, taking antibiotics if the need arises etc then the status quo can be maintained? Did I misunderstand him of was he falsely reassuring me? Thanks for your clarification.

  118. Hi Kim,
    The bronchiectasis is a degenerative disease because it cannot be stopped. However, the progression of the disease depends largely on how your body deals with its ups and downs, with or without medication and how well you can follow the guidelines to maintain your lungs as healthy as possible. I am sure your consultant wanted to encourage you. Sometimes, consultants do not say everything unless asked precisely. However, truthfulness is also useful because it helps to make more efforts when needed and be more aware of what you can or cannot do and what may happen.
    Breathe easy:) !

  119. Hello to all, I too have bronchiectasis and have been reading up about inflammation in the lungs and that pineapple is very good for reducing inflammation,though haven’t tried it yet. Currently I drink marshmallow root tea which is also great for gerd symptoms and sometimes make my own turmeric and honey tea another one is thyme tea. Meditation is great for practising deep breathing. I was wondering if anyone has considered seeing an auyervedic doctor? I have contacted one who has told me that the condition can be reversible, but I am somewhat sceptical, this is yet to be explored!
    I have been taking supplements since I found out I had the condition last spring and altered my diet. My general health has improved since I have found out I’ve the condition, though I caught a cold 3 weeks ago and has been been struggling with niggly mucus. I feel stress and social situations tend to bring on symptoms, why is this?
    I believe though anything can be curable and plan to keep this attitude.
    Another thought is eating for your blood type! might help with intolerances.

  120. I use acupuncture and take ginger, tumeric and fish oil for inflammation. It has helped more than western medicine, although there is a time for antibiotics. Have now gone 5 months without infection. Having a positive attitude and EXERCISING are some things that can make a big difference. Swimming really works for me since it really moves the chest walls.

  121. I was dx 2-1/2 years ago w/bronchiectasis. I am waiting to be scheduled for 2nd bronchoscopy w/lavage in 6 months. The only things that help me cough up some of the mucus are the percussion vest and 7% saline by nebulizer. I have avoided a severe infection by starting azithromyacin at first sign of yellow-green sputum. I have allergies and my current pulmo thinks they contribute to the mucus production. I was told by an ID doc I have silent gerd but two different GI docs are not certain. Two things I cannot tolerate are wood smoke (fireplaces, wood stoves) and acetone. I avoid nail shops like the plague but cannot avoid the wood smoke in the winter if I want to leave the house. CT scans show mucus accumulation in the lung on the side I primarily sleep on. Does anyone else have this pooling problem?

  122. I’ve suggested prior, something that works great for me is a mixture of Apple Cider Vinegar, ginger and garlic juice for the Gerd. I used to cough ever night wake up at 2:00AM and many nights spend the rest of the night in a chair. From the very first night taking a small amount of this mixture about a table spoon mixed with water I’ve not had a single episode. As to the Bronchiectasis, this they believe was caused by the relux. I am not convince, but since taking the mixture the Bronchiectasis as lessened to a degree.

  123. Yes, I have the same problem if I try to sleep on my left side. My mucus will pool for awhile and then I’ll have a coughing up fit.

  124. I was diagnosed with bronchiectasis.3 years ago after coughing up a small amount of blood. Sunday I coughed up a kot of blood no sputum just blood, went to ER they said it was bronchitis. I was gurgiling on blood andit scared me so bad. Afraid this will happen again, what should I do. Im only 26.I have two small kids and I dont want to drown on blood.

  125. Tiffany, hopefully, you were put on a regimen of antibiotics. The key is to defeat the infection that is causing the bleeding and the subsequent physical damage (scarring) that the bleeding causes. Get a GREAT doctor who really know bronchiectasis…….. not one who just knows OF. Do the homework in the area where you live and find him or her! It will make all the difference in the world to you. You can and will live a normal (almost) life if you follow a great doctor’s advice and care.

  126. My dear friend,
    Don’t worry abt it…accept it and live with it…I am from India.
    I was 30 when diagnosed with this problem.Now I am 34. I have a 7 months old baby.
    You have to accept certain things which no doctor say to you but I, as a patient, have learnt these things with hard experiences:
    1) Accept your position. You GP or any other person on earth cannot stop or improve your position. They can only help you maintain your position.
    2) Generally, the lung position will keep on worsing with each attach. So, avoid attacks and its triggers.
    3) You cannot afford to miss the daily medicine.
    4) Monitor your health twice a day for 10 min. As soon as you find anything abnormal, get in touch with your GP.
    5) You need to monitor SPO2 daily. It will help you maintain oxygen level in the blood.
    6) Take bi-pap with oxygen. It will prevent heart problem in later stage. Oxygen should be humidified otherwise you will feel troubled in coughing.
    7) Take a very good cocktail of immunity boosters on daily basis.
    8) Take 3 egg whites daily without fail.
    9) Monitor your kidney, heart and lung functioning on periodic basis.
    10) Your diet should be protein rich with minimum fat and oil and normal required carbohydrates.
    11) Reduce your working hours and work stress.
    12) Restrict sex life.
    13) Take smart vest for percurrsion. This is you can say as life giver.

    All these things, you may find troublesome. You doctor may say it is not required in your case but these things are definitely going to improve your life quality and you will be able to spend quality time with your family.

  127. Bud, should the apple cider vinegar been taken before meals? I have been put on Azythromycine , prednisolone and inhalers for the rest of my life. I have found that eating aloe vera (raw) daily worked very good for my GERD. It is great to have this site where I get good advice from people who suffer of the same condition as me. I do not imagine taking prednisolone for the rest of my life…..Enjoy life….Breathe easy!

  128. Rossana

    You take one capful after dinner, some take it after each meal. I buy it on line from a health food supplier in California. Each bottle lasts me a month. Its called Amish Apple cider vinegar. I’ve used it for about 10 months now and have not had a single coughing episode during the night.

    Good luck. I can post the website if you can’t find it and would like me to


  129. Hi Bud. Where I live, I get BRAGG Organic Apple Cider Vinegar. I got good information of this brand on internet. I will try it, after dinner. Thanks. Rosana.

  130. Hi I have recently been diagnosed with mild Bronchiecstasis and mild CVID
    As I write it is 5am in Australia and I went on the internet due to something to do besides coughing and rib pain and then I found this site
    Due to the comments here I already feel better
    I am going to be assessed by my Respiratory Physician and Immunologist December 2014 for IV Gamma Globulin

    Is everyone on this site thin?
    I am wondering why I stay overweight regardless of the severity of my flare ups of which I have had once a month for 12 months with a duration of three weeks each
    I am active but do not exercise diligently as at the moment exhausted

    Also note last Entry on site June 2014 so hoping Carroll is ok

  131. I have read that people with Bronchiectasis are usually thin due to the illness
    Is this what people here have found ?
    My immunologist agreeing that I could lose some weight told me that at the moment I have more to worry about than weight but to keep an eye on it
    I have been diagnosed with mild Bronchiectasis and mild CVID
    I have had twelve months of recurring chest infections of three weeks duration (one each month)
    I am considered well enough to survive without IV treatment for the next six months when I will be reviewed
    As I write I am wheezing and dreading going to sleep
    Has anyone here had IV gamma globulin

  132. Hi everyone! I am 31, newly diagnosed with moderate brochiectasis with small nodule in my right middle lung.I scheduled to see a pulmonologist this week but I have been very anxious lately because of lot of questions is running in my mind. Please tell me, how bad can bronchiectasis affect our lives? Family and career? Thanks for all your blogs.this is very helpful. .

  133. hi everyone!2 days ago I was told by my doctor that my CT scan result showed that I have Right middle lobe bronchiectasis. I wasn’t surprised though I felt sad knowing that I have to live with it lifetime. I am 31, married with two young children. Having this disease is life changing..I am about to start building a career in Canada then this happened. I know, I need to vent out this feelings especially with those who experience the same frustrations upon knowing the diagnosis. So, thanks to all of you who shared your experiences. It just feels like I am not alone. because of your blogs I am starting to learn to breath easy!

  134. Yes, about the weight loss. I’m 87 and was diagnosed with bronchiectasis at least 15 years ago. I’ve been told that coughing “uses a lot of calories.” That seems to be true. Also I’ve lost my sense of smell/taste.

  135. Rosalie,
    You can and will have a full life and career with this disease. I’ve had it for at least 40 years and had a very fruitful career and family life. You just have to take precautions and learn as much as you can about this disease. Get a top rate Doctor who really knows this disease. It will be worth your time and effort to do so. God Bless, and do not be afraid. You can do it.

  136. Hello everyone. Was diagnosed w/Bronchiecstasis July 2013. While I was glad to have found this blog, it also made me sad to find that so many of us suffer from this condition. Would like to know if anyone has experienced difficulty being understood due to having developed a raspy voice. My voice has not been clear or the same for about 2 weeks now & it’s not only annoying, but makes me fear of what could be next in regard to new symptoms.

  137. Hi All, I have noticed no one has mentioned inhalation of 7% saline by nebulizer. I do this 1 or 2x a day to cough up the stubborn mucus that seems to lay in the bottom of the lung. I agree that it is important to cough the junk out but without the saline I pretty much cough little dabs all day. After a saline treatment I am usually good for a few hours and that is when I schedule my dental appts, other places where it is difficult to continually cough mucus. My pulmo recently put me on 250 mg of azithromycin 3x a week and whenever my mucus changes color (dark yellow/green) I do a Zpack. Is anyone else on same or similar protocol and how is itm working for you?

  138. I have bronchiectasis after decades of chronic asthma. Can cough up loads so sputum and am on seretide spiriva, onbrez and recently nuelin as well as occasional ciproxin. I agree with the efficacy of exercise, alas no running because of spinal issues. However swimming is fantastic for lung clearing but sputum I’m the pool is not a good look and when I cough after a few laps the looks from other swimmers are of horror at the sound …. wish I could afford a pool at home. Cycling is also good but flying lung cookies do not go down well with trailing cyclists. You have to laugh at yourself but I hate the progression from top of the world when the lungs are clear to cracking breath restricting wheezes as the lungs fill up. At least spring is arriving here in Melbourne and extra opportunities for outdoor exercise.
    Hang in there one and all. Chris

  139. Hello everyone, I am male 69 born 1945, smoke 10-15 a day, have had Bronchiectasis all my life but not diagnosed till 1971 by a primitive procedure called a Bronchogram. I recall coughing mucous/phlegm up all my life, but when young with the help of physio. I try and keep away from antibiotics, and I suppose a resistance can build up to them eventually, and some can cause side-effects worse than the disease. I had to give up work when 40, but try and keep going with hobbies till a couple of strokes slowed me down in 2012. I think that Bronchiectasis causes or exists side by side with sinusitis, fybromylagia, stomach acid probs. athritis, extreme fatigue, perhaps high blood pressure etc. Imanaged around 10 yrs. in the military, army and raf. but was medically discharged in 1972 after being diagnosed as above. How have I handled it all these years? I suppose Ihave had or tied to have a positive attitude, and even afflicted with bronchiectasis always tried to consider myself as normal and fit as anyone else. Of course it all gets tiresome etc. but I think I was around 60 before it all started to slow me and get me down at times. Doctors have never been much use, or chest specialist, which now I don’t go to, I thank the gods for the good old stand-by my Ventolin Inhaler, at times I have a struggle to keep getting them, as the practise nurse handles chest illness these days, and she has a drawer full of all singing all-dancing inhalers that take a couple of months to kick in, and when you struggle to breathe you need imediate relief not in a couple of months! These days I tend to be more debilitated than usual, but is that the bronchiectasis or old age or stroke residue as I call it, who knows? certainly not the doc. who are usually as much good as a chocolate watch, the ones I have come across. What did me good however and had me jumping out my skin was a month on predisolone 8 x 5gm. tablets once a day, but now they won’t give me them (only had them twice for a week) I don’t think they want oldies skipping down the road to draw their pension (-: do they really want you to be well? I have my doubts.
    Any info on predisolone would be welcome (I know the basics) your experiences would be helpful.
    Take Care Guys Davy

  140. An addition to my post. If memory serves I was on 8 x 5gms. predisolone for a week or so and they were reduced and finished eventually over the next 2-3 weeks.

  141. Hi everyone! Replying to Barbara’s question, I am thin and have difficulty in gaining weight because of my lung condition. Can some of you tell me about your experience using the vest? I am thinking of getting one. This blog is very helpful and gives me hope.Thanks to all. Breath easy!

  142. Hi – I was diagnosed only a few months ago and I’m still learning to recognize the signs of an infection so I know when to take antibiotics. I started to feel unwell yesterday but gave it a day to develop so I would be sure and not take them unnecessarily. I am now sure so started a course. I seem to be getting an infection about every 6 weeks, I have a lot of days with no mucous at all so I kind of forget I have it. I can’t do the exercises because nothing comes up. Other days I have to do them 2 or 3 times. I sound like an alien lunatic. I went on holiday with friends and tried to quietly (ha!) hack and hoof on the other side of the villa, I think I was heard for 30 miles around. I am sick of being asked if I smoke as well. Initially I felt like i wasn’t being told the truth and that I was going to die a slow and painful death so I have been enormously reassured by the amount of elderly people posting who have hadit all their lives and the many posts of people having normal lives (apart from the freaky alien hoofing and hacking cough). My father is a retired GP and he freaked me out a bit when he was taking a huge interest in my house sale and purchase, the location, lack of parking etc. he was asking me how I would cope if I was ill and couldn’t park outside my house. I imagined him thinking I would slowly struggle to get home because of my degenerating condition. I asked him and he had completely forgotten I even had it! Well my reassuringly normal life is that I am 46 and I have had many chest infections since I was a baby, plus asthma. I have a full-time job in a very senior corporate position as a regional legal counsel, I also have 2 children and i’m a single mum. I don’t have any child care as they area both at school and we manage somehow. If i get an infection and a temperature, I dose up and stagger about until the antibiotics kick in. I have felt so ill occasionally that I have had to do my job from my bed with my laptop and a phone. Fortunately this has only been every 3 months or so and each time I have worked out what has triggered it. Sanding without a mask, excessive cleaning etc. (something the whole population should avoid!) I am determined to get better at recognizing the signs and keeping myself healthier. I plan to still have a lot of fun, although laughing uproariously can be a trigger for a mighty coughing session (still good for a bit of phlegm removal!). I am finally in control of my asthma as bronchiectasis has made me grow up and take it seriously. I am now religious with my inhalers. (To Davy, please take the long term inhalers, they are wonderful and they only take 5 days or so to kick on plus you can continue using ventalin whenever you need to, the point is the other ones should reduce your need for Ventalin. I am on something called seretide which works well for me, but we areof course all different. Predisolone was fantastic for me the first time because I was riddled with inflammation (seen on CT scan), the second time I didn’t notice anything so I think that was because my asthma wasn’t the problem – I’m not a doctor but that may be the same for you, get the asthma side sorted and you will feel so much better. Maybe you don’t have asthma but it sounds like it could be to me, anyway take it or leave it we all know our own bodies better than any doctor ever will, so we need to listen for what it needs, that is what I am trying to learn to do.). I have no idea if I’ll get worse or not, but I take hope from a lot of the other posts and I refuse to let this stop me getting the most out of my life. I have read that people have difficulty keeping weight on because of it. I’m not sure why that is? I have always been slender (with slight yo-yo ing). Is it through feeling crap and just having no interest in food? I can’t see that ever happening to me. Last thing, I suffered rhinutus as well for years like an all year round hay fever. During the last year at the same time as developing the chesty cough, it’s just stopped. I stopped taking all nasal sprays for it as I had lost my sense of smell. My smell came back and no sneezing, no blocked sinuses and no blocked ears. Plus I usually had at least 5 colds a year, not one single cold for nearly 2 years, ironically I have never been so healthy, perhaps this is just a total anomaly but I wondered if anyone else had similar. Anyway those are some of the positives for me.

  143. Rae,
    I too use the nubulized saline 7% once a day. My doctor recently (2 months ago) suggested I try it. It works! I use 4ml vials and it takes about 10-15 minutes. The downside, for me at least, is that I found myself quite tired after each treatment. The doc also said I could cut the 7% strength in half by adding an equal amount of distilled water. That works for me even better and I do not get nearly as tired. When I use the 7% straight, I REALLY cough a lot while doing the treatment and that is what is so tiring. However, the noticeable results afterward are many hours of clear lungs throughout the day and that is a very good thing. I’d recommend this treatment to anyone who can tolerate it. Ask your doc about it. It is worth a try, and anything that improves the overall quality of ones life is welcomed.

  144. Christopher is there a forum for us in Australia
    I am in NSW (Lithgow )

  145. I was diagnosed with Bronchiatasis in the 1980’s so long ago I forget when think 87. I coughed up lots of blood could only walk a little way would have to sit down I was completely exhausted. GOOD NEWS today I hardly know I have it, what I did: avoided all smokers, all pressure packs, Chloride & ammonia products, & people with colds & flues & let them know to keep away from me or not smoke in my company. I went out to live in the country with fresh air, did lots of gardening & exercise, I am now 74 & a 1/2 fit & healthy, hardly ever take Ventolin anymore think my script ran out a year ago. I am a member of the SES & there are smokers there I am not unsociable if some one starts smoking out side I go to to wind side so their smoke blows away from me. I know I will never be cured but I am so well managed, it does takes time & doesn’t happen over night.but each day each month things get better until I found I am fit & well. :)) I am sure you all can as well. Sylvia Allan. Coominya Qld.

  146. I was diagnosed with Bronchiectasis at 16 after repeated attacks of Bronchitis as a child. Over the years I have learned management techniques with the help of doctors and physios. The most important thing is to clear the lungs of mucus as often as needed. I was taught auto genetic drainage by a physio and found the technique to be the most effective. Mucus which remains in the lungs builds up and moves into unaffected areas, thus damaging them.
    I use ventolin and symbicort morning and night. I always keep an antibiotic script In the house as infections can move fast. My specialist prescribed Augmentin Duo Forte for protecting the lungs when necessary. I also have a flu needle annually.
    Rest is important. Monitoring tiredness levels is necessary as rest helps with management of the illness.
    Pain has only ever been associated with Pneumonia.
    My advice is to have a good doctor,a good specialist to oversee management and a good physio to ensure you know how to use inhalers and autogenic drainage.
    I am currently working out management of chronic Sinusitis. Good luck

  147. Sylvia Allan: Great to hear you’re doing well. You give me hope. Indeed, we have to take good care of ourselves. Good luck to all of us.

  148. Anne Berker: Please explain in as much detail as possible what “autogenic drainage” is for those of us who have no idea what that is. Thank you.

  149. Thanks Rosana, I am grateful, I am not that sick anymore & I wish, every one else gets to where I am, But even I have to keep away from cigarette smoke otherwise I get a set back. Kindest Regards. Sylvia.

  150. I’m so glad I found this site. Was just diagnosed with Bronchiestasis after many months and many tests. Sounds like getting rid of mucous is most important. Have device for breathing through and then “huff” coughing and doing this 4 times a day, breathing through device 20 times, each session.

  151. Hi Bonne Young Sanders! Could you please give me more details of the device? It’s difficult for me to get rid of the mucus and I would like to get advice in doing it. Kind regards, Rosana.

  152. To all of you . Something that works for me is a salt pipe using SEA SALT that is bought off store shelfs I use my Salt Pipe 7 or 8 times a day inhaling Sea Salt Deep into my lungs. It is a lifesaver for me. Write me at for further help in this area.

  153. I was diagnosed with bronchiectasis 5 years ago caused – according to the doctors – from having frequent lung infections due to a compromised immune system. On a day to day level I find that avoiding certain foods definitely reduces the mucus in my lungs, these are – milk products, wheat bread and bananas . Inflammation of the lungs I deal with,basically, by avoiding all alcohol and sugar foods. The practice of Buteyko breathing helps anyone with asthma and inflammation in the lungs by reducing inflammation and, therefore has the effect of reducing mucus too! Ayurvedic medicine – ginger, turmeric, thyme, gota cola – has helped but what I find most successful in dealing with infection is Chinese medicine as practised by a Chinese doctor who is treating me when I get a cold with combinations of herbs designed to help boost the immune system and prevent bacterial infection. Alongside this he is treating me holistically ie adding herbs which strengthen the particular imbalances in my body which will help strengthen the compromised immune system. It seems to be working, I don’t get so many colds and when I do get one I’m less likely to get pneumonia– I’ve resorted to antibiotics only twice in the last 2 years and I don’t have a cough. I know my bronchiectasis will never be cured but hopefully the gradual erosion of the lungs will be slowed. The herbs that I take when I’m coming down with a cold have to be soaked and boiled each day over a period of 70 minutes which can be a bit of a drag and are taken over a period of 7 days usually morning and evening, they don’t taste very nice and the cost of treatment is similar to a chiropractic treatment but worth every penny! I hope this is of some hope to fellow sufferers. Chrissy

  154. Hello e everyone,
    I’m really curious to know if there is anyone who has the same form of bronchietarsis that CAT scans clearly show. I often have attacks of pneumonia which are treated with antibiotics but which usually take about 4 to 6 weeks to get over. I DON’T have coughs or mucus!! Sometimes chest pain, sometimes fever and terrible weakness. I’m aware that every attack leaves scars and that general lung condition worsens each time. Would very much like to know how to avoid attacks, what kind of climate is best, should I book a flight to Mars? All the best to all, Karen

  155. My history sounds similar. Five years ago doctor put me on inhaled Tobi, 10 days a month for a year, now 7 days every other month. One very mild infection, no pneumonia, no flue and no colds. I also do cardio for an hour and a half every day, elliptical or walking, then light weights. I also use a Fluter Valve 10 times every morning. All seem to help, as before lots of colds and pnemonia.

  156. Bud,

    I’ve been on inhaled Tobi, 28 days on – 28 days off. Did you know that Tobi can cause hearing loss? I’m 88 and can expect some hearing loss, but this is sudden. The antibiotics seem to keep me from more

  157. Hi to all . A question for Bud: Do you also use inhalers besides the TOBI? and Alice, it’s great to hear that you are 88. Since when have you been diagnosed with bronchiectasis?

  158. I was diagnosed with bronchiectasis over 25 years ago. But think perhaps it was there much longer. With the help of an acupuncturist I was directed to a doctor specializing in lung problems!

    Now at age 88 it seems to own me. But I’m in my own home with the help of my husband. Tobi did not seem to cause my hearing loss.

  159. Rosanna, I use Pulmacort and Aburteral only when taking the Tobi. Other than that I use a Flutter Valve twice a day, ten exhales so 20 in all. I exercise daily with 5 mile walk. It all seems to work

  160. Thanks Bud and Alice. I also exercise daily for one hour, except when I get an infection. Following instructions of my doctor, I use inhalers twice a day, two shots each. The inhaler causes a severe dryness in my mouth and throat, so I can’t get good night’s sleeps. I have to wake up several times to drink water, because I can hardly swallow.
    I would like to get a Flutter Valve, but it is not known here where I live. I have read about it and it seems to be very helpful. Kind regards…

  161. Rosana,
    I use inhalers at least 2/day and, like you, also have severe dryness in mouth and throat. I’ve been advised to use a flutter valve and now there is a SmartVest on order. All of this is necessary but time-consuming. Good Luck!

  162. Rosanna, Flutter valves are available on Amazon. There are two kinds, blue and green. Start with the blue one. I exercise with an infection, push even harder than without infection, I feel it helps clear the lungs, both with infection and without, but more important with.

  163. hello everyone..recently i had a ct scan and it says i have early scattered bronchiectasis.. my symptoms are little chest pain and a shortness of breath.. i dont have a cough… why dont i have any cough or is it that its early so i dont have a cough..will it get severe with time..plz help me…my doctor tells me its not even a disease..just stay away from dust dirt pollutants, do exercise and i will be fine…i am just 23 and this makes me worry more..plz can anyone help me..plz

  164. If you’ve been diagnosed and fold not a disease, find a new doctor and get another opinion. I’d you have it, exercise has helped me manage the disease and the inhalded drug Tobi.

  165. Nishant, read through this blog and you will find some great information to help you. I have had bronchiectasis for decades (since 1979 at least) and have lived a very normal life. If your doctor told you that bronchiectasis is not even a disease, he or she misspoke or is uninformed about bronchiectasis.

    The cautionary advice given by your doctor is good, however. Stay away from any kind of pollutants and vapors (chemicals, paints, etc.) as these can only irritate your lungs and possibly (probably) cause an infection which will damage your lungs. Bronchiectasis is a chronic progressive disease, so limiting the risk or infections or exacerbations (i.e., bleeding) is a key factor to controlling the progressive nature of the disease.

    Buy dust masks (N95 or better) and a good vapor mask so you can do your daily chores without as much risk. I wish I had done this when I was much younger and thought of myself as “indestructible”. My rule now is: When in doubt, use a dust mask!

    You can and will live normal life if you minimize your risks or infection. You can slow down the progression of the disease by being careful and using protection for your lungs.

    Finally, find a really good doctor who specializes in bronchiectasis if you can. I was lucky enough to have a world renowned doctor within minutes of my home at the university hospital. His advice and care have made a huge difference to me.

  166. HI Nishant, Bronchiectasis is a degenerative disease. It is what it is. However, you can minimise the risk of infection, because that is what makes things or will make things worse for you.I agree with Bud, you should get a second opinion.
    Breathe easy !

  167. thanks everyone for your replies…i read the comments in this blog and i am trying whatever i can to protect my lungs, doing exercises, getting the mucus out of my lungs as much as possible…
    but what is this drug tobi for?

  168. so is it that if the lungs are protected from infection which causes lung diseases, the growth of bronchiectasis will be slow?? sorry to bother you all with so many questions but i am really woried.

  169. Hi Nishant, yes it will slow down the progression of the disease. A doctor should tell you more about your own lung health. And what you have to do. A general rule may be compromised though, if you have other health issues.

  170. Bronchiectasis is a progressive disease, period. That said the progression can in some cases be lessoned by breathing treatments, drug therapy and exercise. But, it can be made worse by doing nothing. Regardless the disease progresses until usually phenmonia takes over and end of life. That said I have a friend who is 85, has had it her whole life and is doing well.

  171. What a depressing comment, you get worse then you die of pneumonia – I refuse to give into it personally. I was getting infections every 6 weeks, I have been taking my health more seriously and sorting out my asthma and I now haven’t had an attack for 6 months now, and I used to cough continuously , no longer, long may it continue. So please don’t be disheartened, everyone’s different so every story will be different. Be positive.

  172. Hi Kim, I am sure Bud did not mean to depress anyone. He talked about the reality of the progression of the disease, when our body cannot fight anymore and recover from bad infections.
    I am glad you are getting better and you are working at getting better. I also agree when you say to be positive. That is something we all aim for as much as we can.
    Breathe easy:) !

  173. Hi to all !!! I am also sure that Bud did not mean to depress anyone. Instead, he always encourages me with advices and his good mood. I am so glad that by means of this forum I can be in contact with all of you. Ah……I finally got a flutter valve. Let’s be positive.

  174. High-frequency chest wall oscillation: This uses a vest that you wear. It attaches to a machine that causes the vest to vibrate your chest.

    Maybe this helps.

  175. If I depressed anyone or offended anyone I apologize, that was not my intent. That said, my personal feelings are that if one does not face reality one cannot possible expect to be successful in control of this disease. I fully know as does my wife that if I am not hit by a car, fall off a mountain etc that I will eventually die of old age and that death will in all probability be caused either directly or indirectly by this disease.

    That said, when I was diagnosed with it five years ago I was ill, sometimes seriously ill every month or more often. I was on constant antibiotics etc. The disease had been misdiagnosed for over 12 years we figure. After I saw a specialist and he started me on Tobi, which is an inhaled antibiotic and he suggested light to moderate exercise I started to show signs of improvement. The monthly illness is no more, instead of being able to walk 200 yards I walk four miles and work on a weight machine seven days a week. I’ve had two “episodes” in five years now.

    My doctor specialist attributes this change to the Tobi, exercise and attitude. This disease as awful and debilitating as it can be will not stop me, period. To give you an idea of attitude: I had my gallbladder removed in June, the next day I could not walk our four miles, but I did two and a half and the next day back up to four. It hurt like all hell, pain was significant, but that is a good thing. So is the coughing up phlem for two of the four miles we do as it “cleans me out”.

    So to all, again I apologize if I offended or depressed anyone. This disease MUST be worked through. No matter how tough it is, one must get out, get moving and follow doctors orders to the letter. It is manageable, its’ not fun as it’s 15 degrees right now and my wife and two Labradors are heading out for the four miles. I will cough a lot more due to the cold, but it is what it is.

    Stay Strong


  176. One other point. I also use a Flutter Valve every morning. Can be purchased as so named on Amazon for about $50.00 US. It too helps clean me out.

  177. Hi Bud, I totally agree with you, I certainly want anyone who comes here to say what they want to say and the way they want to say it. I am always doing it myself, with my lows and highs through my diary. It is called freedom of expression:) . You are positive and you live your positivity every day and you give such good advices to help us do the same. But you are not hiding your head in the sand, not sure that is the right expression lol, and you are telling as it is. Frankly, that is one thing that I apreciate a lot. We can dream, we can ignore facts but the disease is what it is.
    Breathe easy:)

  178. I have had Bronchiectasis for 18 years and am in my late 60’s. It was discovered after I developed Mycobacterium Avium Complex (MAC). Soon I was diagnosed with Sarcoidosis and Emphysema. And yet, with all those things I still sing in a choir and work as a Celebrant. There are times when singing is difficult and I cough more than I sing. And, of course, times when I don’t feel well. I am due to do a course in Pulmonary Rehab, which will be interesting. My doctor is also talking about operating to remove something which (I think) he called a cavity, in one lung. But he wants to talk to me about the risks and possibility of another one appearing somewhere else. It’s a continual roller coaster of events in my health. I have only just discovered this blog. It has been very reassuring, in some respects, but I have only seen one post from someone who has both my health problems. Does anyone else have MAC?

  179. Hi Christine, thank you for your message. I admire your courage and tenacity. Despite your health you keep going and that is what is important. At the same time, I am sorry you are going through so much. Pulmonary rehab has tired me a lot and at the same time gave me back some control over my breathing. So, I hope all goes well for you.
    Breathe easy:) !

  180. I’m looking forward to some help with breathing, so here’s hoping!

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