Hi there! My name is Carol and I live in Australia ... I was diagnosed with bronchiectasis at the age of 5yo. No real connection to other family members having anything like it. All I know is I would be up all night coughing and wheezing as a youngster, which led to a collapsed lung and the diagnosis of bronchiectasis. I am now 57 yo and have had several CT scans over the years that continue to confirm the initial diagnosis. Two lobes of my lungs are affected and it is considered moderate. I joined the British Lung Foundation looking for further help as the condition progresses. I have found Australian doctors don't know much about it, and many don't care. I'm a great believer in "physician heal thyself" because I don't have much faith in the medicos here after appalling treatment by a local hospital recently during a particularly bad flareup. I look forward to meeting you all and hearing your stories. xxoo Caz
Hi there from an Aussie gal with Bronch - Lung Conditions C...
Hi there from an Aussie gal with Bronch
Hi Carol and welcome to our friendly and supportive site. There are quite a few bronchs on here with a lot of experience in living with the condition, managing it and battling with the general ignorance of bronch amongst the medical fraternity.
I am 68, was diagnosed at 3 with severe damage in most of my lungs and my parents were told when I was 6 that I would not survive another pneumonia. I too am one of the 30% for whom there is no detectable reason as to why I had all of the pneumonias that led to it.
Thanks to a radical doctor who put me on basically the treatment and self management that I have now when I was 6, I have had a normal life, travelled the world and am still giving it plenty.
Unfortunately, even in Britain, all GPs and most general respiratory consultants do not understand it because their training is weighted towards COPD. They pretend that they know about bronch as they do not like to lose face but left to themselves will treat it like COPD which is not the same at all.
So what to do.
Bronchiectasis is very complex, changes all of the time and we are all different.
It appears that you have done very well to get this far but as bronch is progressive, especially if the cycle of exacerbations is allowed to continue and lead to further lung damage, you are wise to wish to get control of it and to find good medical help.
Basically, it us important that you clear your lungs of mucus every day, eat well and take exercise. In addition, you need the ongoing support of a bronchiectasis specialist who will know which antibiotics to give you, in the correct doses, delivery systems and durations for any exacerbations that you get. It is imperative that you start the abs as soon as you notice a change and so you should have a supply of the ab you need at home.They should also have a physiotherapist to help you with clearance techniques.
My main relationship is with my specialist who tells my GP what to give me and at present I am nebulising antibiotic on a permanent basis which is supplied by the hospital.
I do not know the Australian system and so I can only give the advice that I give over and over again to people in Britain.
Get Yourself a Bronchiectasis Specialist!
Look on the internet to find one that you can access. They are usually at large teaching hospitals. When you have the name go through whatever process you have there to see them. Do not take no for an answer. I’m afraid that we have to be active in our own interests and vociferous in sourcing the treatment and support that we need.
Good luck, do keep us informed as to how it goes and please come back if you have any questions.
Thank you so much for your help littlepom!! I hear you're the resident expert on Bronch lol!!
Just one of those on this site who have been battling with it for a lifetime. I have learned a lot, mostly due to having a consultant for thirty years who was foremost in research in the UK when nobody else was bothering and taught the US in 1986 that bronchiectasis was a condition of its own and not just ‘cystic lungs’. I do feel passionately that bronchiectasis is one of the orphan conditions, especially in relation to its close cousin, cystic fibrosis which gets major attention. I encourage everyone to learn as much about it as they can and push push push to get the care which we need. Welcome to a very special club.
Thank you for your info! I’m in the US and my dad has bronchiectasis. He was diagnosed at 5 and is 78 now. He has had more issues in the last 2 years and it has been a bit frustrating getting him treated properly. His chart reads COPD and I’ve seen in more than one occasion a look of disdain cross the face of his attending physician in the ER when they see those letters. He has never smoked, drank or anything else that would cause him to “have caused the situation”.
He’s on axithromyacin 3x perceeek and nebulizes Brovana, Budesinide and does a cycle of 28 days in and 28 days off of tobramycin. He also has a vest he wears twice per day to help break up the mucus. He had the lower lobe of his left lung removed at 16 and he also had whooping cough as a child. He has no other health conditions. He’s pretty much a walking miracle!
His dr has moved to another department. How do I go about finding a specialist who treats bronchiectasis and doesn’t just lump him in with the COPD patients? They are very different situations.
Thanks in advance for your tips and I wish you all a happy, healthy, Christmas season.
Susan
I feel for you so much. Doctors are mostly so ignorant. Even in such a short post it is easy to see that your Father has the classic background for bronchiectasis. This is very different to COPD and should not be treated the same. Luckily, and probably because this is the US where they love to spend your money, he seems to have everything covered in terms of his azithromycin and nebulised tobramycin for ongoing prophylactic treatment. The vest is very expensive in the UK so most of us have to rely on our own efforts to get the mucus out unless we are very weakened and can’t make enough effort. It may be that another bacteria has colonised his lungs which needs a different ab or he needs some IV antibiotics to give his lungs a clear out as the ongoing antibiotics may not be coping with his resident ones. ( pseudomonas is my guess). Bronchiectasis is complex and it is progressive. We have good years and bad years and are constantly fighting to stay ahead of the bugs which give us trouble.
I don’t know how you pay for treatment in the US but it certainly doesn’t do your Father any good for his doctors to misname his condition and take an attitude towards him which is very wrong.
I do suggest that you look on the internet for a bronchiectasis specialist in your area and mive to them. If only to have someone who understands his condition and does not call it what it definitely is not!
When I was living in the US in 1981 I needed antibiotics for an exacerbation. The pulmonologist whom I saw laughed at me, told me that bronchiectasis did not exist and that I had cystic lungs. In 1986 my consultant in England went to a conferance in Las Vegas and taught the US Thoracic Society that bronchiectasis was a condition in its own right.
It is so disappointing that knowledge has moved on so little since.
I’m sorry that I can’t be of more practical help.
Thank you so much for your kind reply littlepom. You did offer some ideas for me to check out and those are much appreciated. He does have a colonization of pseudomonas. I’ve been researching different probiotics that seem to help the gut while also creating a less welcoming environment for the pseudomonas.
I will do more research on bronchiectasis Specialusts in this area. Do you have any thoughts on Spiriva? I’ll order it for him 90 days at a time and trust him to continue taking it and then I find he has stopped it due to the cost. It’s very expensive here...almost 400 per month.
Have a great day and thanks again!
Susan
I have had a spiriva inhaler for about 15 years and fostair for ten. To be honest, I am not sure if it does anything as any breathlessness I got from my chest is/was due to mucus in there or an exacerbation ( infection). There is always a joke between myself and my consultant as to why I have either of them because they are both asthma drugs and I have never shown that I have asthma in any tests. Hey ho, such is bronch! at least the fostair keeps inflammation down in my airways.
Probiotics are a difficult subject. Many people get an overgrowth of flora in their gut when they take antibiotics, so take the pro biotics to try to counter that. However, it has to be born in mind that they can prevent the antibiotic from working, which I don’t think many people realise. They will have no effect on pseudomonas which grows in the lovely pools of mucus in the lungs and airways. If. he feels like trying them, take at least two hours before taking any antibiotics.
With pseudomonas he would be better off with continuous nebulised antibiotic. Usually, colomycin or tobramycin. This acts as a prophylactic to stop the pseudomonas having a party. Then if it does get out of hand ( usually as a result of a viral infection) a course of 2 weeks oral ciproxen or if needed, two weeks of IV.
This is why he needs a specialist. He is very lucky to have you to do this for him. Good luck with your investigations and do keep me up to date.
Hi Caz,
So nice to meet you. I don't have the same condition as you but there are others here that do. You will find a lot of support and just general "niceness" here . 😁👍😊 So glad you found us, and hope to hear more from you.
Sending warm wishes,
Cas xx 🎶
Welcome....I have recently been diagnosed as having bronchiatasis, mild. I've a lot to learn about it. I joined perhaps an earring year ago. Agreathelpful group here...Again, welcome. Jan
Welcome Carol, good to meet you and I can see you have had some great support already.
I am carer for my husband Pete who has sarcoidosis and COPD.
Wishing you well. Xxxx
Oh, my! "....nearing a year ago." "A great helpful group..." Corrections on previous post. J
Welcome to our Wonderful Forum Caz. You will get lots of Responses here, though I started with " Bronch" many Years ago (misdiagnosed) I have stage 4 COPD, on Trx List. Can't knock our NHS, all have been wonderful. My name is officially Carolina. "Ca" to my Brothers. I chat a lot and try and help where I can. Your Photo is Lovely of you Both. Love n Hugs. Carolina XXXXX
Having done a quick internet search I see that the Lung Foundation of Australia have a registry of patients. They can also supply the names of bronchiectasis centres. If you google ‘bronchiectasis specialists Austealia’ quite a few sites cone up. We have one member on here who is brilliant at this so hopefully he will be along.
Thank you Littlepom 
aporeciate it very much.
Just a few Au links:
gardn.org.au/registries/aus...
lungfoundation.com.au/resea...
racgp.org.au/afp/2012/novem...
nps.org.au/australian-presc...
mja.com.au/journal/2010/193...
healthengine.com.au/interes...
Thanks 2greys. I'm sure that will be helpful
Hi Carol welcome I apologize as I don’t have any valuable info on progressing bronchiectasis although I understand an agree”physician heal thyself” but with respiratory issues especially you really need a healthcare provider that can give wéstern medicine in time of desperate need. Please find yourself a healthcare provider you can trust who won’t allow or tolerate anything but utmost quality care for their patients. Or move here- I live in San Diego, California USA our weather is similar to yours as in mostly sunny days. I truly believe being of surf culture being outdoors and fresh air are healing properties I’m very fortunate to have at my disposal but we also have really great healthcare providers. The government they have to be ruled by is rather ugly at times but they are skilled physicians here. Do you feel like your condition is getting worse at a faster pace or something? Good luck with it. Hang around the site you’ll get help🤙
I so agree about the sunshine! I try to get out of our glum winters and was away on a world cruise last winter when our weather was diabolical. Sunny clear air is always best for me and my chest is always so good in places like the Caribbean. This year I just haven’t been in the mood to book anything so guess I shall have to spend most of the winter in my house or huddled in a scarf trying to avoid the donations of the virus spreaders.
Welcome,you struck lucky Carol,already you have had a great reply from our resident Bronch specialist L.P and there probably isn't very much she doesn't know about the subject,i'm afraid i have just got boring emphysema but just wanted to say hello.
love Ski's and Scruff's x
Hi there skischool .. so LP is the resident expert .. thanks for the heads up lol! I'm sorry to hear you suffer emphysema .. that's no walk in the park either. Sending love & hugs from Aus xxoo
Ski’s and scruffy cat are a wonderful support for all of us, whatever ails us. They are also great at lifting the spirits and bringing on a laugh.
May I ask what the difference is between COPD and Bronch?
COPD is the banner which covers emphysema and chronic bronchitis. Some people incude asthma in that but actually it has its own specifications and difficulties. The damage to the lungs and airways in COPD is different to bronchiectasis and tends to follow a pattern of increased breathlessness owing to the closing down of airways and alveoli in the lungs ( a person with COPD could explain that better than me). Bronchiectasis comes about because of many reasons, usually related to pneumonia, repeated infections, childhood whooping cough, measles. The alveoli (air sacs) in the lungs and airways become stretched and floppy allowing mucus to collect in there.
The main battle is against infection which gets into the mucus which collects in those damaged pockets in the lungs and airways. It is possible to have bronchiectasis develop from lifelong asthma and also from infections brought on by COPD. Very complex. This is why all bronchs are different and need a specialist to look after them. I hope that helped.
Thanks littlepom ... that WAS helpful ... I was beginning to wonder if I'd been diagnosed correctly but I definitely fit the bronch explanation over the COPD one. You are a wealth of information so thanks heaps!! Sending love from Aus xxoo
Hi cara4116 and welcome to our international family,all on this forum are very caring and understanding wish you better health God bless Nash62 x
Hi Cara and a very warm welcome to you. Lovely pic btw.
I have had bronchiectasis since the start of the NHS in 1948 as a 5 month old baby, following double pneumonia and whooping cough. Now 70 and in latter years have asthma. Things are changing, allbeit slowly on the bronchiectasis front as there is now recognition that it has long been an orphan disease and now there are some very proactive international consultants who are now into research specifically for bronch. Blimey in my 70 years we have just had our 3rd International Bronchiectasis Conference. If you detect a hint of sarcasm, that’s because it is intentional.
Along with a number of cf/bronchiectasis consultants from the European Respiratory Society and a group of Patient Advisory Group from European Lung Foundation, of which I was one for 2 years, a lot of work was put into this link, which I hope you and jmsutt will find helpful.
europeanlunginfo.org/bronch...
Please feel free to ask any questions as there are lots of people on here who are knowledgable re bronchiectasis willing to help.
Love cx
Thanks so much cofdrop .. you're an oldie but a goodie .. can't keep a good man/woman down!!
Thx Cofdrop! I have been trying to get a firm diagnosis for the past 12+ months, ever since becmng aware of oxy-drops on ambulation. Finally...was told last week hat I have mild bronchiecstasis. I knew by then that I also have 2 pinpoint size areas of emphysema at top of both lungs, and minor volume loss in base of both lungs. (Plus, have spot on lung that is being monitored.) The bronchiecstasis was said to be as mild. The volume loss, which has personally been the scariest because it was suggested by the HRCT radiologist as "possible" beginning of IPF, was dx'd last week to be damage resulting from childhood whooping cough which I had at 8 mos. accompanied by a serious pneumonia. The Pulmo said that the v-loss had almost positively been there for a very long time. I have no ct-scan results until a year ago, so nothing can be said as carved in stone. (Thankfully, my mom had told me of this illness when I was a child,) Oddly, while giving my health history on 1st visit to pulmonologist last year, it just popped into my mind all that my mom had told me about having had those 2 illnesses simultaneously when I was 8 months old. I had not thought of it for a very long time. I am now 75 yrs., Mom, gone now 22 yrs., must have been nudging my memory. I was her youngest of 9 children. I hope the volume loss is as Dr. says, due to the whooping cough. Three pulmonary looked at these results, and none believe it is IPF.. Thx so for link to bronch. Already see good info there. Jan
I too have bronchiectasis, diagnosed 6 years ago, but probably had it at least 10 years, if not more. Littlepom has told you nearly all you need to know, so I hope you get beyond the doctor who won’t listen and find the expert. Welcome and all the best xx
Thanks Carnival567 😊. My GP agreed the specialist here couldn't do much more than he could initially but then he was an A&E doctor from the UK who has settled in Australia. I suppose if I get really bad where drugs aren't combatting infections, that is when we will look further for additional advice & assistance.
Hi Carol and welcome to the group. There are members from all over the world. Everyone is helpful and supportive and I’m sure you will enjoy the support you get here.
Hi Carol, nice to meet you. I'm in Brisbane and have emphysema. I'm not really familiar with your condition, so can't offer advice. Take care. Kevin.
Ooh Kevin you're almost a "local" lol!! Sorry to hear of your condition. My husband's father had emphysema so familiar with it sadly. Hope you are keeping well :). Where about in Brisbane do you live?
Nice happy picture Cas xx
We do our best Happylondon .... makes up for the tough times heh? Lovely to meet you!!
Hello and welcome ✨⭐
Hi there HungryHufflepuff ... love the name ... very creative!!
Hello and welcome Caz
This forum is the best. Despite working on a Respiratory ward with a Prof who knew about B'ect it's only when you are diagnosed you really need the expertise of fellow strugglers. I found a Consultant in Exeter so am very lucky. Just to add to what the others have said. Been advised to get Annual Flu & Pneumonia vaccinations
Hi cara4ll6, welcome to our friendly group. I too have bronch although I have only been diagnosed for 6 years, so compared to you I am a beginner. I am sure you will find good advice and help here should you need it. So sorry to hear you have no bronch specialists in Oz. I am classed as mild bronch but because of constant infections/pneumonia I now take Azithromycin 3 times a week. Do you take any form of antibiotic to stablise you. Take care, Maximonkey
Hi Maximonkey ... even though they say my bronch is moderately advanced, I don't know that I'm as bad off as you as I only take antibiotics and prednisone during a flareup but I'm a great believer in growing a few herbs in the garden and nibbling on them daily to help strengthen my immune system ... anything I can get my hands on that is fresh from the garden and organic (that is not tainted with chemical sprays I will do anything to get a hold of, lol!!). I will avoid taking drugs on a regular basis at all costs, and will only do it if I'm not getting better, because they all have temporary and some permanent side effects (eg. Prednisone taken for a prolonged period causes cataracts ... I used to work with Eye Specialists and we saw this quite often). Another reason I want to stay off drugs as much as possible is that as the condition progresses, and it will, I want somewhere to go with the drug therapy .... if I've already used everything available it means there's less the doctors can do for me further down the track (short of a lung transplant).
Hi Cara4116, I can understand how you feel about drugs, however, we all have a different road to walk and our circumstances are all different. Don't be downhearted about Bronch, we are the lucky ones unlike COPD Bronch is something we can live with until old age. We have members on this site who have had Bronch since babyhood and they are now 70ish. I am 72 and 5 years ago just after diagnosis I was sitting in my consultant's waiting room waiting for my turn when I began a conversation with an old lady in a wheelchair. Her story was fascinating, she had suffered with Bronch all her life and was 90, she told me stories of what had been medically carried out over the years, none of which had helped, but here she was a jolly old lady. It made me feel very small for I was 65 and had had a really good life, it was only one year since my diagnosis. I felt really uplifted to know my life was not over, my miracle drug, Azithromycin, has worked and I feel really well. Thankfully my illnesses since then have been mainly to do with asthma not Bronch and the Consultant is very pleased with me and I only see him annually. If anything does go wrong I only have to phone and I am seen either by my consultant or he contacts my GP who sorts my problems out. Living with Bronch is tiring but as long as we accept this and try to avoid infections we are ok. Look on the bright side, it could be much worse. Take care of yourself. Maximonkey
Heh there again Maximonkey :). Yeah I totally agree, we are all on a different path and must do what's right for our circumstances ... no judgements here at all. I have the utmost respect for all my fellow "lungies" :). That was very encouraging to hear about the 90 year old you bumped into who told her story of lifelong bronch. I'm not downhearted by it at all ... I've lived with it all my life, just more being careful about my choices to remain in the most optimum health possible. Sending love and hugs to you xxoo Caz
Hi Cara, so glad to hear you feel in a good place. Take care of yourself. Have you had your flu jab? It must be hot were you are so enjoy that sunshine, I am off to Tenerife in the Canaries in two weeks to soak up some rays. Bye for now. Maximonkey
Hi again Maximonkey ... hey enjoy your break ... sounds lovely ... can I pack a bag and come to?? Re the flu jab, I'm a bit weary of them and what they put in them these days. I've been healthier without getting them lol so may remain that way. I would only consider getting it if I was getting lots and lots of repeat infections but so far, touch wood, only a really bad bout maybe once a year?
Hi Cara, thanks for the good wishes. I am glad you are feeling good and not getting too many infections. You are so lucky, I seem to catch everything going. Still not to worry. I have been having flu jabs for 51 years and so to me they are part of my life. I have never had an adverse effect and they do help to keep flu away. Have a great day. Take care, Maximonkey
I ended up with Bronchiectasis after having Mercury Poisoning as a 6 month old baby, which, in turn, left me with Pink Disease. I joined the Australian Lung Foundation as they were knowledgeable regarding Pink Disease where the British Lung Foundation hadn’t even heard of it. Thank goodness for the internet.
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