Mrs

[matron65]

I'm a sixty nine year old retired nurse and have just been diagnosed with BRONCHIECTATIS even though I have never smoked, I'm finding it hard to get my head around the diagnosis because I lost my sister to COPD last November and she really struggled to breath at times, it was very distressing to watch her.

[pergola1]

I have had bronchi for years now. I used to suffer with numerous chest infections, but after taking azithromycin, have kep much better health. xx

[matron65 in reply to pergola1]

Thanks for that I feel more positive about the future x

[cofdrop-UK]

Hi matron and a very warm welcome to you. Glad you found us but sorry for the reason.

It must have been quite a shock for you when you were dx. Please take time to come to terms with this. I have had bronchiectasis since I was 5 months old and in a week I'll be 67 - so it is not a death sentence. The main thing is to keep your lungs as clear as possible, a referal to a resp physio would be helpful. You also need a good resp consultant, preferably one with a special interest in cf/bronchiectasis.

If you have any specific questions, please don't hesitate to ask, there will always be someone only too hap[y to help.

cx

[monkey65]

Hi and welcome. I have bronchiectasis and have never smoked. Mine seems to be related to asthma and allergic rhinitis. Before I got the diagnosis I was quite ill but now I have the right treatment and physio I feel better than I have for years.

As well as Azothromycin, it is important to try and avoid infection (wash hands, get flu jabs etc.), eat healthily, get some exercise (the usual advice for everything!). I found chest physio which was offered by my local hospital helpful. Just ask if you have any questions.

[Hidden]

Hi there Matron. You have had some very good advice from people like me who have had lifelong bronchiectasis and with the right treatment and a lot of personal effort have lived full lives. I am sixty four and was diagnosed at three. Actually, now that you know that you have it, get your medications,do your physio and clear your lungs and get lots of fresh air you may feel better than when you did not know what you had. Bronchiectasis is the result of ongoing damage to the alveoli and airways and usually develops over a long period of time with the sufferer not really aware of what is happening, just feeling one degree under and getting infections. Good luck, we are here for you. xx

[Lyd12]

Im a non smoker with bronchiectasis. diagnosed a few years ago after coughing up blood. Had a ct scan and bronchoscopy. May have been caused by the pleurisy I had as a baby. Before diagnosis had a long spell of chest infection that took several different antibiotics before clearing. I get chest pain quite often and sometimes cough up blood. I do daily breathing exercises and shift mucus. Im 81 and find it tiring and unpleasant but mostly tolerable. didnt like the consultants attitude - its only bronchiectasis, dont look so worried! wish my gp had a dr interested in respiratory.

Iris x

[cofdrop-UK in reply to Lyd12]

Awe Iris

I don't know why he/she trivialised bronchiectasis, maybe con was trying to reassure you, not realising how upsetting and empty those words were when you know how much you struggle and the work you have to put in to stay, at best, on an even keel.

This is one of the reasons I support folks finding a resp con with a special interest in cf/bronchiectasis, that along with my seeing over the years many resp cons whose special interests are in other areas.

We've all experienced unhelpful and sometimes down right rude or sarky comments and nowadays I would always challenge them (not always easy when you feel c***.)

Hope your consultant was having a bad day and is more helpful in future, if not maybe a change may help.

Good luck hun.

cx

[Lyd12 in reply to cofdrop-UK]

thanks Cofdrop. con didnt even mention seeing physio, when my husband suggested it she said you could do that. Maybe she had just seen a really bad case of lung cancer, you never know. Hope your health is good as can be . Love Iris x

[cofdrop-UK in reply to Lyd12]

Yes we can and do do our own physio but you initially need a professional physio to show you different techniques to find what suits you best. Don't allow her to fob you off. It doesn't matter who she saw before you, she was caring for you at the time and that's where her focus should have been.

Take care hun.

cx

[Nikkers]

Do you know what Matron? I was diagnosed with bronchiectasis when I was 5 years old and I too had NEVER had a cigarette in my life! lol,

As an ex- nurse I'm surprised to hear you say that. The most common thing that smoking gives you is emphysema . Bronchiectasis usually happens though damage to the lungs through recurrent illnesses like pneumonia. That's how I got it during the war.

[matron65 in reply to Nikkers]

I have never had pneumonia or chest infections until recently. Each doctor asked me if I have ever smoked because of the scarring on the lungs is bad. They have told me that I have BRONCHIECTATIS due to passive smoking.

[Nikkers]

Very possible, but it doesn't take too many infections to start it, that's why I got it at such a young age.

[Lyd12]

I had a couple of bouts of pleurisy before diagnosis, so that probably contributed. My father was a smoker and died of emphysema, so I was exposed to cig smoke until I married. I hope there will be more interest and help in the future . Saw my GP yesterday for a general check up and she never mentioned bronchiectasis. I asked for a form to enable me to submit a sputum sample when necessary without waiting for a drs appointment. got that ok but no questions about how I was coping with this condition. all about my age and risk of stroke or heart attack, and whether I would like to go on statins. iris x

[cofdrop-UK in reply to Lyd12]

Arrrgggg so cross for you re these medics. One thing we learn pretty quickly as bronchiectatics is we have to be our own advocates.

Unless it is one of the genetic causes, I'm not sure it's that important finding a reason. As a baby I had whooping cough + double pneumonia and aged 19 measles - so as my con says a double whammy. When you think of it matron most folks of our age, even though we were non smokers, were surrounded by smoke - be that at home, work, socially or on public transport. So why doesn't everyone our age have bronchiectasis? You might be right hun about the pleurisy.

What matters is how well it's managed. If she doesn't bring it up then you must. You deserve better.

cx