Just been (finally) diagnosed with Bronciectasis. After nearly two years of being told it was just exarcebation of asthma, simple dyspnoea, and even possible COPD. A year of CT scans, heart scans, spiromitory tests, lung function tests. Even work related occupational health medicals because I was off work for over a year before I resigned.

I was living away from home at the time, which is why I resigned from work so I could move back home for family support. First time I discuss my issues in detail with my new doctor, he tells me I have Bronchiectasis. May be the results of the last lung function tests my old consultant had me do a couple weeks before I moved.

Having looked into this more, and having read comments from someone on the NHS Bronchiectasis info page, it all fits and everything now falls into place.

At least now I have some kind of diagnosis, and something to work with. Anyone else have Bronchiectasis? Any advice most welcome!

Thanks :-)

12 Replies

  • Many thanks Stone :-)

  • I don't think bronchiectasis could be diagnosed on the basis of spirometery tests alone. A CT scan would be necessary as well as careful noting of your symptoms. Producing a lot of sputum and regular infections for example, are typical of bronchiectasis but of course they are typical of orher conditions too, so the CT scan is essential for accurate diagnosis. I've had bronchiectasis for about 40 years and until about two years ago, though troublesome, was well controlled. Now I've hit a difficult patch but all conditions have difficult times. If you've just been diagnosed then getting the correct treatment should keep your condition very manageable. There are loads of posts about bronchiectasis on this forum, ao check thrm out for more info. Good luck !

  • Well it may have been the lung function tests combined with the earlier HRCT scans I'd had done. Having read more about it, I think I may have had it for some time, just gone undiagnosed. A lot of things have all fallen into place now.

    Many thanks Argana :-)

  • Hi Symes,

    Sorry to hear that you have bronchiectasis. I've had it my whole life. My younger years weren't too bad although I was subjected to a dreaded bronchogram every year. As long as you stay out of dusty/smoky places etc., you should be fine. Unlike myself who wanted to be part of the scene (as you do when young) and took up smoking. They understand it nowadays and are able to manage it better. Nobody seemed to know what it was before the national health came in. As soon as I saw a NH Doctor at Brompton Hospital, he diagnosed me straight away. I do have 2 types of inhalers which I use and I get an infection from time to time, but other than that it never stopped me from doing anything in my life. My problem now is Emphasema which was the result of my smoking . With both together, breathing is a labour sometimes for me, but I'm still alive and kicking after all these years, so just go with it, respect it and you will be fine.

  • Hi Nikkers, thanks for your reply!

    I too was a smoker from my younger years (wanted to keep up with my college mates, as you do!) but I've been a life long asthmatic so it probably wasn't a clever idea!

    Gave up two years ago when my breathing started worsening. I've also had a few infections that hospitalised me three times in less than a year between 2012-2013. It took until now though for my gp's, respiratory consultant etc to think of it as something more than 'exarcebation of, or chronic uncontrolled asthma'.

    I have also had obstructive sleep apnoea, for a number of years, so I guess a life time of lung problems was always leading to something more, and Bronchiectasis is it.

    I'm on a lot of stuff - ventolin, seretide, tiotropium, azithromycin, montelukast and of course a cpap machine - so its fairly well controlled, but still the more exercise I do, or more exertion I use, the more breathless I get.

    Just a case of working on limitations now I guess.

    Thanks again :)

  • Thanks Flibberti, I'll certainly try :-)

  • Have a look at BronchiectasisRus website it has all of the info you will need, and lots of friendly members to give advice.

  • Thanks Fern. I've registered on there, just waiting on an admin to approve my membership to the site.

  • Great news, I will look forward to talking to you on there, I have a different name on there but I will make myself known to you.

  • Hi Symes. as you have found out there are plenty of us 'bronchis' out here and we are friendly! most of us who have developed this disease in adulthood have taken an age to get diagnosed. For me it was more than two years of having asthma meds increased, acid reflux meds and post nasal drip meds before I got referred and had the CT scan and a proper diagnosis. I have been very lucky that on azithromycin I have been free of exacerbations for a year. Now on a 'two month break' from the azi to see if I can manage without it. (OK so far!). Good luck with getting on top of this disease!

  • Thanks Monkey. Good luck keeping off the azithromycin, one day hopefully I'll be able to come off it too!

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