Bronchiectasis

[begrant79]

Hi everybody

I've just been diagnosed with this and wondered if anybody has any hints or tips or what meds they're on

[Pentreath Volunteer]

Hi Begrant - welcome to the friendly site. I have. FostairNEXThaler to take morning and before bed and Bricanyl to use as and when needed. Also have rescue pack of antibiotics and steroids.

As for what to do, keep active, eat sensibly, drink plenty of water, don't smoke, avoid people with colds, avoid strong scents and ask for a place on a pulmonary rehabilitation course. Most important to keep your lungs clear, lots of good methods on YouTube but ideally be referred to see a respiratory physiotherapist.

Sounds like a lot but worth it to keep as fit as you can.

Bronchiectasis (took me ages to remember how to pronounce it!) is a bit of a Cinderella condition but more is happening now in research. There was a very good BLF presentation on this site very recently that could be worth looking at.

Good luck in managing bronch and I am sure others will along to add their ideas.

[begrant79 in reply to Pentreath]

Thanks for the reply I am being referred in June so will find out some more info.

That info could be good ammunition for me.

Many thanks again

[Ennyl]

I am sorry I can't help you but am sure lots of people on this site can and will do! But I can say welcome you have joined a lovely family of friends here x

[Hidden]

Welcome begrant. I was diagnosed over 20 years ago but it's now thought I've probably had it since early childhood. Unfortunately it is often mis-diagnosed. I presume you've seen a consultant and had a CT scan (essential for diagnosis), so am puzzled why you are having to wait until June for a referral? If the referral is to a consultant specialising in bronchiectasis, that's great, and I do hope so.

There are lots of links to helpful websites on this thread by our member Cofdrop healthunlocked.com/blf/post... but I think the best link for you to start at is this leaflet which Cofdrop mentions, it tells you most of what you need to know at the outset chss.org.uk/documents/2013/...

Most of us are on many drugs but it all depends on your particular form of bronchiectasis & whether you have other lung problems too. You should have a drug regime which is tailored to you.

Have you been referred to a chest physiotherapist? If your cough is productive, which it invariably is, you should be doing daily physio.

I don't want to load you with too much information but please please, if you have any specific questions do ask and between us we will all try to help!

[begrant79 in reply to Hidden]

How do you know what type of Bronchiectasis

you have?

[cofdrop-UK]

Hi begrant and a very warm welcome to you.

Good advice from your new friends on here. Was it your GP who arranged a CT scan - I don't quite get that you haven't seen a resp consultant yet but have a diagnosis.

Try and check out your consultant has a special interest in cf/bronchiectasis - believe me it makes a difference.

Learn all you can in the meantime and when you have your consultation you might want to have a list of questions. I would put them in bullet points or you might get a bit lost and your con should cover a lot of them before you even ask.

Please make sure con refers you to a respiratory physio so you can learn the best method of mucus clearance which suits you and then you will have to continue to do it yourself on a regular basis.

As Hanne says ask away - there will usually be someone around to either answer or point you in the right direction.

love cx

[begrant79 in reply to cofdrop-UK]

Yes the Gp she also organised the scan and now she has referred me

[cofdrop-UK]

Great to hear you have a very proactive GP - they are not always as on the ball as that.

love cx

[Shirleyj]

I have bronchiectasis, I am on permanent antibiotics, spiriva, seritide and ventolin inhalers and a few other meds. Best advice I can give you is keep your lungs clear, and keep moving, walking, swimming, whatever floats your boat, I can't emphasize enough how important it is, it will strengthen your lungs and help to bring the mucus up off your lungs. Take care Shirley x

[begrant79 in reply to Shirleyj]

Thanks Shirley for the advice, when we're you diagnosed because I had a bad chest since I was 8 and had a collapsed but both my parents didn't know what caused it!!

[begrant79 in reply to begrant79]

Sorry I omitted lung

[Shirleyj in reply to begrant79]

I've had asthma since I was a teenager, my asthma was not well managed, I had pneumonia about 4 yeArs ago, lots of tests were done, scan etc and was then diagnosed with bronchiectasis. Due to constant chest infections, was put on permanent antibiotics, it's the best thing that happened, hope it all works out for you. Take care x Shirley

[bayleyray-uk]

Hi Begrant78,

Welcome to the site I have Bronchiectasis/COP/Asthma, have asthma since 6 years old and probably the Bronc. came along shortly after though the Bronc. was not diagnosed until my early 60's, COPD came along in the last 2 years. I go along with all the other reply's you have had. Keep as fit as you can, eat healthily and keep your lungs clear, avoid people with colds etc, keep to your own set of bath towels, face flannel etc and wash your hands and use hand sanitizer like it's going out of fashion. I upset my family and friends by taking my own mug with me when I visited anybody and I have my own mugs at home.

Silly little things like using hand sanitizer after you have left public toilets because the handles on the doors may be mucky, or when you get off of public transport or opening doors.

I hope you keep well.

Cheers

Sue

[Maximonkey]

Hi Begrant, I too have bronch and I take Azithromycin 3 times a week. I have been well for 15 months now and I am preparing to come off the Azithromycin (when the weather improves) to see if my body can cope and keep me free from infection on its own. I use three inhalers, some for asthma and one for the bronch and all is good. Good luck and Take care. Maximonkey