Is bronchiaextasis a life threatening problem

I have been diagnosed after suffering from phnumonia years ago.

I don't feel it is being managed properly as recently feeling tight chested Andy mucus has increased and I think I have an infection.

I do keep fit by running and mountain biking.

Help I'm worried, I have two children and I'm all they have in the world 😔

Susan bronchiectasis is a horrible complaint and has some miserable symptoms. I have had it since I was a baby and I am 67 years old. It is not necessarily life limiting. You are right to think it should be properly managed. See your doctor if you are not happy and be sure to clear the mucus off your chest every day.

Don't worry - get help!

Best wishes

I was diagnosed with Bronchiaextasis throughout both lungs as a small child plus constant running nose. I am now 57 and have lived a full life with very little maintenance other than diet...no dairy, wheat and later no sugar. I love my food so always ate loads of the right stuff. I even cut down on 'cloggers' such as oats and white rice. My attitude to life was also very important in that I never thought sick. In every way I live life and expect to be well. I keep my lungs as clean as possible and treat infections with anti-biotics. I always strove to live in peace regadless of circumstances knowing that stress lowers my immune system making me susceptible to infection.This does not have to be a bad diagnosis. With wisdom, information and the right at attitude BE can be well managed. 

i forgot to say AIRWAY CLEARENCE

it is soooooooooooo important. if you do not have a specialist ask for one.

fludder or bubble pep to move the mucas from the "dead zones" in your lungs.

they don't like calling them that, but it's basically what they are. 

find a doctor you ike and understands the condition.

Bronchiectasis used to be very dangerous, but with modern antibis and greater understanding it should just be something to keep controlled.

The important thing is you have to get on top of it, and this may mean educating your GP as well. 

Chest clearance, prompt antibis when you have an exacerbation, lots of cleaning your hands (I've 4 young kids and I swear they are all snotty all the time...), exercise. All these things are good.

But education is your best weapon. Make sure you understand it and that your GP does. Get him to refer you to a specialist who knows the condition. If you are in London then the Royal Brompton hospital is a world class centre for Bx.

I keep mentioning in these pages a booklet by Chest Heart & Stroke Scotland called Living with Bronchiectasis, as I think it's the best introductory booklet that had been produced. It explains the condition and the correct treatment protocols very well.

If your GP still doesn't get it, then we've plenty more ammunition to get you sorted properly - NICE guidelines, BTS guidelines, etc. Finally with people like Stix and cofalot here, I'm sure that this website can help!

It's scary as hell with little ones. No matter what I say, no matter what you do, it won't stop those times when you wake up in the night feeling terrified and helples, and I'm so very sorry for that.

But even when it's yet another infection, when you're tired and exhausted and have no breath, take heart. We can live with Bx. We do live with Bx. And we are all here as well for those times when it all gets too much.

Stay strong, clear lungs

S

Hi everyone,

Thankyou soooo much for taking the time and effort to reply to my post.

i have found your input very helpful and it's really reassuring to know that I cane chat with others with the same issue.

i am on antibiotics now and really do need to get more help from my local hospital as I unfortunately missed my apt and can't get another one for 6 months!!!!!.

i do realise that I really do need to take control of my thing!!.

Many thanks Susie.

Providing some direct input to your direct question the limited research on mortality in bronchiectasis that I could find in a half hour trawl via Google indicates that:

Yes - bronchectasis can reduce your life expectancy

This is the only focussed study that I found is titled "Mortality in bronchiectasis: a long-term study assessing the factors influencing survival" and a summary can be found here:

http://erj.ersjournals.com/content/34/4/843.long

Read it to get the full flavour but here were some of my observations:

- study was of about 90 sufferers

- study started in 1994 and follow up was 12 years later

- study is therefore quite old; knowledge and therapies have presumably improved since (but no new antibiotics in that period I think)

- study group had median age of 52 at start

- 30% of the study group had died "with bronchiectasis" 12 years later but normal mortality would suggest 9% of females and 15% of males would have died anyway

As a recently diagnosed sufferer aged 64 with a 6 year old child (yes I have lived my life in reverse!) I actually found this quite encouraging. I am assuming that the study group would have included people that were significantly less healthy than me otherwise - particularly smokers, over/wrong eaters and the un-exercised and people who were unaware of the current best practices of rigorous antibis/lung physio. But I am also a reasonably moderate sufferer at the start.

If any of this worries you I think you should make sure you get the best consultant you can (buy some advice if you have the money and can't get it free), talke along this study and discuss mortality openly with your consultant.

I am no clinician so I may well be overlooking stuff in that study or jumping to over-optimistic conclusions (the best approach to take IMO). I'm targetting another 20 years of tolerable health.

Comments or pointers to other studies, brickbats and boos - all very much welcomed here by me!