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has anyone had their bronchiectasis operated on?

12 years ago•17 Replies

Hi all,

first-time poster, longtime-lurker.

I'll get right to it: my bronchiectasis is the result of lack of imunisations and being born in a third world country and migrating to a cold damp council flat in the first world. well i expect so anyway. bronchiectasis happened upon me too young to form any logical or cohesive memories as to its origin. I am however sick to death of it, its like a tiring disgusting house guest that just wont leave. After lots of invasive tests as a child I discovered things like my cilia don't function and my major bronchioles are nasty and malformed. but i've also been told that the bronchiectasis is located in my lower left lobe only. so i'm confused, is it focal or not? in answering this question i can at least consider whether its operable or not. apparently that's not the done thing anymore due to it coming back, but im sick of sounding like an aerosol can when i lie down or wheezing during love-making or other such embarassing and pathetic things. i'm 24, i should be oozing with the joys of youth and instead i'm this cantankerous bla with a 'nasty cough' thank you for pointing it out. so.. rant over, if anyone has managed to lift the questions out of the rant i'd be grateful to chew the fat with youse.

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youngWeezy

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Bronchiectasis

17 Replies

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jayb12 years ago

Hi..Im a first time poster today too...Im not able to offer any great advice..but think youre in the rite place..somebody will help.xx

12 years ago

What about ringing the BLF helpline - they might be able to answer some of your questions. Good Luck. TAD xx

youngWeezy12 years ago

bless thanks. this is the first time i've done something like this, usually i grumble to myself.

SusieQs12 years ago

Sorry I can`t help you with this but if you type bronchiectasis in the search bar on the right hand side at the top of the page, you will see other questions and answers that other members have asked on this condition.

youngWeezy• in reply toSusieQs12 years ago

Hey Susie,

That was one of the first things I did hehe ^_^ thanks though

12 years ago

Hi youngWeezy

I'm so sorry that I can't help you, but there will be others who do have your condition on this site.

Do ring the helpline they will advise you.

Sorry that you came to a damp cold flat, hope you not still living in that condition !!!!! not good for your chest.

Take care

Peta

youngWeezy• in reply to12 years ago

Hiya, cheers. I'm not the helpline type i fear, I want pragmatic and practical talk about this. I feel pretty well supported by friends family partner etc. Short of stabbing myself with a straw and doing my own version of keyhole surgery i'm at a loss *_* but I will ring the BLF helpline... I've mostly been reading medical publications, i'd be intrigued to find more- I'll link the couple that i've read here when I get hold of the DOIs but that's pretty much my mindset right now. I've lived through the whole everyone thinking i'm pregnant or bulimic (i cough up the crap in my lungs every morning - this doesn't go unnoticed by housemates haha) and i've had the whole 'can't move, obese' thing that being bedridden and pumped full of IV antibiotics and steroids does. Right now I want to hear of experiences from other similar and read a buttload of research papers on my condition.

• in reply toyoungWeezy12 years ago

Phone no.03000030555. It is worth doing as they are so friendly. Point out your blog and they can read it. I have bronch myself but not as bad and i am much older than you wheezy, but anxious to help you get as much out of life as you can. Love annieseed xx

Toci• in reply toyoungWeezy12 years ago

Youngweezy, please feel reassured. Ring the number - they are not the helpline types either! 03000 030 555

zube-UK12 years ago

Hi there, yes I had my bronch operated on 40yrs ago, lower left lobe removed, it was very successful. They did it because the lung was very damaged from not being taught to "drain my lungs effectively, I know how to do this now... bit late !

youngWeezy• in reply tozube-UK12 years ago

Hiya Su,

does that mean you're still coughing up phlegm? x

zube-UK• in reply toyoungWeezy12 years ago

hiyagain,

sorry for delayed reply, hubby very unwell.

Yes and no to coughing up the gunk.. I have a fairly successful method of clearing it each day, depends how I am at the time.

I was 23 when they removed the lobe, and did not cough too much during that year but I had damage in my right lung also so this was always troublesome, must do 2 sessions (3 if I am infected) of using an acapella or lung flute mucus clearing device, or/and "postural drainage" each day lasting up to an hour or more but can just be 20mins sometimes.

After that, my breathing is clear for hours, all day on a good day, I'm 64. I keep my weight down to 8st 13, if it creeps up I start coughing and struggling more.

You are lucky that for you Weezy it is confined to one lobe so I'm sure they can help you a lot more now, there are many ways to control it and like the others say, would be good to phone the helpline no that annie gave.

su x

Noan• in reply tozube-UK7 years ago

Hi Zube. Hope you are doing well. I did a lobectomy in january 2016 and from that time i have not had need for medicine. Sometimes i have had some cough but it has gone with the time. I cough may be once or twice a day usually,or sometimes have no cough,but there are some other nights that i have some cough foe lets say half an hour. Before of lobectomy i had some episodes with coughing blood and a lot of phlegm,while after lobectomy i have not phlegm anymore. I am really scared from the cough,and i want to know how does bronchiectasis cames back after lobectomy. Is it possible to have that while for 2 years and a half i have not needed medicine?

Wish you all the best.

Noan

cofdrop-UK12 years ago

Hiya youngWeezy

Pretty much like my good friend Zube, although have always done physio. Had bronchiectasis since babyhood and had a lobectomy in 1963 aged 15. I don't think they would have done it my case these days as my bronch is scattered and was then in both lungs, but then I have no way of know if things would have been different if they had not taken out the worst effected bit of lung. Surgery then was a big deal and I believe these days it is done keyhole and recovery time is much quicker. There is someone on bronchiectasis r us who has had a lobectomy recently and I was pleasantly surprised how quickly she recovered. It can be done for localised bronchiectasis, but I'm not sure it is as straight forward as that and I am sure many other factors are taken in consideration. What has your respiratory consultant had to say re surgery? I would have thought only he/she would be the person who can explain how if surgery would benefit you as they are the ones with all the test results and details of your bronchiectasis.

You mention a 'nasty cough' - just wondered if you have been taught lung clearance physio.

It is very rough when you are so young. I can remember if the choice is physio or going out on a hot date or a party or gig - well at 24 it's no contest. I have to say though the rest of the time I did do physio.

Hope you get the answers you are looking for youngWeezy.

Loe cx

youngWeezy• in reply tocofdrop-UK12 years ago

As it goes today was my appt with bronchiectasis consultant. So its not completely localised to lower left lobe, which is a shame. he advised against surgery, my spirometer was good (84%) and i've had one infection in 7mnths. I did a lot more phisio when i was younger and it was worse. i know that in comparison with other brinchiectasis sufferers im doing pretty well, but its the social aspect of coughing up shite throughout the day. i'm not disheartened after today's consult though, i feel like i can draw a line under this surgery chasing.. but its a bit upsetting to know that it's spread, regardless of how fit and healthy i am.

youngWeezy12 years ago

thanks for all the advice people! i shall ring the BLF number and take note of the recommendations provided xxx

Tamara7012 years ago

Hi Young Wheezy

I am sure a lot of people on this site have heard all about me and my two lobectomies.

So here I go again. I got Bronchiectasis at age 10 from the measles. I remember at the time

I was coughing up bucketfuls of sputum. Anyway, at age 12 I had two lobectomies, one left and one right. I led a very active life, skiing and hill walking until five years ago when I was 65. I was asymptotic until age 65 which was five years ago, but the Bronchiectasis came back with a bang then and I have been in and out of hospital during the last five years.

So I was clear, no cough, no sickness for 53 years which I think is a great recommendation for surgery on the lungs.

Hope this helps. Good luck with whatever you decide.

Tamara