I was wondering if anyone has had surgery for Bronchiectasis, I read that if it isn't to severe you can have the affected area removed, when I was first diagnosed it was said I had Bronchiectasis in a lower lobe of my left lung which was mild, but I can honestly say it certainly doesn't feel mild when I get an exacerbation. I have just spoken to my GP and asked him about it, and he said they don't operate on it anymore, unless their is so much gunk you can't physically cough it up yourself.
I would love to hear your thoughts on this. Many thanks in advance.
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TG58
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Without going into a long and tortuous explanation of how my mother saved my life by refusing to have this surgery done when I was three in 1953.
Despite living with extensive bronch all of my life, I seem now to be doing better than my peers who benefitted originally from having it done. They seem now, years on, to have more breathlessness due to the tissue through which oxygen is transferred being taken away, worse and more frequent exacerbations and further patches of bronch which develop anyway..
I'm not sure I was actually going to ask for it, I was more curious to see if it really did benefit anyone, I did think having a piece of your lung removed can't be much good, I had an uncle who had one of his lungs removed, I don't know why I was very young at the time and never asked, in those days children were seen and not heard, lol, but I know he died in his early sixties. I guess thats why my GP said it's rarely done because of complications
I think at nearly 62 the least invasive thing I can have done the better, I had a hernia op back in 2018 and that was bad enough, I honestly think since I have had it done I haven't really been right, I guess as you get older invasive surgery is not good unless it is absolutely necessary.
It seems to come in and out of fashion with surgeons but most bronch specialists seem to be against it now that we know more about how and why the condition develops. At least I have the tissue to exchange oxygen ( which is always 97-99) although it is horribly floppy and damaged and I live with having to get rid of copious gunk. I have never known any different so just get on with it.
I think that you would be wise to concentrate on managing your condition, scrupulous lung clearance ( I know, boring) being the most important.
Make sure that you have a good bronch specialist for when problems might arise as GPs know very little about it and general respiratory consultants very little more. They just aren’t trained or experienced enough in it.
I was diagnosed with Bronchiectasis just 2 years ago after suffering with Emphysema for the past 40 years, and after a year had gone by it was suggested that I go in as a day patient to have my lung washed out as it was put to me under sedation. I duly went in for the procedure but then they decided that due to my oxygen levels it was to risky and I was sent home again with nothing done after all.
I think you had a lucky miss. This is another controversial procedure for managing bronch which my specialist unit of 35 years really don’t like for several reasons. It would be a good idea if you set about learning as much about your condition as possible and how to get the mucus out of your lungs on a daily basis. There are several different methods, devices and medications to help. As mucus builds up in the lungs all of the time with bronchiectasis it will simply keep happening even after having the lungs washed out so daily self management really is essential. Good luck. You haven’t been diagnosedvery long and there are quite a few of us long timers on here who will be happy to support you.
Thank you, sounds as if I had a lucky escape by them changing their minds. I have on several occasions tried the huffing to bring up any phlegm but I have yet to have any luck with it and just get rid of anything I can with normal coughing. It certainly at the moment does not bother me much at all.
The huffing is the last stage of the breathing tecnique to bring up the mucus and can be difficult to master without other help. You can ask your GP for carbocysteine which thins the mucus. Lots of people benefit from it but I can’t tolerate it. I nebulise isotonic saline and others nebulise the stronger hypertonic saline and there are several devices which you blow into and they cause a vibration in the chest which loosens the mucus. They are called acapella devices and your GP can get one for you.
The saline needs to be prescribed by the consultant. It is so important that you have a consultant who is a bronch specialist. GPs know nothing about bronch because they are only trained in copd which is very different. General respiratory consultants know very little more. Their training in it is dire and they don’t have enough experience. A bronch specialist will have their own physio who will help you. Do check that the consultant whom you have seen is a bronch specialist. If not, find one near to you. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral. My main relationship is with my consultant and her secretary and my GP is very cooperative with her instructions.
With bronch we have to be very proactive in our own interest and vociferous in sourcing the right treatment.
If you are not bothered by mucus it begs the question - why were they considering putting you through a nasty procedure for nothing. It may be that you have mucus that is just sitting down there, being a tempting breeding ground for bacteria, they saw it on an xray and it needs to come out. This can happen when the lungs aren’t cleared thoroughly. We feel nothing then suddenly we are in deep trouble with an exacerbation.
Yes TG I had a lobectomy aged 15, even though my BE was diffuse. It appears to have been ‘flavour of the month’ at that time.
Well I’m still here, so I don’t think a decision from my Mum not to have it done would have saved my life! In fact I cannot say if my BE o ver the years would have been better, worse or no different. What I do know is on CT any thickening is on the opposite side. Of course many of my problems are due to also having asthma and intolerances to medication and not for the lack of care and lung clearance.
They would not do the surgery generally now if BE was diffuse but I wouldn’t have thought your GP was the best person to advise you in any event. You might want to discuss the pros and cons with your consultant, as they are the ones with knowledge of your lungs.
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