Operation for bronchectasis??

[Carkaisabellacolin]

Hi all

I wanted to ask some advice . I have been battling with infection after infection. Taking loads of antibiotics plus intravenous dosage.

I know that I have the dreaded psuedoma bacteria. Stubborn not wanting to go away.

My Dr has now suggested a bronchoscopy and mentioned surgery to move the left side damaged part of the lung. As the bronchectasis is clustered together this side would be worth considering my right lung is too spaced out .

I was wondering if after surgery people felt better and saw an improvement or if it came with complications.

It's a bit overwhelming but the last two years my quality of life has really been reduced. As much as i try to keep fit eat healthy. Work and look after my family.i am exhausted all the time and struggle to sleep without coughing and feeling like I am battered and bruised. I really try to stay positive and not to feel sorry for myself as i know that there are so many others worse than ?

I just wanted to hear what you think ? 😊

[Hidden]

I really wouldn't. If you have diffuse patches of bronch in the other lung, chopping out lung tissue in one lung is not going to help. You will still have the bronchiectasis but less lung tissue to exchange gases through.

My Mother saved my life when I was 3,64 years ago by defying the doctors and refusing to let them operate. The treatment and daily management regime that you have had so far seems inadequate. Bronch is complex and needs the correct antibiotics, right dosages and delivery systems. For this you need a bronchiectasis specialist. GPs and general respiratory specialists don't know enough about it. Check whether your Dr is a bronch specialist and if not I suggest that you set about finding one.

[Carkaisabellacolin in reply to Hidden]

Hi

Thanks for answering my Dr is a specialist. I am living in Cyprus and so access to a specialist us easier but the surgery I was not 100% for as i wasn't really sure it would change things. Do you think I should seek a second opinion

Or try and see a bronchi dr in UK I am from the Birmingham area so I could try and get appointment

[Hidden in reply to Carkaisabellacolin]

I will pm you.

[GintyFerguson]

Being stressed and exhausted wont help at all. In fact will make you worse. You need a relaxed pace of life, good food, plenty fluid and exercise. I was like you once and stopped work . Never felt better. However, we are all different but try to do what you can to modify lifestyle?

[Carkaisabellacolin in reply to GintyFerguson]

Thanks I have reduced my work load as i am a teacher I work ling hours and speak a lot. Juggling this and family life is posing difficult now.

But I will need to make changes to improve things.

Thanks

[GintyFerguson in reply to Carkaisabellacolin]

Sounds like where I was with a demanding job and family . Your health comes first.....medical retirement? Redeployment to something less demanding?

[Carkaisabellacolin in reply to GintyFerguson]

I have started to reconsider my job situation. Family I will trying to get them to help more.

My problem has always been I never look ill so it's deceiving. I have always insisted on smiling even when thing's are really bad.

So my family don't actually realise just how hard things are for me.

[GintyFerguson in reply to Carkaisabellacolin]

Ditto....and friends dont either. Time to be real and get the support u need. I found taking supplements helped a lot. Vit D, E C, Zinc and fish oil.

[Carkaisabellacolin in reply to GintyFerguson]

I take all my vitamin supplements I have done for about 3-4 years now.

😊

[Damon1864 Volunteer]

Good luck with whatever you decide, I'm sure you will feel much better. Have a good day and take care of yourself 😊 Bernadette xx

[Carkaisabellacolin in reply to Damon1864]

Thank you very much

[cofdrop-UK]

It seems unusual to me that in this day and age you specialist has gone from treatment with oral and IV antibiotics straight to considering surgery. There are other things to try i.e. nebulised antibiotics, prophylactic antibiotics and I would hope they have taught you and you do lung clearance on a daily basis.

Not sure what you mean by your right lung being too spaced out! If you mean you have bronchiectasis in both lungs, then I would say it is unusual to consider resection, which is generally used if the bronch is localised and/or there is something sinister in a particuar area.

I have had BE since babyhood and am now 71. At the age of 15 my paediatrician (who I loved as a kid) referred me to a surgeon. My BE was diffuse and in those days it was ‘flavour of the month’ to resect the worst bits of lung. Along with many long term bronchs I had a left lower basal section. They considered parts of the right side later but decided too much good lung would be removed and no further surgery was done.

Now I can’t say whether I would have been better or worse without this surgery but it did not kill me, so the decision not to go ahead would not have saved my life. I may just have had a much heavier sputum load to deal with and may have been colonised with pseudo much earlier, who knows.

In those days it was a big deal operation and a long period was spent in hospital both before and after. I know of a few people who have had this surgery in more recent times, but for localised problems only, where it has been done laperscopically. Still a big deal but better than it used to be.

I would most definitely get a second opinion, without a doubt. I see you are interested in Birmingham and Littlepom will be able to point you in the right direction.

Good luck and please let us know how you get on.

With love

Cx

[Carkaisabellacolin in reply to cofdrop-UK]

Thank you very much for sharing .

My left lung is more localised and is very bad my right lung has if as well but not localised. I have physio every two weeks and use a clearance device. My condition with BE is further complicated because i have to take anticoagulants everyday for life as i suffer from pulmanory embolisms.

I am seeing the other consultant tomorrow so will see what comes of that . 😊

[cofdrop-UK in reply to Carkaisabellacolin]

Glad you are seeing a different consultant and hope you will let us know how you get on. Most folks with BE do lung clearance once or twice a day. I do it twice but sometimes do active cycle of breathing when I feel congested. I can’t get away with not doing it.

As your bronch is diffuse I would take your time and ask loads of questions before you make a decision.

Good luck and please keep in touch with us.

Love cx

[Carkaisabellacolin in reply to cofdrop-UK]

I will do

Many thanks again for all the support.

X

[M67W77]

I started off on 40mg prednisolone for 1 week. Was then on a reducing dose and am now taking 3mg daily and have done this for months. Feel much better and cough vastly improved. I have bronchial asthma and bronchiectasis.