Lobectomy for bronchiectasis

[Immy_6]

Hi,I was wondering if anyone has had a lobectomy for bronchiectasis and were cured or at least felt a lot better?

I had an open lobectomy on 1st September but that was because there was a 5cm mass in my right lower lobe and I had been coughing up blood in my sputum since December 25th 2022. From September 2022 I've had so much treatment (IV and oral antibiotics, x-rays, CT scans, PET scan, EBUS procedure, lung biopsy and then finally surgery).

A full history of my journey is on my profile.

I am currently on colomycin via a nebuliser and was also on azithromycin from June till 1st September and leaving up to my surgery I actually started to cycle again and was back in the gym.

I stopped azithromycin after surgery and it just seems strange that Ive started to feel ill again.

In all that period bronchiectasis was mentioned once to me and that was by a doctor during ward rounds in June when I was in hospital being treated by IV antibiotics. When I asked my consultant I was told it's nothing to worry about and that it's localised in the lower lobe.

I currently have similar symptoms that I had around this time last year.

The histology report actually says that ther is no malignancy and that bronchiectasis was present in the lobe that was taken out.

I'm wondering if I still have bronchiectasis and that it's been missed although the surgeon did tell me that the rest of my lungs are perfect.

I take it if it is bronchiectasis I will never be able to run for my local club again, play football?

Is there anyone out there that still participate's in sport?

Sorry for the long post.

[Hidden]

of course you can participate in sport with bronchiectasis! Exercise is the best thing for you. You need to use as much of your lungs as possible. You listen to your body and pace yourself. As they say that they have taken the worst affected part out it is a matter of avoiding other people’s germs, and emptying your lungs of any fluid which collects there, scrupulously every day. This helps to stop the bugs which cause the exacerbations from breeding. I do suggest that you find a good bronchiectasis specialist as you haven’t been told enough about living with this condition. GPs and general respiratory consultants simply do not know enough about it. A specialist will have their own physiotherapist and they are very supportive. Carry on with your life, enjoy your sport. You should be feeling better now than you have been for some time. I have had extensive bronch since I was 3. Now 73. I have had a very full life incuding sports. It was my heart failing in 2012 that slowed me down, not my bronch.

[Immy_6 in reply to Hidden]

Oh wow you have had bronchiectasis for 70 years, I will be honest with you I thought this is it for me now as in it will be mostly hospital visits, staying at home and not being able to do sports. Your story is the positives I need, because exercise for me is so important especially for my mental health.You are right about not being told enough actually I haven't been told anything about bronchiectasis.

Regarding consultants yeah I have one at the royal papworth (he is a specialist in bronchiectasis and pseudomonas) who is actually going to book me in for a minimum of 2 nights to do tests and be shown how to clear my lungs. I have also been told depending on those tests there is a chance I gould have IV antibiotics for 14 days. I am based in Yorkshire and I also have a local consultant who is a respiratory specialist and I most say he has been amazing and his colleague is a bronchiectasis specialist and that's who he has been liaising with regarding my situation.

I've actually had a setback with the latest infection and although I have finished my antibiotics course my chest is still very wheezy (could be asthma).

[Hidden in reply to Immy_6]

It sounds as though you have the right people looking after you but just haven't come to grips with the bronch and them yet. Self management is 80% of living with bronch and exercise is crucial because it loosens the mucus which you must get out. If you have asthma with bronch it makes it more complex so it is a good idea that you are going in for tests.IV for14 days gives a good clear out and then your consultant may decide to put you on nebulised antibiotics to keep the bugs down. Or they may decide to leave matters to see how it goes and for you to have an emergency pack of 14 days of antibiotics to take if you get an exacerbation. You can find the guidelines for bronch and do be wary of anybody who treats it as copd because it is completely different. Once you get in control it should only be a case of a consultant visit every six months and making the most of your life. Do let us know how you go.

[Immy_6]

I've been on colomycin via a nebuliser since the end of June as pseudomonas was found in my lungs. I also was on azithromycin but since June but stopped after surgery and since then haven't felt right. Some of my symptoms which I had last year at this time are back which is surprising as I've now had surgery and the main infected part has been removed. It's like now ive got a really bad wheez, bringing up phlegm, aches in my legs below my knees (calves). I am also asthmatic and have been some the age of 9. I was suppose to have an appointment with a asthma nurse today but they have rearranged it till 1st of december which I'm not happy about, I actually spoke to her on the 3rd of November and she thought I might need to see a specialist at the asthma clinic.

I've also noticed that in the last 10 days the nebuliser is making my wheezing worse and so is my trimbow inhaler. The only thing that's helping is my blue inhaler.

[Redrum46]

had bronchitis since childhood hoping cough had left part of Lung Yemen away at 13 I’m 77 so I’m Lucky Look after yourself and b careful of virus

[magsclark12]

I’ve had bronchiectasis since I was little, probably birth, now 77. Never been able to run very well but, always was a keen hill walker climbing a lot of Welsh mountains and also in Scotland. Only gave up after my husband died, still do low level walks and longbow archery and lots of gardening. Keep on keeping on.

[Redrum46 in reply to magsclark12]

You are doing marvellous ❤️

[Immy_6]

Oh that's excellent news guys, it's the sort of story's I needed to hear. I'm recovering from from surgery and I've had a massive setback with the last infection (afte surgery) and just can't get rid of the wheezing. Hopefully once that is under control then I can get back to some sort of exercise like I used to.Is there anyone who has had surgery for bronchiectasis? And how long was for recovery?

[Jack70]

Did they give you any Fluroquinolone antibiotics, that could explain the painful legs. Don’t take any there to dangerous.

[Immy_6]

No they haven't given me them, but everytime I have been on IV antibiotics the aching goes away and it's always the back of my legs knee downwards.

[Germantara]

Sorry don't can't give any information but I hope you will get some good experience and advice from the forum take care

[Foxy79]

Hi I'm very sorry to hear about you Immy as life is too short and we have lots of desire please don't give up hope is something too keep us going I have sevre copd bronchitis emphysema odima and psudumosus it's very bad I'm on nublizer bipeb and oxygen with lots of tablet's I use to be in hospital 1 week in every month or two that's how bad it was but by not giving up hope I can run today and go gym I do most of my work day to day all I would like to say copd or even bronchitis isn't that you can't control it I mean I wish you didn't have it but if you did then it's all about maintaining it too feel better on daily basis and I was on colmaycin nublizer my body couldn't take it soo I stopped I was on aztrimayzin that really helps but I think you might need stronger or something on daily basis to help you going or getting stronger again ask you consultant and after all test they can surely say whether you have bronchectis or not I wish you don't but if you do try to maintain it that's the best key to live normal life I wish you a good life and good luck with it please if you want to know anything else let me know and I'm talking from my experience. I'm foxy79

[Immy_6]

Thanks for the advice foxy79. I am now in hospital for the next few days on IV antibiotics and while I am here the doctors have told me that they will be doing tests for almost everything ie CF, asthma, immunoglobin, antibodies etc, so hopefully they can find out what the issue is and I can go on the right treatment. The doctor did mention they will do sweet test for CF and there are wonder drugs available for this illness. I don't kno why he mentioned that ( maybe he thinks thats what I have). How old are you now if you don't mind me asking?

[Stratos20]

I was diagnosed with Bronchiectasis at the age of 5. Doctors said they’d never seen it so bad in one so young. I had a lobectomy (lower 2 lobes of my right lung) and was in hospital for 3 months.

My parents were told I might live to 7 years old. At 7 they said I might make early teens…. I’m 74 next week.

Bronch has not stopped me doing sports or anything else. Lung clearance is the most important thing you can do.

You’ll get lots of good advice here. Keep going. Best wishes, Diane 😊

[Immy_6 in reply to Stratos20]

Oh that's amazing, what an inspiration you are. I'm now in hospital on IV antibiotics and have been told that over the next few days I will be having a few tests starting with a sweat test for cystic fibrosis. I had a feNO test for asthma and have been taken off the trimbow inhaler to fostair, also on steroid tablets. I am hoping they can find the root cause of what the real issue is and hopefully start treatment. The hospital I'm at is The Royal Papworth Cambridge which is about 3 hours drive from where I live.

[Stratos20 in reply to Immy_6]

I’m rooting for you Immy. Keep us updated 😊

[Immy_6 in reply to Stratos20]

Hi Diane,Hope your well.

Unfortunately I'm having issues with wheezing at the moment. I managed to get the bike out a few weeks ago (only for about 10 mins at a time) and everything was looking good.

Last few days I've had really bad wheezing so I've got in touch with the consultant team and waiting for them to get back in touch.

You mentioned lung clearance, what do you mean by that?

I'm using a nebuliser everyday.

[Stratos20 in reply to Immy_6]

Us full blown bronchs make a lot of mucus on our lungs that needs shifting. So we do physio every day to clear the lungs. It’s part of our lives. I do postural drainage twice a day. When I have an infection that can be several times a day. It’s a pain and inconvenient but we accept and just get on with it. Keeps us alive!

If you’ve not been instructed to do lung clearance then your bronch must indeed be mild. You have several other issues you’re coping with. Life isn’t fair Immy but we’re rooting for you to stay as well as you can. Best wishes, Diane 😊

[Immy_6]

Thank you.I am now on a course of IV antibiotics (tobromycin and meropenin) with oral steroids and my asthma inhaler has also been changed from trimbow to fostair.

I still have wheezing. The reason why my inhaler was changed because I did a feNO test (first time) and my reading was 61 which apparently is high. I must say I noticed a difference after a couple of hours of taking the fostair but I have also noticed that everytime I use it the wheezing gets worse and had the same issue with trimbow in the last 6 weeks.

Anyone else had an issue like this with the inhalers? I've been using inhalers for most of my life and never before experienced anything like this.

I am also worried about pseudomonas. I just can't seem to get it down so that I can get back to some sort of normality (surely there has to be a different way than IV antibiotics everyfew months) and is it possible to get rid of it (although from what I've read that's most unlikely).