Lobectomy

[Carkaisabellacolin]

Good morning

I wanted to ask any of you who have had this procedure and how you feel after it.

I have managed to meet with a thorasic surgeon and bronchectasis specialist.

And we looked over my ct scans and evaluated my situation.

Actually i am i hospital right now writing this was very ill inflammation infection in the lungs and couldnt breath so have been in for 4 days on oxygen intravenous etc.

They have suggested surgery as its my left lung damaged and the area is bad. They have explained the pros and less cons. They believe it will really improve my quality of life as the last 2 years i have deteriorated and i am only 43years old .

Just wanted to see how others have coped after this procedure.

Thanks

Simone

[HungryHufflepuff]

I'm sorry to know you're in the hospital now. I can't answer your question but just wanted to send you lots of good wishes 🌈 Hoping you start to feel better soon.

[Carkaisabellacolin in reply to HungryHufflepuff]

Thank you very much😊

[Hidden]

Hello Simone, Your question is a very difficult one to answer. I have looked through your previous posts and there seems no doubt that your bronch is not managed well or that something else is going on. Have you had a dna test for cystic fibrosis? It may be worth discounting it because with new genes being discovered all the time, quite a few non cystic fibrosis bronchiectasis patients have found that they actually have cf. This, of course, needs its own speciality.

Lobectomy is an old fashioned procedure for treating bronch. It used to be thought that it got rid of the affected part of the lungs and with it the problem. However, by the nature of how bronch develops, it became apparent that other parts of the lungs became affected once the bad part had gone.

I have extensive bronch in both lungs. Diagnosed at three. I am now 70 and with self management and excellent bronchiectasis specialists have led a very full life and continue to do so. My mother refused a lobectomy when I was three. When I was six we met a radical specialist who said that for me her refusal was the best thing because it retained the lung tissue through which oxygen exchanges and with a combination of antibiotics, intensive physiotherapy training and exercise he gave me a life.

My later bronchiectasis specialists have all been very much against lobectomy.

There are others with bronch on this site who have had lobectomies at various points in their lives and they would have to tell you whether they consider that in the long run it made any difference to the outcome.

I could say a lot more on this but I won’t. Except to say think very hard before you submit to it.

[zube-UK in reply to Hidden]

Hi Pom, I think your mother did so well to refuse a lobectomy for you at the very young age of 3, and to search, as she must have done for an exceptionally good, radical bronchiectasis specialist.

My placid, lovely mom unfortunately died of leukaemia early on, it may be that if I had been trained to do the intensive lung clearing physiotherapy from an early age, then my lungs would not have needed the lobectamy later, I really don't know and it's an interesting question. I believe cofdrop did have physio earlier, she definitely had more medical help than me but on the other hand she suffers more infections. I use Ayurvedic methods as well as sometimes much needed antibiotics to try,.. try and keep this annoying condition in check.

[Hidden in reply to zube-UK]

I’m sure that your experience will be very useful to C in helping her to make her decision. Cof drop was 13 I think when she had her op and I think that it did help for some years. Only she could say.

We all know what a complex condition it is and how particular to each individual. Evolving management and drugs are useful but it is still a b....r to live with the never ending grind of peaks and troughs and only fellow bronchs can understand just how difficult that is. It is no wonder that we can be drawn to look for any solution, especially when we are going through a bad patch.

I do feel that complementary methods used alongside the medical ones benefit us enormously, both physically and with our mental well being.

I’m sorry that you have been struggling lately. 🤞🏻I have been very well with my chest during this pandemic, probably because I haven’t been near any people to catch their bugs and have had lots of time to nebulise isotonic saline and spend loads of time exercising and emptying my lungs.

The rest of my body is dropping to bits 🤣

I hope that you come out of this particular trough soon. I am thinking about you.xx

[zube-UK in reply to Hidden]

Thank you so much Pom, your knowledge has helped me and many others here. Can't believe any part of you is 'dropping to bits' , wow, I caught a glimpse of your photo while skimming back on posts, you are in great shape, mischievous grin on a beautiful face, golden curls and I just love that hat! 🌟

[Hidden in reply to zube-UK]

It's little Twinkle and the lovely folks on here who keep me going. Especially over this last year. xx

[Alberta56]

Best wishes. I hope you get some more replies to help you make an informed decision. Perhaps the BLF helpline could help.

[zube-UK]

Hi Simone, I had a lower left lung lobectomy age 22 and it helped me a lot.

I was born with bronchiectasis and was constantly unwell with chest infections and pneumonia.

After the half lung was removed, I enjoyed several years of much better quality life and I think it was the right decision for me because no amount of lung clearing or antibiotics helped before the lobectomy.

Now, 50 years later I still do lung clearing physio every day and avoid catching 'bugs'. Healthy eating and excersize helps very much.

For the last 2 months I have been very unwell alone at home with something which could have been covid, my GP and bronch consultants have been a great help and I'm slowly getting better.. so far

So sorry you are in hospital there Simone, trying to make this difficult decision, ask us more questions till you feel comfortable with how you feel about it., best wishes, Su

[Snackjack]

Yes I had a lobectomy in March 2017 at Papworth Hospital, I have to admit I was terrified but was OK afterwards and wondered what I had been so scared of, after all I was going to have a better quality of life. Best to get all the info you can so that you can make an informed decision on what is best for you. I wish you all the best on whatever you decide to do.

Lots of Hugs

[Carkaisabellacolin in reply to Snackjack]

How did you feel after the operation?

How long was for recovery?

How are you feeling now?

[Snackjack in reply to Carkaisabellacolin]

I felt very relieved that I made it through the operation, was given pain killers for the pain but that didn't last to long. Was unsteady on my feet so they had me walking a little at first and gradual increase each day. When I was discharged after about 10 days I went to stay with a friend to convaless for a couple of weeks until I felt I could cope on my own. Wasn't allowed to drive for 6 weeks but that was OK as I didn't want to. I now feel OK just get a bit breathless if I try to rush about or climb stairs (luckily I live in a bungalow) or walk uphill so when I used to go out and about I would avoid stairs and take the lift if there was one and try to find a route around having to walk up hills. I have learnt my limitations and live life accordingly I do also have Ischaemic Heart Disease which is partly to blame for my breathlessness but I keep reminding myself that there are people with more disabilities than me.

We are all different I know but for me I felt I had to take the chance that things would get better. I was pleased I had taken the risk. You are a lot younger than me I was 68 when I had the operation. It is a huge decision to make. Just get as much info as you can so that you can make an informed decision that you feel is best for you.

I do feel for you as I know it is not an easy decision. I really do wish you well and will continue to think of you and what you are going through.

Sending you lots of best wishes and lots of hugs to try to comfort you. If you don't mind I will follow your posts to see how you are getting on.

Sue xx

[Carkaisabellacolin in reply to Snackjack]

Thank you Sue

Its not a decision you jump into but for quality of life i need to consider it.

Its good to hear that you feel better and it seems that it may of helped you to cope better with your heart condition.

I think its the same for me to try and live with my other conditions this could ease it.

I will keep you updated.

Take care no running any marathons 😉

X x x

Simone

[Snackjack in reply to Carkaisabellacolin]

I never did marathons but I did used to do long walks which I can't do any more so I just do short ones, just have to try to find alternatives. An old saying "keep your pecker up". Remember we are wishing you well. I wish I had known about this site when I was going through it as I did spend to much time on my own dwelling on things with no one to talk to. You are still young lots of life to live yet. Take good care of yourself.

Sue xx

[Carkaisabellacolin in reply to Snackjack]

Will do 😊

Sue its great having people who understand.

X x

[Carkaisabellacolin in reply to Snackjack]

Thank you for sharing 😘