lobectomy - any words of advice?

[Jomorphey]

I am 43 and a non smoker but have been diagnosed with a congenial lung defect (intralobular sequestration). I ave had a very healthy life so far with no coughs, colds, asthma etc. The concept of a lobectomy is a little terrifying but the surgeons think it is the best way forwards. I am trying to be think positively (they can become malignant in time) but have read such awful reviews of the recovery process. I am doing everything I can to get myself to the operation (2 weeks) in the best shape. Has anyone got any words of wisdom? I would like to return to my job as a teacher sometime soon (ish). Xxx

[cofdrop-UK]

Hi and a very warm welcome to you. I had a lobectomy in 1963 when I was 15, although not for the same condition as yours.

I am happy to say that surgery for lobectomy has moved on incredibly since then. I am always pleasantly surprised when I hear they are done mostly laprascopically these days and the time spent in hospital is much shorter, as is recovery.

It is natural to find the prospect of surgery ‘a little terrifying’, but on the positive side you will have the peace of mind that the problem of possible malignancy further down the line will be eradicated and you can get on with living a good life.

Not sure where you have read these reviews, so I can’t comment on the source but best to stick to reputable sites such as this one.

You need to be fit to be a teacher for sure and I wish you all the best. Please let us know how you get on.

Love cx

[Jomorphey in reply to cofdrop-UK]

Thank you for your kind words! Not able to do it as a laparoscopy unfortunately as too large a sequestration! So facing full thoracic surgery. Obviously never noticed I only have 85 percent lung fuction. On a very positive note, I have a wonderful surgeon who I have every faith in. Just very much hoping that I will be able to live an active, painfree life going forwards. You are totally right about the possible malignancy risk in the future so I am clinging to that! Do you mind me asking why you had a lobectomy at such a young age? Xx

[cofdrop-UK in reply to Jomorphey]

It’s a shame Jomorphey that it can’t be done laparoscopically but the wise post from judg69, who has had open surgery relatively recently is full of positivity.

It is great too that you have a wonderful surgeon who sounds very proactive and supportive.

I don’t mind you asking at all. I have had bronchiectasis from the age of 5 months old, following double pneumonia and whooping cough, at the start of the NHS. When I was 15 it was decided, as it so frequently was in those days, that if would be beneficial to lob out the worst affected parts, even when the bronchiectasis was diffuse, as mine was and is. It is something they don’t do now in broncheictasis unless it is very localised. I have no way of knowing if I would have been worse, better or the same had I not had the surgery and to be honest it’s not something I generally think about. So much so that when I was first examined by my present consultant he asked me if there was something I hadn’t told him. I thought no, I had given a good history. He said something it is very important for me to know. Then the penny dropped. Oooops!

So very different to the reason you are having it and, as with lap, open surgery has also vastly improved from those days.

Wishing you well and please post if you need any support leading up to surgery and beyond. Any up to date info judg has already kindly offered advice.

Love cx

[judg69]

JoMo, Be happy you are getting it done so that you can stop focusing on it . Best advice, get up and about as soon as possible, and diligently and correctly do your breathing exercises. I had a full thoracic lobectomy 6 years ago, and I am still here, well mostly anyways. As a related note, please really do the breathing exercises as the remaining lobe(s) will somewhat grow to fill the void from the missing lobe. Best Wishes and let me know if any questions, judg69

[Jomorphey in reply to judg69]

Yes, I certainly intend too! Bought myself a puppy so that I absolutely have to get up and about as soon as humanly possible! This is going to be a tough month on count down.... Thanks for the advice xxx

[sukee52]

I hope the replies will help assuage your concerns. I had a lobectomy aged 18 in 1970. It helped me enormously and although my copd is still with me, I am able to live a normal life.(at a slower pace than some, but well enough) I had a physical job, was back at work four weeks after the operation, and my health improved immediately. I hope all goes well for you.

[jackdup]

Good luck and I hope all goes well and you have a speedy and uneventful recovery and give your puppy a pat on the head for me .

[ChaOliver]

I had one 20 years ago. Painful for about a year, but now fine and has been for the 20 years. I returned to teaching in about a month. Hope you can do the same.

[Dedalus]

I had lower left lobe lobectomy 8 years ago. Had no problems at all with/post-surgery. Was very breathless but did my exercises/daily walks religiously and within a month was nearly back to 'normal'. I had cancer, so there really wasn't a choice but was was home and recuperating after 5-6 days max (my memory is crap). Good luck x