Newly diagnosed bullous emphysema & COPD

[Bluenose55]

Hi all, newbie here who would like to share my recent diagnosis & hopefully meet some people who understand my condition.

After repeated chest infections I eventually got a gp to agree to put me for a chest X-ray (apparently we don’t know our own bodies well enough to know something isn’t right!?)

I got my X-ray locally & the radiologist sent me straight to A&E as she suspected I had a pneumothorax, thankfully a&e didn’t immediately do a chest drain & put me for a ct scan, which revealed I had a giant Bulla measuring approx 21cm in length and taking up approx 90% capacity of my right lung! One doctor I have since spoken to said it is the largest bulla he has came across and would put money on it being the largest the respiratory consultants have personally came across as well, which concerned me slightly! Has anyone came across / personally had a giant bullae of this size?

The funny thing about it is that I don’t feel out of breath, I’m only 39 & would class myself as reasonably fit, I have a very active job, play football etc with the kids, walk the dog every day and during the warmer months I play golf at least twice a week, my blood pressure & heart rate have always been on the low side & sats are currently between 97&99%... perhaps my functioning lung has just learned to cope or this has possibly came on/rapidly detiorated as a result of my most recent chest infection? (I could hardly even put my socks on during the worst of it)

I’m going for spiro at the gp’s next week with a gp follow up in a fortnight, then I have full lung function tests at the clinic with consultant follow up mid Feb, which then will hopefully determine a course of action going forward.

Wow I didn’t realise how much I actually wrote-apologies, there’s something quite therapeutic about having a brain dump on a forum where people going through the same thing as me can hopefully help, advise & reassure me!

[robert1957]

hello bluenose55 can I ask you do you have a calcium rich diet

[Bluenose55 in reply to robert1957]

Hi Robert, I wouldn’t say I have an overly calcium rich diet, I would say it’s fairly balanced with a good daily mix of things that are good for you with some that possibly aren’t!

[judg69]

Hi Bluenose, your right lung is comprised of 3 distinct lobes. Check with your Dr's , but I suspect that the huge bulla comprises 90% of 1 of the 3 lobes, with the others having fewer and smaller, if any, bullae. I had a large bulla 'black hole' in my top right lung lobe. I also had IIIA/B lung cancer throughout that lobe . They surgically removed the complete lobe. In my case anyway, it allowed the remaining 2 right lobes to expand slightly. My breathing thus essentially stayed about the same as it was pre-operation. Ask your Dr's what your treatment options are and go from there. Keep your attitude positive just as you are doing. All Best Wishes, judg69

[Bluenose55 in reply to judg69]

Hi Judg69, thanks a lot for your reply. I’m aware of the makeup of the right lung as the last 3weeks have been a very steep learning curve for myself, I’ve immersed myself in this so I can better understand my condition and the options available. I don’t know which lobe of my lung the bulla that I have started in, however I can assure you that it has grown to such an extent that it has compressed the other lobes to such an extent that it has taken over around 80-90% of my entire lung capacity! From the ct scan it measures 21cm. The first words that came out of an a&e doctor I recently saw’s mouth were... well you’re an interesting chap, when I asked him what he meant he said he’d only previously read about a bulla that size in a book and would put money on it that the consultants upstairs had never physically seen a patient with one either! I’ve only met the consultant once, at the diagnosis stage and he mentioned two types of surgey possible dependant on further findings, lvr surgery or a bullectomy, however he kept stressing & repeating that these are for carefully selected patients only, do you know what criteria you need to meet to qualify?

I’m no expert however from what I’ve read & understand about my condition, if the bulla is confined to one lobe and has taken over so much of the lung by expanding to it’s current size, then with a bullectmoy, I would hopefully gain lung capacity from my present situation as the other lobes reinflate/expand. That is if I understand it correctly?

Cheers for mentioning my attitude, I don’t really have much choice but to be positive, we run a family business with 12 employees & I have 3kids, one who has left home, an 8yr old & a 3yr old still at home obviously! I have a great support network around me which helps massively and I’ve just convinced myself that I’ll get by this, whatever the outcome may be!

[christina1947 in reply to Bluenose55]

Hi bluenose55just want to wish you all the best what ever treatment they decide you have age on your side and you also sound very fit . You will be sorted take care xxx

[Bluenose55]

Hi Redsox, Thanks for your reply, I’m pretty sure I wasn’t born with it. I was a smoker until recently, not what I would class as heavy, however my whole family smoked so I was probably exposed to second hand smoke from birth. I will ask the question at my next appointment though. And yes... I am a rangers supporter, well spotted! I presume you follow football yourself, which team?

[Hidden]

Hello Bluenose. I’m afraid I don’t have any answers to your questions but I wanted to say hi anyway as I’m a similar age (40), parent of a young son, and new to this game too! My diagnosis is mild COPD (probably emphysema) and I’m waiting for a consultant’s appointment as well. Best of luck getting some answers and keep us updated- you’re an interesting case indeed! You’ve done well in finding this forum- everyone will bend over backwards to help and support you, as I’ve found in the past few (pretty tough) weeks. Take care. X