Does anyone else have bullous disease?

Hi all. Ive recently been diagnosed with bullous disease of the lungs. After having 2 collapsed lungs i was finally found to have a large blister the size of a large egg in my right lung. Ive had it stapled , numerous other bullae burnt off and a pluradesis( lung stuck to out lung to prevent collapse) Ive never smoked although this disease is usually found in heavy smokers. I cant find much info other than links to copd and emphysema which i dont think i have. I had my op on jan 30 2015 but im still feeling very tired with little energy . Has anyone got any ideas, id be very grateful .Cheers San .

11 Replies

  • Im sorry i have no information on that but if you stick around im sure there will be someone along to help...

    You could also try the blf nurses 03000 030 555

    Mandy x

  • Thanks Mandy x

  • HI Sandra nice to meet you and welcome to the site. I can't help I'm afraid but stick with us as there are bound to be others here who understand. Between us I think we have every lung disease ever invented and then some :O and a huge wealth of knowledge. We are a very friendly bunch who will do our best to help and support you. Welcome xx

  • Thanks coughalot i hope your coughing less x

  • Naw :) x

  • Hi Sandra I had a Bullectomy back in 2005 have also had pleuradesis on both lungs I now have severe C.O.P.D. but I try to carry on as normal I am waiting for ambulatory oxygen which should make life a bit easier. You will be able to live a normal or near normal life as long as you don't give in to it.

  • Hi Bob, thanks for your reply . Can i ask if you are or were a smoker? My surgeon told me that usually the bulla are found on the top of smokers lungs but mine are in the middle and in my left lung are at the bottom. Ive been asthmatic since i was a child but funnily enough im not wheezing any longer , just no energy to do much . I guess i need to try and get fit now as best i can . Your the first person ive chatted too that knows what im talking about. Even my asthma nurse had never heard of it .

  • Hi Sandra yes I was a smoker gave up 2005 six months before op. The blister I had covered 50% of my right lung and stopped the whole lung from working, the surgeon at Guys was fantastic he had to remove the whole blister cutting through all three lobes. 6 months after the op I was as good as new (well almost) but I have been getting worse year on year, I have now got approx. 35% function.

  • Thanks for your reply Bob. Im glad you had some improvement for a while . It must be difficult for you only having 35% function, it must really limit you . I think i need to get as fit as i can and make the most of what i have now. My surgeon said the best thing i can do for my lungs is be as slim as i can be , easier said than done lol .

  • Don't really think with lung problems it pays to be too slim, I was advised to put weight on, which I find very hard t o do even though I graze most of the day,

  • Thanks June , i could do with loosing at least a stone , just hard going at the moment with little energy to exercise but its still early days !

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