The bottom half of both of my lungs are "dead", can anybody please give me any advice?

Hi,

I'm a 25 year old male whom has suffered numerous pneumotharaces between the ages of 16-18 years old, resulting in 5 different bouts of keyhole surgery (3 on one lung, 2 on the other). Since then I have had several tests done to test my lungs, and roughly 3 years ago I had a test done to measure the capacity of my lungs. The results showed that both my lungs were operating at no more than 53%, and that the bottom half of my lungs are "dead".

Since the surgeries, I have always found myself becoming short of breath whilst walking, climbing stairs, or even just talking. I still play football, although since the surgeries I have reduced this to once or twice a week.

Is anybody else aware of any similar stories about their lungs? I see posts about people with 1 lung, but none from anybody with 2 half-lungs. I don't know if there is any way possible to improve my breathing, or maybe even improve my lungs.

Any advice and/or stories are welcome.

Thanks

11 Replies

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  • Hi sood

    Really sorry you are experiencing such probs.

    Not sure you can go by my experience hun as my surgery was so long ago. Had bronchiectasis since babyhood. At 15, although my bronch was and still is scattered through both lungs, they decided to do a left lower basal lobectomy. This was open surgery as sthey didn't do keyhole then. I don't think they would even do it now unless my bronch was localised.

    I can't really say sood what difference, if any, it has made, as I don't know how I would have been had it not been done.

    You may find it helpful to telephone the BLF helpline - they are excellent.

    Love C xxx

  • hi sood 10 my lung capacity is 52% i have the lungs of a 90 year old however im not on oxygen i find it difficult to play around with my grandchildren im 55 i do find it a struggle to do most things as for playing football im surprised you can i know i could not. your so young to have had so much done has well. credit to you. however what ever your doing just be careful if you feel breathless for instance and have a appointment or have to be some where for a certain time prepare yourself well in advance and allow your self plenty of time to get from a to b .

  • Giving up playing football isn't really an option for me - it's one of the few things i've loved doing since i was a wee boy and i'm not sure I could give it up. I do lose my breath a lot quicker than i used to, and my stamina has definitely been affected, but i still run around 90 minutes and essentially just get on with it. My GP (whom I would trust with my life) has advised me to maybe consider taking it easy at football, but I guess I don't know any other way - I think maybe my passion takes over my health in that situation. I do get concerned over something you mentioned though, about finding it difficult to play with your grandchildren, i do somtimes worry that I perhaps won't be able to play with my future children in the way I would want to.

  • Hi sood,my lung capacity is 25% so "they" tell me,however at the moment I attend pulmonary rehab and just about manage the excersises,Im always sob and sometimes have really bad days.I think you should keep up with excersises and try not to worry too much.take good care of yourself,eat well and keep warm.x

  • This will probably sound really stupid, but everybody tells me I should be keeping myself warm... but how will this help me? I suppose the only reason I can think of is that since the surgeries whenever I have caught a cold, I have always ended up with either a chest infection or a lung infection. Am I really that bad that a simple cold can actually be much worse? I play football in Glasgow (wearing just a pair of football socks, football shorts and a football top), most weeks it is either raining or freezing cold or both! The last 3 matches I have played have been in terrible snow. When I go out at night I rarely wear a jacket due to the inconvenience of having to carry it around everywhere. Is this all just plain wrong?

  • Its great to see all the supportive and helpful messages on here. Warms the cockles of my swinging brick :-) take care all.

  • Do the best by what you got left never too late

  • Thanks for all the kind messages everyone. I have been donating money to the BLF ever since I found out about the bottom half of my lungs being "dead", but I only became aware of this web community recently. It feels fantastic to know this is not something that I am going through by myself, that there are other like-minded individuals who can share their experiences too.

    I wish everyone the best with whatever it is they are going through.

  • Good Luck Sood10,

    I think the reason for the "keep warm" is because the cold affects the lungs as in my case the muscles of the chest tighten when they get cold. As simple as that :) Also it's winter and breathing cold air really restricts my lung function. Walking my dog wearing a Balaclava with only me eyes showing has caused a few frowns then smiles when I wave. I live in West of Ireland in a very rural area, so it is only cars I wave to :)

    I think Fishtail has it right, exercise and warmth all have helped me so I guess it helps you too :)

    Best wishes :)

  • Hi Sood10, Good for you continuing with the footie, I'm sure it is keeping your remaining lungs healthy rather than damaging them. But man, put a jacket on now and then! I agree that cold air can tighten muscles and make breathing harder. ;-) I sound like your mother! The bottom half of my right lung is 'dead' but the left fully recovered after a bilateral pulmonary embolism. I was, and still am, a marathon and ultramarathon runner. It took a while to get back to fitness and I have lost some of my speed over shorter distances but my endurance is as good as ever and I've done two 100mile races. Having said that, sometimes when I'm sitting still, or talking, or eating I can feel breathless still -I wonder if that is partly anxiety? Oh yes and I do have to start slowly and build speed, especially in the freezing temps. Anyway....all the best and keep exercising to your own ability, it really does help the healthy lung tissue to develop and become more efficient. Hope this encourages you.

  • I'm so glad to read that you have made a full recovery with one of your lungs. I'm equally impressed that you continue to run such long distances! Sport is and always has been my biggest passion and I refuse to give it up. I used to be a 100m sprinter, and my pace is now no longer what it used to be. I am going to continue to play football. I'm a tall, skinny boy, so maybe hitting the gym wouldn't be a bad idea either... *wishful thinking*

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