Life after a Pneumothorax

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I am 35 yrs old and suffered a SP in May 2014 followed by a bullectomy and VATS pleurodesis in July 2014. I was walking to my front door when it happened, I thought I had suffered a heart attack, the pain was intense and my left side went numb and it was hard to breathe.  Having a SP and lung surgery has got to be the most painfull and heartbreaking thing I have ever had to go through, it took a week for my lung to re-inflate and I had to stay in hospital, the surgery was extremly painfull... its lung surgery!! I spent a week in a hospital ward full of cancer sufferers (I was the lucky one) and the mental scars you deal with when it happens are terrible, I thought I was going to breakdown as I coudn't understand why it happened....but..... it also has got to be one of best things that has ever happened to me, I stopped smoking straight away and have not touched a cigarette in the last 12 months, it made me realise what was important in life, 4 months after surgery my boyfriend and I went travelling for 2 months, we climbed the great wall of china and have done so many great things since it happened. It took quite a few months for the pain to subside (and the pain was horrific) and I still get the odd twinge and stabbing pain now and again.. I have accepted that I probably will for a very long time and I refuse to let it get me down, I ignore it and carry on. I changed my attitude about it and wouldnt let it beat me and having a positive outlook really helped me. When I went through the worst part I read so many horror stories on the internet, so I wanted to say this isnt one of those, yes it was absolutely horrendous but its turned out ok and I am sure there are many more people that have the same experience as me and for those that are struggling, I really feel your pain but try and be positive and make the most of what you have now.

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  • Posted

    Hi

    I am a 37 year old male who suffered my first ever SP just three months ago. My right lung collapsed around 70% and the only thing that I can put it down to, was a fall that happened a week before. Strange really, the pain wasn't so great but the breathlessness was noticeable. Had the tube, the first procedure failed since the coil or whatever inside decided to twist, so had to have another reinserted. Dear lord above, I have never experienced a night like that where regardless of what type of pain relief was administered, nothing was able to prevent the onslaught of some of the worst pain I think I have ever experienced. After a sleepless night, the following morning at around 11AM, the tube was removed as the lung had re-inflated to its normal size. I was discharged a few hours later.

    Three months on. Since the cold weather has arrived, things have decidedly taken a turn for the worst. Pain has started to creep in, aching along my shoulder and from time to time, a sharp pain which comes in pulses has appeared. The pain starts from minor and slowly progresses up to a quite substantial piercing pain, it is like it follows the pulse of your heart rate. The pain subsides and disappears completely but returns four or fives hours later. 

    To add insult injury, there is also a gurgling sound from the area where the collapse happened, but I have no breathlessness. Checked up with the Hospital who did the relevant checks and nothing has been reported out of the normal. Some lungs can apparently leak air after a collapse for a considerable amount of time, sometimes permanently without any major issues associated to a repeat collapse, but I find that quite distressing personally. 

    I guess all of us who have suffered this will follow the same road. I agree also that we should move forward and not let this affect our entire lives in a purely negative way, but I feel that there should be a lot more research done on what happens afterwards, instead of exposing sufferers to the prospects of surgical procedures. What I would have liked is more information on what foods or exercises that can help towards the healing process. I mean, I was discharged with no follow up appointment, it was like "There you go, job done, enjoy your life". There should be more information provided by medical bodies at the end *or is it the beginning?* of the SP.

    Sorry for the somewhat negative post, was feeling on top of the world until this nightmare decided to remind me that it is still there. 

    • Posted

      Dan57925,

      I feel your pain and it is such a nightmare to go through. I think it is a beginning whether we like it or not. I've done much research and have learned through much trial and error (error being visits to the ER) that my body has to work very hard now circulating blood and oxygen because it has been harder on my body after my last lung surgery. Breathing takes focus and energy and sometimes is exhausting. My immunity isn't what it use to be so I am extra cautious around crowds and during flu/cold season. I've always been health conscientious but I do eat more foods that have high concentration of antioxidants, help reduce inflammation, and help increase oxygen levels in blood. There's no preventing or telling if or when my lung could collapse again, hence spontaneous, but just to be in the same physical condition I was in before it ever collapsed would be great! It has been in awfully slow and rough process though. Working on better nourishing my body's new needs which I learn about as I go. 

      For breathing exercises look up restorative yoga on youtube and start there. I also eased my way back into the dry sauna starting at 2 minutes and after a few months worked myself up to 20 minutes. Feels great being in there! Opens up my chest and alleviates pain. I try to drink 40-80 ounces of water per day. My diet is fresh and healthy. I don't want to add on weight because that will make breathing more difficult and will be more work for my lungs and heart. Yes, it's all exhausting and frustrating but I'm determined wink

    • Posted

      Ill never get over the gurgling feeling that I still get in my chest.  It feels like popcorn is going off and sometimes you lose you breathe its the weirdest thing no one gets it.  Some times it even makes me yawn like crazy almost like im gonna fall asleep at any moment but i guess thats normal who knows
  • Posted

    Hi Michelle

    I am 44 years old and was diagnose with sacardosis 10 years ago.. , last year was the worse my right lung collapsed twice had surgery... thank God am still alive it was very scary...now my left lung collapsed Friday currently still in the hospital waiting to see if am having surgery done.... But just wondering is there anything I can do to avoid my lung to collapse ,I know my lungs are damage due to steroids, and still waiting if i get a lung transplant .... can't really do anything without being out of breath hate it not being indepedent..... any advice will be appreciated just trying to get better ....

  • Posted

    I started having chest pain when I was 15 and went to the doctor multiple times only to be told I had anxiety which turned out that my left lung was almost 100% collapsed very close to having something fatal happen if left untreated.  Ended up having a pleurodesis on the left and right side 6 months later and can still feel the effects almost  8 years later.  Most days I feel great but other times I have extreme shortness of breathe and I feel like i need oxygen.  Doctors say I'm fine when I go because its one of those you can't fix it unless its broken kind of things which sucks.  In terms of exercise I do everything besides weight train.  What I found is any exercise or activity is fine until you get to the point where you need to push your self to the next level to participate.  For example you can lift weights but don't try to max out on a movement trust me its nothing but trouble for a few weeks till you feel better.  Its crazy how this thing has a mind of its own.  One remedy that helps me is take a real steamy shower and just take slow deep breathes in the hot room it seems to help me calm things down but the most important thing it to be relaxed.  Ive been told repeatedly that its hard to have something collapse again after having the pleurodesis but who knows some days im seconds away from wants to go the emergency room and the next day I could feel fine so its hard not to seem crazy to some people.  Its important to stay positive.

  • Posted

    Going through the same, have quit smoking and Intend to continue to do so for a few months. Am typically healthy and have strong blood pressure, my father tells me he had the same thing when he was my age. Any advice in regard to smoking going forward? I intent to take it up again at some point and the only advice I can get is don't- not very useful?

    • Posted

      helo ryan,and everyone. I had my op 14 months ago a third of my right lung removed and the lineing of the lung removed I'm ok but lots of pain in chest  I'm told the lung was attatched to lung wall  I suffer for days If  I do anything too heavy, my left lung has also got bullies and just hope none of them pop,  I smoked for 40 oddyears but packed up 13 years ago I still mis the ciggys but the doc said if I had still been smokeing he would not do op, the only advice I can give you is do what you feel is good for you, I'm 70 next birthday (god willing) and still take on board what people say and then decide if its right for me

      good luck to all who are suffering

      brian

    • Posted

      Hello Brian. My son is 14 years old 5 days ago He got a pnemothorax. We are very worry. Glad to hear you are almost 70. Could you share with us. Since when you had it? Do you fly , dive ? What kind exercise you do or not exercise you do?
    • Posted

      I wouldn’t fly or dive for at least a month or two I’m 8 years out and fly once in awhile no issues what’s so ever.  In terms of exercise anything really is okay as long they don’t push themselves to much I work out with weights all the time and don’t notice any pains unless I’m doing something like a bench press with heavy weights. Don’t worry to much I’m 24 now and had two when I was 16 my parents were worried too this thing just takes some time and they may have small issues with some pain down the road but there’s nothing he can’t do over time 
    • Posted

      helo dana, I try to keap as mobile as possible,i have also a damaged spine so it is awkward, but I do not just sit in my chair, I do as much as I can when I can that might be just polishing the table lol   also for the first year after op every little twing made me think my lung had collapsed again, I'm no doctor and its only my humble opinion but just do what feals ok for you build up slow,and if in doubt call your doc for advice, I do purse lip breathing which helps when I feal tight chested, I don't fly   also don't push people away I know sometimes you want to be left alone but you must keep the brain working laughter is a good antidepresent, 

      good luck to you and your son,

      brian

    • Posted

      Thank you Mathew. We apreciated your replay. My son got a mild collapse and went back home after 8 hrs in emergency room. Everything LOOK SOO scary for us and. A LOT of questions now. Drs say he will be ok but our conserned is his quality of life. Can you share with us when do you have it? Do you know soneone who have it? Do you fly? How often or not at all. How about. Camping in the mounting. He is a teenager and to go places still. Now Im so afraid to the ideo leave him alone....
    • Posted

      After a month if his lung doesn't collapse again he should be out off danger. It could always happen again but he's young. He'll bouncy back

    • Posted

      Dana the first thing you have to do is take a deep breathe. From all the research I’ve seen every person is different. I work construction and do physical work every day and I’m fine but there are days where I’m more out of breathe or have shortness of breathe or even just some random pains. I have the plurodisis surgery on both sides and from what I understand it’s very very hard to have a lung collapse after that. Now in the past 8 years I’ve gone to the hospital with the impression my lung went down a few times  and I was in pain and went through x rays and catscans to check and they said I was fine. It’s one of those things where you don’t fix it unless it is broken or is or words collapsed again. I think it was just my anxiety because after I saw that I was fine the pain already felt better so this is more mental than physical sometimes.  I don’t really wanna say what they can or can’t do because everyone’s different and they just have to learn what works for them. Tell him he’s not alone and there are a lot of other guys out there with not so great lungs that get better.
    • Posted

      One month! Thats great. Lets hope hus lung dosent collapse again😞

  • Posted

    Hello everyone I am a 28 years old male tall but not very thin. My right lung completely collapsed 6 years ago and to be honest it didn't bother me so much then. But just at the end of January 2018 my right lung went again this time I am very bothered. I can't work I have three young children to care for and now I've been told I'll have to travel 150 miles for a lung op. Which I'm totally freaking out about because all I've read is it's painful and its a slow recovery. Is the operation successful or is their a chance it will happen again. The specialist was apologising to me as if I've been givin a terminal diagnosis. It really didn't help make me feel positive about it. I care now because I'm a father to young kids and my job is at risk. I have debts to pay never mind everything else that costs. So I guess what I'm asking is after the op and long recovery can my lung still collapse. Or will my left lung go next.

    • Posted

      helo sorry to hear bout your problem,my lung collapsed 5 times, before they would operate I had a third of my lung removed, if you could stand the chestdrain pain the op is a walk in the park, I did not find it very painful but it has taken some time for nerve pain to calm down, I'm 70 next birthday and although I have empherseyma I'm doing ok, go in with a positive attitude and you will be ok, as for your left lung going. just try to get on with life, I have blisters on my left lung andtold they could burst, but we must all try to look forward

      best of luck let me know how you get on

      brian

    • Posted

      Thank you i will let you know how it goes brian74750
    • Posted

      I know how you are felling? My son just verily got it 7 days ago.... Course it concerning. But have peace of main. Its will be ok. I have found old people precisily in this forum telling positives stories. Dont go to you tube at all... Everything in there is sooo sad. Yes we are sad for them we have the samething. But nothing can bit a positive main abd pisitive actituted. Yes it suck but fight for love of your family like Im doing for my son. Good luck. I found a gut who is 93 got his surgeries still great...
    • Posted

      When one lung goes down it puts more stress on the other lung so it tends to make the other one go down too. When it comes to surgery the chest tube is the first step if that doesn’t work they procede with the plurodisis surgery which is scaring of the lung to stop blebs from popping which is what I had on both sides. From what I understand having a plurodisis essentially means they won’t collapse again. After going thru it I feel fine in a sense because I have occtional shortness of breathe and random pains and they tell me it’s all the scar tissue causing my distress but I shouldn’t worry about them collapsing. The doctors told me after my first lung went down around 6 months my other one might and 6 months and one day later my other side went so it’s tough because your not gonna make them operate on both of it doesn’t need it but on the other hand the longer you wait the worse it may get so I would defiantly pick the doctors brain a little 
    • Posted

      Thank you very much. I'm now feeling much better one month on. But obviously it's still in the back of my mind that my lungs could collapse again. Just waiting on my referral for the surgeon now. All I can say to everyone with phomatorax is it sucks and it's just our battle in life, so don't over think it. If we die due to a Pneumothorax whither it be spontaneous or not such is life my friends. Don't alow it to rule your life..

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