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

    Thank you for the postivity. I had a pneumothorax the last week of January. Hospital for a week. Restricted activity for 2 weeks after I got out. Guess I pushed myself top far too soon cause I'm in a lot of pain today. Feels very similar to having another collapsed lung. I've read a lot of horror stories past few days so nice to see an uplifting one! Can I ask- any remedies for the pain and how long before you felt like yourself again?
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    • Posted

      Hey.

      You will be in a lot of pain for quite sometime, a collapsed lung is quite a horrific thing to have to go through...there were many occasions when I thought my lung had collapsed again because of the pain that I was in, as a general rule of thumb... If you can't breathe properly then seek medical

      Advice straight away, I used to wait about 12 hours to see if the pain subsided and it always did. The more you do the faster you will heal. It was nearly a year before I felt completely normal again but I did have surgery too.

      Everyone puts there horror stories on the Internet and no one shares the good... but think of the majority that have a more positive story... I promise you there are many.

      The only remedy I can offer is a positive attitude, fight through the pain, you have to remain strong and carry on, I know it's hard, I've been there but you will get through it and it will get better.

      Feel free to contact me anytime.

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  • Posted

    Wow I guess im not the only one, and I agree it's a very painful thing to go through. In my case I ended up with a total of 5 lung collapses 2 on the left and 3 on the right, and a total of 3 vat surgery with pleurodesis it all started when I was 18 in my senior year of high school im currently 20 so it's been 2 tough years mostly with school. But I've managed to keep myself alive by exercising a lot every now and then I feel pain but I ignore it as much as possible. Have any of you had problems floating in a pool? When I swim I have to move a lot to stay up and when I stop I sink very quickly. It's hard to swim back up and float so I've stopped swiming without supervision. What king of upper body exercise do you do? I used to do MMA, and soccer which im currently doing, but I want to start strengthening my upper body again. It's very hard to get in shape after this kind of situation to be honest before my third surgery I told myself that would be my last surgery and that if it happens again I will not get myself treated. The pain is too high and I don't want to suffer any more. So im glad you 2 are better and I really hope it never happens again to any of us.
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    • Posted

      Alex, I'm glad to hear your doing better... I have had a pneumothorax 7× on the L and 2× on the R. If your running and playing soccer, this will increase your chances tremendously!! I also ran, aroebics, and I was told not to do any high impact exercises, that it aggravates the lungs and often will result in another episode. I was told many marathon runners complete the race only to realize their lungs had collapsed.

      Unfortunately, I rectified every reason they gave me for the collapse, and it still happened. Low weight, I put weight on. High impact, to low impact, still occurred... Smoked, quit, still happened. It's inevitable, if it's going to happen, it will, and nothing we can do to change it.

      We can't let it control our lives though, we'll always have pain here n there. But, the key is to not let it consume us, worry about it. Live life to its fullest, and when we're down, we will get back up!!

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    • Posted

      Christine I totally agree with you we can't let it beat us and restrict us. Honestly, I thought of giving up before my third surgery started, but after seeing my parents suffer because I was suffering I promised myself that it would be the last time and that I would live a normal life. And so I am. I'm playing soccer twice a week and I plan to practice Tae Kwon Do by myself (don't want to risk getting hit XD). My lungs keep collapsing every now and then, but thanks to the 3 pleurodesis performed on my lungs they heal themselves in a few hours ussually when I sleep. I find it funny because most of my collapses happened while as I was sleeping. Anyway I'm a very active person and an athlete. I'm not going to let this take me down and if it does then I'll leave happily doing what I love. I just started doing push ups and pull ups and it hurts a lot but pain makes us stronger. We've basically been through hell, so this doesn't even get close. I hope for you, Christine, to be the person you want to be and to do all the things you love to do. We still have a long life ahead of us, lets enjoy it!! 
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    • Posted

      Alex, Do you snore when you sleep? Because I'm told I snore like a 300lb man and I'm 105lbs....I have severe sleep apnea, and all my pneumothorax also happens when I sleep, only to wake up and not be able to get up. Honestly, I feel it's due to my snoring that aggravates it...thanks for your response. Glad to hear nothing is stopping you!!
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    • Posted

      No I don't snore. All of my pneumothorax were spontaneous and all of my doctors and surgeons told me they didn't know what was causing it. I've never smoked and in my first thoroscopy the found hundreds of dark spots around my lungs and 3 blebs. I don't think it's your snoring most of the sounds from snoring come from nasal tissue or tongue or your throat. Do you sleep in fetal position? Every time I woke up with a pneumothorax I noticed that my elbow was positioned on the bottom ribs and when I moved my arm from that position my ribs would feel sore.
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    • Posted

      Thank you for the motivation. I'm a 30y/o male, former smoker and I've had 3 SP on my left and right lung each but because I have no insurance and my job never offered any I'm restricted to getting the chest tubes and almost everytime they do it I break into tears because I have no idea why this happens.I was so active before this came upon me and now I'm scared to do anything remotely strenuous.I am amazed to see so many people going through this and surprised that more studies aren't done to get a better understanding of "WHY" and figure new ways to tackle this epidemic but, anyway Thank You I'm glad to see I'm not alone in this.

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    • Posted

      George,

      I've no idea if you'll see this as it's been four months since you posted, but you are NOT alone! My first SP event happened when I was 15. It wasn't particularly painful(until after the surgery) but both lungs were down to about 30% capacity of less. It was crushing, and, of course, very frightening. I've been very active all my life, so, to have that taken away was extremely difficult at that age, especially when we had no idea why.

      Well, I'm currently 31. I've run a few tough mudder races, I play hockey every week, and it off the clear blue, while comfortably seated and processing invoices at work, I felt a sharp, stabbing pain just under my left collarbone. My wife drove me to the hospital that night just to be sure that it was NOT anything more than bad gas pains considering my history. Sadly, it was a new SP event, originating from the opposite side as the previous one 15 or so years ago. As my lungs were not nearly as collapsed as the first time, the ER doctor opted for the much smaller tube, but didn't insert the needle deeply enough and do had to perform the entire procedure twice. Recently, I've been having a really hard time at work with my schedule changing drastically(working overnights, working AMs, PAs) hardly seeing my wife, eating well or exercising. I had just had a discussion with my wife about turning my negativity around, not coming up with excuses and getting my life back on track that very morning! When you say that it brings you to tears, I fully understand. In my room at the hospital, at 3 or 4 AM, well after I'd send my wife home to get some sleep, I was in a bad state just asking, "Why?".

      The doctors can't answer it and neither can I, but I won't let this beat me and neither should you. Do your best to take care of yourself and eat well. Remember, these crappy things can happen to you or anyone with no notice, but they do NOT control how we react! If we lay around feeling sorry for ourselves or coming up with excuses for every time something negative happens, we'll never break out of it.

      All of that to say, George, you are NOT alone! It's frustrating but YOU are your master and decide to let or not let things affect you. Good luck, friend!

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    • Posted

      I know this is an old post but the black spots on your lungs, have you had it checked to see if it is Catamenial pneumothorax?  Endometriosis on the lung/diaphragm?  Do the collapses come within a day or so of your cycle starting?  
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    • Posted

      george im 68 years old and stopped smokeing 11 years ago but 2 monthsIa my right lung collapsed,  i went into hospital had drain put in, it was the most painful thing iv ever been through, i was in for6 days went home 5 days later lung went again  had drain in again, 4 times it happened then i had abulllectmy and plurectmy(im sure thets what its called)  im home now and graduly getting stronger but im so afraid it will happen again  ,Its the mental side of things thatsslowing me down, Like you george iv shed many tears but im not giveing up nor must you   good luck to you and everyone on this website
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    • Posted

      Thanks, derrickm for the words of encouragement and Thanks for sharing your story with me. It means a great deal to me just hearing of our very similar medical issues and reading your journey through your own battles and how your pushing forward and refusing to waiver is so inspiring and is exactly what I needed to hear. The last time I shared I had a total of 6 S/P with 3 S/P recurring on my right lung and 3 S/P recurring on my left but since then I have had my right lung collapsed again resulting in a V.A.T.S procedure being performed with a wedge resection and the talc powder being used was in the hospital 7 days with an epidural tap on my spine the recovery time was 3 months and than my left lung collapsed again at which they also performed The V.A.T.S (Video Assisted Thoracic Surgery) with a wedge resection and the talc powder the only difference was instead of the epidural for pain they opted to nitro freeze blast the veins where the incisions would be they told me it would be a faster recovery I still had to be in the hospital 7 days but it only would take 2-3 weeks to recover oppose to 3 months. So, It has been 1 month and 18 days since the last surgery and I feel better knowing the chances of a S/P never happening again are heavily in my favor. Thanks again derrickm for your kind words, advice and insight. I'm definitely going to take your advice on eating healthy and working out. Time to take my life back! I can't Thank You enough , Friend!

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    • Posted

      Thank you brian74750 for sharing your story and kind words. I will definitely keep fighting and getting my life back. This forum is amazing because a big problem is expressing to people and family in my everyday life what I'm going through and how I feel on a Physical, Emotional and Mental level but I'm always more frustrated because I feel like with anything else in life it's hard to even attempt to understand without having gone through it personally. That's why this forum and others like it are so important and necessary so individuals like myself and countless others know we are not alone in what sometimes can feel like our darkest hours.

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    • Posted

      Hi! 

      I have had five pneumothorax over last there years. This summer I had surgery twice. And now I'm trying to recover and get a normal life again. I just wonder when you say you get a Pneumothorax in your sleep and that it heal by itself. How does that work? 

      (I'm sorry if my english is not perfect, I'm from Sweden :-)

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    • Posted

      Ever since my surgery which implicated having my lungs glued to my thorax, (in simple terms) my lungs collapse and after resting for a few days they go back to normal. I also learned that a lot of it has to do with my immune system. I'm currently a college student and when I stay up for 2 or 3 days straight due to exams, stress and or projects my immune system gets very unstable, sometimes I get sick but most of the time I get really small lung collapses. I can tell by having difficulty breathing, pain when breathing deeply, and sharp upper back pain. Stress has been one of the main cause for my lung collapses. Once I finish with all my school work and start sleeping more the lung collapse, pain and hardness to breath goes away. Have you been under a lot of stress?

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    • Posted

      Sorry, I'm a male. The doctors said they were going to send tests samples to the lab but I don't know if I ever received them or not I was underage at the time so my parents might have the information.

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    • Posted

      Hi, I know you posted this 2 years ago but I was just wondering if you ever had a catscan done and if there are cysts in your lungs, I have a genetic disorder call BHD syndrome slot of people in my family have had their lungs collapsed and I ended up getting genetics test to figure out why. 
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    • Posted

      This is great to hear. I had two pleurodesis' two years ago and today I woke up with pain and after going to the hospital and doing a xray, the DR. told me that I have a very small pneumothorax and that I should come back tomorrow for another xray to see if it went away by itself

      I'm hoping that it will go away on it's own and the pleurodesis will continue to fix the issue and it won't ever become a large collapse. 

      Anything you do when you get a small collapse? Bed rest? or you just deal with the pain until it goes away?

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    • Posted

      I Shawn -

      I see this post is 9 months old, but no one has responded. I hope by now the small pneumo has absorbed itself. I too had this issue (and still do occasionally) where I had two small air pockets a month after surgery (a year ago). I went to the Dr. and he told me to wait another month and come back again for another x-ray. Sure enough, the two small areas were gone and had been "absorbed". Hopefully this is the case for you as well. I don't do bed rest, there is no point in that, I just carry on with life as usual. Eventually the pain goes away, but I do focus on very deep breaths often and give it a few days. However, I am not a Dr. so if you have any concern, please get an x-ray and consult your Dr. for what course is best for you. Good luck! Hope this helps.

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