Struggling to breathe 3 years after VATS surgery - asking for feedback

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Hi there,

I came here to talk about my experience with spontaneous pneumothorax and VATS surgery and maybe hear some feedback from you guys. I didn't really try sharing my story with fellow sufferers of this condition until now, but I've had my share of respiratory problems in the recent years and here I am. Now I feel like sometimes it gets the better of me and I'm struggling a lot to remain positive in life overall.

I had 2-3 spontaneous pneumothorax during my early twenties (20-21 years old) that went pretty much unnoticed until I had a bigger one that sent me to the ER. The first diagnosed one was not that big and at that time I only had to rest for a couple days. A couple months later, I rushed to the ER with a more major episode; this one required a thoracic drain. Being my second confirmed pneumothorax on this side, I had VATS surgery and pleurodesis on my left lung a couple days later (2016). Things were not so bad afterwards, but unfortunately, I had another major episode of spontaneous pneumothorax about 1 year later (2017), this time on the right side. Again, thoracic drain then VATS + pleurodesis. This time I noticed that my breathing was significantly harder than after the first surgery. I also need to point out the fact that I had 2 other, non related surgeries before. One was in 2013 to repair a nasal deviation, and the other in 2015 which was a big one (jaw advancement surgery to correct a weak chin and try to correct the mild sleep apnea I had begun to suffer from at that time).

After the last lung surgery (2017), I thought it would get better over time, but frankly, I've lost a hell lot of stamina since then and breathing has become a hard task for me, everyday, with ups and downs. I started developing this habit of sucking in large amounts of air through my mouth and kept thinking "wow, I can't even have a satisfactory breath anymore". This had become so frustrating that 2 months after that surgery, I didn't cope at all with anxiety and had to ask a leave from my work / studies and had a bit of a burn out. Started taking anxiety / depression pills which numbed the negative thoughts that I attributed at that time solely to anxiety from my studies. I did complete my studies, which was no easy task; still had a few breakdowns and panic attacks from time to time, even on meds. I took those meds for almost 2 years and a half and decided to slowly taper them then stop them after I got my degree, because I was feeling better and more in control. The breathing thing was no better at all though, I was still gasping for air every couple breaths, and I even noticed that I was out of breath by talking to other people (even when I was not stressed out). But I kinda learned to live with it and the meds did their job of creating an artificial feeling of joy overall, even if inside of me, I was still feeling always tired and not up to much apart from playing video games and avoiding my responsabilities in life because of constant tiredness.

But now, I've been off my meds since about 4 months and I went through hell trying to taper the drug. I was soon struck by the realization that I was still feeling out of breath most of the time, even at rest, almost 3 years after the last surgery, and so I had to change my approach at breathing, started doing some yoga, started finally focusing on breathing by the nose and avoid gasping air, etc. This eventually got rid of the crippling feeling of being out of breath even at rest, but I still feel like I must deploy big amounts of strength to get an OK breath (like breathing has become something really difficult and not something natural at all since the last surgery). To top all of that, I forgot to mention earlier that I also have a chest deformity called "pectus excavatum" (you can look it up on internet) and this causes my chest to be sunken, stiff, and it basically does not expand much when I breath, giving me the feeling that I need to work very hard to take a proper breath but never get the satisfaction of feeling my lungs fill completely. It kinda feels like a weight prevents me from breathing on my anterior chest. Before the lung surgeries, I didn't really care that much about the chest thing, but now I feel that it might be part of the problem, but it's hard to say...

So yeah that's about it. I learned to accept a bit more that my breathing is not as satisfactory as I would want it to be but some days, I get so tired of finding breathing difficult that I just start to cry. Sometimes I don't feel like living like this is OK for a 27-year old but I guess life is life. I don't really know what to do about that and my girlfriend gets pretty tired of hearing me repeat the same things as she feels I don't have the right mental approach to the problem. So here I am, seeking advices from strangers. Sorry about the long text, just had to get it off my chest.

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2 Replies

  • Posted

    Hello there

    I just had my xray done today as i am feeling the same thing as yours 1 year post vats. I am still grasping for breath and have a terrible back pain. It is the same as what i felt the first time i had my episode. My xray is clear both lungs are ok but im still confused why am i feeling this? How are you now? Is it anxiety that causes your breathing problems? Hope to connect with someone in the same page as me.

  • Edited

    Hey just wanna say thanks for sharing all this cuz I've never heard anyone else going through this before i thought i was a freak accident or something. I had my surgeries when i was 16 and I am 23 currently feeling exactly the same about my breathing, like its never enough even with effort/inhaler/whatever tf else I've tried to help it. Don't let your gf or anyone else make you feel like you're just complaining or being too much because this is really the most alienating thing I've ever felt and anyone who tries to diminish it just can't understand. Not to say the people in your life don't mean well, just saying this is something most people will never get and i feel like my biggest challenge has been accepting that. Its crazy though how not enough air can trigger the anxiety which just makes it even harder to get the air you already had and it just turns into a vicious cycle. My only effective solution so far has been taking enough edibles (medical marijuana) to put me to sleep at night when there's nothing to distract me from my own airways. Its been awhile since you posted so i hope you've found new ways to alleviate it and if you have i am all ears.

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