Lillian H., NJ

My name is Lillian (Lilly) and I suffer from what is known as spontaneous pneumothorax, also known as collapsed lungs. When I was 15 in 2018 this journey began with what we thought was a one time occurrence, entailing 1.5 weeks in the hospital, 2 invasive surgeries, a chest tube, and lack of any movement for the weeks following. We had learned that my lungs grow what are known as "blebs" which then pop and collapse my lung. As traumatic and horrible of an experience as it was, I was happy it was over and I was better again. But to our surprise, the same thing occurred in 2019. Again very spontaneous with no rhyme or reason, it collapsed again while sitting on the couch (emphasis on the word spontaneous).

Unfortunately, I was rushed to the hospital to go through this same process yet again, but somehow ended up being even worse. At this point I was super defeated and had no idea how such a thing could happen twice. I was told that this is a rare condition that happens in tall skinny males, so as a 5'2 90 pound female I felt helpless. Through the help of family and friends and a wonderful hospital staff, I made a full recovery and was able to once again move on from this experience.

As much as I wish the story ended there, it does not. In 2021, I felt an oh-so-familiar pain that sent a panic through me as I knew exactly what was happening - it had once again collapsed. This time, because the lungs had been operated on numerous times and surgically attached to my chest cavity, the pain was tenfold. My spirits had been crushed as I knew the process that would follow, which was a long and painful one. Luckily we made it to the hospital where I was once again treated and operated on.

Unfortunately, the first procedure was not successful and we were told that I needed emergency surgery as the injury to the lung was causing problems for other organs in my body. After this horrible scare combined with a wonderful surgical team, I was able to have had a second surgery that completely repaired the lungs. With some rest and time, I was able to be sent home once again to complete the 3rd round of this condition.

For a long time after I lived in a constant state of anxiety, feeling like a ticking time bomb ready to go off. It felt like my lungs had an expiration date and whatever work they were going to do on them would eventually be reversed. I have seen countless specialists to test so many things to find the cause of these collapses and have a newfound appreciation of healthcare workers and staff for the hardworking they put in to making patients feel cared for and lifting up spirits that feel low to the ground. Luckily throughout these years dealing with this, I have had an amazing support system that not only cared for my physically but mentally as this experience has been short of uneventful. 

Since then, I have learned a lot of things. I've learned more about myself and my strength to carry on through the pain and to always have faith that one day things will be better. I am currently 3 years free of one of these collapses and am hoping the journey continues. I hope my story can help anyone else who's experienced a collapsed lung as I know it is a pain like no other, to know that while it seems like it is never going to subside, there is an end in sight. I also hope it helps teenagers prioritize their health as it truly can help set themselves up for a healthy and happy lifestyle. It is also my greatest wish that everyone everyday just take a few moments for themselves and take a deep breath. You don't realize the gifts you have in this life until they're spontaneously gone.