At age 15, shortly following an afternoon swim team practice, I felt a remarkably sharp pain in the back of my left shoulder blade. Remarkably sharp – as in piercing, stabbing, shooting with laser beam precision – directly into the left side of my upper back. Within minutes an additional dull pain began to spread from my shoulder blade around to the front of my chest. This pain then crept up the front of my neck, into my shoulder, and eventually down my left arm. I remember thinking that I might be having a heart attack, before dismissing the thought as impossible since I was so young. I had no idea what was wrong, but both the intensity of the pain and the rapidity with which it spread compelled me to get to an emergency room immediately.
Phase 1: Needle aspiration
I was rushed to a local hospital, where an emergency room chest X-ray showed that my left lung had collapsed: A “Spontaneous Pneumothorax” in medical terms. An ER physician quickly produced a comically sized syringe – something a circus clown might yank out of his pocket as a prop as if to say “Ha! Can you imagine if this was real??”. It was real. The physician inserted the super-sized needle through my chest and into my chest cavity in order to release air and allow my collapsed lung to re-expand. The next morning, however, a follow-up X-ray revealed that my left lung was still collapsed 80%. My father and I gazed in wonder at an image of my now baby-sized left lung floating upon the bright white lights of X-ray illumination, while my physician immediately retrieved a wheel chair, sat me down in it, and said “Do not get up.”
Phase 2: Chest tube insertion
A physician quickly inserted a chest tube to treat my collapsed lung. Chest tube insertions are notoriously painful (in fact I’ve written about them previously at greater length here). This particular chest tube insertion was no exception – it was brutal.
I remain perturbed that as a teenager I watched a doctor make a one inch incision below my breast with a scalpel, then use a combination of torture chamber-esque surgical shovels and scissors to steadfastly dig and eventually bore a hole through my chest, employing some variety of rib spreading contraption along the way. The doctor then slid a hard plastic tube through the recently burrowed hole in my chest cavity and attached this chest tube to a “suction machine” to help expand my collapsed lung. All of this was completed while I was fully awake, without any pain medication or sedative.
This process was not an exception, but rather the norm: if you are unfortunate enough to have a collapsed lung, you will then likely also have to additionally suffer through watching surgery being performed on your own body while awake, and I repeat, with zero sedative and zero pain medication.
Needless to say, I was very relieved when the chest tube was removed five days later and I could leave the hospital. Unfortunately, one month later – due to infection and other complications from the lung collapse and chest tube insertion – more invasive lung surgery was required.
Phase 3: Video-assisted lung surgery
At The Hospital of the University of Pennsylvania, I underwent a “Pleurodesis” surgery for my ailing left lung. During the Pleurodesis procedure, a thoracic surgeon used special tools to scrape the surface of my lung. The purpose of any Pleurodesis lung surgery is in essence to damage the lung, causing significant scarring, which in turn will hopefully prevent the lung from collapsing in the future. This type of surgery is often done with the assistance of a tiny video camera and is referred to as “VATS” (Video Assisted Thoracic Surgery). While I was under anesthesia, my surgeon cut three small incisions, each about one inch long, on the left side of my chest. He then inserted a tiny video camera through one incision and placed surgical tools through the other two incisions in order to operate on my lung. The physician later told me he also removed several congenital blebs (weak spots on my lung) that had caused the initial collapse. Five days later, I was able to go home. After this particular surgery, I recovered very quickly and was back to full activity, even swimming again, within a month. I was told that I would continue to live a completely normal life.
I was perhaps misinformed.
Fast forward 20 years, through more than 20 lung collapses, 5 major lung surgeries, 3 minor lung surgeries, 14 chest tubes, permanent nerve damage and chronic pain – to now, 2016. It’s been a dicey two decades. I was born with a nameless genetic condition that affects roughly 1 in 5000 men. Our condition is often referred to as “Bleb Disease” because it causes blebs (weak spots) to form near the tops of lungs. Blebs can leak air and cause one or both lungs to collapse, often repeatedly.
After living with Bleb Disease for 20 years, after having tried an extraordinary number of measures to manage my chronic health and lung issues, and now after having read thousands of personal accounts astonishingly similar to mine, I feel resolved to speak on behalf of a club that no one wants to belong to: collapsed lung sufferers. Our condition is marked by extraordinary, life-interrupting pain and trauma, from the initial lung collapse to the medical interventions and surgeries, lengthy and painful recoveries, and all-too- frequent complications like nerve damage. Considering the drastic impact Bleb Disease and collapsed lungs can have on patients’ lives, it is frustrating that in twenty years I have not yet once heard a doctor or researcher speak about cure or prevention.
To my fellow collapsed lung sufferers, whether you’ve been through one collapse or several, you have my unconditional empathy and sympathy. I hope that by sharing my story, I have validated some of your experiences, given some measure of comfort to those who thought they were alone, and provided information to friends, loved ones, and even our physicians -- many of whom care tremendously, but still struggle to understand our condition.
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