Eighteen Years Since Diagnosis: My Open Lung Biopsy Story

Eighteen years ago this month, my life changed forever. That was the day I officially began this journey with sarcoidosis after undergoing an open lung biopsy—the most brutal medical procedure I’ve ever experienced. Four years later, I wrote about it, but never shared it. Until now.

Despite the trauma, I’ve never regretted doing the biopsy. It gave me the clarity I needed. But if you’re someone who needs to prepare mentally for what lies ahead—especially when facing surgery—this story is for you.

A few months before the biopsy, I had a bronchoscopy, which turned out to be a failed attempt. I have a resistance to anesthesia and apparently tried to pull the scope out mid-procedure, so they stopped before collecting the lung tissue.

That left one option: an open lung biopsy. My pulmonologist referred me to a thoracic surgeon, and I asked him to walk me through what to expect. He explained the surgery in detail and then casually added, “You’ll be up and around in a couple of days.”

Those words were, to put it kindly, misleading.

The procedure, which was supposed to last two hours, took five. My wife was terrified something had gone wrong. When I woke up in recovery, alone in a double hospital room, I felt like I’d been hit by a bus—squarely on my right side.

Compression sleeves were wrapped tightly around my lower legs, inflating and deflating constantly to prevent blood clots. They were uncomfortable and stayed on for 24 hours.

Then came the coughing.

It felt like every cough was another blow from that imaginary bus. Sharp pain tore through my side, accompanied by the eerie sensation of “bubbles” moving under my ribs. I tried to suppress the coughs, but couldn’t. A thick drainage tube, about an inch in diameter, protruded from my torso on the right, just below the rib cage. Every time I coughed, bloody fluid shot through the tube and into a large canister on the floor.

Worse still, I began coughing up clots—dark, stringy gobs and tiny bits of tissue. The nurses assured me this was “normal,” and they monitored everything I expelled to make sure it wasn’t fresh blood.

I was confined to bed for 24 hours, propped up at a 45-degree angle. When I first woke up, I didn’t need to urinate—no surprise, given I hadn’t eaten or drunk anything for 12 hours. Still, a nurse became insistent about inserting a catheter. I begged for more time. Thankfully, I eventually filled the bedpan with what felt like a gallon of urine and dodged that particular bullet.

On day two, after lunch, my surgeon came in and announced it was time to remove the drainage tube. A code was called over the PA, and a crash cart was wheeled to the doorway—just in case my lung collapsed during the extraction.

He asked if I was ready. I wasn’t.

He began pulling the tube out of my side. It felt like he was extracting two feet of rubber hose from my ribs. When it finally came free, he slapped a special bandage over the hole and gave the all-clear to the team outside. The cart rolled away.

Later that afternoon, they wheeled me down to radiology for an x-ray—my first time out of bed. Sitting up sent waves of pain crashing through me. I thought I might throw up. In the x-ray department, I had to use the bathroom and barely made it there on my own. I thought I was going to pass out.

I spent one more night in the hospital and was discharged on the third day. The walk to the car was agony. Every bump my wife hit on the drive home felt like an explosion in my side.

I couldn’t sleep lying flat for a month. Full recovery took two. I often wonder how cancer patients, already weakened by illness or chemo, survive this surgery.

If you’re heading into any surgery—especially one as invasive as an open lung biopsy—don’t rely solely on your doctor’s vague reassurances. Do your research. Ask people who’ve been through it. Find the lived experience.

Because while the surgery gave me the answers I needed, the recovery was a reality no one warned me about.

And that reality nearly broke me.

This episode can be listened to on my podcast, StillBreathing Against Odds