A Pneumothorax Story

It took me a couple years to learn that I was suffering from a series of pneumothoraces (collapsed lungs). I only began to unravel the mystery after finding someone online describing similar symptoms. To bring awareness to the issue and hopefully help someone else who is searching for answers, I’ve decided to write about my experience.

First of all, I’m a relatively tall (6' 3"), skinny (170 lbs.), young (34) male. Each of these traits make me more susceptible to a pneumothorax than an average human. My brother has also had a pneumothorax, which may be yet another factor (it’s more common amongst certain families). I’m also a cyclist, which may or may not play an active roll in my susceptibility.

In 2015, I was training for my first entry to LoToJa, a one-day bike race that goes from Logan, Utah, to Jackson, Wyoming, and crosses over a few mountain passes. I wanted to make sure I was as prepared as possible, so I ramped up my training. I threw in a few rides that particularly pushed my limits, one of which I would have been better off not doing since I wasn’t fully recovered from a recent cold.

Initial Symptoms

As the season went on, I started noticing an odd sensation that felt like it was in or around my heart. This was most pronounced when I laid down and particularly at certain angles. I felt what seemed like pressure on my heart or that my heart was beating differently somehow. It wasn’t a faster or slower rhythm and it didn’t skip beats; it just felt like it was beating in a more pronounced fashion. Not only this, but there was an audible squish or crackle sound on each beat. You didn’t have to put your ear up to my chest to hear it either. My wife and I could both hear it while lying in bed if we were paying attention to it. It sounded similar to what you might hear if you were to quickly squeeze a wet rag or sponge.

The sensations I had didn’t seem to have any significant, noticeable effect on me. I was still in peak fitness, I didn’t feel sick, and I was breathing fine. I decided I would wait and see if it got worse.

On August 21, while on a bike ride with friends from work, I wrecked. I was knocked unconscious and as I regained consciousness, I had significant trouble breathing. A chest x-ray at the hospital showed an obvious pneumothorax.

What’s a pneumothorax? It’s when air leaks out of the lung into the area between the lung and the chest wall. While a little air doesn’t pose much risk, it can get dangerous very quickly. If increasingly more air escapes out of the lung (known as a tension pneumothorax), it continues to reduce the amount the lung can expand. It also puts pressure on the heart, eventually compressing the vena cava, a large vein carrying deoxygenated blood into the heart. If the air outside the lung isn’t released, it can be fatal. In fact, in a combat setting, it’s the second leading cause of death.

A subsequent x-ray about an hour later would show that it neither grew nor shrank. Additional x-rays would show it starting to shrink. Breathing started to get easier. The EMTs initially strongly considered inserting a chest tube to release the air in my chest, but ultimately ended up treating me conservatively under a watchful eye.

During my time in the hospital, I brought up my odd heartbeat sounds. The nurse took a listen with a stethoscope and described it as the sound a pepper grinder makes. The staff ran an EKG which produced normal results, but the doctor strongly suggested I get it checked out further by a cardiologist. At no time was there any mention of a potential relationship between the sounds around my heart and a pneumothorax.

About five weeks went by as I healed from the wreck. Along with the rest of my body healing, the heart sensations and sounds I experienced previously had stopped. Even so, I went to my appointment with the cardiologist. They ran a plethora of tests. I don’t have a list of the tests, but I do know it included an EKG and an ultrasound of my heart. I also wore a heart monitor for a week. All tests returned back normal results. I did have slightly elongated lungs, but apparently this is common amongst tall, slender people.

Two Years Later

Almost two years went by without any symptoms. Then, on August 4, 2017, I found myself in a similar situation. There wasn’t any particular event, but I started to feel some pain in my back and chest. It felt like a pulled muscle somewhere in the middle of my chest cavity. I don’t recall if I could hear the squish sounds at the time.

The next day, I rode in the Ultimate Challenge, a bike ride/race where we ride the queen stage of the Tour of Utah. As amateurs we leave a few hours before the pros and try not to get caught by them before we reach the finish line. I felt the back and chest pain and breathing was slightly hampered, but I’m not sure how affected I was by it. I clocked my slowest time up the last climb and felt low on energy, but that could be attributed to many other factors (like, I’m just slow).

The next few days went by and the pain got worse. I could hear the squishing sounds again. Breathing while exercising became more difficult. I felt like something was loose, like my lung had become detached and was dangling in my chest. It was very uncomfortable bending over, straightening back up, lying down, or running. I also started to notice that when I bent over, it felt like a bubble would squish up and around the organs in my chest, then when I straightened back up it would squish back down to its original location.

My previous Google searches hadn’t turned up anything promising, but now the sensation of a bubble moving up and down my chest seemed pretty unique. At this point, I remember I searched for something like “bubble sensation in chest while bending over” and eventually arrived at this post. It described the sensations I had been having to a tee. I wanted to get to the bottom of it, so I decided I would get it checked out by a doctor on the premise that I might have a pneumothorax. I called the local InstaCare to see if they were open and had a chest x-ray machine. There was some conversation between the receptionist and the doctor, and then the doctor got on the phone. After asking me a few questions, he told me I immediately needed to go to the hospital emergency room.

I got off the phone and told my wife I was heading to the ER. LOL.

The Diagnosis

It’s awkward walking into an emergency room and feeling relatively okay. I told them I thought I might have a pneumothorax and the InstaCare doc on the phone told me to come to the ER. They took an x-ray and, sure enough, I had a pneumothorax. Considering I had already had it for several days without any major events, they asked that I closely watch it and come back the next day. They also asked that I get an appointment with a thoracic surgeon, which I did. The next day I got another x-ray and it was about the same size. At that point there wasn’t much they could do about it, so they bid me farewell with the understanding that I would meet with the surgeon and come back to the ER if it got worse.

A couple days later I met with the surgeon. After reviewing my symptoms and history, he ordered a CT scan. The CT scan showed that I still had the pneumothorax. More specifically, it showed what appeared to be a “bleb”, which is basically a blister or small air sac on the side of the lung. The flesh on it can be thin, and when it gets a hole, it causes air to leak out into the chest cavity. In addition to the bleb, the scan showed that my lung had separated from the wall of my chest.

Blebs that cause air to leak out of the lung can show up in otherwise healthy people in the absence of any trauma. When air leaks out and no trauma is involved, it’s called a primary spontaneous pneumothorax. Some of the findings of when these occur are fairly interesting. For example, changes in air pressure (weather changes, scuba diving, mountain climbing), listening to loud music, midterm and final exams for students (stress?), and even certain sexual activity (woman on top pozish) have been reported as causes.

As we compared this with my history, we concluded that in 2015 I probably already had a pneumothorax before my wreck, then the wreck blew the hole open even more. There was a real possibility that I had even more pneumothoraces previously that had gone undiagnosed.

When someone has a single pneumothorax, the chance of having another is around 54% (though studies vary). After a second pneumothorax, the chance of another rises even more. The surgeon pegged my chance of having another between 80–90%. Furthermore, the lung wasn’t going to re-attach itself to my chest wall without surgery.

When I talked to the surgeon about my heart squishing sounds, he hadn’t heard of it before. This was quite surprising to me since, in his estimate, he had treated over a thousand pneumothraces. By this point, I discovered through my research that it had a name: Hamman’s Sign. I’m still not sure what to make of him not being aware of this. From online forums, it seems quite common for doctors to not be aware of this symptom.

The Plan

The surgeon highly recommended a video-assisted thoracoscopic surgery, more commonly known as a VATS. They put a video camera through the ribs in your back and then they work with tools through two additional holes through the ribs on your side. In this case, they would cut off the bleb and then use titanium staples to staple tight any weakened tissue on the lung. In addition, they would perform a pleurodesis. This is where the surgeon will inject a chemical powder into your chest cavity which irritates the tissue. The lung and chest wall then bond together. When they’re bonded together, a hole in the lung is less likely to occur in the future.

I told the surgeon I would think it over and let him know. I wasn’t really keen on the idea of staples on my lung or chemical powder in my chest cavity (or, as Wikipedia puts it, “artificial obliteration”). Mostly, I was concerned about potential long-term effects. I read several people’s reports of long, painful recoveries, pain around the lung long after surgery, and persistent difficulty with intense aerobic activity. Maybe I could be lucky enough that things would heal on their own and never happen again? Unlikely, but I still had a couple months left of good weather so I was considering waiting until winter anyway.

A few weeks went by and I started feeling better. The sensations mostly went away (except for the “loose” feeling in my chest) and I was back to normal activity. I even took a few days to cycle in the French Alps without any problems.

Obligatory French Alps Photo

Then, one morning, I headed out on a fairly leisurely bike ride. A few miles from my house, the pain in my back and chest returned. Again, it felt like some sort of pulled muscle. Soon enough, all my symptoms were back. I already knew what was wrong and the path forward, so I scheduled surgery.

Surgery

In October, surgery day came. I arrived at the hospital, changed into a gown, and did the rest of the prep routine. I received an epidural to help manage the pain. The epidural placement was less painful than I was anticipating, which was welcomed. Then they put me to sleep.

I can’t remember how long the surgery was, but I think it was around two or three hours. I remember it was a bit longer than anticipated because they found more than they were planning on. I had an active pneumothorax at the time of the surgery, which I guess is unusual. The bleb was “quite large”. They also found remnants from a prior bleb in a different part of the lung. When I compared the location they found it with the location of the pneumothorax reported on my x-rays in 2015, they seemed to match.

They cut out the two blebs, put a row of staples over each area, then injected the chemical powder to seal the lung to my chest. They then left two tubes running out my chest for drainage purposes. The surgery was a success.

The bubble is the bleb. The white lump is the old bleb on a different part of the lung.

I spent the next few days in the hospital. The pain wasn’t as bad as anticipated. I think I pushed the epidural button once or twice and didn’t take any pain medication beyond that. Also, having delicious food delivered at my beck and call goes a long way. Before I left, they pulled the drainage tubes out which hurt like a bugger but only momentarily. My biggest problem was not being able to 💩, probably because of the meds and anesthesia.

Healing

Over the next few days there was some pain, but relatively little except for when lying on my side. They left the holes in my ribs open so they could drain. I changed the gauze inside them and they eventually healed on their own.

The two holes in my side. There’s one more in my back that’s not shown. Also, nipple.

The doctor wanted to make sure I went on walks to open up my lung. Taking deep breaths is key to keeping the lung sealed to the chest while it’s healing. I walked a couple miles every day, sometimes twice a day. The doctor also said I should listen to my body to determine when I could get back to exercising. My body said riding my bike sure looked nice, so a few days after surgery I took my first ride. It felt great. It was obvious I couldn’t breathe as well as usual, but it felt good to be outside, on my bike, and in the sun.

One notable feeling I had for a few weeks after surgery was a vibration around my lung while I was breathing in or out. It wasn’t painful, but I was concerned my staples were rubbing something. The doctor said it was a pleural friction rub and would go away on its own. It did.

I only had one follow-up after surgery just to make sure everything was healing as planned. They took a chest x-ray and everything looked fine. They sent me on my way and I don’t have any more follow-ups.

It’s been about five months since the surgery. I started feeling great about a month after the surgery. Three months after surgery, I felt entirely healed. I no longer feel pain in my chest and back. I no longer feel or hear squishing with my heartbeat. I no longer feel like organs are wobbling around in my chest. I’m doing whatever cardio activity I choose. I’m not up to peak fitness only because it’s winter and I’m partially hibernating. I’m interested to see how summer goes. I’m still at a relatively high risk of having another pneumothorax, but the doctor was quite confident I wouldn’t have another in the same place as the others. Research seems to support this confidence with a reported relapse rate of <2% (again, reports vary).

The doctor recommended I purchase a PneumoDart. It’s basically a big needle you stick into your chest in the case of a tension pneumothorax that doesn’t give you enough time to get an ambulance. I hope I never have to use one, because that sounds sketchy.

In the end, I’m glad I had the surgery. It was obvious I was going to continue having problems if I didn’t, so my options were limited. I also felt the medical team did a fantastic job and I wouldn’t hesitate recommending them to others. My surgeon was Dr. Ulysse G. Mccann Jr, MD in Provo, UT. He services a community with two large universities and a missionary training center. This entails many thousands of people in the demographic most vulnerable to the condition.

That’s my story. I hope it helps someone out.