Confusing Symptoms
Below is a list of symptoms I recorded during the fall of 2015 when I knew something was wrong inside my chest, but couldn’t determine what it was. If these align with your symptoms get a chest xray—that’s all it takes to diagnose a spontaneous pneomothorax. Don’t fly, don’t scuba dive, and don’t go to high elevations. I didn’t figure it out for a full year which included many flights, a trip to Nicaragua, and a trip to Sub-Saharan East Africa during which I hiked to the top of Mt Kilimanjaro (19,341’). I was lucky that my large, 30% collapse didn’t occur until I was back in the United States and a mere 15 minutes from the hospital.
- Air pocket sound in chest during heart beat when laying down on back.
- My girlfriend said it sounded like a gulping sound
- I thought it sounded like a knocking sound or a tap inside my sternum or a vacuum being formed and then going away (cavitation)
- sometimes only occurs if lungs are half full of air
- sometimes also occurs when sitting
- Pain forward of left shoulder blade during periods of very high exertion
- Occasional feeling of needing to burp, even if no food has been consumed recently
- Standing up after taking off my shoes frequently caused me to cough and it felt like there was a weird bubbling in my lower left chest.
- Drinking alcohol increased the chance of a minor episode occurring
Also note that I was 6’6″ and 182 lb at the time of the major collapse. I lost 15 lb throughout the ordeal. Tall, thin, men between the ages of 15-40 are most likely to suffer from a spontaneous pneumothorax.
The Beginning
One month after hiking the John Muir Trail (22 miles per day for ten days) I was back in the gym testing out max heart-rate intervals on the stair master. I had enjoyed my speed on the JMT and wanted to push it even faster on my next ultralight hike. In my online research I found intervals to be a very popular method to improve endurance and pace. I’ve since read Training For The New Alpinism and have discovered how to do them correctly and that they’re not nearly what they’re made out to be, but this was before I knew better.
After about a month of heart-bursting, shirt-soaking, 30 minute intervals with 2 minute on/off segments 2 times per week I felt a strange pain in my left back. I have a winged scapula on my right side and the pain presented itself similarly–a dull ache beneath my shoulder blade. I wasn’t sure what was going on, but the pain was fairly minor so I pushed through the remaining 30 seconds of the “hard” interval and the pain recessed a bit during the rest two minutes. Unfortunately it returned when the “hard” interval began, so I decided to stop and lay down and roll my back on a foam roller, which typically results in some pops around my right scapula and the back pain disappearing. This time however, the rolling did nothing to help ease this new pain. Though, confusingly, after my heart slowed down, the pain vanished.
Cycling at the time was my only form of transportation, so I slowly biked home, thinking hard about the feeling and the pain, but it was so faint I couldn’t be sure it was really there.
Now for the crazy part. In the quiet of my home I noticed if I slouched over while sitting at the dinner table an audible sound emanated from my chest during the “dubb” (s2) in the “lubb-dubb” of a heartbeat. This was rather scary. Hearts are not supposed to make sounds so loud you can hear them yourself. Later in the evening, once my girlfriend returned home, I laid down for bed and noticed that it was even louder when laying down supine. Loud enough that she could hear it from about two feet away. Not good.
I should have gone to the emergency room at that moment.
Instead I decided to wait and call the doctor the next day. When I woke up in the morning, the heart sound had vanished, but my concern remained strong. As such, I called the doctor and quickly explained the situation. Unfortunately he didn’t have any time for a visit and suggested I visit the ER.
August 27th, 2015 – First Visit to ER
The symptoms were becoming intermittent, but were still happening if I positioned myself just right, so I went to the ER to see if they could figure out what was going on. They hooked me up to the EKG and all data was normal, and I couldn’t get the sounds to happen, even if I laid down, so $1,600 later I’d learned nothing.
I was not content.
September 2nd – Resting Echocardiogram
I met with my doctor and explained everything regarding the initial episode and the trip to the hospital. Since it was chest pain with a sound on heartbeat, we decided that an Echo would be a good next step.
The results from the Echo showed that my heart was behaving as it should and the mystery continued.
This was pretty annoying, but I decided to just approach it with the mindset that if it happened again I would try to get a healthcare professional to listen asap.
I also decided to purchase a HR strap, to try to gain a deeper understanding of my heart rate during various activities.
September 14th – Purchased Suunto HR Strap.
September 26th – Hiked the Wonderland Trail
With the mystery remaining, but not reoccurring since first presentation, I proceeded with my plan to hike the Wonderland Trail, a 93 mile circumnavigation of Mt Rainier, in four days. This was ~24 miles per day with 11,000ft of elevation change. While very strenuous in duration, it’s pretty mellow when it comes to heart rate, and I never approached max heart rate. The flight and elevation during the hike didn’t trigger another collapse. No heart/lung issues on the trip.
Fall 2015
Multiple times throughout the fall the sound returned (mini pneumothoraces), but I didn’t record the dates and the sounds would vanish within a couple days, so I didn’t always go to the doctor. I did however make a list of symptoms during this time (these were posted at the top of this post).
January, 21st – Stress Echocardiogram
Prior to this second echo, I decided to try to increase the chance of another event presenting, so I hit the stair master for a round of max hr intervals on Jan 20th. This didn’t cause a mini SP, so again the stress echo came back totally normal. My heart continued to present as healthy, because it is.
March 13th – Summited Mount Kilimanjaro
We crept at a snails pace up the mountain to increase the chance of a full group summit. This was frustrating, as I became cold while ascending, which never happens, but in hindsight this really might have thwarted a SP in Tanzania. It also successfully allowed our entire group to summit, which was exciting. After Stella Point I was allowed to split from the group and charged to the summit. I felt strong and healthy and as a form of apology for the slow ascent, the guide taught me how to literally run down the mountain taking striding plunge steps in the gravelly scree. It was an incredibly thrilling decent and easily made up for the slow ascent (again, especially in hindsight, where I easily could have gone from the strongest client to the most likely to die).
March 31st – Another Mini Pneumo with iPhone 6 Recording
Exerpt from an email I sent to a close friend:
” It just happened now as I was laying on the couch about to get up and brush my teeth, having not heard it in months. The case is no longer cold, I thought I’d try making an audio recording. I just put my iphone, microphone down (bottom edge) on my left chest. It’s obviously not a high fidelity recording, but it’s pretty easy to hear my normal heart beat, and then the weird noise, although it sounds a bit different to me on the recording than it does when I’m just hearing it with my ears.
Two more things to note: I ran yesterday (Wednesday), for about 40 minutes, which got me up to a fairly high hr and then today (Thursday) I drank two beers in the evening during a board game event, probably with 40 minutes between drinks. And then approximately two hours later, while laying down, the heartbeat sound began.”
June 9th – Another Mini Pneumo
While driving across the country I happened to be in Nashville for the Country Music Awards. I went downtown and drank 4 beers over the course of about 4 hours and then woke up in the night to the tragic return of my chest sounds.
In the morning I drove to St. Louis and the sounds occurred while driving for a little while, but then went away. I had a glass of wine that night and slept fine with no chest sounds.
June 14th – Another Mini Pneumo in Glacier Nat Park
Only five days later it returned while on a hike that peaked at 6,000ft. It occurred midway through the hike and, as it was minor and I wasn’t exerting myself super hard and I was in Glacier National Park, a place I’ve been wanting to go for years, I pushed through it. Again, foolish. The mini PS healed itself that night, so the sounds were gone the next day.
June 24th – Hiked the Tahoe Rim Trail
165 miles in 10 days with my girlfriend. Beautiful hike with no heart/lung issues.
Sunday, July 17th – First Major Collapse
After spending the afternoon in SF I took the BART back to West Oakland. This involves a ride through the trans bay tube, which creates enough pressure to pop your ears. Because I’m 6’6″ I can’t Stand up straight, and the train was crowded, so I stood hunched over in poor posture and upon exiting the BART car I stood up tall and arched my back the other way (cow, of yoga’s “cat-cow”). At this moment I had a weird sensation in my chest, like something fell a little bit. I walked down the stairs and began the 5 minute bike ride home. My girlfriend trounced me back to the house. Within 30 seconds of biking at a leisurely pace my back began to hurt below my left shoulder blade, then it began to hurt in my left chest, primarily on inhalation. It got worse and worse as I biked home, until I was in significant pain and slowly coasted the final block. I rested and caught my breath before attempting to climb the stairs to our second floor apartment. I then laid on the ground for an hour, during which time the heartbeat sound arrived. Now would have been a good time to go to the hospital.
Instead I went to the doctors office the next mornin, arriving before they opened. I had to walk up a small hill to get to the office from where I parked, and would have had to rest if it didn’t flatten out. In this condition I would have to rest walking on flat ground if I was walking further than a single city block. This was very unusual. As I’ve made clear, I can typically walk all day.
My doctor had never heard this sound before. He called a cardiologist to sneak me in at lunch time (1 month wait for a “true” scheduled visit). At lunch the 50 year old cardiologist said he’d never heard such a loud sound before. He pulled in a 30 year old doctor who just graduated from Harvard, who also had no idea what it could be. They decided I should get a third echocardiogram. Again it showed nothing. They were stumped.
I left without knowing the next step.
The cardiologist spoke to my doctor the next day (Tuesday) and they decided I should get a chest Xray.
Wednesday, July 20th – XRay & Hospital
I went in and had the chest X-rays, one back & one side, and immediately walked over to look at his monitor to see if I could tell if anything was abnormal (at this time I couldn’t read a chest Xray). I also asked him “how’s it look.”
He replied “looks like you have a collapsed lung.”
“Finally!” I exclaimed “the mystery is solved. What do I do now?” I asked.
“Now you go to the ER.”
In the ER a Spontaneous Pneumothorax Tru-Close Kit was opened and the small diameter tube inserted through my chest wall into my chest cavity. This was actually fairly difficult to achieve repeated slices with the scalpel and a few “take a deep breath” as the ER doctor used their body weight to try to ram the dull point through my chest wall. Eventually it was successful inserted into my pleural space and I was attached to the hospital’s suction through a pleurevac for 30 minutes. An Xray was taken to see if my lung was reinflated, and it was (to within 5% of full), so suction was removed. 30 minutes later another Xray was taken to see if my lung remained inflated and it did, so I was free to leave. I was given a prescription for Norco (hydrocodone + acetaminophen). I then had a follow up Xray and appointment with a thoracic surgeon every other day for the next week. At day 7 my Xray showed that my left lung was fully inflated. I also knew this since the chest gulp sounds had ceased.
Wednesday, August 10th – Return of the Pneumothorax
Exactly two weeks after the Tru-Close was removed, I leaned down to put on my shoes at 10am and felt a lump slip in my left chest. There wasn’t any pain, and I immediately lay down to see if there was a sound, but no chest sound. It was an odd sensation, one I had had before directly indicating a SP had occurred, but it seemed OK. Until six hours later at 4:30pm, while cooking an early dinner, I felt the true collapse of my lung. I put the food in the refrigerator and went into the bathroom and shaved my left chest (the Tru-Close device had some issues with my chest hair, which also caused a very uncomfortable and difficult removal).
I took a Lyft to my thoracic surgeons office and told them it had collapsed again. They got an Xray to confirm. I was hoping to be able to just get the Mechanical Pleurodesis procedure at that time, but that wasn’t possible, so I went to the ER and got another Tru-Close to relieve the collapse and hold me over till surgery, which wasn’t going to be until Friday.
I requested the original ER doctor, but they weren’t available, so I received a different ER Doctor who was less effective at numbing the area and had far more difficulty forcing the Tru-Close tube through my chest wall. Eventually they got it. Unfortunately it seemed that the additional bleeding from the struggle caused the tube to clog, so after being taken off suction the one way valve failed to function and my lung collapsed once more. With the tube clogged, normal suction wouldn’t work, so we had to trouble shoot and decided to use a large syringe to pull and push air in/out of the tube, which worked. I was then reattached to suction and transferred into a room to wait safely attached to suction until it was time for surgery.
On Thursday I called friends with healthcare knowledge or connections to ensure that the Video-assisted thoracoscopic surgery (VATS) mechanical pleurodesis was the best next step. It was unanimously approved, since it has no detrimental or unknown long term effects and only a 1% chance of a SP reoccurrence.
Boy was I not aware of how intense this was going to be. I woke up in the ICU with a foley catheter feeling like garbage. The medicine caused me to have sleep apnea (which I’d never had) and the monitor would beep to wake me up at which point I’d take as big a breath as possible, before falling asleep only to repeat for hours getting the worst sleep imaginable.
Soon I moved out of the ICU and onto the thoracic floor of the hospital. It was much better here, though it’s still chaotic waking up at 5am to give 3 vials of blood, then an Xray at 6, and medicine at 7, and then breakfast and vitals at 8. Once they come for the morning blood it’s pretty relentless. If only it was less Henry Ford and more Jack of All Trades (wake up at 7am for blood, Xray, vitals, and medicine).
After a week in the hospital I was released. Due to severe constipation I decided I wanted Norcos rather than Oxycodone to take at home. This was based on logic applied to unknowns, which was foolish. I had the thought “anything but Oxy, if that’s what’s backing me up” but Norco is even worse. Just take the Oxy and always take Doc-Q-Lace morning and night until you’re down to 20mg/day of oxy or less. I’d also take SmoothMove Tea (great product for this moment in life) and drink warm prune juice. Squatting periodically throughout the day, if it doesn’t cause too much pain, is also helpful for constipation as well as general hip & back health.[1]
If there is pain beyond what the Oxy is dealing with, I’d recommend taking Tylenol with the Oxy, to give it a Norco effect. Since Oxy lasts 4 hours and Acetaminophen lasts 8 hours, if you take a Tylenol with every Oxy it’ll help level out the peaks and valleys of Oxy. And keep track of your medicine on a pad of paper, so you know what you’ve taken. This was most important for me when taking 60mg/day (or higher) since I wouldn’t always remember if I’d taken the meds or just thought about it while silencing my alarm. Also, stay away from Oxycontin–it doesn’t work as long as claimed (12 hours) and was what caused my first symptoms of withdrawal (after only 7 hours). Just set timers and take oxy every 4 hours as annoying as that is.
Soon I was only taking Norcos at night and feeling quite a bit better.
September 2nd – 21 days since the 1st VATS Pleurodesis Surgery – Another Spontaneous Pneumothorax 🙁
This was very hard on moral.
It happened in the night. I was lying down in bed on my right side, curled up a bit, not full fetal position, but in that direction, when I woke up in discomfort with the feeling that I needed to roll onto my back. As I did so, my back straightened out with gravity assist and I felt my lung collapse again. This curved-to-straight back SP occurred twice, first getting off BART when I stood up tall, and then this time where gravity forced my back straight. It was 2 am and I was livid. I lay in bed awake for hours, unsurprisingly unable to sleep.
In the morning I shaved my left chest again and returned to the doctors office. This time the collapse was slightly different, so rather than the normal Tru-Close in the ER I had to lie on a CT scanner bed to have a CT assisted small-bore chest tube inserted very carefully so as not to pierce my lung. This doctor was fantastic, perfectly numbed the area with Lidocaine and also gave me a dose of Fentanyl which provided a unique, pleasant, floaty feeling along with a chemical punch to the chest, literally taking my breath away. I later learned Fentanyl is a fairly serious respiratory depressant, which is what caused this feeling.
Second Opinion? Transfer?
As I waited for the
Fuck it, Pneumo is getting worse, lets do this.
Talc it is.
Feels like I’m drowning in air. Very hard to breath. Slept sitting in a chair first night after surgery so I could breath.
Fuck Talc Hurts.
Pills appear to get the pain under control, maybe I’m OK?
Pills don’t work. They worked midday, but by the evening they were no longer controlling the pain. I slept horribly this second night. It felt like the tubes leaving my body were being pulled on, though it was just the weight of gravity. It was terrible.
Couldn’t get the pain under control. Spoke with the anesthesiologist and we decided to go for an epidural.
This was like a miracle. I could finally breath and the pain went away, but my blood pressure kept dropping until it was 80/60 and the staff became concerned.
The epidural arrives in a big first push, and then it stabilizes down to the ml/hour dose. Unfortunately the dose was too low, so while the epidural was terrific at first, by the evening it was no longer sufficient, but without the anesthesiologist present it couldn’t be turned up for fear of reducing my blood pressure.
The next morning the epidural dose was increased, but unfortunately with this came terrible nausea with hours dry heaving in the bathroom.
There is no winning.
September 9th – Leave the hospital
The epidural was removed, then the foley was removed, then I urinated au naturel, and was cleared to leave the hospital. Always a joyous occasion.
September 29th – Follow up doctors appointment
My pain isn’t diminishing as it should be. I get oxycontin to provide a base level of oxycodone, and then only take the 10mg oxycodone pills as needed, rather than every 4 hours.
Saturday Oct 1st – Day 21 since surgery – Spins Begin
I woke up at 7am and my bedroom was spinning. I thought wtf. I get motion sickness and have had the spins before from binge drinking, but never just lying in bed. I’d last taken a 20mg Oxycontin at midnight and was expecting it to last at least 8 hours, so waking up at 7am with dizziness was extremely unexpected. Up until this point I’d been nauseous at times from the medicine, however never had any issues with dizziness/spins/vertigo.
Once up for the day I dove into the internet to learn what was going on. That’s when I came across an article a friend had mentioned about Oxycontin.[2]
Monday Oct 3rd – Day 23 since surgery – Begin Tapering off Oxycodone
Tapering off oxycodone is tricky, and for some reason I couldn’t find any good guides besides what was available on forums. As such, I’m sharing this as a guide on how to taper off oxycodone for those in similar situations. I discovered the need to taper after I was dependent on the drug (which only took 4 weeks) and had already halved my dose, without realizing what I was doing. I then learned first hand what withdrawal felt like, and it was horrible. People who have been taking Oxy for years at high doses have a much worse time.
Typical symptoms of withdrawal include: nausea, diarrhea, insomnia, spins/vertigo/dizziness, restless leg syndrome or similar feelings throughout your whole body, full body itchiness, and many more.
Two days after dropping from 60 mg/day down to 30 mg/day I discovered why tapering is so important. I felt horribly nauseous and spent the whole day face down in bed unable to watch, read, or eat anything. The third day had marked improvement, but was still quite bad, and by the fourth day I was doing a bit better. I then read a bunch about how to taper correctly from 30mg/day, and have created a table and a graph showing how I should have tapered off 60 mg/day.
The method repeats. First cut your pills in half and then decrease your interval from every 4 hours, to every 3 hours. This is a 5mg dose 8 times a day, so 40 mg/day. You’ll take this for 5 days. Then you extend the interval to 4 hours. This is then a 5 mg dose 6 times a day, so 30 mg/day. Now you’re at half your original dose. After 5 days (so on day 11), cut the pills in half again and decrease the interval to every 3 hours, which as you can see in the table below results in a daily dose of 20 mg/day. Just keep tapering down to zero and you’ll be done with Oxycodone! Then, depending on how long you’ve been taking the drug and your bodies chemistry, you’ll be done with withdrawal in 5-10 days.
There are some fairly aggressive supplement strategies that some folks use during tapering, however I decided to stick to the following benign basics: MegaFood Balanced B Complex, Jarrow 600mg Omega 3 2:1 EPA:DHA Balance, and NOW 1000 IU Vitamin D-3. I’ve included the links & brands because I did research on them and they’re good companies. If you have your personal favorite brands by all means choose them, these are just for folks like me that don’t normally take any supplements and thus are unfamiliar with the brandscape. Also, the Jarrow Omega 3 capsules don’t result in any fish burps and have an awesome strawberry flavor that, now that I’m describing it, sounds weird, but it’s awesome. Take the fish oil morning and evening and the B & D in the morning. I don’t know if it helped, since I didn’t experiment with & without, but I’ve heard whispers through family friends that there are research findings likely to be announced in 2017 that indicate fishoil helps reduce withdrawal symptoms. Given fish oil has been proven to help in many other areas, it’s safe to say it’s not going to hurt, and the placebo is a strong effect, but I don’t think they’re critical to withdrawal, just a potential help.
Goodluck.
December 12 – Still recovering
I thought I could begin driving a few weeks ago, but after driving around a few times and becoming very sore for days after, I’ve given up and am resting for holiday traveling. I still have spikes of pain and need to lay down before the evening to rest my chest. The surgical entry points have healed very well on the surface, but are agitated if I lay on them, so I still can’t sleep on my left side, and I try to minimize being a passenger in a car. Car seat bolsters push directly on my back left incision site, which is uncomfortable in the moment, especially on bumpy rides, and also results in pain for days after.
I’m currently taking Tylenol for the pain, though it doesn’t seem to be very effective and the pain is worse than when I began tapering Oxy. Oxy is a very effective pain killer, but it’s side effects increase with duration and just aren’t worth it. Get off as fast as you can.
I was hoping to be able to recover and ski this winter, but today I’ve cancelled all future travel and outdoor plans.
I’m still unable to do a plank due to chest pain.
