My Introduction

When it comes to primary spontaneous pneumothoraces, I do not fit the textbook profile. According to the Society of American Gastrointestinal and Endoscopic Surgeons, PSP is up to 10 times more common in males than in females, with an annual incidence of about 20/100000 patients per year. Risk factors are tall stature and low body mass index, and most often occur during adolescence or soon after. Smoking is also a risk factor. I, on the other hand, am a small 5'2", 120ish pounds female. My first pneumothorax occurred the week before I turned 35. I have never smoked. I have always been relatively healthy, citing an excellent diet and a busy lifestyle that I like to pass off as exercise. I live Salt Lake City, Utah -- a beautiful place, but one with horrific air quality -- and after owning a successful floral design firm for 10 years, I am now a stay-at-home mom to three kids ages 2-11. As far as lung issues in my family history go, I had a younger sister who suffered from Cystic Fibrosis and passed away at age 12, and a grandmother who battled lung cancer. But that's it. I've only known one other person whose lung collapsed spontaneously, which has made this journey a rather lonely one. Its easy to find medical information about the hows and whys of PSP, but despite the abundance of patient message boards floating around on the internet, I have struggled to find specific, detailed, first-person accounts to help me know what to expect as my condition progressed. One can only provide so much information in a paragraph, and so everything I did read blurred together with redundancy and left me with little comfort.

As I laid in bed three weeks post-op expressing this vein of frustration, my husband suggested I relate my story in the detail I myself wished to read, in the hope that I might fill someone else's void. And so what follows are the chronicles of my own journey with chronic PSP.

The Beginning

September 2014. We live a mile away from my youngest son's elementary school. On Thursday afternoon, my 2 year old and I set out with the stroller to walk to a group of 6 neighborhood kids home from school. Half way there, I started to feel an ache in my upper back, at the bottom of my left shoulder blade. It had been a busy day of errands and constantly getting a toddler in and out of an SUV in hot weather, so I figured I had pulled something earlier in the day and was just now feeling it. Not one to be deterred by something like a pulled muscle, I continued on to school. By the time I pushed my daughter's mammoth jogging stroller up to the elementary school's main doors (requiring a climb up a small hill, of course), the ache had increased substantially. The entire left side of my chest and back was in pretty serious pain, from the bottom of my rib cage, radiating up my shoulder and neck, to the bottom of my jaw. I stood in the shade waiting for the kids, trying to stretch out those muscles, thinking this must be what it feels like to throw out your back. In doing so, I realized that the shortness of breath I figured was a result of pushing a stroller in the summer heat had not subsided, but was getting worse. By the time all the kids were out, I was also experiencing dizziness, nausea, heart palpitations, and try as I might, I could not seem to regulate my breathing. I didn't want the kids to worry, though, so we set off for home. It was all I could do not to pass out. It felt like someone was sitting on my chest and I couldn't take a deep breath no matter how hard I tried, but we walked the entire mile back to our neighborhood. When I got home, I laid down on the couch, but that seem to cause the pain to intensify, so much so that I couldn't get my body back into a sitting position.

Now I have to interject here and let the reader know that I am tough. Like, REALLY tough. My tolerance for pain is quite astounding. I've given birth with failed epidurals and little more than a wince and an "ouch." For my kids to see me in so much pain was concerning, and my oldest son called my husband, Tyler, who promptly came home. After quickly Googling my symptoms, he wanted me to at the very least go to InstaCare (because Google said I was having a heart attack), but I refused and asked him to get me some ibuprofen and let me rest for a bit. A couple hours of rest later, I got up and pulled together the dessert I had been assigned to take to a baby shower that evening. I decided against attending the baby shower, but I did go about my evening as normal -- helping with homework, putting kids to bed, watching TV with my husband, etc. I promised Tyler I'd make a doctor's appointment in the morning if I didn't feel better when I woke up. I didn't sleep at all that night because I just couldn't get comfortable and the pain seemed to get worse the moment I laid down. By morning, not only was I still having chest pain and shortness of breath, but I could feel something -- literally feel something -- when I bent over. My husband could feel it, too, simply by placing his hand on my back. It felt like a muscle or something was catching on itself or my ribs when I bent up and  down. This was especially puzzling, so I reluctantly made a doctor's appointment.

I got the kids off to school and Tyler went to work, then I dropped my daughter at the sitter's and drove myself to the doctor. They looked at me a little cross-eyed but performed an EKG to make sure I hadn't had a heart attack. It showed I was tachycardic, but no heart attack. The doctor came in and asked a few questions. I was so short of breath I had a hard time talking, but I'm a pretty perky patient so I was joking and smiling though the whole appointment. The doctor said she was concerned I might have a blood clot in my lung and suggested I head to the ER. So I got back in the car and took myself to the hospital. I had a full day of mom-stuff scheduled. Both of my boys had half-days at school and I was supposed to be watching someone else's kid that afternoon, so I called Tyler and asked if he could take care of all that for me as I would likely be a few hours in the ER. My doctor had called ahead, so upon arrival to the ER, they rushed me right in -- prime-time television style -- and in a flurry of activity, did another EKG, took a bunch of blood and gave me a chest x-ray. After a good, long wait, the ER physician eventually came in and said, "Well, you don't have a blood clot. However, the x-ray shows that you have a significant pneumothorax." "A what?" "Your left lung is collapsed by at least 50%." I figured that was better than being on blood thinners for the next 10 years, so I was relieved. He explained that while unusual, lungs can collapse spontaneously, and marveled at the fact I had waited almost 24 hours to bring myself to the ER. Apparently most people with that size of a collapse would have called 9-1-1. He gave me the run down: I would need to have a chest tube inserted in order to get the air out and allow my lung to re-inflate. "How long will that take?" I asked, "Because I have a babysitter scheduled for tomorrow and dinner reservations to celebrate my birthday." He laughed and told me that most people require a hospital stay anywhere from 3 days to a week in order for the pneumo to be resolved. I was pretty peeved.

Two delightful guys from radiology came and got me. In between the jokes and chit chat, they explained that having a chest tube placed is a torturous process -- way worse than child birth. It has to be done while the patient is awake, strapped to a table, underneath an x-ray, and while they do their best to numb the insertion site, that does nothing to help the pain that occurs inside the body. I asked for (and was given) morphine before they began. One of the guys held my hand and both of them kept talking to me as the radiologist was doing the procedure: An incision is made between the ribs and the tube is pushed into the chest until it rests along the lung. The chest tube is connected to a plastic box called a pleurovac, which collects and measures any fluid that drains from the lungs. The tube is also connected to suction to help drain the fluid and get the air out so the lung can re-inflate and any assumed hole in the lung can heal itself. While it definitely didn't feel good, I was able to keep my composure, most likely thanks to the morphine. One of the guys marveled, "You didn't even flinch!" He probably said that to everyone, though.

When it was over and they were getting ready to take me back to the ER while I waited to be admitted, they asked, "Do you have someone here waiting that we can go update?" "No, I'm here by myself." "You brought yourself to the ER with a pneumothorax?" They got a kick out of that. I eventually made it to my room and had to call home to get supplies for my unanticipated stay. While I was alone (because my poor husband was trying to find someone to take our kids so he could visit his poor wife), I quickly became somewhat of a celebrity among the nursing staff. -- not only because I'm young and so healthy and don't fit the profile of a spontaneous pneumothorax, but because of the circumstance surrounding it. I told my story at least 10 times during my stay.

They started off by giving me hydrocodone for pain relief. Yeah, right. There was a tube inside my chest. Every movement I made was painful. And the worst part about having such a high tolerance for pain is the fact that I consequently do not respond to pain medications. I require the heavy stuff to make a dent. Luckily, nurses stepped in and provided me with morphine so that my muscles could relax and I could sleep as much as possible, because even sleeping was painful. I've read other accounts where patients were allowed self-administered morphine...lucky dogs.

I was given a chest x-ray every 4 hours or so to check on my progress. Luckily, I am a ridiculous over-achiever, so 24 hours after being admitted, my chest x-rays showed I was improving at a fast enough rate not only to go home, but to have my chest tube removed before I was discharged. When it was time, I was told to sit on the edge of the bed, exhale, and then inhale, hold my breath, and bear down, at which point the guy yanked the tube out. I can't even describe that feeling -- chest tubes don't slide out, they are literally yanked followed by resistance. I swear I saw stars when it happened, but boy did it feel good to have that thing out of my chest! They put a water seal dressing on it and sent me on my way with no other follow-up instructions that basic wound care. The doctor said there could not have been a better, more textbook outcome in any way. My nurse said that in 12 years, she'd never had a patient with my diagnosis go home sooner than 3 days.

I still had about a 10% collapse when they sent me home, so I was told to take it easy for at least a week. When I got home, I went straight to bed and slept for 18 delicious hours. It felt wonderful. I had some residual pain from the chest tube that didn't last incredibly long, though the incision site was too tender for me to wear a bra for a couple weeks. I felt like it took a solid three weeks before I was no longer easily winded and could go about my day without any issues.

As we were leaving the hospital, the doctor warned us that once someone had one spontaneous pneumothorax, the chance of recurrence was very high, especially within the first year. For a short while after returning home, I worried about that. Should I change my lifestyle? Was I a ticking time bomb? It didn't take too long for reality to take the wheel, though, and I plunged head-first back into my chaotic life. A month later, I had a tiny little scar that was hardly noticeable, and I was functioning at 100%.

Three more make Four

For a few months, everything was great. Because I was never referred to a pulmonologist or even my Primary Care Physician for follow-up, I continued on with my life as if that was just an odd bump in the road. It was a great topic of conversation at dinner parties, but overall, I felt fine. We got through the Christmas season and greeted the New Year with the expectation that 2015 would be better for us.

A week into January, I was sitting in church when I felt almost a pop inside my chest. It was tiny, but I felt something. This was quickly followed by familiar chest pain (once you've experienced one collapse, you know what it feels like without a doubt). I looked at my husband frantically and mouthed to him that I thought my lung had collapsed again. We went home and I immediately went to bed to rest. Not only am I tough, but I am also stubborn, and while I am usually not the type to self-diagnose, I am super sensitive about seeking medical care when I think it could be unnecessary (and I'm painfully cheap and ER visits are expensive, so there's that). As I was evaluating my symptoms, I determined that because my shortness of breath was minimal, it must be a rather small collapse. My internet searches all told me that small collapses are usually treated with observation only, so I decided to wait it out on my own. I spent the following week resting and the pneumothorax eventually resolved on its own.

We figured that was the recurrence the doctor had mentioned and maybe I was in the clear, until a month later -- boom -- another small one. And the month after that? Yet another small one. At this point, I was frustrated. I didn't have a week out of every month to lay in bed. I didn't see them as life threatening (because I hadn't been told otherwise) but these pneumos were quickly affecting my quality of life. And yet each time, I assured myself that that had to be the last one. Having no specialist to turn to, I simply didn't know what to do.

Surgery Day

We showed up at the hospital right on time. 9:00 AM. I was taken to the room we were to wait in and given a gown to change into. My room shared a bathroom with the adjoining room and I could hear patients coming and going while I continued to wait. Someone finally let me know there was an open heart surgery before me that was taking much longer than expected and to sit tight. My surgeon came in around noon, quickly signed my left upper chest, and let us know I'd be skipping the ICU and he'd be sending me to recovery instead. He didn't bother to explain why, but at that point, I was already being wheeled to the surgical staging area where I received my IV, etc. Not much time passed before I had to say goodbye to my husband and I was wheeled into the surgical room. Luckily, my surgical nurses were very friendly and put me at ease. I was given a spinal block, hooked up to oxygen, and then told I was going sleep.

When you're waking up from anesthesia, its not a gradual thing -- you snap awake. You're not "with it" by any means, but you're awake. At the point I woke up, I could immediately feel that I was struggling to breathe. Every breath I took was accompanied by searing pain, so each rapid inhale came out as a squeak. I don't know if my eyes were closed or if the intensity of the pain was so severe that I couldn't focus on anything, but I could hear people scurrying around me. A woman's voice exclaimed, "She can't breathe. She's in so much pain she's crying. We need to get her something fast." I remember thinking, "Oh, that poor girl! I wonder why she's crying? I hope they can help her!" not realizing they were talking about me. I was able to focus on the face of a kind woman, a nurse, who leaned in and said, "We're getting you something to help with the pain right now, and I'm also going to give you something so you don't remember any of this." And from that point on, I'm blank. I don't remember being transferred to my room, or even getting settled in. I have to rely on my husband's memories for that.

Tyler says the surgeon met with him after the surgery and told him that he didn't find an impressive amount of blebs (he had expected a full-blown cauliflower of blisters to be covering my lung), but he did find a lot of scar tissue that had to be removed in addition to the blebs present. He said he sprayed every possible surface with the talc and that my lung would be "rock solid" from that point on.

Once I started coming out of my drug-induced haze, I remember feeling the nagging presence of the chest tube, as well as the foley catheter that wouldn't be removed until the following day. In addition to the chest tube that was hooked up to suction, I had two incisions on my back that had been cauterized and were tender, and I was on oxygen. Things hurt, but the spinal block was doing its job and the pain was "manageable" for a time. By the time the night nurse came in, though, I was ready for morphine. She was hesitant to give it to me because my blood pressure is naturally so low, but the oxycodone they were giving me was doing nothing for the pain. I knew at the very least, I needed morphine so my muscles could relax. Every breath hurt, and unless I could relax, I would never be able to sleep. Once she relented, I drifted off and had a very restless sleep.

Hospital Stay

Day 2 -- Thursday

The morning after surgery I was awoken at 5:00 AM for my first chest x-ray and labs. When a patient is given a chest x-ray, they are asked to take a deep breath and hold it while the picture is being taken. Let me tell you, holding a breath with a chest tube inside me and a newly stapled lung was not my idea of a pleasant wake-up call. An hour later my surgeon came in to look at the drainage in my pleruovac. He tugged on the rubber tubing attaching my chest tube to my trusty plastic box and informed me that I'd likely be going home the next day. I was flabbergasted. I had had lung surgery 15 hours prior and they were already talking about sending me home? (That speaks to the state of health care in this country.) Little else was said and he left. My husband showed up early as well and got me ready for the day ahead. I had a wonderful day nurse, Emily, that kept me sufficiently medicated and had the best bedside manner I could have hoped for. At 8:00 AM, a very athletic looking physical therapist showed up, handed me an incentive spirometer and told me to use it (without first showing me how), and let me know that we'd be starting right after breakfast. An hour later, I begin taking laps around the ward. We set a goal of going on 4 walks each day of my stay. I was ready to go -- I wanted to do whatever was going to get me back on my feet as soon as possible -- so I gladly manned the neon green walker they provided me and with both the therapist and my husband flanking my side, I insisted on doing two laps instead of one.

I had a good amount of Crepitus/Subcutaneous Emphysema on my left side that my nurse found amusing. It was new to me, though -- I hadn't experienced that with my first chest tube. Its most often described as the feeling of crunching Rice Kripsies underneath the skin due to air trapped in subcutaneous tissue. Talk about a weird feeling. Every few hours I'd reach over and gently place my fingers around my ribs and sure enough, it was still there.

I spiked a fever mid-morning. Emily was worried and called my surgeon's nurse. They did a urine culture which came back negative, gave me some Tylenol, and got me up and walking. PT stopped by to see me that afternoon while I was napping and decided to check my oxygen sats because I guess my breathing sounded labored while I slept. I was in the low 80's with a heart rate of 115, so they put me back on oxygen.  My fever finally broke, though, which was a relief. My sister and father were able to come for a short visit right before bedtime, but that meant my husband was at home with the kids and I had to get myself ready for bed. I struggled through the process of brushing my teeth and washing my face and it took the rest of my energy to crawl into bed.

The incisions in my back were really sore and I remembered that the night before, the nurse had rolled me on to my side and propped me up with pillows to alleviate some pressure, so I called the nurses' desk to ask if someone could possibly help readjust my bedding for pain relief. 15 minutes passed before that night's nurse, AJ, stomped in and proclaimed that I did not need a NURSE to help me with something like that. I apologized and let her know I surely did not ask for her rather I assumed they'd send in a CNA to help me. She stomped to the side of my bed, knocking over my pluerovac in the process, and in an effort to show me how busy she was, roughly pushed me onto my side, slamming into my chest tube in the process. She realized what she had done when I cried out in pain and tears began to flow freely. Her response was to quickly shove a pillow underneath my back and run out of the room. I broke down. The pain was intense, I was reeling from the way I had just been treated, I was tired, and I wanted to go home. I couldn't stop myself from sobbing which hurt even more. My whole body shook as I cried, gasped for air, and felt excruciating pain as a result of my sobs which made me cry even harder. I was in bad shape. I texted my husband who wanted to know the nurse's name so he could call the hospital, but I had this horrible fear that she would deny the event, I would be labeled a troublemaker, and because they were short-staffed, I would be stuck with a nurse who was mad at me...the nurse who was supposed to keep me medicated. In hindsight, I absolutely should have reported her. I really believe that event caused some damage that I wasn't even aware of until recently. I have never been so happy to see someone, though, as my beloved day nurse Emily when she showed up at 7:00 AM the next morning.

Day 3 -- Friday

I had another 5:00 AM x-ray and labs and then waited patiently for my surgeon. My husband got there extra early so he could talk to Dr. Affleck as well, but the surgeon never showed. Instead, one of his nurse practitioners came in right before lunch to let me know that after looking at my x-ray and drainage, I'd be staying another day. Part of me was glad that I wasn't being sent home prematurely (which is how I had felt the day before), but the other part of me would have done anything to have that chest tube removed. I had a surprising amount of Both my husband and my sister took shifts visiting me which helped keep my mind off how dreadful I felt and how much I wanted to go home. Emily suggested we do our visiting outside my room for a change in scenery. It was nice just to sit by a window in a bright room for a spell. Each time I would head back to my room at the far end of the ward, I would try not to look to closely at my fellow patients because of how anxious it made me feel. It didn't take much to notice that I was the youngest patient on the floor by at least 25 years. Most of them had very visible scars from their surgeries. I hoped this would be my only lung surgery. Ever.

That afternoon I spiked yet another fever and that evening I became very nauseous. I frantically called for some Zofran which found its way to my IV in record time. Can you imagine vomiting with a chest tube inside you? I, for one, did not want to find out how that felt.

Emily worked some magic and had me reassigned to a different night nurse so I didn't have a repeat of the night before with AJ. My nurse that night was Bailey, and she was great.

Day 4 -- Saturday

Things move slower in the hospital on Saturdays so radiology showed up a couple hours later than usual and no one ever came in to do labs. I had to say good-bye to Emily the night before and my day nurse was now Alexis. She was also the nurse assigned to me right after I was sent up from Recovery. She was quiet and impersonal, but pleasant. That morning I finally felt well enough to let Tyler wash my hair in the sink. Boy, did that feel good! Moments later, the nurse practitioner showed up with the cardio guy on-call who said my drainage looked good and to take me off suction. I knew that was the first step to going home, but I was surprised by how quickly it went. After an hour or so, I had another x-ray that confirmed my lung was behaving properly without being on suction, and a couple hours later, the nurse practitioner came in and announced she was removing my chest tube and I was going home.

She had me lay on my side and like last time, inhale, hold my breath, and bear down as she pulled the tube. Having my chest tube pulled out was much more painful this time. It felt like it took some serious strength on her part to pull it out -- like it was being ripped out of me. I was not prepared for that and I think it surprised my husband, too. I'm not one to use expletives, but if I were, I would have let loose a colorful stream of them.

She showed Tyler how to remove the sutures the following week, gave him some very basic wound care instructions, had me sign some paperwork, told me to call them if my condition worsened, gave us a prescription for enough Oxy to make addicts out of a small army, and sent us on our way.

Tyler drove me home, got me settled, and left to fill my prescriptions. The kids were at my in-laws' so the house was quiet. It was good to be home.

Week Two

That weekend was the 21th anniversary of my sister's death from Cystic Fibrosis. It was pretty surreal thinking about her short 12 years living with varying degrees of respiratory failure as I struggled to breath myself. I knew I would recover and eventually life would go back to normal. She never had that luxury. It made me miss her more, having a small but personal glimpse into her battle. Its true you can't understand what a person endures until you walk in their shoes. I won't presume to understand the depth of pain she experienced, but in moments of this journey, I wish I could let her know how much I respected her fight.



Tyler went back to work that Monday. I was terrified to be left at home alone with a toddler, but he had already been caring for us for the past 13 days. I still couldn't lift my daughter, so I changed diapers on the couch or floor and we watched a lot of television. Tyler came home at lunch each day to check on us and put our daughter down for a nap. I'd get her out of her crib later in the afternoon by pulling a heavy diaper box up to the crib and then putting a booster seat inside the crib for her to step on so she could climb over the crib railing onto the box. It became a game she looked forward to. (I'm lucky I have an adventurous, independent child!) When she napped, I napped, and I would get up right before my boys got home from school.


That week I marveled at how sensations and pain moved and changed with each day. The previous week a huge chunk of my pain originated at the bottom and side of my lung. I assume that was caused by the pluerodesis. Pain was now shifting upward as my chest wall healed. I still had a significant amount of Rice Krispies above my left breast, as it was clear now that the bottom half of that breast was completely numb and strangely felt like it was 30 lbs. I started experiencing back pain at this point as well. I don't know if this was a result of my poor posture during this time or the surgery itself.

14 days post-op I awoke to find that all three of my incisions had split open during the night. We had been keeping a bandage on my chest tube incision that we changed every day, but hadn't dressed the other two ports as they had been cauterized. Those two ports had opened and oozed everywhere and the chest tube dressing was soaked. Upon further inspection, Tyler marveled that my chest tube incision was now a gaping hole, whereas it had looked like it was healing prior to that morning. He was concerned and asked me to call the nurse. When I got a hold of her, she assured me this was somewhat normal and that as long as the wounds didn't look infected, I was okay. She said that they had to heal from the inside out and that it could take many, many weeks to do so. Just keep them dry and clean, and eventually they would heal. This was one of those moments where we felt like the lack of information a patient is given is ridiculous. They could have let us know this was a possibility when they instructed us on wound care at discharge. We had no idea I'd be living with an open wound for months. Tyler decided to close each wound with butterfly bandages and from then on, we kept all three dressed.

That Saturday I was resting in bed when the all-too-familiar pain and pressure of a pneumo washed over me, only this time it was on the right side. I threw my hands up in the air in disbelief. I knew the chances of experiencing a collapse on the other side were real, but I couldn't bear the thought of it happening so soon. I had read online of other post-VATS patients citing similar complaints only to go to the ER and find no pneumo showed up on the chest-xray. I didn't want that to be me. On the other hand, if it was a collapse, my wounds were still fresh (literally!) and the thought of enduring a Round Two of surgery was more than I could handle. I decided to live in denial and refused to go to the hospital. The pain on the right side lasted into the middle of the following week, so chances were good it was a small collapse.