Tuesday, June 9, 2015

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.

Monday, June 8, 2015

The Frustrating Fifth

On April 24, I woke up with pressure behind my left shoulder blade. I rolled my eyes and got out of bed so I could get my kids off to school. An hour later as I was blow-drying my hair, I noticed the pain was increasing and my breathing was becoming labored. It was more intense than my previous three, but not nearly as painful as my first collapse. A nagging feeling told me I should call someone to come watch my toddler so I could go to the hospital, but I kept pushing it aside and went on with my day. That evening, I let my husband know that we may want to think about making another trip to the ER, but I never made time for it. The next morning I felt quite a bit better. Tyler still wanted to take me in, but I continued to drag my feet. I have a lovely friend who is a physician, and I finally decided I'd ask her opinion. If she told me to go the hospital, I would. This is the text I sent her:

"Need your advice.
Since my pneumothorax in September, I've had 3 other occasions where I've felt pain that presented itself identical to my first pneumo but with significantly less intensity and almost no compromise in my breathing aside from having some difficulty taking deep breaths. In each of those situations, a few days to a week's rest was enough to get me back to normal. Yesterday I woke up with chest pain. Didn't say anything to Tyler about it and hoped it would subside. It was pretty intense all morning--steady pressure on my left side, some SOB, dizziness, pain when I breathed deeply, pain radiating up my shoulder and neck, and the odd sensation that I could feel something bubbling or rubbing at a specific spot in my chest when I bent over (this happened the first time, too). I told myself the smart thing to do would be to go to the ER, but I'm stubborn and stupid and didn't. The pain eventually subsided, though the pressure remained, and I kept a low profile for the rest of the day. Had a hard time falling asleep, but when I woke up this morning, I felt markedly better. If I'm resting (and not laying down), I'm pretty much fine except for a dull ache in my back at the base of my left shoulder blade and some pressure in the front under my left breast. I don't feel like my breathing is all that compromised. Just a little resistance when I breathe deeply. I'm fatigued but not dizzy. I can still feel the strange bubbling when I bend over, but even that is not as pronounced as yesterday. I do not feel like my life is in jeopardy. (In fact, I just did the dishes and changed a diaper) I hate the thought of going to the ER when I'm not "that bad," but am I being irresponsible by not? I highly doubt my current condition warrants a chest tube, but I obviously am not a doctor, nor do I have the chest X-rays to prove that. If I feel like I have measurably improved since yesterday and am not getting worse, do you think I'm okay to wait it out, or should I bite the bullet and go? "
She called immediately. She let me know the "bubbling" I was feeling was subcutaneous air in my chest cavity. She was concerned about the frequency of the collapses and pointed out that I couldn't really know how severe the collapse was because my body could be learning to adapt to side-effects of the collapses. She acknowledged my desire to not overuse medical resources, but told me she was going to contact the on-call pulmonologist at our University Hospital to see what he said. When she called back, she told me she had explained my history to him and that he recommended I go to the ER for a chest x-ray. In their opinion, five pneumothoraces definitely warranted some follow-up care, most likely surgical, and I needed to have a paper history in order to receive that referral. My friend said she was calling the ER to let them know I was coming and then heading over to pick up my kids so Tyler could drive me to the hospital.
An hour later the ER physician came in and let us know that the x-ray showed another spontaneous pneumothorax. He said it likely had been larger the day before (and that I should never wait to seek medical care for something like that because it is potentially life threatening, etc., etc.). At the time of the x-ray, it was not large enough to require a tube, rather I'd be sent home with oxygen therapy and more rest. They paged the cardio-thoracic surgeon on-call, and I was instructed to make an appointment to see him that Wednesday to discuss options.
The oxygen machine arrived that night, and from then on, I was stuck at home with a 50-foot plastic leash.

Meeting the Surgeon

A few days later, Tyler and I met with Dr. David Affleck, cardiothoracic surgeon at St. Mark's Hospital. His nurse practitioner was excited to be meeting with someone so young -- I guess their average patient is quite a bit older. My first impression of the surgeon was mixed. He seemed a little abrupt, perhaps a little cocky, and his answers to my questions were a little too cut and dry. Tyler liked him, though. Thought his confidence was reassuring. He explained that the culprit behind these collapses were likely something called blebs -- blisters of air on the surface of my lungs. I may have been born with them, they may have grown at some point in time, but when they pop, air is released into my chest cavity which creates pressure and causes my lung to collapse. The fear is that as this continues happening and my lung becomes weaker, one of these spontaneous pneumothoraces could quickly turn into a tension pneumothorax which is very dangerous and often quickly lethal. His suggestion was to perform a surgery called a bleb resection where he would go in and remove all the blebs he could find on that lung and any compromised tissue and then staple everything shut. After that, he would do a procedure called chemical pleurodesis. He would spray medical grade talc all over the inside of my chest cavity. This would essentially burn the inside of my chest, causing significant inflammation. As it healed, my lung would scab to and eventually adhere to my chest wall so that if my lung were to collapse again, it could not do so catastrophically. He said they would do this via VATS: video-assisted thoracic surgery, but that I needed to be prepared that it could potentially require a thoracotomy. He warned me that it would be extremely painful but that I should be back on my feet in a couple weeks. I had done a little research prior to our appointment and read other patients complain about chronic or long-term pain, but he quickly dismissed this as extremely rare.

They wanted to do the surgery the following day. I dug my heels in and said "no way." Not only would preparing for such a surgery take a little time -- I had three kids to worry about here -- but I had a massive school fundraiser that I had devoted a significant amount of time to, and I was determined to see it through. Two weeks. I would have the surgery on May 13.

I was nervous after leaving the office. I was putting the fate of my respiratory system in the hands of a guy I had just met and didn't even particularly like. I wondered if I should get a second opinion, but at 35, its not like I have a lot of friends that have the name of a good cardiothoracic surgeon in their phone contact list. I happened to have an appointment with my OB/GYN that week -- a very well connected doctor whom I trust implicitly. When I asked her about Dr. Affleck, she gave a glowing recommendation, saying she had known him since she was an intern and that he was a brilliant surgeon and she wouldn't hesitate to let him operate on her. I decided to take her word for it and stick with him.

The following week was the school fundraiser. I had to try to squeeze surgery prep into any spare moment. It was such a chaotic time that by the Friday before my surgery, I was sick with a head cold, terrified that the illness would derail my plans. My sister was flying in from Denver to watch my kids, so I simply could not move the procedure date. My husband sent me to bed to rest all weekend.


My pre-ops were scheduled for Tuesday the 12th. I was registered, received my hospital bracelets, had blood tests, an EKG, and a chest x-ray. I met with the Admit Nurse who provided me with my surgical instructions, the anti-bacterial soap I'd need to wash with, and the paperwork and brochures they're required to send home. She also told me what to expect of my surgery day and encouraged me to warn my husband so he would be prepared as well. She said the surgery itself would take approximately 2 hours. I would not be sent to recovery, rather I would be taken immediately from surgery to the ICU where I would be for the entire day and overnight. While in the ICU, I would be intubated and restrained (in case I woke up and started pulling out tubes) and would remain asleep until they were able to successfully wean me off the ventilator. My husband would be allowed in the room for 30 minutes every two hours, but no one else could visit until I was moved. When I was stable enough, I would be moved to the heart/lung unit and could expect to stay there until at least Sunday, but likely longer.

I left the hospital with bracelets and a masked smile. In reality, I was terrified. No one said anything about intubation or restraints! The surgeon had mentioned the ICU, but only as a matter or getting more individualized care. I had to keep both hands on the steering wheel driving home to keep them from shaking. I spent the rest of the day with a lump in my throat until I picked up my sister at the airport that evening.

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.

Sunday, June 7, 2015

Week One

That night, I became cognizant of my new reality. I ate very little for dinner as I still wasn't hungry. I began noticing how much I had relied on morphine as a source of pain management. I was sent home with a prescription for 10 mg of Oxycodone every 3 hours. By the time 3 hours rolled around and I was allowed my next dose, every single nerve in my body was on fire, and I had spiked another fever. I was exhausted, so my husband helped me into bed, which proved to be another challenge. Our bed is rather tall, and I required a step stool and Tyler's steady arm to get into bed. Once I was in bed, however, it was a chore to get comfortable. We gathered every spare pillow we could find and piled them behind me so I was almost sitting up, then put pillows on either side of my body so I could rest my arms and keep them away from my incisions. I found it harder to breathe when I was lying down, so I adopted this position for sleeping for the first week. I took a nap, and when I awoke, it was dark. I heard Tyler downstairs watching a movie and felt like joining him, so I took it upon myself to crawl out of bed, shuffle to the stairs, and then very slowly take one step at a time until I reached the bottom. When we went to bed that night, we repeated the process of getting me into bed, getting me comfortable, etc. He said he laid awake that night listening to me trying to breathe -- very shallow, very fast -- and was worried that I would stop breathing. He got up through the night to make sure I kept to my medication schedule. (Its important to keep ahead of the pain!) It was a long night for both of us.

The next day was quiet. I felt miserable. Everything hurt -- Walking hurt. Coughing hurt. Using my left arm hurt. Breathing hurt. Tyler washed my hair while I leaned over the bathtub and that hurt. But I was glad to be home. My kids came home that evening after not having seen me since they went to school Wednesday morning. My 2 year old wanted nothing more than to crawl up onto my lap and she wasn't too happy about the new edict that she sit next to me instead of on my lap. I felt guilty that I couldn't help get them ready for bed, but I was definitely anxious to go to sleep myself. When I was asleep, I didn't notice the hurt.

Monday was the beginning of the last week of school. Tyler was taking another week off work to care for the toddler and me, and neighbors continued to bring the older kids home at the end of the day. Monday was my first shower since Wednesday. I wish I could say it was delightful, but my muscles were so sore, shampooing my hair was a challenge. Neighbors began bringing in dinner, which we so appreciated as Tyler definitely had his hands full.

The pain continued throughout the week. I started getting very impatient with how long it was taking to feel better. In hindsight, I find it amusing that I was so frustrated at week one, considering how many weeks ultimately had to pass in order to start finding relief. I did everything they told me to do, and yet I still felt like an invalid.

I was told to take daily walks as part of my recovery, so I shuffled around the block each day with Tyler at my side. Always in my pajamas, I couldn't make it around the block without stopping to rest. Neighbors would wave from their windows, or come out to chat, which wore me out even more. Tyler was good about making sure my lungs got that much needed exercise and we joked that he was "walking his wife instead of his dog."

 I was also told to use my Incentive Spirometer every hour that I was awake -- 10 puffs. I hated that thing. You blow all the air out of your lungs, create a seal over the mouth piece and then very slowly inhale and hold the top of your breath for a number of seconds. When you're days out of surgery, that's easier said than done. Try as a I might, I couldn't get past 1500 when my husband could hit 5000 without blinking an eye. I still find the name pretty funny, because while the idea of breathing well should be incentive enough to use it hourly as prescribed, it's NOT. You want to incentivize it? Send me home with a box of artisan dark chocolate and the mandate that every time I use the spirometer, I can eat a piece. Think of how quickly my lung function would improve! (I actually suggested this to a doctor friend and the next day she showed up with a sleeve of Dutch dark chocolate!) 

 My best friend had a baby on Wednesday morning, and I was intent on finishing a quilt I had been making for her. I'm not quite sure how I managed it, but I spent a couple hours at the sewing machine that day, and then another couple hours on the couch hand-stitching with the intent to visit her the following day. On Thursday, Tyler took out my stitches as he had been instructed to. He thought it would be a great idea (for my emotional well-being) to get me out of the house, so he took me to the hospital to visit my friend. I wore a mask just to be safe. I was in my pajamas with no makeup, so I'm sure I blended right in. It was my first trip out, but I felt like I did pretty well. The funniest part of the visit was when a lab tech came in for one reason or another and the conversation turned to the difference in food service between the University Hospital where my friend had given birth and St. Mark's where I had my surgery. The guy said his wife was a nurse at St. Marks and that he used to work there as well, and when he heard what unit I had been in, he asked who my nurses had been. I listed them off, and he exclaimed, "Oh, AJ is great! She's the best ever!" I kept my mouth shut but made sure to make eye contact with my girlfriend who had already heard the story. When he left, we broke into laughter...which, of course, hurt.

I was exhausted when I got home, but I needed a refill on my pain meds so I called the office and talked to a nurse practitioner. She asked how things were going and I told her that quite honestly, I was surprised by how painful things had been. The surgeon had told me during the initial consultation that I'd probably be down for a week or two. With the first week coming to a close, I didn't feel anywhere close to resuming my daily tasks. She assured me that it was a rough surgery to recover from, and that being as young as I am, I may have assumed I would bounce back quicker. In reality, I just needed to be patient and it could take many weeks to feel significant improvement. She prescribed Ibuprofen in addition to the Oxycodone to help with inflammation, but wanted me to cut back to 5 mg as soon as I could.

My Facebook status update that week said the following:

6 days post-op.
I'm constantly hunched over.
I shuffle when I walk.
Elastic waistbands are a must--the stretchier, the better.
I drink a glass of Miralax every morning with my breakfast.
My day revolves around my pill and nap schedule.
I can't wear a bra, but I will coordinate my cardigan sweaters with my pajama pants.
If you ask me how I'm doing, I'll tell you all about where I hurt.
I need help getting up off a couch, a chair, out of bed, etc.
"Going for a walk" means I'm going to shuffle to the corner, turn around, and shuffle home.
The most exciting part of my day is getting the mail.

I went in for thoracic surgery. I came out a 95 year old woman.

That pretty much sums it up.

Saturday, June 6, 2015

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.

Friday, June 5, 2015

Week Three

I worked hard to walk a little further each day. Sometimes we'd bring the kids along, but most of the time, we'd go out after the little ones were in bed. I felt a real accomplishment when I could finally make it around the block without stopping or slowing my pace. On Memorial Day weekend, I needed to get out of the house so we took the family to two local cemeteries, just to look around at the different headstones. I found myself walking up and down small hills. It was great exercise for my lungs! I was grateful for the few grave markers that were actually benches and told my sons to think about doing the same thing when they bury me. I felt like things were really turning around. Like improvement was actually happening. It buoyed my spirits. I was slowly starting to wear a little makeup and leave the house more often. The following Monday was our wedding Anniversary and I actually surprised my husband by getting a babysitter and making dinner reservations. It was the first time I had worn something other than pajamas or athletic clothing since the surgery, though still no bra. I tried, I really did, but was so unbelievably painful, it only lasted 60 seconds. Still, even without a bra, we had a great time, being out, being together, and shedding our caretaker/patient roles.

Then two days later, I crashed.

I woke up with a very pronounced bubbling sensation in my left lung. It felt very much like subcutaneous air. It was so pronounced, in fact, that when you placed your hand over my chest tube site, you could physically feel it click or bubble. It got worse when I was lying down and the annoyance of feeling that "click" with every breath began to keep me up at night. I started experiencing some milk shortness of breath, and I was very fatigued. It was as if I took three steps backward in my recovery. The only explanation I could come up with was that I had an air leak, only I knew there was probably nothing that could be done about it. I had to believe this wasn't part of my new normal.

Thursday, June 4, 2015

Week Four

Tyler convinced me to call the nurse on Wednesday. I told her about the bubbling, the click, and the added fatigue. I had a surgical follow-up scheduled for the following Wednesday, but she asked that I come in that afternoon instead. I was to go get a chest x-ray first and then head upstairs for my appointment.

20 minutes before we were going to leave for the hospital, the office called and said the doctor needed to leave so I was to go see him before having the X-ray done. I found this strange, but I obliged. The nurse (a different nurse than the one I had talked to on the phone during my recovery up to that point) brought me back and asked how things had been going. I began to tell her how rough it had been, particularly over that past week, when the surgeon came in. He did no physical examination. He did not have any x-rays to look at. He didn't ask how I'd been feeling. But he did proceed to tell the nurse that I should be classified as PRN and for all intents and purposes my surgery was a success and I would only need to be seen from that point on if the other lung collapsed. He readied himself to leave and I brought up the concerns that had led me there in the first place. I told him about the bubbling and clicking and he put his hand on my abdomen (not my chest tube site) and after 2 breaths said, "I don't feel anything." I asked if I should see a pulmonologist and he laughed and said, "Pulmonary doctors see patient that have ongoing issues. You do not have ongoing issues, so no." I asked if any physio therapy would be useful. He said he had never prescribed therapy to a VATS patient, so no. I asked about pain management since I was still experiencing a significant amount of pain. He responded, "You're 28 days into recovery. You need to be well now. I'm not going to prescribe you any more pain medication. Manage it at home with Tylenol or Ibuprofen." I asked him how much longer the pain would last and his response was that it's likely all nerve damage at this point so I just needed to get used to it. (Rewind to our initial consultation when I asked him point blank about the potential of long-term pain and he said "none.") And that was it. After that 5 minute appointment, he said his goodbyes and left the room and I headed downstairs to have my chest X-ray.
I left the hospital feeling very defeated and alone. All I could think about was that there were things going on inside my body that didn't feel right and I had not been heard by the person who was supposed to make it right. And on top of that, I was living and breathing with consistent, unrelenting pain, and I was essentially being cut-off from the only thing that made it bearable.

That night I joined a couple pneumothorax boards on Facebook. I found reading other people's experiences to be very encouraging. It allowed me to feel like where I was in my recovery was completely normal. After posting my own experience, I was told that I was still very early in the recovery process and could potentially have months ahead of me before things really improved and to hang on. I also learned that chronic pain following these procedures is much more common than I was led to believe.

But that didn't change the issue of my personal pain management which consumed my thoughts. I kept reading in medical journals and articles that pain management is absolutely reasonable for 8 weeks following thoroscopy, yet I was cut off at 4 weeks? I had no desire to damage my liver or live dependent on medications, but I also wanted to be able to function during the day and sleep at night. I decided it was more important to sleep, so I was reserving my remaining oxycodone for nighttime and attempting to go through the day taking Ibuprofen only. By lunchtime I was really hurting, and by the afternoon, the best I could hope for is to lay in bed and cry. By Friday, I was panicking and texted my physician friend with an update and the following question: Should I go to my PCP for support, or do I just need to learn to live with the pain like the surgeon said, even if my quality of life is being drastically affected? She called immediately, irate. She said it's not my responsibility to fight for appropriate medical care and that it's a travesty that I had received no follow-up care from the first pnuemo until that point. She said she was calling my PCP to discuss everything that had happened up to that point and minutes later texted me saying my PCP would like to see me and was reviewing all the notes and X-rays to figure out the next step for me. Within moments, my PCP's MA called to schedule me for an appointment 30 minutes later. My girlfriend drove over 10 minutes later, loaded me and my kids into her vehicle, and drove me to the clinic.

Good friends like that are worth their weight in gold!

Wednesday, June 3, 2015

Handing it Over

30 minutes later, I was sitting in an exam room at my PCP's clinic. The walls were covered with children's drawings and coloring book pages. A far cry from the surgeon's office. She came in and expressed sincere concern, asking me to explain things from the beginning. After hearing my version of the story, she proceeded to listen to my breath sounds. She could hear and feel the click at my chest tube site! It wasn't in my head! She asked to look at my incisions. She was baffled that they hadn't healed yet and equally baffled that no one bothered to look at them during my surgical follow-up on Wednesday. Having never received a call from the surgeon's office regarding my last X-ray, she read me the radiology report: Small apical pneumothorax present. Wow. Call me crazy, but it seems like that would be pertinent information to have, especially considering how terrible I had been feeling. She said she would be calling my surgeon that afternoon and encouraged me to do the same (because doctors and patients often get different stories). Her biggest concern was making sure I was comfortable and not in an unnecessary amount of pain so that my body could properly heal itself. I was prescribed an additional month's worth of Oxy as well as Gabapentin, a prescription specifically meant to target nerve pain/damage, in case that really was the source of a lot of my pain. I left the office feeling validated and reassured. On the way home, my physician friend explained that that's what PCP's are for: to act as the middle man and make sure that all the specialists are doing their job so that the patient gets the best care. I received a phone call soon after I got home telling me that my PCP spoke to a nurse who said persistent, significant pain is normal for 6-8 weeks following VATS, and that it's not completely uncommon to have a pnuemo following surgery, but that maybe I should get a follow-up X-ray the following week. I was again encouraged to call for myself, which I did first thing Monday morning.

That evening, Tyler was taking the kids camping and my parents had offered to watch me in his absence. My mom picked me up on her way home from work and took me to the pharmacy to fill my new prescriptions. She grabbed takeout for dinner, we ate, and by 7:00 pm, she commented how exhausted I looked. I was sent to bed and had an unusually restful sleep, only waking up once for a pain pill. It's amazing how our physical health can be affected by our psychological health. I couldn't be more grateful for my good friend who took action and my doctor who so swiftly saw to my needs.