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.

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.

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.