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.

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.

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.

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!