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!

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