Lung transplant and pain meds: Oh, the things I saw!

Seven years ago, I sat in a hospital examination room in shock. I had just been diagnosed with idiopathic pulmonary fibrosis (IPF) and given two to five years to live. The doctor suggested I get my affairs in order. Then, before I knew it, my care team had begun to devise a plan.

Four years later, after my IPF had progressed to a critical point, I received a bilateral lung transplant.

While staff at the clinic had prepared me for my transplant journey, some of it was still alarming, particularly the hallucinations caused by pain medication.

My care team told me one of the first things I would likely notice upon waking up after the surgery, besides having a breathing tube, was that I would be restrained. They had warned me that hallucinations were likely. I would hear or see things that would seem real, but they weren’t. My mind would play tricks on me, they said. I also learned about the differences between delirium and hallucinations: Hallucinations would primarily involve sensory-type perceptions while delusions alter a person’s preexisting beliefs and thinking frameworks.

Nothing like ever before

In the days following my transplant, I recovered in the cardiovascular intensive care unit. The restraints were not necessary for me so the team removed them shortly after they pulled out my breathing tube.

I did hallucinate, and it was like nothing I’d experienced before. I was both curious and frightened at the same time. One might think that curiosity is a strange feeling to associate with hallucinations, but I was intrigued by how my mind played tricks on me.

The day after Sam’s 2021 bilateral lung transplant, before his restraints were removed. (Courtesy of Sam Kirton)

I heard conversations that weren’t actually happening. Some were in a normal tone, while others seemed angry and threatening. I was convinced that people were talking about me. It seemed personal.

Next were the visuals: I saw bugs crawling on the walls, and it wasn’t just a few — it was an army. They seemed to parade across the walls forever. I knew they weren’t real, but I swore I could see them.

The most complex hallucination involved a Jeep Wrangler parked outside my hospital room. This was perplexing, considering my room was on an upper floor of the hospital!

If you’ve ever seen the front of a Jeep Wrangler, you’ll know that they have a distinctive grill and headlight profile that is easy to spot. In my hallucination, the jeep’s hazard lights were flashing and the headlights were on. It looked real, but how could it be?

Because my team had prepared me for this, I was OK. When I’d hear strange conversations or see something that wasn’t quite right, I’d ask a staff member about it. They’d reassure me that it didn’t exist, which helped to ease my mind.

I did ask my care team to start weaning me off the pain medications as quickly as possible, though. In exchange, I promised to let them know if the pain worsened or affected my ability to rest, which was crucial for my recovery.

As my pain medication dosage diminished, things started to make sense again. The bugs on the walls were actually subtle patterns and textures. They had seemed to come alive because my eyes couldn’t focus.

It took me a little longer to figure out the Jeep Wrangler, but it was a bookshelf with binders that looked like the front grill. A couple table lamps were the headlights. I never did figure out what the hazard lights were.

We are all unique in our journeys. I now feel like I should have shared this long ago to prepare others for what it’s like to be on some pain medications. My hope is you will find something useful here for your journey. Watching out for each other on this journey is how I make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.