Lung transplant and pain meds: Oh, the things I saw!
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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.
![](https://pulmonaryfibrosisnews.com/wp-content/uploads/2024/01/The-day-after-transplant-July-2021-285x380.jpeg)
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.
Comments
David Ota
Ha Ha Ha. I had a DLT in 2016, while I was still out from the initial surgery, with the breathing tube still in, I listened to entire episodes of Gilligan's Inland. Specifically when they are switching brains between the different characters. It was so vivid and entertaining that I thanked my wife for playing Gilligan on the TV because I knew she did not like the show. Sadly it was all in my imagination.
Samuel Kirton
Hi David,
Thanks for reading my column and for sharing your experience. The mind is incredibly powerful and the power it has to unleash experiences that are not real.
Sam ...
Nicolette Shepard
Thank you for your story. I hope that very soon get my lung transplant. I'm on the list and still positive but oh so ready for everything and hoping to breathe easier again. Thank you
Samuel Kirton
Hi Nicolette,
Thanks for reading my column ands for your note. Please come back on occasion and let me know how you are doing. If you have questions during your journey please reach out here.
Sam ...
Regina Bolyard
That was fascinating! I have heard of post op and ICU delirium and hallucinations, but have never heard a patient’s recollection of either. Thank you for sharing!
Samuel Kirton
Hi Regina,
Thanks for reading my column and for your note. Experiencing it is unique and unlike any I had ever experienced before.
Sam ...
Karen Carns
Another good read, Sam! Seemed like we missed a week or two but I guess you put it out there and we just plain missed it!
Continue to be the trooper you are and look forward to seeing you both before too long again!
K & J
Samuel Kirton
Karen and Jim,
Thanks for continuing to read my column and for your note. Thanks for noticing the missing week. In the business of writing for a publication like Pulmonary Fibrosis News timing is everything.
Sam...
Catharine Grannan
Hi Sam,
Thank you for your column, my husband is 59 and has been diagnosed with ILD, currently on OFEV to slow down the progression. I was surprised to read when you were placed on the lung transplant list you received your bilateral lungs in just 4 months. From everything I read it can take 2 to 3 years. Thank you for all the information when going thru the surgery process. This is still new to us and very scary for me, taking one day at a time with a positive attitude.
Samuel Kirton
Hi Catharine,
Thanks for reading my column and your comments. I am not certain where you are located or if you are being followed in a transplant center. How long a patient waits for lungs has many different factors. My care team at Inova Fairfax Advanced Lung Disease and Transplant Center told me it would be approximately three months knowing my condition and what the requirements would be for a successful lung transplant. Please return and let me know how you and your husband are doing.
Sam ...