My wife, Susan, and I have traveled the world by train, plane, boat, and automobile, finding new adventures. We are currently in Amsterdam. This is my first overseas trip since 2019.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my care team encouraged me to live my best life. We did that, including trips to places that Susan and I wanted to be able to visit together.
When COVID-19 struck, my care team advised against unnecessary travel. Additionally, my IPF started progressing faster. I was approved for a lung transplant in March 2020, but it was postponed due to the pandemic. A year later, I went public almost on the same day. I underwent his bilateral lung transplant in July 2021, which restricted his travel for an additional year.
preparation
We’ve traveled to all seven continents, been on countless cruises, and consider ourselves seasoned travelers. I usually get excited before a new adventure, especially if it involves traveling abroad. However, preparing for this trip as a post-transplant patient was a completely different experience.
I made arrangements to meet with the kidney care team, heart surgeon, and transplant care team in early March. All of them taught me things to be careful about when traveling abroad.
I am immunosuppressed to reduce the risk of my body rejecting my transplanted lungs, which makes me more susceptible to illness. Despite being vaccinated against influenza and the new coronavirus infection, RS virusWear a mask while flying and in crowds.
I have no intention of sitting through a 7 hour flight due to swelling in my lower legs. Walk up and down aisles or otherwise keep your feet elevated for as long as possible. Anticipating the need for a high position, I splurged on business class seats that allow me to lie down during the flight.
Packing for a post-transplant vacation requires some concentration. (Photo courtesy of Sam Carton)
The hardest part of packing for this trip wasn’t deciding what to wear, but figuring out all the medications I would need.
My care team’s guidance was clear. “Be prepared for the unexpected.” Pack twice the amount of medication you think you will need.
I did just that and prepared 20 days worth of medication for a 7 night cruise.
Additionally, I asked my care team to prepare a letter listing all my medications. During the cruise around Australia and New Zealand, local authorities met with all passengers carrying prescription drugs during the ship’s immigration process. Travel documents suggested that some countries require prescriptions to be carried in their original containers.
When we left our home in Virginia to leave for our trip to Amsterdam, we double-checked to make sure we had all the medications we needed. There were also plans to adjust medication schedules to accommodate time zone changes.
Why Amsterdam?
My IPF journey has impacted both of us’ ability to travel, especially internationally. When Susan took on the role of caregiver, she sacrificed a lot. A few years ago, she said she wanted to see tulips bloom in Amsterdam. On this trip she will be able to realize her dream.
What we are riding is AmarusiaDepart from Amsterdam and stay for 7 nights.tulip time” River Cruise. This ship carries 156 passengers, so it’s different from the big ships we’re used to. Two days before we flew to Amsterdam, we received a photo of the tulip fields we were about to visit in full bloom.
Next week, I’ll tell you more about sailing on a river cruise as a post-transplant IPF patient. I started taking notes from the day I left so that I could report back on this vacation. I want you to ask me questions. Feel free to post in the comments. Sharing my experiences allows me to continue to cherish every breath.
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 related to pulmonary fibrosis.
