Discovering new ways to find joy in life with IPF
I've had to make adjustments, but this disease will never steal my joy
Joy is a simple three-letter word, but it can be elusive at times for those of us in the pulmonary fibrosis community. Patients and caregivers alike may often feel like no joy is to be found.
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my wife, Susan, and I suddenly had to change many of our plans. As my IPF progressed, we couldn’t do everything we’d intended to do. The things we looked forward to became a little less clear, and some of our priorities had to change. But instead of abandoning the things we loved to do, we adjusted.
Thinking back, I’d have to say that travel brought some of our greatest joy. Then we had our first granddaughter.
Before my bilateral lung transplant in July 2021, and in consultation with my care team, Susan and I scheduled our travel around my appointments and testing. The two types of trips we enjoyed the most were cruises and a good safari. We joked that we only worked to be able to take vacations.
When Abigail, our oldest granddaughter, was born in January 2018, we had three types of travel we enjoyed the most.
Following my diagnosis, we continued to cruise, primarily aboard Celebrity ships. Our most memorable cruise was to the interior of Antarctica, the only continent I hadn’t yet visited. We went during winter in North America and were a little surprised that it was warmer in Antarctica than it was in Washington, D.C.
Susan and I also managed to take a safari tour in South Africa following my diagnosis. We both love the unspoiled surroundings of the bush.
We also made frequent trips to see Abigail. Grandchildren are the perfect excuse to rub the nose of a horse that’s part of the Detroit Mounted Police or to have lunch with Santa.
More adjustments, more ways to find joy
These are just some of the joys we experienced during the pre-transplant portion of my journey. But when COVID-19 came to the United States in March 2020, we had to make another adjustment. I hardly left the house except for clinic visits, other medical appointments, and to exercise by taking daily walks.
We quickly mastered Zoom meetings and enjoyed virtual happy hours with friends around the country. Sometimes we were just talking and catching up on life. Other times we played games like Battleship via Zoom. Travel was out of the question for the time being.
My IPF progression accelerated, necessitating a transplant in 2021. As a part of my post-transplant medical surveillance, I agreed to no unnecessary travel for the first year. Susan and I certainly talked about travel, though, and made plans for the future.
As the end of my first year post-transplant approached, we took a road trip from our home in Virginia to Asheville, North Carolina. It was exhilarating and we enjoyed every minute of it. We took an Amtrak train across the country and back, and we flew from Washington Dulles International Airport to Amsterdam so Susan could see the tulips bloom.
We never gave up on joy; we just had to find different ways to experience it. We likely won’t travel on a large cruise ship again, as being around so many people in such an enclosed space isn’t recommended for a post-transplant patient with a suppressed immune system. In Amsterdam, we took an Ama Waterways river cruise on a smaller ship with far fewer passengers. Next month, we’ll take another river cruise in Europe.
Do not let this disease, regardless of where you are in your journey, steal your joy. You may have to work harder to find it, but doing so will benefit your mental health and, I believe, contribute to a positive health outcome.
Where do you find joy on this journey? Please share in the comments below. Perhaps I’ll learn something from your experience that’ll help me 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.
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