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.
About the Author
Janie Miller
Hi Sam, Thank you so much for your article about joy. I needed that. 🙃 I was diagnosed in 2017 with progressive fibrotic NSIP (non-specific interstitial pneumonia). I used oxygen off and on in the beginning, but I have been fortunate enough to have been stable for a couple years. During this time, the depression I battled pre-diagnosis went kind of crazy. I’d get out when I could during the day, maybe go have lunch at an Applebees and read a book.
My life completely turned upside down with the diagnosis. I’d already moved an hour away from my high school aged children and my best friend due to diagnosed daily refractory migraines that had started in 2010. Prior to this, I was a social butterfly, participating in so many things that brought me joy. My job as a cashier and building my practice as a Life Coach, weekly poetry group meetings (we called ourselves The Poetry Tribe), as well as arts and crafts of many different kinds. I became busy nearly every day of the week doing something fun.
It was the daily migraines that really turned my life completely upside down, and the NSIP that flip-flopped it over and back again. And joy? That would be my two children. But I definitely have to say, had I not started in weekly therapy in 2013, I’m not sure how I might’ve managed everything. Eventually I came back to art. It also became therapy for me. Collage, painting and colored pencils. Those were my things.
For the longest time, I met my (hour away) best friend half way for lunch or dinners. Even after NSIP was diagnosed. Although now, and for the last couple years, I slowly began missing more and more lunches and dinners, attending only the health appointments and lab work. Now I’m missing so many Dr and lab appts it’s difficult to keep up. We do keep in touch, my best friend and sometimes my kids via video chats. Thank goodness. But joy? Now? I’m not sure I’d know.
Within the last couple months I have been lucky enough to have a family friend,Jill, become my chore provider. She’s here 12 hours a week. And she’s worth her weight in gold! She’s quite good at talking to me about my attitude. After chatting a bit, she gives me great ideas. Most recently we’ve talked about me picking up my art again. Colored pencils or needle point? I can’t go wrong either way. Or both.
I mentioned to Jill that I feel like Ive turned into such a Negative Nellie. She reminded me that up until my couple day hospital stay with pneumonia about 10 days ago that I was hadn’t been a “Nellie”. But she also pointed out that it’s no wonder I feel the way I do. And that it’s completely understandable.
So here I am, recovering, making it thru until the pulmonologist appt next week. One moment at a time. That’s something I taught in my coaching days. Sometimes it’s “one day at a time” that gets us thru. Other times, it’s necessary to break it down further to one hour at a time. Half hour or 10 minutes. Presently though, I’m working diligently to keep “one moment at a time” in mind. I need to think of something kind, funny, or sweet in this moment and worry about the next moment when it comes.
Janie
Nancy Lehman
Sounds like you are still doing what you love and are able to deal with your IPF. Good for you. Not all of us are well enough to take trips. I was diagnosed in 2014 by a wonderful Dr in Prescott Valley AZ. It didn't become active until 2019. I am in the last stages now. I have lost 42lbs without trying. I take great pleasure in the simple things in life. My husband, is my caregiver. He and my security dog Bailey make my life enjoyable. God Bless you and hang in there.
John Gould
I have IPF - keeping joy in survival mode takes intentionality, with me interestingly enough I've lost much physically I can do as I was a competitive tennis player and did tons of improvement projects and repairs, even lifting things including full gallons of milk. I am a CPA and am still able to work full time with O2, thank God. Gives my wife and me times away from my IPF focus and allows us to interact with others and feel somewhat normal. I thought I'd miss my tennis and other physical things I can't do anymore, but surprisingly I don't as it is like my mind automatically accepted my physical limitations. I am 69 and have 24% good lungs left. We live in Portland Oregon, our adult children live in Idaho and Pennsylvania, 5 yr old granddaughter in PA too and 7 months old grandson in PA too. My prognosis is less than 1 year to live. At 2 years to live I applied for a double bilateral lung transplant through the VA, after 4.5 months of testing, etc I got on the transplant list July 2nd. Being on the transplant list we can't travel more than 4 car hours, so we can't visit our children or grandchildren - breaks my heart. FaceTime isn't the same as hugging our children and grandchildren nor anyway as good as playing on the floor with our grandchildren.
I find I am finding joy in small things I was to busy to really notice before, like blue sky, flowers, open parking spots, my daily devotions with God, doing things I did without thinking before, meeting people, phone calls, facetime, etc.
My wife and my life has become much more a caregiver to a patient, we don't get out much at all as I have avoid group settings (even restaurants) as if I catch something that gets into my lungs I'll be in the hospital. Looks like I'll be on the waitlist (which it looks like will be 2 years until my lungs are bad enough to get "to the top of the list" for a while. Outside of college and NFL football and grand slam tennis matches, I'm not made to be a couch potato, but my recliner and I are spending much more time together - found that Gunsmoke is a really good TV series, I never watched it when it was on TV wasn't into westerns.
Thanks everyone for sharing on keeping joy in our lives and things you do to pass the time.
Joy
How can my brother get access to free medical care, his IPF is making him fall ill and always on hospital admission. His ritumax injection is 1 .5 million naira every quarter. Any advice or help from NGOs will be highly appreciated 🙏