Looking forward to another year of advocating for the IPF community

What happened? Where did 2023 go? How can it be Jan. 2, 2024?

Time seemed to drag when COVID-19 began to ravage the U.S. Many people with rare diseases, including the pulmonary fibrosis (PF) community, were heavily affected by the isolation. And not just patients, but caregivers, too. As life turned upside down, time seemed to stand still.

Life already felt slower for me, as it had since I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF). When I began having difficulty doing my job in fall 2017, I went out on disability. Many of my colleagues who’d promised to keep in touch began to fade from my life.

It’s tough for most people to understand a rare disease, especially when it’s terminal. When I received a bilateral lung transplant in July 2021, I saw it as my second chance at life. Time still moved slowly for me, however, as I was restricted from many activities because of my busy appointment schedule and need to protect my new lungs. It wasn’t until late 2022 that I began to travel and celebrate the second chance my donor had given me.

If you ever had a turntable, you know what it’s like to place the needle on a record and wait for the music. If the turntable’s moving slower than the record’s proper revolutions per minute (45 or 33, usually), the audio sounds like it’s in slow motion. That’s what 2021 and 2022 seemed like to me.

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2023 returned to full speed

The first column I wrote in 2023 was a retrospective look at my journal from the days following my IPF diagnosis. Today, I’m wondering where the year went.

Those 365 days were not free of new medical adventures. Adding an ascending aortic aneurysm and chronic kidney disease to my list of comorbidities wasn’t ideal, but I’ve learned that my health is much more manageable when I’m an active participant on my care team. The life of a bilateral lung transplant patient will always involve medical surveillance.

In more positive news, my wife, Susan, and I took on more travel this year. We love our home, but seeing other walls and views is a welcome change. Our 2023 travels took us to Las Vegas, the Great Smoky Mountains in Tennessee, Orlando, Florida, and Pennsylvania.

We opted for short-term rental properties when possible; one of those in the mountains of Tennessee helped us avoid crowds. Our most unusual stay last year was at a tiny house in Pennsylvania, which was smaller than 250 square feet.

Advocacy and support comprised a big part of my 2023. My weekly column is one way I invest energy into supporting the PF community. I’m also fortunate to host a support group each month where patients and caregivers can come together in a casual environment to ask questions. I co-host a national support group, as well.

Finally, a large part of my advocacy involves spreading awareness and securing support for research that can lead to better therapies and, ultimately, a cure.

Looking ahead

My 2023 wasn’t boring, so I have a sense of why the year went by so quickly. But what will 2024 hold? I can tell you that I won’t hold back on pursuing care, traveling, or advocating for the PF community.

I’m kicking off January with five medical appointments, including my first bronchoscopy of the new year.

Susan and I will travel to Amsterdam in March for a river cruise to see the tulips blooming.

And I won’t be sitting silently on the support front. So much needs to be done in the PF community; I urge you to find a way to make your voice heard.

Not wasting a minute of 2024 is how I can make every breath count.

Which aspects of my pre- or post-transplant journey do you want to read more about this year? Please share your thoughts in the comments.

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.