4 navigation tools that guided me on my journey with IPF

Mariners, for as long as their ships are at sea, rely on navigation skills to safely reach their destination. The tools and techniques they use have improved over time. While some ships may still post lookouts on occasion or use a lighthouse to identify hazards, the process of moving a ship from point A to point B has evolved. If you’ve ever been on a ship, you may have noticed a pilot vessel come alongside to deliver a maritime pilot, the local area expert. Perhaps you noticed an electronic buoy that collects and transmits information to mariners.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2017, I didn’t know anything about the disease. I found myself in a vast, dark ocean with no real idea which way to turn. How would I find my way? I had to develop navigation skills and become familiar with the tools available to me.

There were four things I needed:

• a solid understanding of the disease
• a good care team
• a support system
• grace for myself

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I turned to the Pulmonary Fibrosis Foundation (PFF) to better understand IPF. There is so much information available on the internet, and not all of it is accurate. The PFF educational resources are a curated collection of materials vetted by some of the best medical professionals and scientists in the pulmonary fibrosis community.

It was during this knowledge-gathering phase that I discovered Pulmonary Fibrosis News, thanks to Kim Fredrickson. I had met her virtually through social media and began following her column on this site. Kim passed away in 2019. She was a pilot vessel for me on my journey. Even as I wrote this column, I found myself scrolling through the archives where her writing lives on today.

I connected with the team at Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Clinic during my first visit. They diagnosed me and became the base of my care team. They knew all my specialists outside the clinic and worked together to coordinate my care.

I initially thought building a support system would be the most difficult step. After my diagnosis, some people disappeared from my life. Not everyone knows what to say to someone with a terminal illness. Some left immediately, while others faded away slowly. However, some people stepped up to help in many ways, becoming my village. They covered everything from running errands to attending training to be backup caregivers. This village of 13 people walked every step of the journey with my wife, Susan, and me.

Finally, I quickly learned that as my IPF progressed, I’d be able to do fewer things. Initially, that was hard for me to accept. Diagnosed at 59, I hadn’t expected to need assistance with routine tasks at that point in my life. I had to learn to give myself some grace and to accept help. It did not mean I was admitting defeat.

When I received a bilateral lung transplant in July 2021, there were still tasks I couldn’t do. Because transplant patients are immunosuppressed to prevent organ rejection, I was susceptible to a variety of environmental factors. My gardening skills were always questionable at best, but I had tried to keep a vegetable garden. However, contact with soil was not advised post-transplant. Other outdoor tasks, such as running a leaf blower, were also not recommended due to airborne particles generated by leaf clearing.

The things I can do continue to outnumber the things I can no longer do. This improves my quality of life.

These four steps became the tools I needed to navigate my IPF journey. They have kept me from running aground or crashing into the rocks. Yours may be different, but it’s important to find those tools and learn how to use them. They are key to making 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.