Answering the door when opportunity knocks

Writing “Make Every Breath Count” for you each week is an opportunity for me to share my journey, which is a form of therapy for me. It’s an outlet to process my experiences with idiopathic pulmonary fibrosis (IPF) and receiving a bilateral lung transplant.

Recently, my column opened the door to another opportunity for me to share my journey and raise awareness about IPF and organ donation outside of the pulmonary fibrosis community.

Opportunity knocked, and I answered the door.

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Telling my story

I was introduced to GeNienne Samuels, a journalist and community anchor at WTVR in Richmond, Virginia, after writing a column about AlloSure Lung, a predictive surveillance test my care team uses to look for early signs of post-transplant organ rejection. I think we clicked right away. I had a story to tell, and she wanted to tell it. I shared some of my story via phone calls and email. We finally met in person on the morning of July 9 at the National Donor Memorial.

That Sunday morning was my annual visit to the memorial to mark the date and time I received the call alerting me that donor lungs were available. It was the second such visit since my transplant. It was a time for my wife, Susan, and me to sit among the donors’ names, although my donor is unknown to me. As you might imagine, it is an emotional time.

We spent more than an hour together, along with photojournalist Brad Wilson. Parting ways that morning, I agreed to send more photos from my journey for them to use in building their story. The following day, I received a text message from Samuels letting me know that they were going to preview the story on the 6 p.m. newscast.

That was on July 10, the two-year anniversary of my transplant. The preview ran a little over two minutes. I have never been prouder of someone else’s work.

Shortly after that, the WTVR team traveled from Richmond to Inova Fairfax Hospital to interview Dr. Shambhu Aryal, the medical director of the hospital’s lung transplant program and a member of my care team. In subsequent weeks, the WTVR team, now joined by a second photojournalist, Mandi Irvin, visited our home, spending an additional four hours taping interviews to complete the story.

Reflecting on this experience, I began to add up the time, which I believe is more than six hours of taped interviews.

Building a story with the news team from WTVR. (Courtesy of Sam Kirton)

What could we possibly talk about for six hours?

I wanted to share every aspect of this journey that I could. We talked about my diagnosis and all the testing to qualify and prepare someone for a transplant. We discussed the transplant process and what life is like afterward. We conversed about the isolation brought on by the COVID-19 pandemic and how Battleship — yes, the game — played a part for me in maintaining social contact.

There were conversations about advocacy and education, the role of a Pulmonary Fibrosis Foundation Ambassador, my column here at Pulmonary Fibrosis News, my care team, and organ donation. Finally, Susan and I spoke about our love for our village, those people who have stood with us during this journey and are still with us today.

Samuels had done her homework, and many of her questions were based on something she had read in my column. We discussed several pieces I’ve written.

On Aug. 16, Samuels will field anchor the evening’s newscasts — at 4, 5:30, and 6 p.m. — from the National Donor Memorial to talk about the importance of organ donation and to highlight that August is National Minority Donor Awareness Month. My story is slated to air during the 6 p.m. newscast.

I have not yet viewed the final report. But I have seen the passion of the WTVR team in gathering the facts for this story. I’ve also watched other stories Samuels has aired at WTVR, and I’m excited about this one.

I’d like to invite you to watch it with me. In the Richmond area, you can see it via the station’s broadcast. Evening newscasts are also livestreamed. (Click on the “Watch Now” button at the top, right corner of WTVR’s homepage.)

Let me know what you think and how you feel about answering the door when opportunity knocks. You can also use the story as a tool to help others understand your journey. I’m so glad I answered the door so that I can 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.