My 5th lung transplant anniversary is a significant milestone

I feel like I’m in a long scene from the classic movie “The Neverending Story,” and the dark force is shingles. As I write this, I’m still hospitalized while my care team works to address the complications of this infection in a post-transplant patient.

I’m determined to write this week to celebrate being alive! In the coming days, I’ll also celebrate the anniversaries of two events that changed my life.

I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017. At the time, I wasn’t familiar with the disease, but quickly learned that the road ahead would be challenging. Fortunately, my care team had a plan that included evaluating me for a lung transplant. That brings me to this week.

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On July 9, 2021, about 14 weeks after I’d been listed for transplant, my care team called a few minutes after 9 a.m. to tell me that lungs were available. Unless you have waited for that call, it’s difficult to understand the level of anticipation I felt every time the phone rang.

Five years later, I still remember the voice on the other end of the line. I asked her to hold while I called for my wife, Susan, to join me on the phone, and she then gave us instructions. When we hung up, we paused to pray for my donor and their family.

Every year since, on July 9, I drive to the National Donor Memorial in Richmond, Virginia. While I don’t know anything about my donor, I sit among the many names engraved at the memorial during the hour I received the call about my new lungs.

Provided I am discharged from the hospital in time, I intend to be at the memorial again on July 9. I’ve written to my donor family, but haven’t received a response. Perhaps one day they’ll be ready to respond. Until then, I’ll continue to honor their gift by sitting silently with my donor.

On July 10, 2021, I received my lifesaving bilateral lung transplant. This gift continues to give every single day. Over the past five years, it has been my goal to make a difference through every opportunity I am granted.

I found my voice, and I am using it. I feel an obligation to raise awareness about IPF and other interstitial lung diseases. I am humbled to write a column here at Pulmonary Fibrosis News, a platform that serves as a megaphone, allowing me to reach community members around the world.

I’ve also been able to provide a patient’s perspective to researchers and pharmaceutical companies, and serve as a consumer peer reviewer for the Congressionally Directed Medical Research Programs.

I’m grateful to share my experiences with all of you, including my current hospitalization. Several members of my care team remarked that they had never seen shingles on the legs and feet. Now they have.

This is a milestone anniversary in my view. When I was initially pursuing a lung transplant, I was told it could give me five additional years. That number continues to slowly increase, and I am determined to exceed the norm.

On July 10, I will celebrate my fifth “lungaversary” and acknowledge my donor family. I understand that grief has no expiration date, though I would love to share the legacy I am building with them one day. It has allowed me to 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.