Sharing some updates as I complete another trip around the sun

Here's what's transpired in my life and in the PF community

by Samuel Kirton | October 1, 2024

At the end of this week, I will complete another trip around the sun. This seemed like an appropriate time to provide you with updates on several columns I have shared in the past year.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, the future was uncertain. Despite my positive attitude, I was focused only on the next weeks and months. I certainly wasn’t thinking about 2024.

When I received a bilateral lung transplant in July 2021, I could see the future more clearly and look ahead to 2024 and beyond. This made me more committed to making a difference for others with IPF.

Immune cells separate IPF, fibrotic hypersensitivity pneumonitis

Beau’s story

A man with white hair, a goatee, and glasses takes a low-angle selfie of himself and his dog. The man appears to be sitting or squatting outside, while the dog is looking up at him lovingly. In the background we can see trees and a partly cloudy sky.

Sam Kirton and Beau in September 2024. (Photo by Sam Kirton)

Last March, I wrote about adopting my dog, Beau. I met Beau when the Leigh family was fostering him and his sibling, Loki.

Based on information from the Lost Dog & Cat Rescue Foundation, I initially believed they were Aussiedor, but shortly after adopting Beau, a DNA test revealed otherwise. Once the surprise of the results wore off, a different provider conducted a second DNA test, which confirmed the initial results. The two dominant breeds in Beau and Loki are Great Pyrenees and Anatolian shepherd. I ordered a larger crate. They turned 1 year old on Sept. 26.

Beau is helping me get exercise every day. We’re still averaging over 10,000 steps a day, which is good for both of us.

Your voice matters

Last December, early in my latest trip around the sun, I wrote about a march, organized by Honor the Gift, to the U.S. Department of Health and Human Services and then the U.S. Capitol. At the Capitol, our group made office calls to members of Congress to protest a Medicare coverage decision. Medicare was restricting access to molecular diagnostic tests like AlloSure Lung, a blood test my care team uses to identify any early rejection of my transplanted lungs.

In August, almost eight months after our march to the Capitol, the Centers for Medicare and Medicaid Services (CMS) announced that the coverage proposal would be scrapped. As a press release from Honor the Gift noted, the “proposed draft coverage policy … would have restricted coverage of surveillance monitoring.”

An Aug. 16 press release from CMS said:

“The Medicare Administrative Contractors (MACs) have carefully considered all the feedback received from interested parties regarding the MolDx: Molecular Testing for Solid Organ Allograft Rejection proposed local coverage determination (LCD). In response to public comments and upon further review of the evidence, the MACs are not finalizing the proposed LCD issued on August 10, 2023. Due to the importance of identifying solid organ allograft rejection early and to ensure the public has additional opportunities to comment on the policy, the MACs intend to issue a new LCD in the coming months.”

When I first saw this news in a Wall Street Journal editorial, I looked for other sources to verify the information. As it turned out, because the rare and transplant communities had raised our voices in unison, we made a difference in policy.

Now, the pulmonary fibrosis community awaits a new LCD. I will advise you when it becomes available and perhaps issue a new call to action. Take a minute to pat yourself on the back and exhale. Together, we are 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.

Print This Page

About the Author

Samuel Kirton Sam Kirton started his column in November 2021 and writes from his home at Lake Anna, Virginia, where he lives with his wife Susan. His diagnosis at age 59 with idiopathic pulmonary fibrosis in January 2017 began a journey of awareness and advocacy. Sam was listed for a lung transplant on March 19, 2021 and received a bilateral lung transplant on July 10, 2021. This was quite the change from his career as a special agent for the Office of Special Investigations and as a corporate security executive. Sam plans to share his journey so you, too, can make every breath count. You can follow Sam’s thoughts on Twitter or LinkedIn.

Comments

Fill in the required fields to post. Your email address will not be published.

Sharing some updates as I complete another trip around the sun