Now you know: Updates from my journey living with IPF

My recent bronchoscopy results, increasing daily step count, and more

by Samuel Kirton | November 5, 2024

How is it already November? Here in the U.S., today is Election Day, so get out and vote if you haven’t already done so.

I wanted to take the opportunity this week to update you on topics I’ve discussed in several recent columns.

My bronchoscopy

Diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I was fortunate to receive a bilateral lung transplant in July 2021. In December 2022, my care team discovered my left bronchus had narrowed. I underwent several balloon dilations, but these only briefly corrected the narrowing. Then, in May 2023, a stent was placed in my left bronchus to train the passage to remain open. That stent was removed last December.

Since then, I’ve had several surveillance bronchoscopies, the most recent of which took place last Wednesday. All have been unremarkable. Kevin Duong, the pulmonologist who performed the balloon dilations and the stent placement and removal, also performed last week’s bronchoscopy. Coming out of anesthesia, I was glad to hear him tell me that the bronchus had held and I could return to the routine prescribed by the transplant clinic for surveillance as needed.

IPF treatment ISM001-055 safe, improves lung function, data show

An update on both Melissas

When I introduced you to fellow IPF patients Melissa King and Melissa Wheeler in a September column, they were on different paths. King was pre-transplant, while Wheeler was post-transplant.

At the time I wrote that column, King was on extracorporeal membrane oxygenation (ECMO) while awaiting a lung transplant. Since then, the exacerbation that originally sent her to the hospital cleared, and after 147 days, she came off ECMO support. As if that weren’t exciting enough, she also took a shower for the first time in five months. After 175 days at the Cleveland Clinic, King was discharged. She still needs a transplant, but can now wait for it in the comfort of her home.

Two months ago, Wheeler was undergoing treatment for myelodysplastic syndrome, a form of blood cancer. Shortly after that September column was published, she learned she wasn’t a candidate for a bone marrow transplant. Several weeks ago, Wheeler shared with me that after consulting with her husband and her care team, she had decided to stop chemotherapy. That choice would allow her to have the best quality of life while getting to know her grandson, who was born in early October.

Beau

I introduced you to my dog Beau in a column from March. I wrote that he was an Aussiedor, an Australian shepherd and labrador mix. I ordered a DNA test to learn more about Beau and his brother, Loki. As I shared in a column last month, I was skeptical after seeing the results and ordered a second DNA test from a different company. The tests agreed that the boys are a mix of Great Pyrenees and Anatolian shepherd.

Beau is now 13 months old and needs a lot of exercise, which means he keeps me active with daily walks. Earlier this year I noted that I was routinely walking more than 10,000 steps a day. Now I typically exceed 15,000 steps a day. I do keep track of my exercise, and at the end of October, I’d walked over 1,137 miles in 2024.

It’s important to me to share these updates with you, as they further demonstrate that each of us is on a unique journey. As we move along our individual paths, it’s important that we 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.

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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 LinkedIn.

Comments

Diane Wagner

My oxygen levels are dropping wheneverI move and takes a while to get them back up. On 9 up and moving. Anything I can do?

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