My IPF Journey Has Taught Me to ‘Make Every Breath Count’

Samuel Kirton avatar

by Samuel Kirton |

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IPF journey | Pulmonary Fibrosis News | A digital rendering of lungs done in shades of blue.

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Welcome to my new column, “Make Every Breath Count.” Before I started writing it, I thought about what readers might want to know about me and why I’m writing this column. What details would make them want to continue reading?

It all started with a cough. In the fall of 2016, I was bothered by a lingering cough that had gotten worse and wouldn’t go away. However, I just attributed it to allergies. A chest X-ray indicated an interstitial lung issue that concerned my primary care physician enough to refer me to a pulmonologist in her practice.

After reviewing my high-resolution computed tomography scan, the pulmonologist walked into the exam room and saw my hands. My fingers were clubbed. Coupled with the scan and the cough, he immediately suspected pulmonary fibrosis.

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Toward a Better Understanding of the IPF Cough

He referred me to the lung transplant center at Inova Fairfax Hospital in Falls Church, Virginia. On Jan. 31, 2017, I was diagnosed with idiopathic pulmonary fibrosis (IPF), the official beginning of the journey I want to share with you. My resolve to make every breath count was born.

The journey with IPF, like many other interstitial lung diseases, is completely unpredictable. I remained relatively stable amid a slow, steady progression over the next three years. As the pace of progression picked up, I went on oxygen in the fall of 2019, and began the final tests for transplant when the time came.

I was approved for transplant but deferred in March 2020 due to the COVID-19 pandemic. In consultation with my care team, we made a joint decision to keep my native lungs while closely monitoring my progression.

Almost a year later, on March 19, I was listed for a bilateral lung transplant. My downward progression had accelerated, and my care team recommended I accept a single lung if it became available. I needed more and more supplemental oxygen on a 24/7 basis.

On July 9, my phone rang at about 9 a.m. The voice of an angel said, “Hi, Sam. We have a lung offer for you.” Time stopped as my brain processed those nine words.

I arrived at the hospital around noon, and was prepped for surgery. The lungs needed to undergo some rehabilitation due to gases that concerned the surgical team. They employed a process called ex vivo lung perfusion to repair and prepare the donor lungs.

In the early hours of July 10, I went into surgery and received a bilateral lung transplant. I was brought to the intensive care unit around noon that day to begin recovery. At around 5 p.m. on July 11, I was extubated and took my first breath with my new lungs.

My IPF journey, which began with the lead-up to my diagnosis, continues today. I am passionate about sharing that journey to increase awareness, promote advocacy, promote research toward new treatments and a cure, and encourage others on their own journey.

“Make Every Breath Count” isn’t just the name of this column, it’s my mantra!

***

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.

Comments

Sandy smith avatar

Sandy smith

What a great site. My husband had recently been diagnosed with IPF. What age did Samuel Kirton have his. Lung Transplant and is it still successful?

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Samuel Kirton avatar

Samuel Kirton

Sandy,
Thanks for your feedback on Pulmonary Fibrosis News. I was diagnosed with IPF at age 59 and my bilateral transplant was at age 64. January 2022 will mark my six-month post-transplant anniversary.

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Mary Geissler avatar

Mary Geissler

Thank you! Please keep us in this loop of your journey!
Mary

Reply
Samuel Kirton avatar

Samuel Kirton

Mary,

Thanks for reading my first column here at Pulmonary Fibrosis News. Please continue to join me here to learn more about my journey, both past and the path ahead.

Reply
Victor M Carron avatar

Victor M Carron

I was diagnose with Fibrosis and I am educating my sell what it is and if there any future for me! I will appreciate all the information I can get. Doctor has prescribe Offer . Wow but is so expensive. They have informed me I have from 2 to 5 years to live. Thank you

Reply
Samuel Kirton avatar

Samuel Kirton

Victor,
You will find a lot of useful information here on Pulmonary Fibrosis News.

Reply
David Ota avatar

David Ota

Sam
Thank you for sharing. As an "Old Lung Transplant Recipient" 5 years post, 1 year chronic rejection, I've answered several question for forum readers. I enjoyed your article on getting the call. I'd like to see more on your journey, the trials of recovery in the hospital, caregivers stories, limitations and workarounds. Good Luck. Dave

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Samuel Kirton avatar

Samuel Kirton

Dave,
Thanks for reading my first column and your comments. You, as an "Old Lung Transplant Recipient", can appreciate the many parts of this journey. I plan to share all those you have mentioned and several surprises along the way.

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Julian Arizola avatar

Julian Arizola

Thank you for sharing. I was diagnosed with IPF at 62 y/o. I have been on Ofev for 3+ years. A lot has changed for me since my diagnoses . That's while I look forward to reading from those sharing our struggle. There's always something to learn, or to be inspired by. Thanks again, and keep us updated.

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Samuel Kirton avatar

Samuel Kirton

Julian,
Thanks for your comments. There is always so much to learn on this journey and countless people have inspired me along the way.

Sam...

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ELAINE WALTERS avatar

ELAINE WALTERS

Hello from Australia I have just turned 83 and although I was diagnosed with IFP five years ago I was told it was slow moving .So I more or less forgot about it until I was admitted to emergency on an unrelated matter about six months ago.
Apparently I have now moved up to the moderate stage and I was prescribed the Ofev and .Predsolone
.I have been on them for five months but have decided to stop taking them for the simple reason that at my age I would perfer to die rather than living like a semi invalid. I have had a wonderful life and always wanted to die at about 85. So the chances are that I will live for another two years.
Unlike the poem by Dylan Thomas who urged us 'not to go gentle into the good night but to rage rage against the dying of the light 'I don't want to rage against the dying light but accept my dying as another part of life. Who knows what lies beyond. I hope there is an afterlife. if there is, it will be another adventure. If not I won't know anything about it anyhow. Cheerio Elaine

Reply
Samuel Kirton avatar

Samuel Kirton

Elaine,

Thank you so much for reading my column and your note. The way IPF affects each of us and the decisions we make about our journey is based on what works best for each of us. I urge you to continue to make every breath count as you move along this journey and please let me know how you are doing.

Sam ...

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Charles Hansbrough avatar

Charles Hansbrough

It's , indeed , an "ill wind that blows no good" : At 92 years of age , a 3 to 5 year life expectancy hardly ruffles my feathers .... yet...

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Samuel Kirton avatar

Samuel Kirton

Charles,

A positive attitude is a good thing. I hope you continue to live your best life.

Sam ...

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