This Thanksgiving, I’m Grateful for the Caregivers in the PF Community

Caregivers play a crucial role in the IPF journey, says columnist Sam Kirton

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by Samuel Kirton |

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The pulmonary fibrosis (PF) patient population would likely become unhinged without the oversight of our caregivers. They have one of the hardest roles in the PF community.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, my wife, Susan, was sitting by my side. For the next few days, she would burst into tears whenever I walked into the room because she had been researching the disease. Unsurprisingly, not everything you read on the internet is true.

We began identifying reliable data sources, such as the Pulmonary Fibrosis Foundation, which provides a wide variety of resources for our community. These include educational materials with vetted information and virtual support groups.

We also discovered that others with PF could provide insight into what our future might look like. The late Kim Fredrickson offered a glimpse of her life with PF through her Pulmonary Fibrosis News column, “Just Breathe … Compassionate Help for the PF Journey.”

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Caregivers Need Care, Too

The common denominator

I’ve written before that while those of us with IPF may share a diagnosis, we’re all on different paths. But we share something else, too: how important our caregivers are to us.

Regardless of where a patient is on their journey — diagnosis, pre-transplant, post-transplant, palliative care, or hospice — the caregiver’s role is essential.

Susan is my caregiver, and she has been with me every step of our journey. While I was the one diagnosed with IPF, caregivers experience many of the same emotions as the patient.

The most poignant example is from July 10, 2021, the day of my bilateral lung transplant. I went into surgery around 3 a.m. and was moved to recovery around noon. Susan later told me that for those nine hours, she sat in the waiting room not knowing if she would go home a widow. Thanks to an amazing care team, she did not have to know that experience.

Others along the way

During this journey, Susan and I have met some other amazing caregivers. While each of their stories is unique, caregiving is the common thread. I would like to introduce you to four of the caregivers I have met over the years.

Jeff Lucas: Annie Lucas was diagnosed with PF in 2008 and is now more than five years post-transplant. Her husband and caregiver, Jeff, championed her through the pre-transplant years and continues to be her biggest advocate as they live their best life.

Karen Carns: Jim Carns was diagnosed with IPF in 2010. He received a single-lung transplant in 2013 and another one in 2021. Today, Jim lives with two lungs from two different donors. Karen, his wife of more than 28 years, has been by his side as his caregiver since his diagnosis.

Debbie Klein and Debra Pross: Debbie and Debra lost their husbands, Steve Herndon and Frank Pross, respectively, to PF. Both women were caregivers for their spouses, but their roles didn’t end when their husbands passed. Today, they still actively advocate for the PF community.

But wait, is there more?

These are just a few caregiver stories. I invite you to share yours in the comments below; I may include them in an upcoming column. While you’re considering it, take a moment to ask the caregivers in your life how they’re doing.

This Thursday, Thanksgiving is celebrated in the United States. While gathering with family and friends or simply enjoying a moment of solitude, find a moment to practice gratitude. There’s always something to be thankful for, though I recognize that there are times when we may have to dig a bit deeper to find it.

I have so much to be grateful for, thanks to the generosity of my donor and donor family. Being thankful is how 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.

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