Caregivers share in the journey with idiopathic pulmonary fibrosis

How my wife has been essential before diagnosis, after transplant, and now

Samuel Kirton avatar

by Samuel Kirton |

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Sept. 12 is always an exciting day in our house. It’s the birthday of my wife, Susan, for one thing. And it’s also our wedding anniversary. While I won’t disclose Susan’s age for my safety, I can share that it’s our 13th anniversary.

For more than half of our married life, Susan has been by my side in this journey with idiopathic pulmonary fibrosis (IPF). That’s not what we imagined when we thought about happily ever after.

How it began

Susan hates this story, but I’ll tell it anyway: She’s responsible for my IPF diagnosis.

In the fall of 2016, my cough was ever-present and annoyed both Susan and me. While I was already scheduled for my annual physical with my primary care physician, Dr. Louise Reynolds, Susan insisted I talk to her about my cough and ask for a chest X-ray, based on the medical knowledge she’d acquired by watching every episode of TV’s “Grey’s Anatomy.”

After listening to my lungs, Dr. Reynolds ordered that chest X-ray. It was the beginning of my path to diagnosis.

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On Jan. 31, 2017, I learned I had IPF during a clinic visit with Dr. Steven Nathan. When he delivered the news, Susan was by my side. She’s been with me in virtually every clinic visit, doctor appointment, and procedure since then. She’s spent more time in surgical and procedural waiting rooms than anyone ever should.

In my view, the caregiver’s role in the IPF patient’s journey is not recognized enough. Without them, in fact, it’s practically impossible to get on the transplant list in the U.S. Transplant centers here require that patients demonstrate an appropriate support system to ensure an increased chance of success for both the patient and the donor lung(s).

For pulmonary fibrosis patients, that’s not simply a requirement for after-transplant care. Susan was beneficial to both of us before the transplant, too. She’d sit through appointments and hear the same things I heard, and she had carte blanche to ask questions.

Following an appointment, we compared notes to ensure we’d each understood the same thing from the doctor. Our different perspectives, after all, might’ve led to different interpretations of what we heard. Those post-appointment discussions told us we were on the same page. Without a doubt, the caregiver was part of the patient’s journey.

Hearing from the caregiver

The caregiver’s particular perspective is valuable to the PF community. During my clinic visits, for example, I’d answer my care team’s questions based on my lived experience. Susan could support my view and possibly offer additional information, providing my care team with a better answer.

The Pulmonary Fibrosis Foundation Community Registry knows the caregiver is important, too. It includes a separate track to document the caregiver’s experiences to make sure their different perspective is recorded. That track collects demographic, education, employment, and environmental-exposure information.

To participate, the caregiver completes two questionnaires a year, a commitment of about two hours annually. Their information can then be used in research to improve PF patients’ quality of life, possibly with an improved therapy or cure.

Your charge

September is Pulmonary Fibrosis Awareness Month. Perhaps obviously, raising awareness about PF is important to help people unfamiliar with the disease develop an understanding of it. But the month is equally important because it increases awareness of how PF affects the lives of patients, caregivers, and those around them.

Susan has given her time to speak with caregivers new to the journey who are looking for a better understanding of their role. They find comfort when Susan helps them know they’re not alone.

Raising up the PF community, regardless of who on the journey does it, is one way to make every breath count.

Please tell me about your caregiver in the comments below.


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

Michelle Michels avatar

Michelle Michels

Thanks! So much for your comments on caregivers! My dad has IPF for the past 3 years, not eligible for transplant, he is 90. It has heart breaking watching him struggle for each breathe! It made me feel better knowing I am not alone! Michelle

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Michelle,
Thanks for reading my column and for your comments. The caregivers in the PF community are so essential. This disease is so difficult for our caregivers. Do you have resources to provide support for you? Let me know here about the resources you find helpful.

Sam ...

Reply
Terri Gordy avatar

Terri Gordy

Thanks for sharing your story, Samuel. Happy Birthday to your lovely wife, and Happy Anniversary to you both! My caregiver is my very patient and supportive husband of almost 17 years. He's more than lived up to the "in sickness and in health" part of the marriage vows. He got me through a cancer diagnosis, two related surgeries, chemo, and radiation. (I'm now cancer-free!) And now he's helping me deal with life with ILD. He does more than his share of the housework/chores. We both still work FT. He challenges me when I need to be pushed to do something, such as wear supplemental oxygen even on a short walk. He's my best friend and my rock. Life would be next to impossible for me without him.

Reply
Samuel Kirton avatar

Samuel Kirton

Terri,
Thanks for reading my column and your comments. It sounds like you have excellent caregiver support. I know it made a difference in my journey.

Sam ...

Reply
Jim Carns avatar

Jim Carns

Sam,

Every word you put on paper is true. I am one that will testify to the value/importance of our caregivers, both pre and post transplant. Like Susan, Karen has been by my side every step of the way since my journey began with pulmonary fibrosis in 2009, and my two transplants.

I have often told Karen and many others, that I am not certain how my journey might have ended if I did not have her by my side.

Reply
Samuel Kirton avatar

Samuel Kirton

Jim,
thanks for reading my column and for your comments. I am with you 100%. Karen and Susan are both forces to be reckoned with in their caregiver roles!

Sam ...

Reply
Sheree C Foldesh avatar

Sheree C Foldesh

I was diagnosed with IPF in 2014. It is now 2023. I am on pulse 5 on my concentrator and pulse 5 on my machine at home.
My Pulmonologist keeps insisting I have a lung transplant. I meet all the criteria. I keep telling him that I am not interested. When asked why, I tell him, why would I want to get a transplant, when it would only give me five years. I'm going on nine years. Plus being on drugs for the rest of my life.
I am very glad you are doing good and that you have a great care giver. Don't know what I would do without my husband. He is so attentive and helps me with everything. God Bless you in your journey.

Reply
Samuel Kirton avatar

Samuel Kirton

Sheree,

Thanks for reading my column and for your comments. The decision whether to pursue a transplant is a very personal decision. Each PF journey is unique. I was diagnosed in January 2017 and received a transplant in July 2021. My downward progression began in 2019 or early 2020. The progression rapidly accelerated in early 2021. Much like each PF journey being unique, each post-transplant journey is also unique.The post-transplant survival rate continues to increase incrementally each year.Please come back and let me know how you are doing.

Sam....

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daniel J degowin avatar

daniel J degowin

I was just approved for double lung transplant and the average life expectancy is now 14 years.

Reply
Samuel Kirton avatar

Samuel Kirton

Hi Daniel,
Thanks for your comment. I am not familiar with that statistic and wondered if you could share the source for "average life expectancy is now 14 years".

Sam...
Make Every Breath Count

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