Caregivers share in the journey with idiopathic pulmonary fibrosis
How my wife has been essential before diagnosis, after transplant, and now
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.
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.
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.