With the month of June signaling the beginning of Men’s Health Month, is there a better time to start a dialogue around health conditions of which many men may not be aware? According to the Pulmonary Fibrosis Foundation (PFF), 83% of men do not know the symptoms of pulmonary fibrosis (PF)*, a progressive, debilitating lung disease that affects over 200,000 Americans. Because PF is more common in men than women, it is crucial we remain vigilant in detecting early signs of the disease. After all, only 5% of men are very familiar with PF*.
Four years ago, I was diagnosed with idiopathic pulmonary fibrosis (IPF), a type of PF with unknown cause. My PF journey began on a beautiful January day in Phoenix, Arizona. I had just parked my golf cart and climbed the hill to meet my buddies on the elevated green when, suddenly, I had great difficulty catching my breath. Having been a heart patient already, I figured it could be heart-related and contacted my cardiologist. To my surprise, my cardiologist told me there was nothing wrong with my heart and handed me a card for a pulmonologist. I had never seen one before but decided now was the time.
About a month later, I was diagnosed with IPF. Not knowing much about it, I asked my pulmonologist how it was treated and what the prognosis was. When I learned there were few medications to treat the disease, and that somebody with X-rays like mine could expect to live just two to five years, my mortality was brought into question as I realized time was of the essence. That was four years ago, and today, my attitude is better. I’m still playing golf, although I’ve had to learn how to manage my breathing a little better. In fact, I’m using the completion of 18 holes as a health and PF benchmark — if I can sustain that, then I’m staying even.
The moral of my story is: don’t wait too long to start conversations with your doctor and heed their advice. This journey started with great fear for me, but the fear lessened as I became more knowledgeable. Now that you know my story, I want to share vital information about PF I wish I knew before my diagnosis.
To learn more about other common myths and misconceptions about PF, check out the Myths and Misconceptions video series on the PFF’s YouTube channel.
Pinpoint PF Symptoms and Risk Factors
Because PF remains largely unknown, later stage diagnoses are often the result of this unsettling truth. Early detection and treatment of diseases like PF, however, are made possible through the education and awareness of symptoms and risk factors. Common symptoms of PF include a dry, chronic cough, fatigue, shortness of breath, and general feelings of weakness, but they are easy to dismiss and difficult to diagnose due to the similarities they share with other illnesses. It is recommended that you keep a list of symptoms and consult your healthcare provider if you are experiencing two or more of the chronic symptoms above.
I also didn’t know there were so many different risk factors for PF, but we went down every one of those lanes with my pulmonologist. The first one was autoimmune disease. Blood work indicated that I was borderline for autoimmune issues. Examples of autoimmune conditions that can cause PF include rheumatoid arthritis or scleroderma.
Additionally, several other factors put certain Americans at higher risk for PF including:
· Current or past smokers
· Those over the age of 60
· Family history of interstitial lung disease
· Prior or current use of certain medications known to affect the lungs
Shining a Spotlight on My Fellow PF Ambassadors
I joined a PF support group and found it to be very helpful and full of very encouraging patients like myself. There was just so much information to absorb that I felt like a five-year-old kid in a candy store. I liked the unvarnished information I received from patients who had been on this path already — some of whom even had lung transplants. Persistence is admirable, and these men and women have carried on despite their diagnoses. I’d like to share their stories to highlight the importance of bringing awareness to PF.
Sam Kirton: “If making every breath count is my mantra, then spreading the word about the disease and its symptoms is my calling.”
When Sam’s wife insisted he get a chest X-ray based on his persistent cough and her knowledge of Grey’s Anatomy, he never thought a television program would have inched him closer to being diagnosed with IPF. Rather than bogging themselves down into a depression, Sam and his wife joined a PF support group, and she accompanies him to every non-research appointment. The two of them even got matching “make every breath count” tattoos to seal their commitment to living life to the fullest. Today, Sam is determined to increase awareness and accelerate research for PF — two goals he holds dearly as a PFF Ambassador.
Fred Schick: “One takeaway from my [support] group was a simple little thing like carrying sugar-free cough drops to help with that pesky IPF cough. Forget things that you can’t do and enjoy those that you can. I changed my activities from participatory to observatory.”
Fred was diagnosed with IPF, immediately searched it on the internet and stared at the words on the screen: two to five years. No cure. Fatal disease. While he struggled to come to terms with a diagnosis that would greatly impact his active lifestyle, Fred eventually embraced the change. Joining a support group and participating in sedentary activities helped make that process easier. Over time, talking about the disease became easier, too, and he no longer felt hopeless in his fight. Just as Fred has benefitted from educational programs and webinars about PF, he also serves as a PFF Ambassador to provide those same resources to others.
Useful Patient Resources
I know every person’s journey is different, but I really do believe your personal wellbeing is greatly affected by your attitude and willingness to fight this disease every way you can. Sharing my story is one way I can gain a sense of control over my life, while also building support and spreading awareness to others.
Learning, taking action, joining a support group and using the resources from the Pulmonary Fibrosis Foundation (PFF) has also given me a sense of control. The PFF offers educational resources and methods for spreading awareness about PF, available treatments, ways to participate in research and clinical trials, and more. For additional information about PF, please visit www.AboutPF.org or call the PFF Help Center at 844-TalkPFF (844–825–5733).
*PFF National Awareness Survey 2020: https://www.pulmonaryfibrosis.org/docs/default-source/marketing-brochures/pff-national-consumer-survey-report---for-review-updated-2-19-2020.pdf?sfvrsn=c479c8d_0
