Remaining hopeful through a difficult diagnosis
After a PF diagnosis, we must educate ourselves, prepare, and stay resilient
As my husband Donnie’s diagnosis of pulmonary fibrosis (PF) slowly unfolded, I found myself oscillating between anger, sorrow, and disbelief. At the time his symptoms appeared, he was only in his 30s. He had an extremely labor-intensive job, walked over 10,000 steps a day, and was incredibly active. He spent weeknights and weekends coaching our daughter’s elementary basketball team, and we were just a typical, busy family of four.
Somewhere between the onset of his symptoms and his diagnosis, I stumbled upon an article about PF. Since Donnie was exhibiting many of the symptoms of PF, I kept reading. When I read the prognosis of a three-to-five-year survival rate, I felt physically ill. How could this be happening to my husband? How could this be happening to our family?
Even though doctors initially suspected asthma, I knew something wasn’t adding up. I often found myself reading articles and real-life stories about PF, which gave me the courage and knowledge to help my husband push for an accurate diagnosis.
Relief is possible
For starters, the prognosis was merely a prediction of what might happen without treatment. It’s also a median figure, meaning some people may live for a shorter time, while others may live much longer. Because PF is considered a rare disease, many people wait years before receiving an accurate diagnosis, which I believe contributes to the lower survival rate, as many individuals do not get the care they need in a timely manner.
Some people with PF can achieve long periods of stability in their lung function, especially with the advent of medications such as Ofev (nintedanib), Esbriet (pirfenidone), CellCept (mycophenolate mofetil), and the newly approved Jascayd (nerandomilast).
Secondly, a prognosis is just an educated guess. It’s somewhat like watching the weather. We can see a storm brewing on the radar, but we don’t know exactly what will happen until it arrives. Sometimes, the weather forecaster is spot on; other times, they are not.
My husband’s PF has remained mostly stable since he started Ofev about two and a half years ago, although doctors debate whether a slight progression may have occurred. We know this is a progressive disease, but I’ve read stories of many people whose PF has remained stable for years, even decades. The only thing we can do is educate ourselves, prepare, and stay resilient.
Thirdly, one of the most concerning things I read when my husband first got sick was that he would never feel better than he did at that moment. I can tell you that has not been true in his case. While PF isn’t currently curable, it is treatable, and relief from symptoms is possible.
Donnie feels so much better today than he did three years ago when his symptoms were untreated and uncontrolled. In 2021 and 2022, his cough was relentless and violent, and severely affected his sleep and daily activities. Today, his cough is under control and typically only bothers him during times of illness or allergy season. He can sleep, works full time in a career he loves, and remains an engaged and involved parent. He hasn’t stopped living the life he wants, and he has no intention of doing so.
Lastly, it’s 2025, and medical treatments are evolving more rapidly than ever before. Earlier this year, our young daughter was diagnosed with type 1 diabetes. Just over 100 years ago, that would have been a death sentence. Today, thanks to modern medicine, years of research, and the experiences of all the type 1 patients who came before her, she lives a happy, healthy, and active life.
Who’s to say that PF won’t experience the same kind of rapid evolution in the near future? Until then, my family chooses to remain thankful for the available PF treatments and hopeful about the advancements that are sure to come. A diagnosis of PF will change your life, but life is for the living, and my husband intends to live it to the fullest.
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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