4 things you’ll want to know about a pulmonary fibrosis diagnosis
The first challenge I confronted after diagnosis may surprise you
Today is traditionally a day for trick-or-treating, haunted houses, pumpkin patches, hay rides, and of course, pumpkin “chunkin’”. I have always enjoyed Halloween, the scariest day of the year for many.
I mentioned last week that my wife, Susan, and I host a Halloween costume party each year. Costumed partygoers and scary movies set the stage for the year’s scariest night. But the scariest day ever for Susan and me was quite different: It was Jan. 31, 2017, the day I was diagnosed with idiopathic pulmonary fibrosis (IPF).
While doctors had speculated in late 2016 that the cause of my symptoms might be pulmonary fibrosis (PF), they weren’t certain until months later.
The day I learned of my diagnosis wasn’t just another day. I experienced every negative emotion at once. I was angry and in shock and I wanted to scream at the universe. But all of that would have to wait.
I wish I knew at the time that I wasn’t the only person affected by my diagnosis. Before I could be cared for, I first had to be a caregiver. Let me explain: I needed to care for those around me who felt the blow of my diagnosis. A diagnosis isn’t a trivial matter, and all of those around me were collateral damage.
When diagnosed with a chronic, progressive disease for which there is no cure, it can be a challenge to convince others that everything will be OK. That is exactly what I needed to do for those around me.
In the days immediately following my diagnosis, Susan would burst into tears when I entered the room. My children, all adults, asked questions. My brothers were concerned. My mother wanted me to take one of her lungs.
My patient response
One of the first steps I took was to ask those around me to stop scouring the internet for information about IPF. I wanted to direct them to reputable sources, which meant I had to identify them myself. That is how I found resources like the Pulmonary Fibrosis Foundation and the late Kim Fredrickson’s writing, which ultimately led me to Pulmonary Fibrosis News.
The second thing I had to ask them to stop searching for was a cure for IPF. It didn’t exist, and claims to the contrary were false. Claims that fibrosis can be reversed using [insert treatment name] have not been proven to exist. The claims I have seen include herbal supplements and stem cell treatments. Neither are known to be effective, and some may not be safe.
The third thing I had to address was life expectancy. I asked that those around me not focus on the life expectancy provided by my care team but rather on how those numbers can be improved. I wanted their help to do everything within my power to improve those numbers.
Finally, I asked for their support of my decisions on this journey. I wanted them to take an active role in the village Susan would form.
The single greatest decision at the beginning of my journey was whether I would want to undergo a transplant. Spoiler alert: I did receive a bilateral lung transplant on July 10, 2021.
To be clear, addressing these four things did not complete my work. I needed to continue to care for those who care for me. But these four things did allow all of us to move forward together. It also established an open, honest dialogue, which we leverage to this day.
It would have helped me sharpen my approach earlier if I had known some of this information in advance of my diagnosis. If you are a patient with a history of familial PF, there is a chance you might find this column before your diagnosis. If you find this column after being diagnosed, it may be helpful early in your journey. By each of us on this journey committing to help each other, we can make every breath count.
What do you wish you had known when you were diagnosed? Please share 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.
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