Focusing on Wins for Pulmonary Fibrosis Awareness Month

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by Emma Schmitz |

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You may have noticed that September is Pulmonary Fibrosis Awareness Month. Here at Pulmonary Fibrosis News, we’ve been running a social media campaign that showcases patients and their loved ones in our community. Additionally, the Pulmonary Fibrosis Foundation runs a yearly campaign encouraging advocates to “let the world know” by sharing their own stories, walking on a certain day, “going blue,” and more.

As a writer, I’ve shared my story many times over. As a lover of the outdoors, I’ve walked for plenty of good reasons. And as a self-proclaimed counterculturalist, I’ve dyed my hair blue at least twice. But I did none of these things in the spirit of advocacy. Despite annual campaign awareness efforts, I was not aware of pulmonary fibrosis until my mom, Diana, was dying from it.

That’s not surprising. Too often, we don’t know what we need to know until it’s too late. Fire insurance when the flames have crested the ridge. A clever comeback to a misogynist joke thought up after the conversation has ended. A video of a shelter dog you suddenly can’t live without who was adopted by another family yesterday. (Don’t worry, there’s another dog out there who needs you!)

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My mom was fortunate enough to receive a single-lung transplant before it was too late. She needed two, but one was better than none. Because she still has a native lung, she’s one of the roughly 250,000 Americans living with idiopathic pulmonary fibrosis and interstitial lung disease.

I haven’t wanted to think about the reality of survival rates when comparing single-lung transplant with the bilateral lung transplant my mom could have benefited from. But apparently, as a review study showed last year, “long-term survival appears to be similar between the two procedures,” Pulmonary Fibrosis News‘ Marta Figueiredo reported. However, the study did point to the likelihood of more postoperative challenges for someone with a single-lung transplant than a bilateral one. My mom certainly has experienced her fair share of these challenges.

As an anxious person, a self-development trait I constantly work through is trying not to worry. I remind myself that “worrying is like praying for what you don’t want,” as a popular quote observes. My mom has warned me that the power of visualization works, so be careful what you see in your mind. Therefore, I’m not allowed to bring myself to worry about the data that show a single-lung transplant increases the recipient’s risk of lung cancer. That is a rabbit hole I don’t have time for at this point in my life.

Besides, my mom’s already 16 months post-transplant, and her doctor says his team is pleased with her overall outcome. You and me both, Doc. She sounded chipper and energetic on the phone the other day, high on endorphins from a walk in the redwoods and the prospect of visiting her grandkids for Halloween. I told her that sounds like a perfect plan.

Pulmonary Fibrosis Awareness Month may nearly be over, but it’s a lifelong disease that my mom still lives with. Some days, her disease feels like a “suffer-fest,” with relationships straining and joie de vivre draining at the restrictions placed on her everyday life. But other days, she’s simply stoked to show her 4-year-old grandkid, Jack, a Lego puzzle she pieced together.

Ultimately, the months add up when you take things one day at a time.


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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