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Texan, triathlete, wife, mother and survivor – those are just a few words I use to describe and define myself. Some would add “pulmonary fibrosis (PF) patient” to that list, but I’ve chosen not to let my diagnosis and life with PF define me. However, it’s important for me to share my PF journey so others can learn from my experience and start conversations with their doctors.
I was training for my first full Ironman Triathlon in 2015 when I noticed that instead of getting faster and stronger with training, I was getting slower, more sluggish and had a relentless cough. Two years later and two weeks after competing in Ironman Wisconsin in 2017, I was diagnosed with idiopathic pulmonary fibrosis (IPF) and since then, I’ve been on a mission to raise awareness for this disease. There’s no better time to share my story than in September for Pulmonary Fibrosis Awareness Month.
PF Explained:
PF is a progressive and debilitating disease that leads to scarring of the lungs that over time can destroy the normal lung and make it hard for oxygen to get into your blood. The disease has no known cure and affects both men and women. More than 200,000 Americans are living with pulmonary fibrosis and over 50,000 new cases are diagnosed each year. PF can be difficult to spot and diagnose since it shares the symptoms of many other illnesses. Common symptoms of PF that you should know include:
• Persistent, dry cough
• Shortness of breath
• Weakness and fatigue
• Discomfort in the chest
• Loss of appetite
• Unexplained weight loss
Risk factors to be aware of include history of smoking, age of 60 and over and a family history of interstitial lung disease.
My Experience with PF:
My diagnosis with PF in 2017 changed my world forever. However, instead of sitting on the sidelines, I decided to take a proactive approach to my “new normal.” I found a testing center near my home in Texas and started the lung transplant evaluation process. While the process was not immediate, I was able to have a lung transplant in the summer of 2020 – giving me a new chance at life. I relied on the Pulmonary Fibrosis Foundation (PFF) for help and support along the way, and they have been a central part of my transition to living with PF.
No story of PF is the same. Some find that treatments like supplemental oxygen, medication and pulmonary rehabilitation work for them, others may not. Everyone reacts to this disease in a different way – and I choose to not let PF define me, instead, I define the disease.
Why PF Advocacy Needs You:
Unfortunately, awareness of PF remains very low. According to a recent survey conducted by the PFF*, only 57% of women have heard of PF by name and nearly a quarter (24%) have never heard of PF at all. Additionally, 86% of Americans do not know the symptoms of PF.
It's essential that we know the facts about PF to help promote understanding of this devasting disease, raise funds for vital research, lead to better treatments and ultimately find a cure.
Join me this September in celebrating Pulmonary Fibrosis Awareness Month (PFAM) with the PFF. There are tons of ways to get involved and help spread the word. The PFF provides patient and caregiver resources, medical support, educational programs and more to those in need, and PFAM is the perfect time to give back and raise vital awareness. Planning a fundraiser, like a virtual PF walk, sharing content on social media or becoming a sponsor are just a few ways to get involved. Whatever you choose, know that your contributions are making a difference to finding a cure for PF!
For more information about pulmonary fibrosis, please visit www.AboutPF.org, and for more information about PFAM, please visit: https://www.pulmonaryfibrosis.org/get-involved/pf-awareness.
*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
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Add a Comment3 Comments
Hi Melissa,
As you know through Melinda, I too had a lung transplant due to IPF. I thank and admire you for having the courage and wherewithal to write your story. Your journey has been one of strength and determination. We all hope your progress and new life lease will serve you well for a long time to come.
Andy
September 16, 2020 - 1:46pmThis Comment
Stay strong Melissa! You're a PFF Ambassador rock star!
September 16, 2020 - 10:32amThis Comment
Fantastic Share, thank you Melissa!
Having a lung transplants is a huge thing - I wish you the best in your recovery and thank you for your advocacy and for offering ideas on what others can also do.
Best,
Susan
September 14, 2020 - 2:04pmThis Comment