Blogs
Anita’s Life After Pulmonary Fibrosis and Double Lung Transplant
Diagnosed with pulmonary fibrosis at 40, Anita spent years fearing lung transplant. Today, 10 years after a double lung transplant, she shares her story of survival, activity, purpose, and hope for others.
7 Things to Know Before Starting Supplemental Oxygen
Starting supplemental oxygen for pulmonary fibrosis (PF) can feel overwhelming. Discover seven essential things to know about oxygen therapy, including prescriptions, insurance, pulse oximeters, and portable oxygen concentrators, to help you stay active and breathe easier.
Living With Dermatomyositis and Interstitial Lung Disease: Karen’s Story of Answers and Purpose
Living with dermatomyositis and interstitial lung disease has changed Karen’s life, but not her purpose. With support, oxygen, and determination, she continues doing what she loves while helping others find their way.
Living with Oxygen: What Everyday Life Really Takes
Living with oxygen can turn a simple grocery trip into careful planning. Jeannie shares how liquid oxygen, pacing, mobility support, and preparation help her manage everyday life with pulmonary fibrosis and pulmonary hypertension.
When Pulmonary Fibrosis Touches a Family Twice: Ron’s Story
When pulmonary fibrosis enters a family, caregivers are affected too. Ron shares his experience supporting his wife with interstitial lung disease, losing his mother to IPF, learning about oxygen, and helping other families.
Jean’s Life with IPF: Six Years Later
Six years after her idiopathic pulmonary fibrosis (IPF) diagnosis, Jean is still traveling, exercising, connecting with other PF Warriors, and adapting as life changes. Her story shows what living with pulmonary fibrosis can look like over time.
What Kathy Wants You to Know About Grief
Pulmonary fibrosis changed the future Kathy and Mary Beth imagined together. After Mary Beth’s death, Kathy reflects on caregiving, end-of-life conversations, identity, and the lasting reality of grief after losing a partner of 41 years.
“You Got It, Dad”: Erica’s Promise to Keep Fighting Pulmonary Fibrosis
When Michael E. was diagnosed with pulmonary fibrosis, Erica and her family felt unprepared. Their search for answers led them to PF Warriors, and today Erica keeps her promise to help other families feel less alone.
Morrie Goodman’s Story: Lung Cancer, Pulmonary Fibrosis, and Hope
After pulmonary fibrosis was diagnosed, testing for lung transplantation revealed Morrie Goodman’s lung cancer. His cancer reached remission, but PF remained incurable, inspiring his plans to share his experience with the FDA and help patients.
PF Warriors Newsletter – July 2026
This issue celebrates the PF Warriors community through volunteer service, patient and caregiver advocacy, the Pete Mulliner Volunteer Travel Award, FDA listening session participation, and plans for a September Patient & Caregiver Forum in Dallas.
PF Warriors Newsletter – June 2026
This issue celebrates the PF Warriors community through volunteer service, patient and caregiver advocacy, the Pete Mulliner Volunteer Travel Award, FDA listening session participation, and plans for a September Patient & Caregiver Forum in Dallas.
Living With Scleroderma and ILD: What Patients and Caregivers Should Know
Living with scleroderma and ILD can feel overwhelming, but no one should face it alone. Learn how scleroderma can affect the lungs, what symptoms to watch for, and why year-round support matters.
Pulmonary Fibrosis (PF) Community FDA Patient Listening Session Summary
Patients, caregivers, physicians, and advocates met with the FDA to share the urgent realities of pulmonary fibrosis and call for faster pathways, meaningful treatments, and better access to clinical trials for the PF community.
Sjögren’s Disease and Pulmonary Fibrosis: What Patients and Caregivers Should Know
Understanding the connection between Sjögren’s and pulmonary fibrosis can help patients and caregivers ask informed questions, recognize symptoms earlier, and advocate for comprehensive, coordinated care.
Patients, Caregivers, Doctors Meet with FDA about Deadly Lung Disease
Patients, caregivers, and doctors shared firsthand experiences with pulmonary fibrosis during a rare FDA listening session, offering critical insights into disease burden, treatment challenges, and the urgent need for better therapies.
PF Warriors Newsletter – March 2026
From research and advocacy to education and peer support, 2025 showed the power of patient and caregiver voices working together to shape care, advance understanding, and bring hope to the pulmonary fibrosis community.
Patients Share Personal Stories in Newest Edition of Medical Society’s Video Series
PF Warriors volunteers are featured in the American Thoracic Society’s 14th “Patient Voices” series, sharing lived experiences with pulmonary fibrosis to help shape research, education, and patient-centered care across the global respiratory health community.
PF Warriors Applauds Actress Laura Dern for Speaking Out as a Caregiver About Mom’s Journey with Pulmonary Fibrosis
After being told she had months to live, Diane Ladd lived more than seven years with idiopathic pulmonary fibrosis. Laura Dern’s reflections on caregiving highlight perseverance, purpose, and the realities families face with PF.
A Time for Reflection: Small Health Commitments That Matter When Living With Chronic Lung Disease
After his pulmonary fibrosis diagnosis, Sean Tully chose reflection over urgency. By focusing on rest, movement, learning, and sustainable change, he reshaped his approach to health in ways that felt supportive rather than overwhelming.
PF Warriors Newsletter – December 2025
From research and advocacy to education and peer support, 2025 showed the power of patient and caregiver voices working together to shape care, advance understanding, and bring hope to the pulmonary fibrosis community.
National Health and Advocacy Organizations Call on Congress to Include Life-Changing Oxygen Reform in End- of-Year Package
Twenty-seven national health organizations, including PF Warriors, urge Congress to include the bipartisan SOAR Act in year-end legislation to ensure Medicare beneficiaries can access appropriate supplemental oxygen and maintain health, independence, and quality of life.
10 Gift Ideas for People Living with Pulmonary Fibrosis 2025
The PF Warrior community helped shape this year's list of thoughtful, supportive gifts for people living with pulmonary fibrosis and the caregivers walking beside them. The focus is on comfort, connection, and simple ways to make daily life feel a little easier.
Living With PF: How One Caregiver Makes All the Difference
Jim, a longtime PF Warrior, shares how his wife Fran supports him through pulmonary fibrosis with love, humor, and everyday acts of care. Their story honors the strength of caregivers during National Family Caregivers Month.
Breathing New Life: Paul’s Transplant Journey
After years of watching pulmonary fibrosis claim the lives of his father, uncle, and brother, Paul received a life-saving double lung transplant. Through faith and perseverance, he found healing, both in breath and in spirit.
Living with Familial Pulmonary Fibrosis
When Tom was diagnosed with familial pulmonary fibrosis, he was told he had two to five years to live. Today, after a successful lung transplant, he shares his experience to inspire and inform others.
“I Wasn’t Ready to Go”: Vickie’s Path to Transplant
Vickie refused to give up. After hypersensitivity pneumonitis led to lung scarring and a transplant, she found hope, community, and a deeper appreciation for each day she’s given.
Scottie’s Light Shines Bright on World Oxygen Day
Scottie’s story reminds us that oxygen is more than equipment. It is a lifeline that helps people living with PF continue to show up for their lives, one day at a time.
Learning From Jim: A Sixth Grader’s Look at Life With Pulmonary Fibrosis
Alexa’s school project became a lesson in advocacy when she interviewed PF Warriors member Jim about pulmonary fibrosis, supplemental oxygen, daily challenges, and what it takes to keep moving forward with a serious lung disease.
PF Warriors Newsletter – April 2025
PF Warriors celebrates the launch of our first newsletter, connecting over 21,000 members worldwide. Together, we amplify voices, share resources, and raise awareness about pulmonary fibrosis while honoring our founder, volunteers, and community champions.
Oxygen Is Not Optional: Help pass the Supplemental Oxygen Access Reform (SOAR) Act
The Supplemental Oxygen Access Reform (SOAR) Act seeks to improve Medicare policies so people living with serious lung disease can access the oxygen equipment needed to support breathing, mobility, and daily life.
Letter to Congress re SOAR Act Cosponsorship
Supplemental oxygen is a lifeline that decreases mortality, reduces shortness of breath, and increases activity. The SOAR Act puts patients first, making sure they can access the oxygen modality that best fits their medical needs and lifestyle.
Walking for Breath: 32-Mile Challenge to Stop IPF
Craig, a double lung transplant recipient, is walking 32 miles in Manhattan’s Great Saunter to raise awareness and funds for PF Warriors, honoring his donor while inspiring hope for those facing idiopathic pulmonary fibrosis (IPF).
Life After a Transplant: Pete’s Story of Vigilance and Hope
After receiving a lung transplant for idiopathic pulmonary fibrosis (IPF), Pete faced an unexpected battle with cancer. His story reminds all transplant recipients to stay vigilant, advocate for their health, and never stop learning.
Gift Ideas for People Living with Pulmonary Fibrosis 2024
From lightweight cookware and slip-on shoes to books for young family members and creative oxygen tube solutions, our 2024 PF holiday gift guide offers ideas that brighten the season and support the people you care about.
PF Warriors Raise Awareness for Pulmonary Fibrosis Awareness Month
PF Warriors is rallying our community for Pulmonary Fibrosis Awareness Month 2024. Share a selfie, spread hope, and help raise awareness for patients and caregivers living with PF.
PF Warriors Launch Inaugural Newsletter – August 2024
PF Warriors celebrates the launch of our first newsletter, connecting over 21,000 members worldwide. Together, we amplify voices, share resources, and raise awareness about pulmonary fibrosis while honoring our founder, volunteers, and community champions.
Attending American Thoracic Society Annual Conference fills PF Patient with Hope
Attending the American Thoracic Society (ATS) Annual Conference renewed my hope as a pulmonary fibrosis patient. Surrounded by researchers, clinicians, and advocates, I saw a shared determination to improve treatments and move closer to a cure.
Father’s Day Tribute to Our Original PF Warrior
PF Warriors founder Bill Vick proves that pulmonary fibrosis doesn’t have to limit life. In this Father’s Day tribute, his daughters share how their dad’s strength, optimism, and love continue to inspire their family and our community.
Lend your support to the Supplemental Oxygen Access Reform (SOAR) Act
The Supplemental Oxygen Access Reform (SOAR) Act of 2024 has advanced to the U.S. House as H.R. 7928. PF Warriors urge everyone to contact their legislators and support this crucial bill improving oxygen access and patient protections.
A Reluctant Patient’s Name for Himself Became His Inspiration, Mission
PF Warriors founder Bill Vick shares how his idiopathic pulmonary fibrosis (IPF) diagnosis led to the creation of a global support community empowering patients and caregivers to live well, stay connected, and embrace hope.
PF Warriors Supports Four Pillars of Oxygen Reform
PF Warriors proudly supports the Four Pillars for Oxygen Reform alongside the American Lung Association and partner organizations. The SOAR Act of 2024 (S.3821) aims to expand Medicare access, improve patient care, and strengthen protections for oxygen users.
12 High Protein Breakfasts for OFEV Users
Living with pulmonary fibrosis and taking OFEV®? Learn how 12 high-protein breakfasts can ease stomach upset, support nutrition, and make mornings easier. These PF Warriors community favorites balance convenience, taste, and health.
10 Gift Ideas for People Living with Pulmonary Fibrosis 2023
The holiday season is here and many of us are searching for thoughtful gifts for a loved one or maybe a little treat for ourselves. If you are looking for something useful or comforting for someone living with pulmonary fibrosis or interstitial lung disease, this list offers practical ideas that can make daily life a bit easier.
10 Essentials to Check Before You Buy a Portable Oxygen Concentrator
Before buying a portable oxygen concentrator (POC), learn the 10 essentials, oxygen flow vs. settings, battery life, weight, noise, and cost, to help pulmonary fibrosis patients and caregivers choose the right device with confidence.
Traveling with Oxygen: Mare and Ray’s Story
After Ray’s diagnosis with interstitial lung disease (ILD) and COPD, he and his wife Mare thought their traveling days were over, until PF Warriors helped them rediscover hope, flexibility, and the joy of life on the road.
Alice & Joe: The Power of Hope
Alice cared for her husband Joe through his pulmonary fibrosis journey and lung transplant, finding strength in faith, poetry, and community. Her story reminds caregivers that hope and love can carry us through even the hardest days.
Living with Purpose: Jean’s IPF Journey
Diagnosed with idiopathic pulmonary fibrosis (IPF) at 72, Jean turned fear into resilience. With treatment, family, and the PF Warriors community, she embraces each day with gratitude, offering hope and strength to others living with pulmonary fibrosis.
Healing & Overcoming with Pulmonary Empowerment (HOPE)
Pulmonary fibrosis is personal for Teresa, who lost her father and several relatives to IPF. Through advocacy, she’s turned grief into purpose, reminding us that hope lives in every patient, caregiver, and family who keeps fighting.
I Only Saw a Doctor at My Husband’s Insistence
From an unexpected idiopathic pulmonary fibrosis (IPF) diagnosis to a double lung transplant, Maryluz’s story highlights survival, gratitude, and resilience. She empowers others by honoring her donor and inspiring PF Warriors with education, advocacy, and community support.
Erika: My Extraordinary Care Partner
Pulmonary fibrosis is personal for Teresa, who lost her father and several relatives to IPF. Through advocacy, she’s turned grief into purpose, reminding us that hope lives in every patient, caregiver, and family who keeps fighting.
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The page was last reviewed on January 26, 2026