PF Warriors - Pulmonary Fibrosis, IPF, other Rare Lung Diseases

PF Warriors - Pulmonary Fibrosis, IPF, other Rare Lung Diseases Pulmonary Fibrosis (PF) is a disease that strikes over 48,000 people a year in the USA alone.
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“This important hearing has the ability to shed light on the important gaps in the translation of potential therapies in...
11/06/2025

“This important hearing has the ability to shed light on the important gaps in the translation of potential therapies into approved ones. The better the FDA understands rare diseases like pulmonary fibrosis, and the way they impact Americans, including seniors, the more effectively and efficiently the agency can move therapeutics to the people for whom they are intended to help.” - PF Warriors

WASHINGTON, D.C. – Today, Chairman Rick Scott and Ranking Member Kirsten Gillibrand of the U.S....

National Family Caregivers Month: Caregiver Shoutout! 💙Caregivers stand alongside patients as the heart of our PF Warrio...
11/05/2025

National Family Caregivers Month: Caregiver Shoutout! 💙

Caregivers stand alongside patients as the heart of our PF Warriors community.

During National Family Caregivers Month, we’re celebrating those who show up day after day to care, comfort, and connect. We’re excited to share this story from PF Warrior Jim, who nominated his wife Fran as his incredible care partner and source of strength.

Fran has been by my side through everything since my diagnosis with pulmonary fibrosis (PF). She plays such an important role in my life, making sure I always have what I need when I need it. She understands the hard days and somehow always knows how to help.

It’s the little things she does that make such a difference. She brings my morning coffee home when she is out, so I don’t have to drive to do it myself. Fran gets my oxygen from downstairs, so I don’t have to make a trip down and up, which helps me save my energy. She notices when I’m struggling and steps in before I even have to ask.

As my PF has progressed, Fran’s support has stayed strong. She’s with me for every appointment and listens carefully during every PF Warriors call. When I was first diagnosed, and later when doctors told me my time might be shorter than expected, she stood by me through it all. She gave me comfort when I needed it and space when I needed to process the news.

Fran is my rock. Our marriage vows say “in sickness and in health,” and she has lived those words every single day.

She also brings humor and light to our days. Sometimes she’ll step on my oxygen hose just to make me laugh, and we have plenty of inside jokes that keep us smiling. Our kids and grandkids check in often, reminding us to stay positive and active, and that keeps us both going.

I do my best to support her, too. I try to show my appreciation and help out where I can. We spend time together whenever possible, and I never take her for granted.
Fran is amazing, loving, caring, and truly my rock. I couldn’t do this without her.
— Jim

Today, we join so many others in remembering actress Diane Ladd, who lived with pulmonary fibrosis for several years. Sh...
11/04/2025

Today, we join so many others in remembering actress Diane Ladd, who lived with pulmonary fibrosis for several years. She passed away yesterday. Our thoughts are with her daughter Laura Dern, and their loved ones.

Photo credit: Michael Buckner/PMC

The American Thoracic Society conference took place in San Francisco this past May. Nearly 14,000 medical professionals ...
11/03/2025

The American Thoracic Society conference took place in San Francisco this past May. Nearly 14,000 medical professionals attended to learn, connect, and help shape the future of lung care. We love how ATS describes it: a place where today’s science meets tomorrow’s care.

PF Warriors had three patients who spoke from the heart and shared what life with pulmonary fibrosis looks like. Their voices help bring patient experiences to the center of research and care conversations.

Today, we finally get to share those videos with you! https://site.thoracic.org/advocacy-patients/par/patient-voices-interviews

We are so proud of our volunteers for representing our PF Warriors community of patients, caregivers, and families. Thank you to ATS for giving patients and caregivers a platform!

Hear from individuals living with respiratory diseases, critical illnesses, and sleep disorders in the American Thoracic Society's Patient Voices.

Join PF Warriors as we welcome Dr. Yolanda Mageto for a clear and practical conversation about vaccines, including what ...
11/01/2025

Join PF Warriors as we welcome Dr. Yolanda Mageto for a clear and practical conversation about vaccines, including what is recommended, what has changed, and how to make a plan with your care team.

Saturday, November 8, 2025
10:00 am Central Time (US)
Online via Zoom

Register Here! https://bit.ly/PFWNOV2025

Whether you’re newly diagnosed, a long-time PF Warrior, or a caregiver supporting a loved one, this session will offer meaningful insights and practical tools to help you stay informed and protected.

What You'll Learn:
1. Understand Why Vaccinations Matter in Pulmonary Fibrosis: Learn how PF and reduced lung function increase the risks of respiratory infections, and why vaccines can help prevent severe illness, hospitalization, and complications for patients and caregivers.
2. Know Which Vaccines Are Recommended and When to Get Them: Identify key vaccines relevant to PF (including influenza, COVID-19, RSV, pneumococcal, and shingles), understand general timing and booster guidance, and recognize special considerations such as age, immunosuppression, transplant status, and comorbid conditions.
3. Gain Confidence in Making Vaccination Decisions with Their Care Team: Feel equipped to discuss vaccine benefits, risks, common myths, and side effects with healthcare providers, ask informed questions, and create a personalized vaccination plan as part of your ongoing PF care.

Living with pulmonary fibrosis can feel overwhelming, especially in the beginning. Our PF Warriors Patient Guide was wri...
10/29/2025

Living with pulmonary fibrosis can feel overwhelming, especially in the beginning. Our PF Warriors Patient Guide was written by patients and caregivers who understand the day-to-day challenges of pulmonary fibrosis.

It offers practical tools, lived wisdom, and reassurance from people who have walked this path. Our motto of patients helping patients is where this guide was born.

Here’s just some of what you’ll find inside:
• Understanding diagnosis and working with your care team
• Medications and supplements
• Managing symptoms and daily life
• Emotional and psychological support
• Nutrition, exercise, and oxygen use
• Travel tips and preparing for appointments
• Guidance for caregivers and family support

You can read or download the guide on our website.

To see recommended resources, select one of the gray bars below . Most links will leave the PF Warriors website. Use your browser back function or set a bookmar

Save the Dates – PF Warrior November Meetings Are Here!We’d love to see you this month. Mark your calendar and join us.•...
10/27/2025

Save the Dates – PF Warrior November Meetings Are Here!

We’d love to see you this month. Mark your calendar and join us.

• Saturday, November 8 | 10:00 am – 11:30 am CST
PF Warriors Educational Meeting

• Tuesday, November 18 | 10:00 am – 11:30 am CST
PF Warriors Spanish Educational Meeting

• Thursday, November 20 | 10:00 am – 11:30 am CST
Warrior to Warrior Open Q&A

More details and registration links are available on our website.
https://pfwarriors.com/events

Caregivers, we see you!PF Warriors is getting ready to celebrate National Caregivers Month in November. The theme this y...
10/25/2025

Caregivers, we see you!

PF Warriors is getting ready to celebrate National Caregivers Month in November. The theme this year is Plug-in to Care, which focuses on helping caregivers feel supported and connected.

If you care for someone living with pulmonary fibrosis, we have a resource that may help. Our Caregiver’s Guide was written by caregivers in the PF Warriors community. It offers practical information and lived experience. We hope it answers some of the questions you may have and gives you a sense of support.

You can read it online or download a printable version here:

Written by members of PF Warriors who are caregivers, family and friends, this guide is full of practical information. We hope it helps answer some of the quest

When the Lungs React: Understanding Hypersensitivity PneumonitisDr. Zohra Prasla explains how the lungs react to environ...
10/22/2025

When the Lungs React: Understanding Hypersensitivity Pneumonitis

Dr. Zohra Prasla explains how the lungs react to environmental triggers in hypersensitivity pneumonitis (HP), highlighting exposures, testing methods, and treatment options, plus the critical importance of finding and removing the cause.

Watch now! https://pfwarriors.com/videos-2025

“At PF Warriors, we know that respiratory therapists are a lifeline for patients and families facing pulmonary fibrosis....
10/21/2025

“At PF Warriors, we know that respiratory therapists are a lifeline for patients and families facing pulmonary fibrosis. Your skill, compassion, and commitment make an immeasurable difference every day. During Respiratory Care Week, we honor and thank you for walking beside us in the fight for breath and for hope.” - Dolly Kervitsky, RCP, CCRC, CNP, President, PF Warriors

Meet Paul, a PF Warrior Who Shares His Story of Family and FaithPaul was diagnosed with idiopathic pulmonary fibrosis (I...
10/20/2025

Meet Paul, a PF Warrior Who Shares His Story of Family and Faith

Paul was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2019. His family’s connection to this disease goes back decades. His dad passed away from IPF in 1979 at only 55 years old, at a time when lung transplants weren’t even an option. His uncle also died from IPF in 1987. Years later, in 2019, Paul and his brother Steve were diagnosed with IPF. It felt like history was repeating itself.

“In October 2023, I visited my son in San Diego, and the steep decline began. I could barely drag my feet across the sandy beach without my oxygen saturation dropping into the low 70s, and my portable oxygen concentrator just couldn’t keep up with what my body needed.

After flying home, my wife noticed a distinct difference in me and how I was struggling to breathe. We went to the clinic the very next week, where they suggested that I start getting ready for the transplant testing.”

By January 2024, Paul’s oxygen saturation was not getting out of the 70s easily. He was hospitalized and treated with high-flow oxygen and IV antibiotics. His medical team told him he couldn’t go home until they found a reliable way to meet his high oxygen needs.

“I was prescribed liquid oxygen because it was the most dependable option for delivering the high-flow oxygen I required—about 12 liters per minute, continuously around the clock,” Paul recalls. “Knowing I had a steady supply of oxygen brought me peace of mind and helped ease the anxiety I had about running out.”

On February 14, 2024, Paul received the gift of new lungs. His recovery has had its share of ups and downs.

“After my transplant, my spirometry numbers improved steadily each week until May. When they dropped by more than 10%, my team admitted me to the hospital. It turned out to be an early sign of rejection, which can sometimes happen after transplant. After treatment, my lung function stabilized, and my team continued to follow me closely.”

Today, Paul says he feels blessed to have been given “additional breaths” and wants to use them wisely.

Following Paul's example, his brother Steve chose to move ahead with a lung transplant of his own in August 2024. Sadly, Steve’s journey was different. Complications followed, and he passed away that October. Losing his brother was heartbreaking, but Paul believes Steve’s passing was also a turning point that God used to keep shaping his own path.

Through all of this, Paul’s faith grew. He said that God used this time to open his eyes to places in his soul that needed healing, like pride, anger, shame, and fear. While his physical breath was declining, he says, “the freedom in my soul was on the incline.” His relationships with others and with God have become stronger.

{Photo Image: Paul with his wife Cathleen, who was and still is Paul's primary caregiver! This image was captured post-transplant in the ICU.

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