Good things happen on the way to the forums

Have you discovered the Pulmonary Fibrosis News Forums yet? Think of them as a virtual café where you can stop in and read a couple of items from the discussion areas, comment on questions from others, or pose a question to the group. Each time a new member joins, I try to send them a simple message: “Welcome to the forums. Ask questions and be curious.”

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2017, I searched for more knowledge about my disease. I found a reliable source in the Pulmonary Fibrosis Foundation. The information on its website was factual and generally easy to understand.

I initially came to Pulmonary Fibrosis News for the writing of a former columnist, Kim Fredrickson. She’s since passed, but I learned much from her. Hers was the voice of the patient, in her own words, and an invitation to join her on her journey. I don’t remember exactly when I later discovered the forums, but I’m glad I did.

The experience

The forums are a moderated discussion area at this website. A link at the top of this page will take you to the landing page, where you can register. I’m one of two moderators, along with Charlene Marshall, who writes the column “Living with IPF.”

The topic areas are as diverse as the members. They’re a catch-all of general questions, discussions focused on caregivers, and topic areas based on patient age and location. You’ll find conversations about supplemental oxygen, our newest subtopics, or medications common to pulmonary fibrosis (PF) patients.

Currently, the Pulmonary Fibrosis News Forums have around 4,500 subscribers. They come from around the world seeking information from others like you, but they also come to share experiences from their journeys.

As with any community, the forums have rules that serve as a code of conduct. I’m not going to offer any great detail here, but I encourage you to review the code when you join. You should always feel free to call on me or Charlene if questions come up.

We want you to share your experiences with other users. I ask that you understand that your experience is unique. What you share may not apply to another person, but if any forum user finds even a nugget of that information helpful, what you’ve said is valuable.

Therapies for PF patients are as unique as each individual journey. Before changing the way you take a prescribed medication or add an over-the-counter supplement, check with your care team. Don’t just go by a commenter’s experience.

I was fortunate to receive a bilateral lung transplant in July 2021. I followed my care team’s instruction during the pre-transplant portion of my journey, staying careful not to take any over-the-counter medications or supplements that could interfere with my eligibility for the surgery. I’m likewise careful today, as a post-transplant patient, to make sure my new lungs are healthy and at home in my body. Always be completely transparent with your care team about what you’re taking.

Please consider this column a personal invitation to join the forums. I want you to ask questions and be curious. We can learn from each other, and together we can make every breath count.

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.