Finally, I’m back to a Pulmonary Fibrosis Foundation Summit
I met readers, learned from sessions, and even served as a speaker this year
This column is my 100th for Pulmonary Fibrosis News. Thank you for allowing me to share my journey with you every week. I’ve been humbled by so many of you who feel comfortable sharing your stories with me and other readers.
I’ve recently returned from the Pulmonary Fibrosis Foundation (PFF) Summit 2023 in Orlando, Florida. One of my summit highlights was getting to meet my readers in person. Some of you knew I’d be attending and sought me out. Others crossed paths with me during the summit. I laughed out loud at one reader’s comment: “I read your s**t every week.” I don’t think he was referring to the quality of my writing.
The PFF staff provided a tremendous learning and social experience for patients, caregivers, transplant patients, and medical professionals. The summit, normally held every other year, missed 2021 because of the COVID-19 pandemic, so this year’s meeting was the first since the 2019 gathering in San Antonio.
I’d almost missed that 2019 summit, which was my first. After I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), I spent that first year navigating a range of emotions, from calm to chaos, and couldn’t attend. When the 2019 summit rolled around, I’d just been prescribed oxygen, to use primarily during exertion. It seemed I wouldn’t be able to attend that year, either, but thankfully, my care team cleared me to attend in person after all.
My time at the PFF Summit 2023
This year’s summit was held at the JW Marriott Orlando, Grande Lakes, which provided everything from accommodations to a variety of meeting spaces. My days began early and ran into the early evening.
Time for breaks and meals was built into the schedule. Those who’d had a transplant, including me, wore white lanyards so servers could recognize us and offer plated meals instead of a buffet. Since I’d had a bilateral lung transplant in July 2021, this option was important to me; post-transplant patients are discouraged from dining at buffets, where germs and illnesses can spread more easily.
A side benefit of those identifying white lanyards was that we could easily find the people to ask about their transplant experiences.
This year the presentations were well done, whether in the large ballroom or the smaller breakout rooms. One of the sessions’ features was the ability to scan a QR code and connect to their audio using a smartphone. This accommodation enriched the experience of those with some level of hearing loss.
I had the opportunity to be a part of the “faculty” for the event, as I was honored to speak Saturday morning as part of a panel on preparing for a transplant.
My wife, Susan, attended the summit with me. While we attended some sessions together, we found others more appropriate to attend separately.
Susan, for instance, attended a session for caregivers that she felt was handled extremely well. It offered a panel discussion chaired by a doctor and including three caregivers, a registered nurse, and a social worker. Susan felt the panel captured the caregiver experience perfectly.
While my column’s limited word count doesn’t allow me to name each presenter, the program does. I didn’t see a single presentation that didn’t meet expectations.
All the sessions were recorded and will be available on the PFF’s YouTube channel early next year. Yes, 2024 is less than 45 days away!
As you might imagine, I had happy moments there, especially when seeing friends in person. Some of them I’d known only virtually. Our meetings still felt like a reunion of sorts.
In some moments, a person became overwhelmed by the discussion or emotional when asking a question. The community didn’t disappoint, rallying around them and offering tissues and hugs or just standing by them in the moment. These emotional moments were balanced with new relationships, a sense of community, and what I can only call a sense of genuine caring.
Finally, I was able to meet Franck Rahaghi, MD, who is the new chief executive officer and chief medical officer of the PFF. He’s kindly consented to an interview, which I’ll bring to you in the coming weeks.
Again, thank you for allowing me to share my thoughts with you in these 100 columns. I’ve told you before that they’re therapy for me and a way to make every breath count.
If you were in Orlando for the PFF Summit 2023, please share your thoughts on it in the comments.
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.