Breathe In: A Cystic Fibrosis Podcast

Meredith Gaito, 26 with cystic fibrosis, joins the podcast to talk about her experience with running the NYC Marathon with Team Boomer just a few weeks ago! Meredith mentions that uses exercise and physical fitness as a way to actively treat her CF, she talks about her training routine and overcoming an infection in the weeks leading up to the marathon.

Meredith is also the director of a cystic fibrosis documentary that is in post production, "Breathing on Everest," which follows Nick Talbot's journey to becoming the first person with cystic fibrosis to summit Mt. Everest. She talks about some of the challenges her production crew had to overcome by virtue of having multiple people with CF work on the same movie and also the physical limitations placed upon her by her health, which prevented her from joining the team in Nepal. Despite all of the adversity, Meredith is super excited for the CF community to see her finished product within the next year. Meredith also weighs in on "Five Feet Apart" from a filmmaker's perspective and the trio discusses disaster relief for CF victims of the ongoing California wildfires.

The trailer for "Five Feet Apart" dropped last weekend, so the trio shares their initial thoughts about cystic fibrosis on the Silver Screen. Gunnar has been outspoken about some of the issues he has with the film as seen through the lens of the trailer, from portraying people with CF as being consumed by death to pity-seeking victims. Tiffany is a little bit more optimistic for the forthcoming movie and has even reached out to director Justin Baldoni. Lea shares that she suffered from an anxiety attack just hours after watching the trailer. The chat turns to the topic of awareness. Many commenters in the CF community are accepting the film for what it's worth under the guise of "awareness," so the group chats about what it may mean for the community at large. Ultimately the trio does agree that the storyline and marketing campaign around the film has seemed tone-deaf, which has absolutely created a significant divide within the CF community. The podcast finishes with an appeal for the production company to address the issues that this film has seemingly created within the larger patient and family population.

Amanda Varnes, 23 with cystic fibrosis, joins the podcast to talk about CFRD, double lung retransplantation and fungal infections. Amanda's battle with CF has been nothing short of inspiring, and is clearly evident in her amazingly bubbly personality. Amanda contracted a pan-resistant fungal infection at an early age, which led to her first double lung transplant in 2015. Rejection led her to a second transplant in 2017. The podcast also dedicates time to CFRD, which Amanda was diagnosed with when she was 16. Amanda talks about the emotional and physical burden that CF put on her in high school and offers some advice to families new to the world of CFRD.

Breathe In responds to Gunnar's blog "It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise." The blog ended up being quite divisive, so the trio seeks to know "why?" Gunnar, Lea and Tiffany agree that it is possible to compliant with their mediations 100% of the time and they say why they are in their own lives. The conversation gets a bit heated when they start to respond to some of the comments on the blog post...

[listener discretion advised for some language]

You can see the blog post here: http://www.gunnaresiason.com/possible-100-compliant-cf-treatments-youre-wrong-think-otherwise/

Breathe In wraps up NACFC week with another Facebook Live podcast. Gunnar and Tiffany are again joined by Amy and Darcy. The group starts the conversation with feedback on the "partnering" plenary, before moving on to "disease disclose," mental health and CF & working. The conversation turns towards each host's favorite part from the conference, what they didn't like and what they want more of next year!

The trio is not only joined by Amy again, but also Darcy today. For those of you who may be new to the podcast, Darcy, who doesn't have CF, is Gunnar's partner and a licensed social worker (LMSW). Darcy joins the podcast LIVE from NACFC in Denver. She gives her perspective on being at the conference and all the opportunities that sadly aren't readily afford to patients who can't attend out of fear of cross infection. Darcy also shares a little bit of both good news and bad news with the podcast about the state of mental health care in cystic fibrosis. The conversation also focuses on the plenaries from last night and this morning, which discussed infections and inflammation respectively. The podcast ends with a few questions from the Facebook Live audience and a some thoughts from today's co-hosts about how to make NACFC more patient inclusive, while also giving patients the ability to virtually network...like the people who are able to attend in person.

The 2018 North American Cystic Fibrosis Conference is here! Breathe In will be recording LIVE podcasts Thursday, Friday and Saturday during the conference on the Boomer Esiason Foundation's Facebook page.

In this episode, the trio is joined by Amy, 37 years old with cystic fibrosis. Amy is currently writing Drug Development Wednesday articles on Gunnar's blog.

They recap the morning live stream session: airway clearance vs. exercise, airway clearance devices and disease severity. Amy has been very vocal about patient involvement in NACFC, so the conversation turns to how Cystic Fibrosis Foundation may better include patients in an event that otherwise excludes them. Finally the podcast wraps up with a few questions from live listeners and what the group is looking forward to most over the next couple of days!

Breathe In kicks off Season 2 with an episode dedicated to world travel. Lea just returned home a trip to Europe, while Gunnar is coming off a month and half worth of business trips. The trio recognizes that traveling with CF can be a stress point, especially because of packing and repacking medications before and during a trip. Lea and Tiffany say they organize their medications by each day when they pack. Gunnar, on the other hand, organizes his medications into their delivery methods - oral vs. inhaled. The group also talks about the importance of being transparent with airlines, airport workers and security agents. Finally, Tiffany (of course) brings Taylor Swift into the conversation, but Gunnar and Lea talk about their displeasure with her last album.

Cystic fibrosis is a brutal, unrelenting illness, but there is a lighter side to the disease. Like anything in life, simple mistakes or seemingly very serious experiences can also be funny. Gunnar, Lea and Tiffany tell of a few times when cystic fibrosis led to uncontrollable laughter, from recovery room stories, to the "smelly side" of CF, uncomfortable conversations and a number of awkward moments. The trio also agrees that humor is an effective coping mechanism and hopes that others are able to look back on some very serious moments and laugh!

The trio talks about the times they've experienced guilt in dealing with CF. Guilt comes in many ways, and as Gunnar says, isn't generally recognized until after the fact. He thinks guilt masks itself as frustration or anger. Guilt seeps into their lives mostly when they are sick and they feel like people are making unusual accommodations. Lea mentions that guilt is one of her most difficult challenges to deal with. She talks about having a hard time articulating her guilt to her support system and struggles with accepting helping. Tiffany talks about the days before her transplant when she was entirely reliant on her parents to survive. How does guilt impact your life with CF?