Breathe In: A Cystic Fibrosis Podcast

It's May... CF Awareness Month! Throughout the entire month Breathe In will be featuring several people with CF or people who play a role in improving patient health and wellness in each episode. This week's episode features Chelsea Spruance, 26 with cystic fibrosis, and Karen von Berg, a physical therapist at Johns Hopkins who works with cystic fibrosis patients. Chelsea, otherwise known on Instagram as @Salty_Yogi, talks about using Yoga as a way to build strength to recover from severe illness, becoming a Yoga instructor, living in the US Virgin Islands, and how she's able to manage CF care so far off the grid! Karen, who was, at one time, Lea's physical therapist, talks about how PT can be useful for people with cystic fibrosis trying to build respiratory and physical strength.

Marge Carfora is back with the Breathe In duo for her the final episode of her April residency. This time the group tackles a Buy or Sell episode. Slippers vs Socks in the hospital, CFer vs person with CF, a debate over the use of Cyster/Fibro, CFRD topics, mobile vests, mobile nebuilzers, nebulizer cups and more!

Breathe In features a segmented podcast this week! In the first part, Marge Carfora, who is back for another episode, Gunnar and Tiffany talk about medical expenses, co-pay assistance and assistance programs they use to make living with cystic fibrosis more affordable. Tiffany and Marge, specifically, reminisce on the coverage requirements leading up to their transplants. Marge mentions that although her father had a good insruance plan for the family since he was a firefighter, there was significant financial strain given that she, her mom and sister had to relocate half way across the country so that she could get listed for transplant. Tiffany mentions that she worked with Children's Organ Transplant Association (COTA) to help crowd fund for her transplant. In the second part of the podcast, Tiffany talks with COTA CEO, Rick Lofgren about fundraising for transplants and how people with cystic fibrosis might apply!

To honor Organ Donation Awareness Month, Marge Carfora, 36 with cystic fibrosis and 14 years post double lung transplant, joins the podcast as the first ever resident guest host! Marge will feature on all the podcasts airing in the month of April. This episode tells most of Marge's life story, from diagnosis right after birth, through college, a double lung transplant in a time before the Lung Allocation Score, marriage, surviving three different types of cancer - Posttransplant lymphoproliferative disease (PTLD), cervical cancer and breast cancer - and finally becoming a mother to twins! Marge talks about overcoming each obstacle, one at a time and using her attitude as the ultimate force driving her through each complication.

Steve Hall, 30 with cystic fibrosis from the DC area, joins the podcast to talk about the March Madness Bracket experience and this year's champion. Tiffany also returns to the podcast after a week off. This year's Cystic Fibrosis March Madness Bracket was eye opening in a lot of ways, most notably with the way the "invisible illness" affects families as a whole. Gunnar, Tiffany and Steve talk about the voting trends, the demographic of the voters and why they think the March Madness exercise is important for the community. Ultimately, it's agreed that the Cystic Fibrosis March Madness Bracket is a safe space for people with CF and their families to come together to talk about some of the topics presented in the bracket.

With Tiffany out this week, Gunnar is joined by Lise-Courtney D'Amico, 25 with cystic fibrosis from New York City, and Stacy Carmona, 32 with cystic fibrosis from Orange County, California. Lise-Courtney and Stacy were connected via Cystic Fibrosis Foundation's CF Peer Connect, which pairs two people with CF in a one-to-one peer mentoring program. Stacy was initially deemed "the mentor," but their friendship has blossomed to something far beyond the intended purpose of the program. The pair share stories with Gunnar about how they inspire each other from across the country, work hard through together through a common exercise class and how Lise-Courtney recently competed in the New York City Half Marathon with their friendship in mind. Gunnar and Lise-Courtney also talk about their time at Boston College where they overlapped one year, and reminisce about the time they ran into each other on campus.

The Cystic Fibrosis March Madness Bracket is back by popular demand. This year 64 'teams' will battle it out to claim the tile of "The most SMH thing someone has said to you about CF." Colleen Lewis, 33 with cystic fibrosis, joins the podcast this "Selection Thursday" episode. The bracket breaks down into four regions - Questions, Recommendations, Statements and Things Said to Parents/Partners/Friends. Laugh along with Breathe In this week as we get set to vote on our very own bracket challenge!

Voting opens 3/22 on the Breathe In and Salty Cysters Instagram pages, as well as GunnarEsiason.com

Aubrey Kostelec, 22 with cystic fibrosis, joins Gunnar and Tiffany for an emergency podcast following a crazy day within the cystic fibrosis community after it was discovered Five Feet Apart launched an insensitive ad campaign relating cystic fibrosis to general lifestyle inconveniences. The patient community has railed to demand a public apology from the filmmakers, production company and Justin Baldoni.

Breathe In is coming at you with a new style of podcast, this week we are introducing "segments." The first half of the podcast includes Gunnar and Tiffany talking about how they are able to make medical decisions, and control conversations inside the clinic. They lean on information coming from care providers, while also balancing quality of life, and anecdotal experiences form other patients. The second half of the podcast is an interview with Folia Health. Gunnar interviews Nell Meosky Luo, founder and CEO of Folia, and Celeste Hermes, a sophomore at the University of Texas, CF patient and project coordinator at Folia. Nell and Celeste talk about giving patients and care providers a look at the qualitative experience of living with cystic fibrosis through the Folia portal, as well as some of their up and coming program initiatives designed to give patients the tools necessary to live well!

Molly Pam, 30 with cystic fibrosis, joins the podcast all the way from Israel. Molly talks about living abroad with cystic fibrosis (and studying abroad as a college study) with low lung function. She also takes Gunnar and Tiffany through the Cystic Fibrosis Reproductive and Sexual Health Collaborative's (CFReSHC) upcoming projects and initiatives, including a family building guide. A common theme across the CF community is that when it comes time to think about family planning/building, there just aren't enough resources out there, and CFReSHC aims to a go to place for those needs!