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Breathe In: A Cystic Fibrosis Podcast

Gunnar Esiason and the Salty Cysters

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A dynamic podcast exploring the different experiences people with cystic fibrosis may face during their lives. Gunnar Esiason joins Tiffany Rich and Lea Faraone, otherwise known as the Salty Cysters, to talk about the in's and out's of cystic fibrosis from some of the anxieties and stresses that patients face to some of the lighter sides of the disease. Breathe In: A Cystic Fibrosis Podcast aims to characterize the disease in a positive way while showcasing the challenges that people with cy ...
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This week on Breathe In, Tiffany is on her own again while Gunnar battles his way through final exams. Tiffany is joined by a new voice on the podcast, Holly Seay, 24, from Georgia, a newlywed with CF. Holly takes us through her life with CF and how she met her now husband. Prior to their wedding, Holly and her now husband never lived together. Hol…
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On this episode of Breathe In, Gunnar takes the day off and Tiffany takes over with a returning guest, Audrey Kostelec, 23 from Washington State. You may remember Audrey from the emergency podcast we had on FaceBook Live in March. This time we talk about Audrey and her CF journey. Audrey explains how she was misdiagnosed and has recently been place…
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A mere few days following the FDA's approval of Trikafta, cystic fibrosis patients across the United States began dosing. This week's podcast looks back at Gunnar's time in the triple combo study. Think of this podcast as a follow to Gunnar's blog over on GunnarEsiason.com. Gunnar talks about both the immediate and long term affects of having been …
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Gunnar and Tiffany welcome back the podcast after a brief (unplanned!) hiatus. Tiffany announces that she started working a new job and has begun living out her goal of working full time. Gunnar talks about fighting through a round a midterms in the first quarter MBA term. The duo chat about getting their flu shots, why CF community members must ad…
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After a few weeks off, Gunnar and Tiffany return to the podcast with Gunnar's girlfriend, Darcy. This time, though, Darcy puts on her social worker hat and takes the podcast through a clinical lens into the world of self care. It's established early on in the podcast that self care is a bit of a misnomer these days because of Instagram, while Darcy…
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Tiffany is joined by Ashlee Terwilliger, 35, with cystic fibrosis and a double lung transplant survivor. The two talk about Ashlee's life growing up and how becoming a teacher affected her health and how she handled all the germs. As her health declined, she became pregnant and Ashlee takes us through being pregnant and labor with a low lung functi…
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Olivia Duesterberg, 26 with cystic fibrosis, joins the podcast from Denver, Colorado. Olivia, like Gunnar, is fresh off a move to a new place, so this week on Breathe In, the team tackles what it takes to transition care, a routine, and everything in between when someone with CF needs to move to a brand new place. Olivia mentions that she had been …
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With Tiffany off for the week, Gunnar is joined by his girlfriend, Darcy, and Jack Goodwin, who dated the late Mallory Smith. Jack talks about his relationship with Mallory and her posthumously published memoir, "Salt in My Soul: An Unfinished Life". Gunnar, Darcy and Jack talk about the dynamics of what goes into a relationship with someone who mi…
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Amanda Varnes, 24 with cystic fibrosis, joins Gunnar and Tiffany on the podcast for a second time. Amanda last appeared on Breathe In Podcast in November of 2018. Since then, she has been re-transplanted again, making Amanda one of the very few people in the entire world who has received three double lung transplants. Amanda talks about falling int…
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Fresh off Gunnar's colonoscopy last week, the Breathe In duo talks about their experiences going through various medical procedures, and how they are able to cope with the physical and emotional hurdles that come with them. Gunnar details a brief panic attack he had on the table in the endoscopy suite, which leads Tiffany to share a story about her…
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Carly Klassen, 22 with cystic fibrosis from Boise, Idaho, joins the podcast to talk about her digital art platform More Than Sick. Carly's Insagram account @MoreThanSick has been charging through the cystic fibrosis virtual community and features digital sketches of different women fight back against CF! Carly talks about her motivation to start Mo…
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Cat Kurban, 22, joins Tiff on this episode of Breathe In. Cat was diagnosed with cystic fibrosis at the age of 18 years old. Cat explains to Tiff how she was diagnosed after a shoulder surgery that had been an issue for quite some time. The two talk about Cat's life changing and how her routine changed tremendously. Cat shares about making her way …
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Breathe In takes a different angle this week and responds to a current event - San Francisco's proposed ban of e-cigarettes and the popular Juul device. Gunnar notes that he has some complex feelings when he comes across a smoker or someone who uses an e-cigarette - on one hand he recognizes addiction as an illness unto itself, but the economic bur…
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Somer Love joins Tiff on this week where the two talk about "reinventing" themselves after they both hit significant birthdays in the past month of May. Somer and Tiff talk about how they have this sense of wanting to take a new journey and start over in a way. Somer talks about going to her favorite place, San Diego, and having the ocean steer her…
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After a long stretch of featuring guests on the podcast, Gunnar and Tiffany return to the show's roots and have a chat with each other. Tiffany, who just returned from Hawaii with her boyfriend, Jeff, talks about being able to enjoy an active vacation after years on the transplant list. Now that she's post transplant, though, she needs to take sun …
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Chelsea Spruance rejoins the podcast along with Katie Malik, executive director of CF Yogi, to talk about their organization's free virtual yoga classes for the CF community! Katie talks about the origins of CF Yogi, and where it's headed thanks to a grant from the Boomer Esiason Foundation. Gunnar shares that he went to his first every yoga class,…
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As May comes to a close, Breathe In wraps up CF Awareness Month with two final sprint interviews. Lise-Courtney D'Amico rejoins the podcast to chat with Gunnar about how their college experiences differed despite going to the same university - Boston College. They also talk about their next chapters in life as both of them are about to embark on a …
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Gunnar and Tiffany continue May with another week of spring interviews! Tiffany talks with Tyler Smith, 23, who is living with cystic fibrosis and almost a year out from his double lung transplant, Tyler talks about his life growing up with CF and how sport was something that kept him healthy. He played golf and baseball year round and even receive…
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Breathe In features two more interviews this week as we continue charging through CF Awareness Month. Danielle Mandella, 32 with CF, joins Gunnar to talk about her very unique path through transplant. As one of the very few people with cystic fibrosis to have ever received a living donor lobe transplant, in lieu of a double lung transplant, some 16…
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In keeping with the theme for May, Breathe In features two interviews this week! Gunnar chats with Will Marler, 24 with cystic fibrosis from the UK. Will is the producer of 'Straight From the Lungs' podcast, which features Gunnar and 22 other people with cystic fibrosis! Will talks about the project, which began in 2016, as well as his involvement …
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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 fi…
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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!…
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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 …
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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 do…
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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 famil…
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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. …
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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, …
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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 f…
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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,…
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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,…
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Morgan Gindstaff, 28 with cystic fibrosis, and Caitlin Lombardi, 23 with cystic fibrosis, join Gunnar and Tiffany on the podcast this week for a friendly debate over the pros and cons of the forthcoming movie, Five Feet Apart. The lead in to the movie and the PR campaign around it have been polarizing, where some people with cystic fibrosis are exc…
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Two very special guests join the podcast this week, Gunnar's girlfriend Darcy and Tiffany's boyfriend, Jeff! Leading into the episode the duo asked the Instagram community to direct the conversation, so rather than repetitive about, "how to tell someone new about CF," the chat turns towards diving into some of the guilt people with CF may feel in t…
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Gunnar is back on the podcast after his voice has finally recovered! Rima Manomaitis (also known as @Lung_Story_Short on Instagram) joins Gunnar and Tiffany for a Feeding Tube Awareness week podcast. Rima takes the podcast through her double lung transplant process, talks about moving halfway across the country despite failing health and notes that…
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Tiffany is joined by a fellow double lung transplant recipient, Auburn Stevens, who has had over 30 sinus surgeries due to cystic fibrosis. The two chat about how Auburn has had 2 lobectomies before her transplant, which is a new concept for Tiffany. Auburn shares reasons for her surgeries of sinuses and a major scary in office procedure where her …
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With Tiffany away on vacation, Elsie Tellier, 21 with cystic fibrosis and a senior at Harvard joins the podcast this week. Elsie is a passionate disabilities advocate and fashion blogger. She talks to us about some of her work within the Harvard disabilities association and how she had to fight uphill to advocate for proper accommodations, while al…
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Gunnar and Tiffany return to Breathe In after a brief hiatus to talk about New Year's "goals" since Gunnar doesn't like the term, "resolutions." The pair go through some health related goals to begin. For Gunnar, he wants to try out yoga after taking advice from another person living with cystic fibrosis. Tiffany wants to continue to live to honor …
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Join Gunnar and Tiffany in celebrating the life of Lea Faraone as told by Lea's voice! Tiffany and Gunnar remember Lea, one half of the Salty Cysters and the pulse of the Breathe In trio, in this very special episode that goes back and pulls clips from past episodes. Laugh, cry, but most importantly share in the love that was Lea's life. We will mi…
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Somer Love is back on the podcast to talk about her open letter to family and friends about the holidays and cold/flu season. Gunnar, Tiffany and Somer chat about some of the precautions they take when it comes to health and safety during family gatherings and how they communicate their needs to their family and friends. The three discuss a recent …
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Tiffany's lifelong best friend, Kelsey Sleek, joins the podcast to celebrate Tiffany's 2nd lungiversary! On November 30, 2016, Tiffany was wheeled into the operating room for a life saving double lung transplant, and her life has changed for the better ever since. Kelsey talks about the support system side of cystic fibrosis and what it was like to…
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Tiffany and Lea chat with Miss Los Gatos 2019, Camille Hunziker, a 22 year old pageant queen who has dedicated her time raising awareness for cystic fibrosis as a “Queen for a Cure.” The girls ask about how Camille got into pageants. She explains how the pageants work and how it’s been such a positive addition to her life with confidence. Camille s…
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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 mara…
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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…
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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 …
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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 ow…
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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, wh…
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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 readi…
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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 Gun…
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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…
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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, uncomfo…
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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 ment…
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