Breathe In: A Cystic Fibrosis Podcast

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. Holly talks about the adjustment period and how her husband has acclimated to the CF life. She gives advice to those that are wanting to get married. The podcast ends with Holly and Tiffany's recommendations for the week.

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 placed on disability. The two chat about how being on disability has helped Audrey's health in a positive way. They end the podcast with the usual fun recommendations segment (Girly ones, sorry guys!). You won't want to miss this episode!

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 on the medication and what his hopes are for the CF community. Gunnar and Tiffany reaffirm the scientific community's commitment to a treatment for the final 10% of CF patients and a cure for all CF patients.

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 adhere to flu shot recommendations from the CDC and how patients and families can be proactive during peak cold and flu season.

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 actually defines it as doing things that are often uncomfortable or that we avoid, and ultimately contribute to bettering our minds, bodies and spirits. The podcast is then broken down into seven buckets:

1) Saying No

2) Accepting Help

3) Practicing Self Compassion

4) Letting go of what you can't control

5) Making time for things or people that are important

6) Setting boundaries with people that bring you into their drama or dysfunction

7)Making a long list of short term and long term goals

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 function and then ultimately needing to have a lifesaving double lung transplant. They end the podcast with awesome recommendations and advice for those wanting to have a child. You won't want to miss this!

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 consulting with the CF team in the Denver area due to a specific bacterial infection, but when she was finally ready to move to Denver's care system full time, she did so through the inpatient ward following a medical emergency. Gunnar's transition, while certainly still on going, has been less rocky, but he talks about moving over a clinical trial, meeting a new CF team and starting grad school.

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 might have cystic fibrosis, the risks, realities and what good often comes from them. Jack talks about his favorite part of the book and shares some memories that didn't make the final publication. Finally, Darcy and Jack offer some advice for people who might be dating someone with CF. "Salt in My Soul: An Unfinished Life" by Mallory Smith can be purchased wherever you get your books!

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 into organ rejection following and the lead up to her May transplant at Duke. Since being transplanted, Amanda has suffered from two very serious complications related to the surgery and subsequent recovery, including a brief bought of paralysis. While Amanda does stress that her complications were considered quite rare, she talks about persevering through them and her overall will to live. Amanda has since recovered and is working hard in a physical rehab program!

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 recent gall bladder surgery. The duo recount times when the procedures were either easier or more difficult than they had anticipated. Tiffany talks about a sinus surgery and Gunnar recalls the time an oral surgery unrelated to CF went bad!