Making it Matter with Gunnar Esiason and Julia Rae

Claire Wineland, 20 with cystic fibrosis from California, joins the podcast to talk about her life with CF, her charity, Claire's Place, and all over her advocacy work within the CF community. Most recently Claire has been a featured motivational speaker and tremendous role model for people with, or without, CF. She mentions that she started her charity when she was 13 after dealing with some significant health issues. Claire also touches on some of the things that motivate her as well as her decision not to go onto the Lung Transplant list. Ultimately Claire is your typical, extrodinary 20 year old - bubbly, fun and living life to the fullest!

Josh Lewellyn-Jones joins the podcast again to recap his 24 hour fitness challenge. He talks about the amazing reach his event had, over 8 million people worldwide, coupled with his platform moving forward. Thanks to the event's success he is launching Team 24/7 as well as a charity CF Warriors, which are efforts to help motivate people to use exercise to redefine their lives. Finally Josh teases next year's fitness event, which is an attempt at a fitness world record.

Travis Flores, 26 living with cystic fibrosis, joins the podcast to talk about his journey through life with CF, advocacy, acting/writing/producing, transplant and now chronic rejection. Unfortunately this past fall, Travis was given the news that his life saving double lung transplant was beginning to fail as his new organs entered a state of chronic rejection. Just this week Travis learned that his body is fit for re-transplant and has been officially listed for a second life saving procedure. You can check out Travis' blog, "Chronically Happy" at www.ChronicallyHappy.org

Jon Whitbred, 36 living with cystic fibrosis and father of 3, joins the podcast to talk about what it's like to be both a dad and CF patient. Infertility is very common among men with CF, so Jon talks about he and his wife's path through IVF as well as some of the emotional burden that comes along with it. Aside from being a family man, Jon also works full time, so he talks about balancing life as a CF patient, father and workingman. He says that his routine and support system are invaluable to his health. His advice to other people with CF who might be thinking about starting a family, is to make sure everything is in place, health, finances and support system before taking the next big step!

Aleeya and Alani Young, 18 year old twins battling cystic fibrosis, and better know as the Salt Cysters, join the podcast to talk about their lives with cystic fibrosis. Recent high school graduates, they discuss some of their ambitions, including both of them heading off to the University of Cincinnati in the Fall. They've created the Salt Cysters YouTube channel which aims to raise some awareness for CF, show how they are able overcome adversity and life a healthy lifestyle.

Julia and I welcome Luke Doherty, 26 with cystic fibrosis from Dublin, Ireland, to the podcast this week. Luke talks his recent journey through a double lung transplant, which has needed to include chemotherapy treatment for PTLD. To that end, we talk about some of the differences between the American and Irish transplant listing procedures. Luke mentions that despite his failing health prior to transplant, he made fitness a priority in his life and he ultimately credits that to an initial speedy recovery. As you will find out, fitness is a major part of his life, to the point where it serves as a way for him to find a release from the challenges of CF. Luke is still very much in recovery from his transplant thanks to the PTLD, but he is making strides everyday to return to his life as a personal trainer.

Today we meet Rachael Russell, 22 living with cystic fibrosis. She is also a recent graduate of Duquesne University and 2x winner of a Boomer Esiason Foundation. Since graduating college, she fulfilled a a dream of backpacking through Europe for a month she will never forget. Rachael discusses packing for such a long trip, working around electric conversion for her Vest, concerns her family and medical team held and ultimately why she took the trip! She mentions that while not plan runs perfectly, sometimes jumping in and taking a risk is all we can do! Check out Rachael's travel blog here: https://cftraveler.wordpress.com

Julia and I invited on a couple of our old college roommates, Carmen Gatta and Miranda Borkan, on the podcast so they could give their perspective on living with someone who has CF. Carmen lived with me for three years, my sophomore, junior and senior years at BC. I met Carmen my freshman year when he lived across the hall from me and my buddy from high school, David. I felt that I wanted as typical a college experience as possible, and for that reason I lived with roommates all four years of school, including my freshman and sophomore years when I had a direct roommate (my friend David from high school). Julia on the other hand had a little bit different of an experience. She went into the roommate pool her freshman year and was assigned a suite with random roommates. So while she didn't have a direct roommate, she shared a living space with three people she hadn't met prior to enrolling into Fordham University. Miranda was one of those roommates and turned out to be one of her best friends!

Julia and I take a question this week that asks us how we bounce back after we get sick. We note that people with CF, regardless of how well they take care of themselves are always going to be at risk of developing an active infection or feeling under the weather. It can be frustrating when that happens, so what do we do to over come it? Julia and I mention a few moments in our lives when we've been down and how to reevaluate how we take care of ourselves and adapt to growing up and dealing with a progressive disease.

Sabrina Smith-Walker, 30 with cystic fibrosis from Alaska, joins the podcast. Her story is nothing short of amazing. After graduating high school she was diagnosed with cancer, which she went on to beat. From there she talks about her marriage and healthy lifestyle. Ultimately the podcast settles into Sabrina talking about her being a loving mother to her two year old son. She takes us through her conversations with her doctors, the pregnancy and finally her evolving routine as both a mom and CF patient. She notes that none of this would be possible without her incredible support system for which is so very grateful!

There is no cure for cystic fibrosis, and it is a fact that we cannot hide from. Julia and I recently received a question from the mother of a young boy with CF about the topic. While I'm not sure there really is a "right" or "wrong" way to discuss the disease's ugly side, I am confident in the idea that taking it head on is the best way to go about it. Julia and I discuss a few different strategies we have when it comes to dealing with the terminal side of CF.

William Marler, 22 with cystic fibrosis from Birmingham, England, joins the podcast to talk about his efforts in raising CF awareness on an international level. From his animated short film "PEP Mask," to his upcoming podcast series Straight From the Lungs to his London Marathon run in 2015, William has shown that it is possible to thrive with cystic fibrosis. William also discusses care in the UK as it relates to the rest of the world in a way parallel to my Cystic Fibrosis Around the World blog series currently running on www.GunnarEsiason.com

Julia and I invited the Salty Cysters to join the program this week to talk about the kind of friendship that can be created between two people living with CF. Tiffany, a recent double lung transplant recipient, lives in California, while Lea (who has already been on the podcast once before) lives in Baltimore. Lea mentions that a few years ago she was struggling and wanted to talk to someone who understood everything that people with CF go through - Tiff was that person! And now today they have a recognizable social media brand, the Salty Cysters, spreading awareness and raising money for the fight against CF. Of note: while they do mention the possibility of one day meeting in person, that is not something that I can personally advocate for. Cross-Infection guidelines are in place to keep people with cystic fibrosis safe from different strains of bacteria

Julia and I discuss the importance of being able to openly discuss cystic fibrosis with other people. Expanding the support system to include friends, teachers, teammates, school administrators, college professors, roommates and coworkers (just to name a few) can be vital to a person success in coping with CF. While it may not always be appropriate to openly share a person's CF, it is crucial to be able to talk openly about CF to an unsuspecting third party. Not only does it allow for someone new to learn about the disease, but it also helps open up the disease in a positive way.

In honor of April being National Donate Life Month, you will meet Margaret Carfora, who is 34 living with cystic fibrosis and 13 years post-double lung transplant. Margaret talks about life prior to receiving her new lungs, what led her to needing a transplant and a few complications she has had since the surgery, including Breast Cancer and Cervical Cancer. Despite all of the challenges Margaret has faced, she is a recent mother of two beautiful twins! This is an episode you will not want to miss!

Julia and I take a question from a listener this week who asks if we have a few strategies for getting kids with CF to stay compliant with their medications. We start off with a few points about taking pills (especially in bulk), then move on to the rest of CF treatments. We want to know what you do to convince your kids to stay compliant!

Josh Llewellyn-Jones joins Julia and I on the Making it Matter Podcast to talk about his 24 hr. Fitness Challenge. Despite living with CF himself, he plans on raising money and awareness for the fight against cystic fibrosis in an extreme fitness challenge, one that will test him physically and emotionally.

Julia and I discuss at what point we each realized we would be living with cystic fibrosis for the rest of our lives. For each of us, there was one moment we could point to specifically. We think nowadays, however, it doesn't have to be that way with the wide availability of educational materials.

Julia and I talk about competing in the Making it Matter fitness challenge and why people with CF need to rely so heavily on fitness. Making it Matter this week is Michael Caruso Davis, 14 with CF, who recently ran the NYC Half Marathon and raised over $25,000 for Team Boomer.

This week on Making it Matter, Julia expresses her frustration with the stomach flu. Since we're always forward thinking on the podcast, we decide to spin it into a positive and create the first ever Making it Matter FITNESS CHALLENGE to get Julia back on her feet!

Julia and I discuss some of the pros and cons of living with roommates. I spent two years living with a direct roommate, whereas Julia only had a "suite" experience in college for her freshman year. I then went on to have my own room inside a suite for the remaining years of college, while Julia decided to live off campus in a single. Listen to us debate why we chose to live that way.

Julia and I take a question from a mother who is about to send her daughter, who has CF, off to college. She wants to know what we wish we had and had not done when we got to college our freshman years at BC and Fordham. We discuss things ranging from student disability protection to clubs and activities to study habits.

From sinus surgery to hemoptysis, Julia Rae and Gunnar discuss some of the more frightening and reoccurring issues that people with cystic fibrosis can face. They point out that it is important to educate ourselves on the issues and learn ways not only to prepare, but also overcome and prevent them.

Julia and I discuss the amazing medical developments in the cystic fibrosis community. With that, though, there's certainly a feeling of anxiety since these novel medications take time to get from the test tube to the patient. We cover a few strategies that we utilize to deal with this anxiety, the number one being the need to educate ourselves. As always, please remember that nothing on this podcast can be considered medical advice, such advice can only be given by a doctor who has experience with cystic fibrosis.

Julia and Gunnar talk about some of their experiences with taking "social" vacations with their other 20-something friends. Sometimes trips are not designed to be relaxing, rather they go full speed with little time for treatments and rest, so they talk about a few strategies they have to keep up with their friends. Since it's impossible to take a vacation from cystic fibrosis, they have to take vacations WITH cystic fibrosis.

Lea Faraone, 26 with cystic fibrosis, joins Gunnar and Julia and on the Making it Matter podcast. She talks about her experiences in clinical trials, working as a nurse, thoughts on CF life expectancy and her work with the Salty Cysters, a social media platform used to spread awareness about cystic fibrosis.

Gunnar and Julia take a question from Gunnar's recent Facebook Live about the progression of cystic fibrosis. The pair share some strategies to overcome the emotional burden of a progressive disease and a few instances when they've seen the disease move forward before their eyes.

"How are you feeling?" That's a question we with chronic illness hear quite frequently, but how does it make us feel? Are people being sincere when they ask? Is it used as a conversation starter? Julia and I discuss in episode 23.

Julia and Gunnar discuss what it's like having cystic fibrosis in a working environment. They take a question from a listener whose son is about to start working full time. Gunnar who has worked several different jobs, draws on experiences of when he has (and hasn't) made it clear to his employer that he has CF and how it may impact his abilities when he is sick. Julia on the other hand, discusses what it's like to have CF within her modeling, acting and singing career.

Gunnar and Julia continue the conversation about cystic fibrosis as an "invisible illness" and how they have come to terms with the challenge. **Please note: a technical error occurred during recording, so the audio may not be perfect on some devices.

In a special episode before New Years, Julia and Gunnar answer questions from listeners. They talk about anxiety in CF; different airway clearance options; Gunnar's facial hair; and finally cystic fibrosis as an "invisible disease"

Gunnar and Julia talk about their experiences being hospitalized over the years how that has impacted them emotionally. Julia talks about a time when she was 6 years old, and notes that was the turning point when she realized that she was living with CF. She goes on to talk about what it was like to have a partially collapsed lung later in life as well. Gunnar on the other hand hasn't spent too much time in the hospital, except for a few serious emergencies which included pancreatitis and a flu-like virus. They then talk about their experiences as empowered patients making medical decisions along with their team.

Julia and Gunnar talk about the things people with CF need to keep in mind when they are considering marriage, kids or long term relationships. Sometimes that includes having difficult conversations.

Gunnar and Julia talk about why it is so important to think about charities during the holidays. They also touch on the NFL Cause Cleats, and finally Gunnar gives his unsolicited opinion on "modern art."

Matt Mitchell, a freshman in college with cystic fibrosis, joins Gunnar and Julia on the podcast to talk about what it takes be a college football player in Arizona.

Gunnar and Julia respond to an email from a CF mother who asked how cystic fibrosis may impact her daughter's dating life when she gets older.

Julia reminisces on her marathon experience. Julia talks about visiting a children's hospital in the Netherlands. Gunnar talks about going to a CF Education Day at Johns Hopkins last weekend. Gunnar and Julia imagine what it would be like to play paintball together.

Julia talks about bump in the road in her NYC Marathon training. Gunnar is headed to the dedication of the Gunnar H. Esiason Cystic Fibrosis Center at Morristown Medical Center. Julia and Gunnar talk about staying busy when they are sick.

Julia invites her brother, Will 26 with cystic fibrosis, onto the show as the first ever guest. Listen as she and Gunnar talk to him about his quest towards completing the NYC Marathon and why exercise is important for people with cystic fibrosis.

Julia and Gunnar discuss a few different moments that happened to each of them over the past week. Gunnar had an encounter with security at a concert, while Julia talks about training for the NYC Marathon. They finish up by giving their opinions on Gunnar's blog post about how horrible cigarette smoke is.

Julia and Gunnar talk about a major difference between their cases of cystic fibrosis. Gunnar, like most people with CF, is pancreatic insufficient, while Julia does have a healthy pancreas making their care options completely different. The topics range from Gunnar's feeding tube to precision medicine!

Flu season is here. Julia and I talk about our experiences with the Flu shot and how brave she was every time she walked into the doctor's office as a child. Also listen to us talk about the precautions we and how we approach a family or mass gathering when someone isn't feeling well.

Infection control, and cross infection are paramount issues for people with cystic fibrosis. In episode 8 of the Making it Matter podcast, Julia and I discuss the proper procedures we take to ensure our safety and that of other people with CF around us. Beyond that we discuss the complexities behind CNN's viral news article about the "real life 'Fault in Our Stars' couple.

Gunnar has been a bit under the weather for the past week, so he and Julia decided to podcast about what we do to stay busy when they are sick. They have very different coping strategies - Gunnar is all about the video games, and Julia more of a reader.. Let them know what you do when you're dealing with the tough CF days.

It's almost time to go back to school, so Julia and I shared our (wildly different) experiences going through school from elementary to college. Listen to us share tips for how cystic fibrosis families and students can prepare for the upcoming school year.

Julia and I discuss what we do to motivate ourselves through the good days and bad. It's perfect timing because Julia is feeling a bit under the weather! Hopefully she can bounce back soon.

Julia and I try to answer the age old question, “when should someone with cystic fibrosis transfer from pediatric to adult care?” I will say this… it is a good problem to have. Julia and I fall on opposite sides of the debate here. I made the change when I was 19, and Julia, now 24, is just beginning the switch

July 4th is less than a week away. Summer is officially here! Like anything else in a life with chronic illness, there’s always going to be some set of new challenges with the changing season. In episode 2 of Making it Matter, listen to Julia and I talk about the way we overcome issues like hydration, sun sensitivity, heat and anything else we can think of!

Julia, a recent graduate from Fordham University in New York City, shares her hopes for the future and how she plans to tackle any obstacles in her path. Gunnar shares his experience graduating from Boston College in 2013 and how his life changed in the months following.