Difficult Conversations Podcast
Lessons I Learned as an ICU Physician
Episode 163 | January 10, 2022
A Life With Purpose
Executive VP - The Boomer Esiason Foundation
Welcome to Difficult Conversations with Dr. Anthony Orsini. Today, our guest host is Liz Poret-Christ, who is the Director of Programming at The Orsini Way. Liz has a very personal relationship with our special guest, Gunnar Esiason. Gunnar is the son of Boomer Esiason, and known for his life-long battle with cystic fibrosis. Boomer and Gunnar were featured on the cover of the October 1993 Sports Illustrated to raise awareness about cystic fibrosis, and he has spent his entire life in the public eye, first as a child of a famous athlete, and now as an advocate and resource for those living with CF. Gunnar is a rare disease patient advocate who is passionate about early- stage drug development, patient empowerment, and health policy. He has developed a patient engagement platform for a medical nutrition company, built a venture philanthropy practice at the Boomer Esiason Foundation, and was the head coach of his high school’s alma mater’s varsity hockey team. He has consulted on clinical trial development, a real-world evidence population health study, and a cystic fibrosis-specific mental health and wellness screening tool. Currently he hosts the podcast, The State of Health with Gunnar Esiason. Gunnar has been a household name in Liz’s family since her daughter was diagnosed with cystic fibrosis in 2003. Liz and her family have benefited from the generosity of the Boomer Esiason Foundation, learning about treatments, the importance of athletics, and insights into the latest medical research.
We start by Gunnar telling us about his personal journey and how cystic fibrosis has affected his family. We find out the story behind why Gunnar changed his mind about going to Law School after getting out of college, and he goes in depth about his own patient experience and why he’s so excited about patient advocacy. We hear a story about a conversation Gunnar had with his doctor when he was very sick and only 22 years and what happened when he got a spot in the TRIKAFTA clinical trial program. We end with Gunnar sharing a conversation he found to be most difficult. He tells us about the amazing things he is doing with the Boomer Esiason Foundation and talks about their program supporting athletes with cystic fibrosis.
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Gunnar Esiason (1s):
You really suck at football, you the worst player I’ve ever seen in my entire life. I think I think I was just so unbelievably shocked when I heard that, that I didn’t know what to do. Like I thought we were gonna be talking about my CF. Now, all of a sudden I’m getting criticized for my athletic ability and I just don’t know what’s going on, but really what my dad was doing and maybe not the most poetic way was getting my mind off of this one dream that I had and shifting it to everything else that I had going for me in my life. Despite my CF, I had to think about college, I had to think about my winter hockey season, my senior hockey season. And in a lot of ways, he probably was right.
Gunnar Esiason (42s):
I was probably better hockey player than I was a football player. And it was really more of a conversation about being aggressive with my cystic fibrosis care because there is no other way to treat for CF. There is only one way it’s to be aggressive. And that’s what I took away from that.
Welcome to Difficult Conversations: Lessons I Learned as an ICU Physician with Dr. Anthony Orsini. Dr. Orsini is a practicing physician and president and CEO of the Orsini Way. As a frequent keynote speaker and author. Dr. Orsini has been training healthcare professionals and business leaders how to navigate through the most difficult dialogues. Each week you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate. Whether you are a doctor faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members or someone who just wants to learn to communicate better this is the podcast for you.
Dr. Anthony Orsini (1m 45s):
I am honored today that the Orsini Way has partnered with The Finley Project to bring you this episode of Difficult Conversations: Lessons I learned as an ICU Physician. The Finley Project is a nonprofit organization committed to providing care for mothers who have experienced the unimaginable, the loss of an infant. It was created by their founder, Noelle Moore, whose sweet daughter Finley died in 2013. It was at that time that Noelle realized that there was a large gap between leaving the hospital without your baby and the time when you get home. That led her to start The Finley Project. The Finley Project is the nation’s only seven part holistic program that helps mothers after infant loss, by supporting them physically and emotionally, they provide such things as mental health counseling, funeral arrangements, support, grocery gift cards, professional house cleaning, professional massage therapy and support group placement.
Dr. Anthony Orsini (2m 39s):
The Finley Project has helped hundreds of women across the country. And I can tell you that I have seen personally how The Finley Project has literally saved the lives of mothers who lost their infant. If you’re interested in learning more or referring a family or donating to this amazing cause please go to The Finley Project.org. The Finley Project believes that no family should walk out of a hospital without support. Well, welcome to another episode of Difficult Conversations Lessons I learned as an ICU physician, I am Dr. Anthony Orsini, and I will not be your host today. For the first time today, we have a very special host and a very special guest. For those of you who are familiar with our podcasts or familiar with the Orsini Way, you already know Liz Poret-Christ.
Dr. Anthony Orsini (3m 26s):
Liz is our director of programming. She’s been on the podcast as a co host before and as a guest and Liz has a very personal relationship with our next guest. And so I’m going to introduce Liz Poret-Christ, and then let her take over as the host. So go ahead, Liz.
Liz Poret-Christ (3m 42s):
Thanks Dr. Orsini. I’m so excited to be the host of today’s podcast, and I’m so excited to introduce our next guest. Gunnar Esiason is the son of former NFL quarterback, Boomer Esiason. And is well-known for his life long battle with cystic fibrosis. Boomer and Gunnar appeared on the cover of sports illustrated In October of 1993, to raise awareness about cystic fibrosis. He has spent his entire life in the public eye. First as a child of a famous athlete and now as an advocate and resource for those living with CF. Gunnar is a rare disease patient advocate who is passionate about early stage drug development, patient empowerment and health policy.
Liz Poret-Christ (4m 22s):
Professionally he has developed a patient engagement platform for a medical nutrition company, built a venture philanthropy practice at the Boomer Esiason Foundation and was the head coach of his high school alma mater’s varsity hockey team. He has consulted on clinical trial development, real world evidence population health study, and a cystic fibrosis specific mental health and wellness screening tool. Gunnar has been the face of fundraising efforts for the Boomer Esiason foundation, which is yielded more than $160 million raised for the fight against CF. His blog has amassed nearly 1 million page views since 2015, Gunnar is presently working towards a master of public health at the Dartmouth Institute for health policy and clinical practice.
Liz Poret-Christ (5m 8s):
He holds an MBA from the Tuck school of business at Dartmouth and a BA from Boston college. During the Corona virus, pandemic Gunnar was a leading voice in equitable vaccine access for people with underlying health conditions. His health policy opinions have been featured in the wall street journal USA today, the hill and stat news, his podcast, the State of Health is available on all streaming platforms. I must confess that Gunnar has been a household name in my family for the past 18 years. As my daughter Annabelle was diagnosed with cystic fibrosis in 2003, I feel that Gunnar’s own experiences and the mission of the Boomer Esiason foundation have paved the way for us as a family And we’re grateful for his willingness to put himself out there.
Liz Poret-Christ (5m 55s):
We certainly have benefited from that generosity, learning about treatment options, the importance of athletics and insights into the latest medical research. Although there was one blog post about doing a funnel through his G-tube that I may or may not have turned into a cautionary tale, but I digress. The most important accomplishment for Gunnar may be the most exciting one yet. Any minute now, Gunnar’s beautiful wife Darcy is due to give birth with their first child. Welcome to the show Gunnar. We are so excited to have you on.
Gunnar Esiason (6m 24s):
Thanks, Liz. And thanks, Dr. Orsini I really appreciate the opportunity to talk. And yeah, I will caution the listeners that if I have to leave at a moment’s notice we’re expecting an eviction from my wife at any moment.
Dr. Anthony Orsini (6m 35s):
That is very cool Gunnar, do you know what you’re having? Is a boy or a girl?
Gunnar Esiason (6m 38s):
We were having a boy. We were having a name picked out yet, or you want to wait for the big redo. The name is top secret and the name will be revealed probably in the next 10 or 15 days.
Dr. Anthony Orsini (6m 47s):
I thought we were going to get a scoop.
Liz Poret-Christ (6m 51s):
Our promise each week to the audience so that the learn important communication techniques and gain valuable insight and how to lead conversations with compassion. So let’s get into it. People may think that they know who Gunnar Esiason is, but who are you really Gunnar? Can you tell us something maybe that the public doesn’t know or how the journey to get you as this incredible pinnacle of time being my first Guinea pig podcast guest?
Gunnar Esiason (7m 18s):
I appreciate the question who has Gunnar Esiason? I can tell you first and foremost, that I hope that I am remembered for being an excellent father first and foremost, that is my new goal in life. It’s a goal that, you know, I’ll be honest. I’m not sure I ever had that goal for me, considering where we were with cystic fibrosis, not so long ago, but I think that’s the way to describe who I am is patient advocate, friend, son, husband, student, lifelong learner, and someone who is passionate about the rare disease world. People living with rare diseases and especially those who still have medical needs and fight the good fight every day. Like, you know, Liz, our families know all too well.
Liz Poret-Christ (7m 57s):
Wonderful. So no secrets, no things people don’t know I’m going to push you a little bit. Wow. What a hidden talent.
Gunnar Esiason (8m 4s):
Wow. I hidden talent. Okay. Well I, because you already brought it up. I do own the fastest beer funnel of the history of Boston college and the way it happened was as some people with CF do know all too well, I had a feeding good place when I was a sophomore in college. And it’s this, this is a podcast about conversations, especially inside the healthcare settings, as the good doctor knows all too well, critical information just happens to always be conveyed as patients come out of anesthetic hazes. And I came out of surgery after my G-tube was placed. And I was told a critical information about feeding tubes. And this is how you clean. It is how you going to clean the wound. This is what you should do to care for it. This is what you shouldn’t do to care for it. And do you have any questions? But of course, because I was kind of loopy and coming out of it, I asked the nurse, I was like, well, can I put a beer through my feeding tube?
Gunnar Esiason (8m 51s):
I am in College? And the nurse kind of laughed it off, said that I wasn’t the first one to ask her, believe it or not. And left it at that the, without any, you know, yes or no. And believing that conversation any in some gray area, I decided to put it to the test about a year later. And my junior year at Boston college, if anyone’s lived in the city, Boston or knows what the college life is like up there, they know there’s a lot of cold nights. And one night in particular, when our goal is just to get down the street to the bar, morale among the troops was pretty low inside our dorm room. And I decided to put it to the test. I walked into my bedroom, grabbed a funnel, read my feeding tube extender, and I grabbed a Natty light. You may ask why natty light it’s because I was on a college budget at the time. And there you were funneled the beer, right?
Gunnar Esiason (9m 31s):
For my son to the shock of some brand new friends sitting in the room that night. But I think one of my really good buddies put it best in say, or you’ve been given a gift. And I said, max, I don’t know if I would call this a gift, but it’s a great little party trick that I haven’t done since simply because I, that beer came right back up two hours later.
Dr. Anthony Orsini (9m 50s):
This is a public service announcement do not try this at home.
Liz Poret-Christ (9m 55s):
No funnel through your G-tube. Okay, well, we’re off to a fabulous start. You’ve talked a lot about how your family has played in your success and how illness is more of a family affair. And you’ve been very candid about that. Can you talk a little bit about how cystic fibrosis has affected your family and do you feel that it’s defined who you are?
Gunnar Esiason (10m 17s):
Yeah, it’s another great question. Simply because I consider care for cystic fibrosis and Liz you know this to be active and arduous. For listeners at home who may not really know a cystic fibrosis is, but it’s classically associated with progressive respiratory disease and treating cystic fibrosis requires nebulization inhaled steroids and mucolytics antibiotics. And of course the physical therapy that goes along with clearing our lungs. From a very early age, my parents realized that the best way to get me to remain compliant and adherent with the really arduous care routine was to make it a social event around the house. So from a very early age, I never did my treatments alone. And the way my parents sort of came across that realization was I was about four or five years old watching Thomas the tank engine, of course, one morning.
Gunnar Esiason (11m 4s):
And my dad came in to set up my treatments and put the nebulizer mask on my face and then walked out of the room only to hear me cough and then had like a little bit of a come to Jesus moment. Like, oh my God, I just left Gunnar in there by himself to do his treatments. You know, that’s not right. Like I have to go in there and sit by his side to reaffirm to him that he’s not doing this alone. And from that day forward, my treatments were always a social activity, right. My parents set up my treatment station, my treatment cart, the central part of the house, whether the TV room, the family room, whatever we want to call it and believe it or not. Whenever I had little play dates as a child, whenever someone new would come over to the house, my parents would just throw my treatments on me right then and there just so my friends could see what it was like to live with cystic fibrosis, what cystic fibrosis meant to be on a daily basis.
Gunnar Esiason (11m 48s):
And it was important, right? Because it got me comfortable about having CF in front of other people in front of new people. But it also led me to believe that, yeah, my CF health is directly correlated with the other things going on in my life. I could go to school, I could play sports. I could have friends over, I could have family dinners. I could do all of these things if, and only if my health would allow me to do so.
Liz Poret-Christ (12m 14s):
It’s amazing. So I heard your dad came to our local children’s hospital. Probably not very long after Belle was diagnosed. And he told a similar story and that’s what we did in our family too. So when Belle would sit down for her treatments, my husband would go in and they would watch American gladiator and professional bull riding and monster trucks. And to this day, she looks at all of those things so fondly because it was family time and somebody was always in the room with her. And when I say that, the way your family handled things paved our way. It’s not untrue. That was about 10 years younger than you. I think you got your G-tubes around the same time. And I really felt like we were on this journey all together, which when you have a chronic illness and you feel alone a lot of the time, it’s so comforting to know that there’s other people and for your family willing to put themselves out there and show others how to do it well.
Gunnar Esiason (13m 9s):
Yeah,,I think you’re absolutely right. And I think that there certainly is value in the connections that my family were able to make together. Right. It was extra additional time in the day when our family was sitting together. I think so many families look forward to the dinner table conversations and the things that are sort of revolving around the brief period of time when everyone’s either done with school done with the work day, whatever it is, bonding over a meal for us, you know, I feel like we thought it was a little bit of a, an additional bonus period of each day, where we got to spend time as our family unit together. Of course, as I grew up and got older, you know, as my teenage angst took over, I don’t need any of my hawkish parents to be on top of me all the time.
Gunnar Esiason (13m 51s):
And I was happy to sit there with my sister, but I think in those early years, it was definitely pretty formative for me, especially, but also for my sister Sydney, who we still remain very close to this day, although we no longer live under the same roof, it really kind of gave us time to bond early in life.
Liz Poret-Christ (14m 8s):
Do you feel that during the pandemic, when everyone was stuck in their houses or learning about masking in isolation, did you kind of feel like we felt in our family like, oh yeah, we do this all the time. This isn’t that big a deal it’s everyone’s doing what we do. Did you kind of feel the same?
Gunnar Esiason (14m 25s):
It’s funny you say that because I actually reconnected with someone that I hadn’t talked to in a while and I’m noticing the last text messages I had sent to her was a photo of me traveling in February, 2020, right before the pandemic sorta like over it took the entire world. And there I was traveling with my wet ones, my mask and bottle of purell that as any flight I’ve ever taken over the last 10 years, I’ve wiped down the seat I’ve had purell, I don’t touch anything. And I warned and N95 masks whenever I flew. So I felt like I was an early adopter, but yeah, I definitely noticed a lot of parallels between the contact precautions that suddenly everyone had to learn how to deal and what I’ve, what I’ve been to, what your family has been living for the last, however many years, maybe a little bit of a current joke.
Gunnar Esiason (15m 8s):
But I think back in the world, shut down in March or April of 2020 talking with my dad, of course, over FaceTime. And then he was like, maybe it’s a way to calm me down. He’s like, this is your Superbowl. This is what you’ve been preparing for your entire life. And staying safe from some sort of infectious pathogen. Cause that’s such a big part of cystic fibrosis is any virus, whether it’s a common cold, the flu or whatever, threatens to be, life altering and cystic fibrosis. So there’s really no difference in the way that I was operating on a day-to-day basis. Of course, maybe with some more urgency back in April that time when I think we all kind of thought the air was poisonous and I recalled him, my wife the other day, thinking back about the time when she was like in the middle of the Vermont countryside with like no one miles of returning my ski rental for that season.
Gunnar Esiason (15m 51s):
And there I was wearing in N95 mask and hospital gloves out in the middle of like the Vermont wilderness, like putting my skis into a return basket with no one to be found. So it was definitely a different time for sure. And there was certainly some urgency, but I felt prepared because of my CF, for sure. I’m sure your family get as well.
Liz Poret-Christ (16m 6s):
We did. I was recently in Costco with my kids before they went back to college and we went down the Lysol and wipe Aisle and my kids were like, mom, look, it’s your favorite aisle! I’m like, okay, fine. I admit it. And I was like clutching my three pack of Lysol going like the score of the century. So they’ve been making fun of me about that for a long time. So they’re like, mom, you’re already good at this. I recently read somewhere that you were headed for law school when you were getting out of college.
Gunnar Esiason (16m 37s):
So yeah, Dacry my wife loves to poke fun at me for my dream of wanting to go to law school when I was an undergrad. She’s like, I can’t believe you want it to be a litigator. I came up with that was your dream. And I can’t believe it was my dream either. But back when I was finishing up at BC, I did, I was preparing for law school. I was preparing for the Lsat I was preparing to apply. Then that’s when my health really started to kind of collapse on me. And it became quite clear pretty quickly that I was not going to be able to do it. But by the time I was ready to graduate from BC, I saw graduation really as kind of like a finish line because I knew that I needed to start taking my health even more seriously than I already was probably one too many nights with the funneling a beer through my feeding tube.
Gunnar Esiason (17m 21s):
But I do feel like I was in a need of stabilizing my health. It got to the point where in 2013, when I think I was on and off IV antibiotics in and out of the hospital every other month, if not more frequently. And for those who don’t know what, you know, one of the biggest parts of cystic fibrosis care is that we are very aware of the drug resistant bacteria that lives in our lungs. And with every time that I was using antibiotics to treat that chronic infection that I have, you know, you’re sort of dancing with the devil and you’re making the bacteria even more and more resistant, you know, first, second and third line antibiotics. So I was in a pretty rough spot in my trinity go to law school quickly vanished. And I sort of started to shift my thinking towards, okay, well, how can I maintain having patient advocacy impact in cystic fibrosis in rare disease while also being so, so sick.
Gunnar Esiason (18m 11s):
And I think as anyone who’s ever dealt with, you know, the American healthcare system worried with the global healthcare system, like there’s just so many complexities and nuances that go along with it, that it’s just so important to be aware. And I dove in and started to learn about all the different nuances and policies of care delivery in the US from the basic science of cystic fibrosis, to how hospitals operate to billing operations, to insurance, coverage, health care, coverage benefits, all that goes into patient care. And it really illuminated to me some of the really dark and scary sides of American healthcare system, but also really works quite well. And one place where it worked quite well is the rapid advancement of clinical trials, clinical research in our CF care centers.
Gunnar Esiason (18m 55s):
And I jumped into clinical trials as sort of like my way to feel like I was doing something despite my very severe illness. And I learned a very important lesson in that first clinical trial that I enrolled into. It didn’t work, but that doesn’t mean failures are all a loss, a major loss in clinical research. I almost think failures are the wrong way to categorize the outcome of a trial. But my key learning was that within a rare disease population, patients don’t really have the ability to say no to opportunities, right? Patients are our finite resource that exists inside an ecosystem that requires them to play a bigger role than ones that they may be willing to give initially. And it’s because the only way you can advance the understanding of a disease is by actually allowing yourself to be part of clinical research, to understand what drugs are gonna work, what drugs are going to work and where the very finite number of dollars available for that disease should be going.
Gunnar Esiason (19m 45s):
So that was a key one that I had early on. And it was one that sort of filled that void that I think my desire to go to law school sort of left.
Dr. Anthony Orsini (19m 54s):
I have a question. You mentioned patient advocacy a lot. You mentioned patient experience. You talked about clinical trials. I know from Liz’s point of view, nobody’s been through the system more than she has and you and Liz, and I go around the country, teaching hospitals, how to improve that patient experience. We’re real patient advocates, communication. Well, you’ve seen it all. Tell us about what the patient experience and why you’re so excited about the patient advocacy. I mean, you’ve probably seen the best and the worst in your time.
Gunnar Esiason (20m 23s):
I think the healthcare system is geared to seeing patients wrongly as implicit benefactors of the system that we are just along for the ride and believe me, there may be some people that certainly are, but I think there’s value in really being an engaged patient and understanding what’s happening around you while you’re inpatient or while you’re dealing with outpatient or routine care, because things happen so fast. Imagine for a moment that you’re sitting in a doctor’s office, waiting for the doctor to come in, oftentimes, you know, for that individual patient, like that’s the pinnacle of the day, your they’re waiting for however many hours to have that 15, 25 minute conversation with the provider.
Gunnar Esiason (21m 7s):
Whereas the provider is just sort of going through the assembly line of visit, visit visit. So immediately there’s a disconnect and it’s sort of a dichotomy of an experience that’s happening for the patient and also the provider. And I think in some ways that disconnect can lead to a fast flying conversation, things are left out. Things are considered preference, sensitive care isn’t necessarily on the forefront, on the tip of everyone’s tongue at the top of mind for everyone not to mention the anxiety that goes along with living with chronic terminal illness can also sort of lead to what I consider to be like a false imbalance that exists during clinical encounters and some ways that’s probably the place that needs the most improvement in care delivery is really seeing eye to eye with the patient and understanding what their needs, desires and goals are not only with their health, but also outside of their health.
Gunnar Esiason (21m 56s):
Because I think of every part of my life as a function of my health, I can do the things that I want to do when my health is managed and I cannot do the things that I want to do when it’s not managed. So it’s important for my providers to know exactly what I’ve got going on in my life. And I’ll give an example of what I’m dealing with right now, right? My health is very stable. Things are going well in cystic fibrosis. We’ve had a number of drug breakthroughs that allowed us to get there. And I’m sure we’ll talk about that in a bit later in the podcast, but because I’m expecting a pretty serious life event coming up with the baby, I’ve added on additional supportive care, just to get me going to the point where I know that I will be comfortable to operate in an environment where I can imagine I won’t be sleeping very well. A so those are the things that are long-planned out with my providers, with my doctors.
Gunnar Esiason (22m 40s):
And those are conversations that I think people with cystic fibrosis are used to having some forward thinking or scenario planning with providers, where people who do not have chronic illness, do not think that way. As soon as they enter the care system and it’s complex, it’s something that requires training. It requires a skill and it requires seeing the bad sides of the health industry as well. And I can think of a number of cases where I’ve been inpatient. I have a history of hemoptysis offices and there comes a nurse at me with a, a heparin pen because that’s standard operating procedure on the ward. Last thing I need is a, you know, a blood thinner when I’ve got a history of hemoptysis. So there’s a lot of nuances and complexities that sort of swirl around a hospital floors and hospital systems, my learning and my answer to your question at a very high level is just understand what’s going on around you be constantly aware, and boy, does it help to have someone sitting in the hospital room with you that knows what’s going on and what you need best as well, whether it’s, you know, a caregiver, a parent, you know, I’m sure Liz, you’ve probably had a number of tough conversations with the providers.
Gunnar Esiason (23m 40s):
Like my mom has it more recently, it’s been dark, dark. She’s been running a more one care provider inside the system. That’s my go-to person.
Liz Poret-Christ (23m 49s):
That’s really interesting, how of a shift was it for your mom to give up having that conversation? I was once walking past Belle’s room. I think you guys were on a zoom call and I heard you making fun of the CF moms, but in the most loving way, like, oh yeah, we know about those CF moms because the mama bear feeling takes over and you’re not willing to let anybody in. So it must be a little bit hard for her to transition, to let Darcy do it.
Gunnar Esiason (24m 13s):
You’re right. Belle and I have had a number of zoom calls because of her involvement in the Foundation and she’s a wonderful person. And I think everyone knows the CF mom as like a catchall phrase as the biggest fan for every person who has CF. I can’t say I’ve never met a CF mom who does not share a number of qualities that my Mom also has. And I think you’re right. I think it’s a hard thing to let go for parents, not just moms, but also my dad as well as constantly as to letting the CF patient, the person with CF or whatever chronic disease operate on their own. And I always kind of have said leaving pediatric care and going to adult care was one of the most liberating experiences of my life, but also one of the scariest feelings and moments of my life, because all of a sudden the middleman was cut out.
Gunnar Esiason (24m 60s):
The middleman in my case was both of my parents, maybe the it’ll neck and then a woman it’s because all of a sudden the responsibilities of my cystic fibrosis care from the pharmacy calls, insurance claims, scheduling, whatever was suddenly laid upon me. And I think it’s part of growing up, but it’s a hard transition, but I will say my mom trained Darcy to the best of her ability and Darcy my wife, and it’s been a great transition and I’m pretty sure they’re in cahoots behind my back about how I feel and what’s going on in my life.
Liz Poret-Christ (25m 31s):
Well, since this show’s about communication, do you remember a specific conversation that really made you stop and say, there’s gotta be a better way for this to go on. And can you tell us a little bit about what that conversation was?
Gunnar Esiason (25m 43s):
So back in 2013, when I was very sick and I was going in and out of that hospital or in and out of different health events and I was going from one pulmonary exacerbation to the next one, my symptoms were just like constantly flaring my doctor at the time. So I knocked shaped by the way, she’s a wonderful person, really great. And I had a hard conversation, right? And it was something to the effect of, well, we may have to come to grips with this is what your life is going to look like in the near term. And I know it’s not easy, but the truth is we’re running out of the antibiotic options and it was realistic. It was painful. It was hard, it was the truth, but that all said it was something that I did not want to hear. I was 22 years old thinking that I should be in the peak of my life, you know, right out of college should be making money, should be having a job.
Gunnar Esiason (26m 28s):
But there I was living just like I was in high school and I could not get out of this very ugly and probably deadly cycle that I was in with my health. It was not something that I wanted to hear, but it really grounded me and put me in a position to think about, well, this is it. Like, what am I going to do with the time that I have left? And it really made me double down and think about my future that I may or may not have. Right. It really brought me down to earth. And I still think about that conversational on it. It’s humbling in some ways, because it shows me what I’ve come from. And you know, this is really eight years ago now. So it’s been a long time since that conversation sort of first came to fruition, but it also opened the door to my competitive side where I was sort of feeling like, you know, I wasn’t going to have this.
Gunnar Esiason (27m 14s):
Maybe that’s something that came from my dad. This is a competitive streak that is certainly ingrained in my DNA. And that’s sort of what opened the door to me, thinking about it, stabilizing my health so that I could enroll in clinical trials, stabilizing my health so that I could have the beginnings of some career, whatever that might look like. And in a lot of ways, it really lighted a fire underneath me to think more about my health, not just the day to day scenario as that’s kind of how I had been living, but more of a long-term six months at a time goal where I could break myself out of that cycle. You know, I remember thinking back then when I was experiencing an exacerbation, maybe every other month, my goal initially was, well, let’s have a pulmonary exacerbation every four months or every five months just to stray some good weeks together.
Gunnar Esiason (27m 60s):
And that’s kind of how I reacted to it.
Liz Poret-Christ (28m 2s):
So then Trikafta comes into the picture. Right. And for those of you that don’t know, Trikafta is a new medication for certain people with cystic fibrosis, not everybody. And that for many people has become a very life-changing life altering opportunity, I would say. So tell me what the timing from 2013, when you were so sick, when did the try Trikafta trial happen?
Gunnar Esiason (28m 26s):
So I was fortunate enough to get a spot in the Trikafta clinical trial program in 2018. I think I became a good clinical trial patient because as we see it, there’s two resistant mutations that go into a cystic fibrosis diagnosis. I’m a heterozygote, meaning my two mutations aren’t the same ones. One is quite common. The other one is pretty rare. So I kind of make a good clinical trial participant given my somewhat rarity, what that second mutation that I have. And I went through a trial programs for Orkambi in 2013, and then Symdeko in 2015 and 16, wherever it was both failed for my take your genetic profile on CF. And I think looking back a day, we kind of, it was like a flip of the coin. Like maybe it would work, maybe it wouldn’t work the drugs do in fact work for you about 40 or 50% of the population.
Gunnar Esiason (29m 11s):
You know, people who have two copies of the most common genetic mutation. So they were a proof of concept that the drug maker was on the right path to at least rescuing CFTR for the broader parts of the population, Trikafta trial started in 2018. And it was, I can still remember the day, April 9th, 2018 is when I enrolled and dosed the study drug. Of course it was a blinded trial, you know, half the population got the placebo and the other half got the live drug. And I can tell you that after 12 hours, I knew I had the real drug because all of a sudden my oxygen saturation, which was at a baseline of about 90 to 92%, suddenly peaked at 99% for the first time in my life. And it was amazing to watch it happen. But of course you don’t get your hopes up.
Gunnar Esiason (29m 52s):
Like this is too good to be true. But three days later, I couldn’t deny it. When my cough suddenly went away, my cough disappeared. My energy came back. I started putting on weight almost immediately. And then two weeks later when I was back from my first visit, my pulmonary function skyrocketed. And if you’re looking at a scale to determine the severity of disease, I would say that I’d probably started the trial at severe cystic fibrosis and ended the trial a year and a half later at mild and moderate cystic fibrosis. I mean in no small way has Trikafta transformed and changed my life. And the best way to describe what happened to me was actually during a men’s recreational ice hockey game, the listeners out there may not know that although my dad had a great NFL career his real love, is ice hockey.
Gunnar Esiason (30m 34s):
And when you play ice hockey together, or we did, when we lived in New York for many years, when I was very sick, I would still play. And, you know, trying to get out there maybe 10 or 15 times a year and try to skate up and down the ice and get off and catch my breath and then go back up or a quick shift. And I would just cough, cough. Cough was really uncomfortable experience for a number of years, but that first game after I started on the study drug, it was like a parachute had been flipped off my back. And I was feeling young. Again, I was out there on the ice for, you know, minutes at a time, not coughing breathing deeply to the point where my teammates and my dad were just so completely in awe of what had happened. Like what the hell is happening to Gunnar.
Gunnar Esiason (31m 16s):
That’s when I realized that triple combo was well, was now called Trikafta. But at the time we called the triple combo is the real deal. It was something that suddenly showed me that my future was unlocked after so many years of hard living from 2013 to 2018. When I started the trial, I underweight almost two dozen medical interventions hospital-based care, and it was a hard way to live, but I suddenly had to realize that, wow, I’m healthy again. And it wasn’t until my now wife and I took a road trip. I put her in the car and I was like, we’re going to us and civil war battlefields and big history buff. And she sat along like the trooper that she was the one compromising made was that we had even an old time photo at Gettysburg.
Gunnar Esiason (31m 56s):
And we were touring the Gettysburg battlefield on segues. So I compromise there, but on the way, home from the trip, we were sitting in traffic on the Jersey turnpike. I’m sure you both have been there many times. And she asked me, pointedly is about six months after the trial began. Well, what do you want to do with the rest of your life? And it was the first time that it dawned upon me that I would be able to think about that. Then it was a great, amazing conversation to have. It’s what led me to grad school and to us getting married and, and now expecting a baby in a few days.
Liz Poret-Christ (32m 29s):
That’s amazing. So we ask every guest the same question. Has there been a type of conversation or a conversation specifically that you’ve found the most difficult?
Gunnar Esiason (32m 40s):
Yeah. I can think of a few that have been tough, but one sticks out in particular. I was a senior in high school and like my dad, I wanted to be the star football player on our local high school team. Like that was my goal. Growing up, I started playing high school football as most kids do that. It was kind of thrown right into the knee grinder and they got to make it through those summer workouts through JV years and then work their way up to varsity. And I did that. I had paid my dues and by the end of my junior year of high school, I took over as the starting quarterback of a team. I had a lot of games. I throw a touchdown pass, ESPN covered it. Like it was one of those classic kids overcoming the odds kind of stories that they loved to show on ESPN on Saturday morning.
Gunnar Esiason (33m 22s):
It was a really cool thing. I was riding really high. I was excited. I was looking forward to my senior year when my friends and I were going to be able to play together. And that summer between junior and senior year, I got mononucleosis, which was probably the first time in my life that I experienced declining CF that we couldn’t control. And it was eye opening in the sense that, okay, wow, this is real. Whatever we’re doing is not working. We just kept trying and iterating with our care plan and trying to figure out how to get control of my declining lung function. But while that was going on, I was still trying to work out. I was doing summer practices. I was doing everything in the background that I had been doing in years prior because I was geared up to being the starting quarterback my senior year.
Gunnar Esiason (34m 10s):
But by the time training camp rolled around, it was quite clear to everyone that I was not who I once was. I lost a ton of weight over the summer. I couldn’t keep muscle mass on workouts were just really hard on me, distance runs or sprints or whatever. I was always towards the back of the pack. And it became quite clear that it just, it wasn’t gonna work out. And as we sort of went into the second or third week of practice, I was no longer taking snaps with the starting line up and all that stuff. But now the competitive streak in me just kept pushing me, kept pushing me as hard as I could go until one day we were doing sprints. We were doing conditioning workouts at the end of practice. And I actually collapsed on the field and I was down on my back and everyone’s worst nightmare was coming to fruition.
Gunnar Esiason (34m 52s):
All my teammates that I had CF every once, when was that I had CF, there was no secret. I kind of came to with my entire team sort of standing around me. Like they had all just seen a ghost, new trainer. The coaches are running over and I brushed myself off, pick myself up. I looked down and my entire Jersey was covered in blood. I had a massive hemoptysis right there on the football field. And when I came to, and of course, everyone’s terrified. It’s like I said, the worst everyone’s worst nightmare coming to fruition. And I said, I can breathe. Like everyone just I’m trying to be the adult here, everyone relax. And I said, just call my mom. She’ll know what to do. Don’t call an ambulance, just call my mom. So we quick, got my mom on the phone. And she said, I’m coming in.
Gunnar Esiason (35m 32s):
We’re going to go to the doctor where you you’re rushed right into the CF center at Columbia. And we had what I considered to be one of the most difficult conversations I’ve ever had, where my doctor very plainly said to me, you know Gunnar, I don’t think you can play football this year. It’s just not going to happen. We have to get control of whatever’s happening to you so that you can think about everything else. Like there’s nothing else to think about right now. And I was crushed. I had been looking forward to one thing, my entire life being the starting quarterback of my high school football team. And in a matter of minutes, it was taken away from me and my doctor basically laid out a care plan that was going to be truly intensive and incorporate bronchoscopies.
Gunnar Esiason (36m 19s):
And long-term IV antibiotics and continued follow-up and things that would make it unsafe for me to continue to compete. because my body was going to go under a lot of medical trauma as an addition to whatever else was already happening with accelerating disease. And it was sort of laid out as if I had the choice. Like I had to give the green light to let it happen. And she said, go home, talk to your parents and let me know in the morning what you want to do. So I was on the verge of tears, the entire car ride home. My mom called my dad and my dad was coming from work and be ready. Gunnar needs to have a conversation with you when you get home. So I kind of moseyed on into the, you know, the study or the office that we had and my childhood home and my dad and I had a sort of like a one-to-one conversation and the way he kind of broke the tensity was he started the conversation by saying, you know, like there’s something that I’ve really needed to tell you for a long time and I haven’t done it quite yet.
Gunnar Esiason (37m 14s):
And it’s just that you really suck at football. You are the worst player I’ve ever seen. And I think I was just so unbelievably shocked when I heard that, that I didn’t know what to do. Like I thought we were gonna be talking about my CF and now all of a sudden I’m getting criticized for my athletic ability. And I just don’t know like what’s going on, but really what my dad was doing. It maybe not the most poetic way was getting my mind off of this one dream that I had and shifting it to everything else that I had going for me in my life. Despite my CF, I had to think about college. I had to think about my winter hockey season, my senior hockey season. And in a lot of ways he probably was right. I was probably better at hockey than I was a football player.
Gunnar Esiason (37m 58s):
And it was really more of a conversation about being aggressive with my cystic fibrosis care, because there is no other way to treat for CF there is only one way is to be aggressive. And that’s what I took away from sort of two very different kinds of conversations talking about the same exact thing. And the next morning we called the doctor said, okay, green light. Let’s get going with this care plan and get this under control.
Dr. Anthony Orsini (38m 18s):
I love the way he kind of redirected the whole conversation and use a little humor and a little hard love. And I think point via the let conversation. Well, I think,
Gunnar Esiason (38m 25s):
Yeah, I mean, he, he probably could have been a coach and maybe in another life, he would’ve been a coach.
Dr. Anthony Orsini (38m 30s):
That’s great. Got it. I want to ask you about the Foundation and what the foundation dealing with athletes, why your dad started, how old were you when he started? When did you take over?
Gunnar Esiason (38m 41s):
So I was diagnosed in 1993 at age two foundations started right then and there. I think my dad recognized that he then my mom recognized that they had a responsibility to do something not only for their son, but also for cystic fibrosis, this community that they were suddenly thrust into. And the truth is that actually prior to me being diagnosed, my parents had been big fundraisers for cystic fibrosis in Cincinnati because my dad was friends with Frank Deford, the sports writer who lost his daughter to CF. So my parents in some maybe weird twist of fate where they’re involved in cystic fibrosis, even before I was diagnosed. So they knew what to expect. They knew enough about CF, but they never imagined that I would live with it obviously, but they felt like they could do something about it since then.
Gunnar Esiason (39m 26s):
The foundations raised about $160 million in the fight against CF. And initially the money went sort of to the cystic fibrosis foundation’s therapeutics development network and the path for sure through that because the CF foundation has so much tremendous success and financing, drug development, and sort of turning itself into a venture capitalist and sort of creating such an amazing endowment strategy. And we, as a foundation had had this sort of pivot what we’ve done to support, and we realized that patients were sort of still being left out, hung out to dry, right drug development takes a long period of time. So we to think about patients in the here and now, so that they can be around and be successful until those new drugs come to fruition. So we spent a lot of time thinking about how best to assist patients in the here and now we provide scholarships for people with cystic fibrosis going through undergrad and graduate degrees and provide transplant assistance grants for people who are at that stage of the illness.
Gunnar Esiason (40m 22s):
We have provided disaster relief funding for families, sort of not long after hurricane Harvey, just completely uprooted, Southeastern Texas. We started providing assistance for displaced CF families as a result of natural disasters. And then unfortunately recently we’ve had to also open up a COVID-19 economic relief program, but for CF families that have had to make the difficult decision of do I go to work and risk exposure to the virus or do I stay home and protect my CF family? So those are things that we take very seriously and things that we do a lot of work with. We also do a lot of patient advocacy and we recognize that both my father and I, and we have great tremendous platform. And then we were very thoughtful about that platform and we use it to advance cystic fibrosis issues, concerns causes like healthcare access preserving the drug development that exists in cystic fibrosis, equitable vaccine uptake was also another thing that we worked under the pandemic.
Gunnar Esiason (41m 11s):
Do you remember back in the early parts, depending on if near rationing care and maybe unfortunately some of our hospitals are still doing that. We were talking a lot about making sure that cystic fibrosis patients weren’t discriminated against and could access continuing care. Recently, we’re talking a lot about preserving the tele-health that has emerged during COVID-19. I’ve always kind of felt that there’s no reason to ever put a CF patient in harm’s way for a hospital acquired infection. Why not transition that care to being remotely? So a lot of those issues are things that we think about and talk about from an advocacy front. And then we do continue to support research and also technology advances in cystic fibrosis.
Gunnar Esiason (41m 52s):
The Boomer Esiason foundation has actually funded the largest disease specific mental health study, interventional study in cystic fibrosis, looking at a cystic fibrosis specific mental health interventions that’s ongoing, so that we’re funding. And then we also are committed to providing technology for cystic fibrosis care centers and academic researchers translating academic work into therapeutic development, through technology platforms that we’ve helped partner with. So we do a lot, but one of my favorite things that we’re doing right now, and this is, I know something that Liz is very close to, but we’ve engaged into a name image and likeness contracts with six athletes who cystic fibrosis competing at the varsity level of the NCAA. As far as we know, we’re the only non-profit in the United States.
Gunnar Esiason (42m 34s):
That’s actually supporting patients within our own population and competing at that level. We have six amazing athletes of which was Liz’s daughter Belle is one of them. She is awesome. And so are five other athletes that are competing in a lacrosse soccer track and field football and gymnastics. So we are super pumped for our athletes to be brand ambassadors for the foundation that we of course love supporting people with cystic fibrosis directly like Belle.
Dr. Anthony Orsini (43m 1s):
And I remember Gunnar many years ago. I mean, cystic fibrosis, as you said, has come so far. It’s incredible. Thanks. So you, your foundation and other, and all this research, but I remember hearing about, you know, I was always interested in medicine and, but I remember in college or medical school, I think it was during that Boomer Esiason’s son has cystic fibrosis. He’s playing football, he’s playing sports going. Wow, that’s amazing. I didn’t think cystic fibrosis kids can do athletics and now look at where we are hundreds and thousands of them, but it just goes to show you what medicine can do when it combines and teams up with charities. We can do some great things here in the United States. Yes,
Gunnar Esiason (43m 40s):
It really is amazing. I say maybe currently that cystic fibrosis was the greatest story in medicine only he’d be displaced by the vaccines. So I think CF has come a long way. I think that the stat that gives me the most hope and pride to be, part of the cystic fibrosis population is that the number of patients living older than 18 years old continues to grow far beyond the number of patients living under the age of 18. That shows that this is no longer a child disease diseases, unfortunately, something that has to be lifelong managed, but I can promise you that the Boomer Esiason foundation will be around until we have to start thinking about geriatric care for CF patients. It’s amazing.
Liz Poret-Christ (44m 15s):
How does someone get in touch with you? Should they want to reach out to you?
Gunnar Esiason (44m 18s):
Yeah, so I do have a blog Gunnar Esiason dot com. That’s where I blog. I will say I have not been a great blogger lately just because we’ve been busy. Yeah. So, but I do block so Gunnar Esiason not calm is really kind of where you check me out. I do also tweet on Twitter, tweet out my thoughts, follow me on Instagram and stuff like that. But you can also see what the Boomer Esiason foundation is doing @Esiason.org. You can follow our name. Would you like this? Athlete’s also where we’ve got a full list of their names, which includes Liz’s daughter, but yeah, I’m excited about the future for people with cystic fibrosis, we still have work to do. There’s still about 10% of the patient population that does not have like ultra drugs. So we still work for them. And we also of course have patients who are on the other side of receiving transplants who still need supportive care.
Gunnar Esiason (44m 60s):
So you have is maybe not as far from being cured as we had all kind of thought it would be many years ago, but we are on the right path, but there’s still work to do, and we will continue to do it.
Dr. Anthony Orsini (45m 11s):
So for those out there, don’t stop giving don’t stop pushing awareness for cystic fibrosis. Please keep giving we’ll put all of Gunnar’s contacts on the show notes. And this has been really just a great episode, Liz. Awesome job.
Gunnar Esiason (45m 25s):
Yeah. Great job Liz.
Liz Poret-Christ (45m 26s):
Thanks for being my guinea pig Gunnar. I appreciate it.
Gunnar Esiason (45m 30s):
You may have another career ahead of you, hope the doc doesn’t mind.
Dr. Anthony Orsini (45m 33s):
I think I’d go on a six month vacation and let her handle the podcast. Now this is awesome. Gunnar. Thank you so much, Liz. Thanks so much. This has been great. I can’t wait for the audience to go ahead to hear this. If you’ve enjoyed this episode, please go ahead and subscribe on your favorite podcast platform. If you’d like to get in touch with Gunnar, that’ll be in the show notes. If you want to get in touch with Liz or I at the Orsini Way or hear more about what we do, please go head to the Orsini Way. Com and you can contact all of us. So thank you so much, Gunnar. Thank you, Liz. This has been great.
Gunnar Esiason (46m 3s):
Thank you so much. Thanks for having me on.
Dr. Anthony Orsini (46m 5s):
Well, before we leave, I want to thank you for listening to this episode of Difficult Conversations Lessons I learned as an ICU Physician, and I want to thank The Finley Project for being such an amazing organization. Please, everyone who’s listening to this episode, go ahead, visit The Finley Project.org. See the amazing things they’re doing. I’ve seen this organization literally saved the lives of mothers who lost infants. So to find out more, go to The Finley Project.org. Thank you. And I will see you again on Tuesday.
Announcer (46m 38s):
If you enjoyed this podcast, please hit the subscribe and leave a comment and review. To contact Dr. Orsini and his team, or to suggest guests for future podcast, visit us at the Orsini Way.com. The comments and opinions of the interviewer and guests on this podcast are their own and do not necessarily reflect the opinions and beliefs of their present and past employers or institutions.
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Ep. 162 – December 27, 2021