Navigating Daily Life with CF

Welcome to our Fight to Breathe, a podcast rooted in resilience, community and the power of storytelling. My name is Caleigh Haber and I'm so glad you're here. I was born with cystic fibrosis, a progressive, genetic, rare disease that affects the lungs and digestive system. I've undergone two double lung transplants, spent years navigating the healthcare system, and I've lived through moments I wasn't sure I'd survive. But through it all, one thing has kept me going Community. The fierce, brilliant and brave voices of others who know what it means to fight for every breath. This podcast was born from that fight. 

Our Fight to Breathe is a space to elevate the voices of people living with chronic illness, disability and rare disease. It's a space where we talk about the realities of what we face, the triumphs and the grief, the injustice and the joy, the medical complexities and the very human stories behind them. Each episode will feature guests from all corners of the CF and medical world, from patients and caregivers to healthcare professionals and advocates. Together, we'll explore not just what it means to survive, but what it means to truly live. My hope is that you'll walk away from each episode feeling seen, understood and a little less alone. Whether you're navigating this life yourself or you're here to learn, listen or support someone you love, this podcast is for you. Thank you for being here. Let's keep fighting together. 

Today's episode is all about the everyday heroism of living with cystic fibrosis and we have a truly special guest to share his insights and experiences. In this episode we'll take an intimate look at the daily routines, treatments and self care practices essential for managing cystic fibrosis. We'll also discuss strategies for overcoming the physical, emotional and social hurdles of cf. Additionally, we'll share advice on balancing the responsibilities of the disease with everyday life, explore ways to find inspiration and stay motivated, and finally highlight the importance of community. 

Today, I'm thrilled to introduce my close friend, Nick Di Brizzi Jr. Nick was diagnosed with cystic fibrosis as a toddler and is almost 9 years old post double lung transplant due to the impact of anti rejection medications, steroids and cystic fibrosis related diabetes. Nick required a kidney transplant which he received from his brother in 2021. He is a proud Italian from Chicago, an actor known for roles in shows such as Fargo and a skilled athlete in multiple events for the Transplant Games of America where he represents Illinois. 

Nick is also the founder of the Breathe Like a Boss foundation, which helps people with respiratory illnesses by assisting them with fitness programs and exercise equipment. By doing so, the foundation aims to improve lung capacity, cardiovascular strength, and overall health without the financial burden. 

Nick is one of the most kind and caring humans I know, and he has been a huge friend and sport for me throughout my journey. He's a wealth of knowledge, and I am beyond excited to have him as a guest expert in living with cystic fibrosis. 

So Nick and I met when we got our double lung transplants almost a decade ago, which is crazy to think about. It's going to be nine years this year. I got it October 20th and you. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Got it October 17th, 2015. 

Caleigh (Host):
That's right. And our families actually met before we did. We were in the ICU and our families started talking. We went down to the step down unit and were side by side. Our rooms were always side by side. We got discharged and how I met Nick, and my memory of Nick is our clinic visits. We had clinics every day, multiple times a week for the first year of post transplant life. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yep. Yeah, that was the first time we. I mean, we officially met. I remember walking by your room being like, “hey, Caleigh, how you doing”? But yeah, I think it was like our clinic visit. I may have been the first one, actually. For me, at least for me was my first one. Yeah. Crazy. 

**Caleigh (Host):**
Your first clinic visit, you mean? Yeah, yeah, I think it was my second. I might have gotten released a few, like, days before you and then. But it was just incredible because were in that journey together. Every time went to clinic, you could physically see the change in us every single time, like every few days. One day we're on oxygen, one day we're not. One day we're. You're. We're walking with a cane and the next day you're not. Yeah, yeah. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Well, I was very familiar with the cane life. 

**Caleigh (Host):**
Yeah, I know, but you have like a boss cane. Of course. It's just a normal one. What did it have on it like a lion or…?

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I got one with a lion and one with a snake. Actually. I had to get. I had to be a little. A little different than everyone else, you know. 

**Caleigh (Host):**
So you have like. Let's give a visual for people. It was like a cane with a lion. Plus a Italian tracksuit. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Definitely a tracksuit. Yes. 

**Caleigh (Host):**
Plus the Italian hat. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yep. 

**Caleigh (Host):**
Plus the gold rings. Sometimes I think. Yes. And the cross and everything. This is just like you to a T. I love it so much. So I introduced you, but can you share anything else with our listeners about Your journey with CF so far? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yes, of course. So as many people know that what CF is, I mean, CF is a condition, a genetic condition which predominantly affects the lungs. I mean, it affects all your organs. But as you know, eventually you have to get a lung transplant, you know, or nowadays you can get on trikafta and some of these other incredible medications that have changed the whole CF world. So I know that right now there's not that many people getting lung transplants as it was when were getting, getting ours. You know, our first, my first one, I mean, I know you had others, so in 2015, I had my double lung transplant, but I grew up in Chicago, you know, I ended up moving to Los Angeles in 2002 to pursue my career as an actor. 

When I was born with CF in the early 80s, you know, I was born in 81, my parents were told I wasn't going to live past my teens. So when I got into my teens and then into my early, you know, straight out of high school, I just kind of wanted to live life. So I wanted to pursue like my dreams, you know, and if I didn't think my life expectancy wasn't going to be too long, I probably would have went a different avenue. 

But everything happens for a reason and I'm grateful for that. It brought me to Los Angeles and where I lived for 23 years and then that's kind of what brought me to Stanford because I was in LA and that my doctors told me Stanford is probably the best place to get my lung transplant. And that's how we met. 

**Caleigh (Host):**
You know, I know that living with cystic fibrosis and transplant, your day to day is constantly changing, especially from life pre transplant and life post transplant. A lot of people say it's like trading one disease for another. I definitely agree with that. I think you would too, just from all the complications that come with one versus the other. 

Can you walk us through the typical day in your life today? What your treatments are, medications are, your routines? Do you have any self care practices or things that you do that help your health? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yeah, well, I think, I mean for me, exercise was the biggest component to me, number one, surviving and number two, even after transplant, recovering. You know. So that is a big part of my daily regimen. If not daily, it's at least four or five days a week where I exercise. 

I play a lot of pickleball now, but you know, I was also doing boxing, Muay Thai, tennis, you know, some soccer after transplant. 

But you know, of course now you know, life is a little bit easier. You're not, you're not necessarily a prisoner of your disease as I was, and probably you were as well. You remember the days of one hour treatments of nebulizers, the vest? Oh, yeah, every day I. Before my fourth times a day. 

Caleigh (Haber)
Not one hour, but four hours a day. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yeah, it was literally four or five hours of my life, you know, that was given back to me after my lung transplant. So now I feel much more liberated, you know, in a sense, you know, I mean, it's almost like you go to prison and you're released from prison and all of a sudden it's like this whole new world. Not that I've ever been to prison, but I'm just giving an example, you know, But I mean, it's like a whole new world and you're just seeing all these new changes in your body and you're able to explore so much more. You know, I was able to leave from morning tonight. So my daily regimen is not at all what it used to be. I'm not like stuck at home all the time. But we are still on a lot of medication; some of those are enzymes. Because although your lungs are don't have cf, my body does, you know, so I still have the sinus issues. I still have. Diabetes is a lot worse. So I'm on the continuous monitoring system and a pump, you know, insulin pump, so that I have to keep a very close eye on. I still go to the doctors. I got a diabetes endocrinologist, I got a doctor for my kidney because I did receive a kidney transplant as well. I'm sure we'll touch on that. And so I see my nephrologist and then I also see our, the CF doctor and lung trend transplant doctor, so that there's like doctor's appointments, I would say twice a month at least, you know, and then it's just preparing all my medication in the morning and then just going, doing my thing and not forgetting my pills. That's sometimes tricky. I got to set alarms because the immune suppressants can cause a lot of crazy issues. You know, one of those is memory loss, you know, so that's something I'm dealing with a lot. 

**Caleigh (Host):**
I mean, you've touched on two wonderful things with the liberation and feeling like you're released from jail. I mean, I can completely 100% identify with that feeling. But I do think that it's good for us to recognize that some people don't get that some people don't receive that freedom, which my first transplant, I was still a prisoner, in your words, a prisoner. And I think that's absolutely true. I still couldn't exercise. There was a few months there where we thought things were going well. But, you know, eventually I never really got on the path to health. I was still constantly hospitalized. I was still on a feeding tube. I ended up on, actually, my rejection was much more severe, I think, physically and emotionally than my CF decline. Because CF decline lasts years, sometimes decades for people.

I know, for you it was a long decline before you received transplant. But for my rejection, it was almost overnight. I think if you probably remember too, it was like three months. And I went from moving in with my soon to be husband and building a home to 10 liters of oxygen and using an electric bike to get anywhere because I couldn't walk. But I feel like, you know, it. We've been very lucky to become friends, to have other friends with this disease that have encouraged us and kept us motivated along the way. And so you also talked about exercise and how that's a key component to effectively managing cf. 

Do you have any other things that you want to add to being like a key component that maybe other people might find useful? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I mean, for me, it was especially post transplant, you just get like this huge sense of gratitude. And like I always say, I was like reborn with this, I call them gratitude goggles. Like, pretty much everything I saw was incredible and like a new beginning and a positive mindset. 

Before my transplant. And you said it like the decline, I want touch on that because my decline, it was a long decline of below 25 lung function. I'm a little unique in that. Like a lot of people with CF, sometimes they'll get below 25 or 30% and those clinics will be like, you got to get a transplant, you know. And for me, it was like when I was 20 and I moved to Los Angeles, I caught pneumonia and my lung function dropped to 25. It's when they first brought up, you know, getting a lung transplant. And they specifically said, and I remember my brother was with me. They're like, “listen, if you don't get a lung transplant, you're not going to live for more than two years”. I mean, that's just statistics, you know. And so I'm like, well, that like that my mindset went like, totally negative. And so I started like, you know, kind of declining even faster. And then I'm like, well, you know, I'm still I started going to the gym more, and I'm like, I'm still boxing, I'm still doing things, you know, even though my lung function is low. And I realized, you know what? I'm not going to continue to testing for the for the transplant. And I lived with a below 25% lung function for 14 years, you know, which is kind of unheard of, you know, and I got to 10%. 11, 10% when I had my transplant. I definitely waited too long. And I don't recommend this for anyone, by the way. It's just what happened to me. I'm just telling my side. 

And I think part of that lasting for 14 years was my positive mindset, you know, I just. I don't know, I surrounded myself with positive people, and, like, when social media started coming out, I always followed positive pages. You know, I try to stay away from negative things, negative news, as much as possible, you know, and I do believe that does make a big difference, you know, and surrounding yourself with the right kind of people that have either gone through stuff like this, like mentors, finding your own mentors, you know, I became so close with people in the CF community, as you know, and the people in the CF community, they're all fighters, you know, like, and my friends are that way. And watching them go through the transplant experience really helped me, you know, because it gave me hope. Hope is everything. And support. I'm very lucky. I'm very lucky. Another component of going through all this and surviving it is family is not. It doesn't have to be family. It can just be support, you know, whether it's friends or family. And I'm very privileged and lucky to have such an immense support group in terms of my family all over the world, really. I have family in Italy that did so much for me, you know, during my transplant, I have so many fundraisers and so many people helping out. When I had to relocate to Stanford and live there for nine months because that's the most expensive place in the country, pretty much, you know, and so, yeah, that was a big deal, too. 

Support. Finding positivity in things, you know, trying to find the good in all. Look, we can't change the cards we're dealt with, but we can control how we play our hand. I think that mindset is a big deal, and for me, faith. Faith is a big component. I am a man of faith, and faith has always been a big part of my life, and that's thanks to my mom, mostly, and my grandparents. So just being around prayer but I believe in the power of prayer. I believe in people. That's just something I've always been involved with in my life. And I think it kind of guided me through the hardest times of my life. 

**Caleigh (Host):**
Yeah, I mean, when you are told that you are going to die and be given a time limit, I wasn't told. I wasn't given, like, a specific time. But when I needed a transplant, I mean, it was like you, pneumonia. And I was already going downhill. We had been talking about going towards a transplant, but it was sort of this gray area that doctors walk that is, you're very sick, you need a transplant, or you're very sick, you're too healthy for transplant, but you also can't be too sick for transplant. So they need you in that, like, perfect zone. So I was sort of walking the line of, like, you, low lung function, but able to do so much with it. And so if you still have quality of life, then why are you going to get listed? So I was kind of holding off as well. 

And then I got pneumonia, got admitted, and I needed a feeding tube and oxygen. And that completely shifted my life. I mean, it was day and night from being independent and working and trying to build a career to relying on family, like you're saying, and surrounding yourself with people that are accepting of your disease. And, you know, maybe the sacrifices that you may need to make because I can't go hiking or I can't go walking up this place, you know, sometimes you got to shift and make things happen in a way that you can make them happen. So we are both lucky to have family and friends that have supported us for sure. But it's not easy, honestly, to have friends who want to support you, especially when you're young. So, I mean, support is very necessary. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**

Yeah. 

But I think we can agree to a degree, the disease is individual because there may be people that support you. Spouses, partners, parents, but at the end of the day, you are the one taking the pills. You are the one choosing to do your nebulizers. 

So how do you balance the responsibilities of living with cystic fibrosis and life outside of cystic fibrosis? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Well, it is a big balance because, you know, we. There's two different ways to answer that question. There's pre-transplant and post-transplant. You know, for me.

Pre-transplant, I mean, I was an actor. I had my real estate license. I was very active in, like, everyday social world, you know, especially being a realtor. You're a salesman, you gotta be around people. So I had to plan everything to my schedule with cf and my care for CF was the main thing that had to come first, no matter what. What that meant was I sacrificed a lot. You know, as you know, anyone with CF that was born in the 70s and 80s and that grew up with not a lot of different options, medication wise as they do now, we had to do all these nebulizer treatments and antibiotics and all these different hospitalizations. 

I mean, I grew up in the hospital. The hospital was a second home to me no matter what. And so you have to make the best out of all those situations. And it sucks. There's no way around it. Don't get me wrong. Although I try to see the positive, there were terrible moments, you know. 

**Caleigh (Host):**
Oh yeah, I think we all agree CF sucks, it's horrible. But finding the positive is absolutely important.

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
But my life was like all my schedule was dedicated around two things, especially living in la, it was traffic and my medication in life, you know, like when I had to do my nebulizers, you know, even when I went to grade school before moving to LA or high school, I would go to school at 8 o'clock in the morning. Well, I wasn't like most kids that would wake up like an hour before I had to wake up two, three hours before. You know, if I had to get somewhere at 8, I'd be up by 5/5:30, because I knew that nebulizer treatment would take like an hour. And before the vest was around, my grandma and my mom would have to literally beat on my back for a half hour to an hour a day. 

**Caleigh (Host):**
Oh, yeah

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**

So I mean, again, I'm blessed that I had that kind of support. That's a lucky thing that I had incredible parents that were there for me for that. They kept me alive. I mean, let's just face it, you know, but time is taken from us when you're battling this disease pre transplant, especially, you know.

Now for me after transplant, it wasn't as bad because, I mean, in terms of getting my time back, I, I had all this medication, I had other problems that came about. Of course I had like skin cancer removed. I've had multiple, you know, issues with my kidney function and then eventually I had a kidney transplant. 

So I went from freedom, more time and able to do more stuff, you know, in terms of my career, my life, fun travel and then starting a nonprofit was a huge thing for me. And I was given that time to be able to do that. There was no way I would have been able to do all the things I'm doing now pre transplant. You know what I mean? So it's been a gift for me. 

But then here I am enjoying these times, these moments, and then there you go. Boom. I go to the kidney failure, and I'm back to being a prisoner of my disease. Almost even worse because I then had to do peritoneal dialysis, which is like, it got to nine hours a day. 

I had kidney failure during COVID So what stunk about that was I had a decision to make. I have to do peritoneal dialysis or hemodialysis. Hemodialysis consists of three days a week, four hours a time. But that's, like, in a room with a bunch of people, and it was like an open room. Like, I remember going to the facility, like, Davita clinic, and I'm like. I said, I want to see, like, where they do the dialysis. And they brought me in this, like, basically, like, look like a gym. It was like an open area. I'm like, well, I don't know. During COVID I don't know what's going on. I don't really want to be around an open area with a bunch of other people that compromised immune systems, you know? 

So I decided to do peritoneal. And again, nine hours on a peritoneal dialysis machine a night. It was brutal. I did that for a year, you know, And I'm lucky, I'm very lucky again, that my brother Dominic, he donated his kidney to me. I was able to receive a living donor transplant. So, again, I enjoy the freedom of living post transplant a second time. And it's been even better because now my kidney function is, like, really good. Knock on wood. And. And it allows my other. The rest of my organs and the rest of my body to heal better and recover better, you know? Yeah. 

**Caleigh (Host):**
I mean, we're all so grateful for our own donors, our friends, donors, and we are very, very grateful to Dominic because he's kept you alive. And as I've said, honestly, you are one of the best people that I know. Like, I'm not just saying that, but it's. I'm actually tearing up because you've just helped me through so many things. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
You did, too. Can Caleigh , you. No, no, for real. I mean, like, we did it together, and, like, I don't think. And I put Melissa Papa George's in that category, you know? 

**Caleigh (Host):**
Yes. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
But were recovering together, and her family helped me so much, and I got so much help from other people in the community. Dominic Quagliozzi is another one. And other people like Patrick, who we're friends with, we have cf. They got transplants before us. 

Just watching their journey and then also going through it with you and Melissa, you know, we kind of pushed each other. Like, I remember, like, maybe even probably, like, quietly amongst us, were. We were always asked, like, “hey, what was your lung function?”. You know, and like, oh, okay. So were, like, on the same track, you and I, always around the same lung function and different issues. But you. You had rejection. I know that, but I'm saying in the early stages, it, like, pushed me to be like, okay, I got to try harder. I got to do more, you know? 

**Caleigh (Host):**
I know. That's what's so funny, is because we're all three of us are so competitive. And it's not like you're trying to be, like, better lung function than your friends because you want everyone to succeed, obviously. But it's just this method of, like, motivation to get off the cane, get. Get walking, exercise more, push yourself, all of those things. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yeah. 

**Caleigh (Host):**
What's so different from our stories is that you woke up multiple hours earlier to go to school just to do all of your treatments. But growing up, I actually didn't really do treatments at all, which is, like, people are so surprised by that because I was really healthy. And then I used to start to go to a gym after school. 

Both of my parents worked, and one of my friend's parents would pick me up and take me to the gym, and I just watch my friend do gymnastics because I wasn't in the class. And it was very difficult at the time for my parents to financially support me in gymnastics, so I wasn't able to participate. But a few times, the coach would let me join in because she saw I could be there. And immediately after jumping on the trampoline, my parents noticed that I was a lot healthier. Exercise increased my lung function, increased my health. And that's when there was a shift of, “oh, you know what? We need to put all of our energy and everything that we can into helping Caleigh exercise because it's so important”. 

So my, like, chest percussion therapy was jumping on a trampoline. My nebulizers was going to the ocean because I lived in California, so it was, like. It was very different. But as an adult, I definitely had to manage the traffic to get to clinics with nebulizers four hours a day. And I actually did a nebulizer in the car while I would drive to Stanford for treatments because I had, like, a little Perri Neb that could plug in. Yeah. So anyways, just a little touch on my personal story. A comparison, I guess. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yeah. No, but. But again, like you were saying, like, we. We do compare sometimes with someone else that you're recovering with. And it's not about, like, you know, we want to better, but we just want to be on pace. Like, I remember, like, you going to. From the. The labs to the X ray and other people as well. Like, they're walking, and I'm still, like, being pushed by a wheelchair. I'm like, “what the hell? What's wrong with me?”. You know? So it's like all of a sudden, you're like, I got to try. I got to keep doing it a little bit more. I got to get in the gym a little bit. No extra 15 minutes. Then it became an extra 30 minutes before, you know, you're in the gym for an hour, you know, Again, exercise has been huge, and I got my parents to thank for that. Like you said, aside from all the nebulizer treatments, I did exercise even throughout my childhood. 

And my dad, he wanted me and my brothers, I have two older brothers, Frank and Dominic. We're all two years apart, so they're like my best friends, you know, and he wanted me to do the same things they did. You know, he didn't want me. He hated. If I said, “I can't do it”, I can't wasn't even allowed in my family. You know, he was a bad. He did not like a victim mentality at all. So he kind of raised me to be, like, tough and competitive and because my brothers pushed me, too. 

So went to Taekwondo together. We did boxing together, we did tennis together, we did swimming together. That was all on a Saturday. Every Saturday we do all those lessons, you know, and it was like, you were drained physically and, like, emotionally because it's a long day. But, like, looking back now, although then I'm like, this is like the military. But looking back now, I'm so grateful that my life was like that because it definitely kept me alive. It definitely gave me that competitive mindset, you know, that I use to this day and I use through both transplants, you know, and.

You know, when you said that you'd never given that time period, when I was given that time period by. I'm not going to say who it was, but when they said, you only have a couple years left to live if you don't get a transplant, that to me was fuel to my fire. You know what I mean? I don't like when people tell me when I'm going to die, you know, so it's like that I needed that. I need those things. I need people to doubt me. Because when people doubt me, I do better. 

**Caleigh (Host):**
With cf, naturally, there's a lot of people that will tell you cannot do something, will not live this long, you will not succeed at this. But I think you and I are both proof that we can't always listen to those opinions. So you just have to keep pushing and stay motivated. And I feel like one of the things that somebody told me once was, nobody will care about your health more than you will. And I've always carried that because. And no one should. Right. We should be the ones who take responsibility and do our treatments and manage everything as best as we can. 

So being so physically active and, you know, you touched on your siblings, which I agree siblings are huge in just our success and our motivation. 

But, you know, a lot of people with cystic fibrosis, I've dealt with this multiple times in my life. Kind of have like a dysmorphia in a way, because I feel like we grow up, we are very thin. Most, a lot of us, many of us are very thin. Not everybody, because it is very unique, a disease that is very unique. But I was extremely fit growing up. And then once I hit end stage lung disease, as you know, I was on a feeding tube, I was very skinny. And then post transplant, my second transplant, I've gained 30 pounds, and I'm trying to manage that. So CF can be like a roller coaster emotionally and physically, and those two things can tie together. 

Do you ever have challenges that you face in that? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
100%? That was one of my biggest challenges, that I was always the smallest kid in the class. I was always the, like, the least weight of any of my friends, you know, And I couldn't. I couldn't do as much as, like, in terms of strength as some people could. Like, you wouldn't find me on a football field, let's say that. Okay. But I would be on the soccer field and, like, I'd be able to stay. Like, my endurance was pretty good compared to, you know, considering what I was going through. 

But yes, like, I, to this day, I don't wear shorts. I mean, still today I don't wear shorts because I think my legs are too skinny. I know a lot of CFers that never had challenges with their weight, but for me, that was a big deal. 

I never got a feeding tube. I was always, like, on the cusp of Getting a feeding tube. I was always threatened with a feeding tube. You know, at clinic, you're going to get a feeing tube.

Caleigh (Host):

*threatened* is the word

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**

Yeah, I know, but, like, doctors would say if you're not. If you don't gain weight, you know, and that helped. I mean. And of course, I'm from an Italian family, so I had a lot of food around and good food. So we had restaurants and stuff and, like, you know, I was lucky that I had that, because I probably. If I didn't have that, if I didn't come from an Italian background with such incredible food and a grandma and a mother that cooks me all the time, I probably would have not reached that. I would have reached that threshold of getting that feeding tube, and it would have been even harder. 

And like you said, you know, earlier, when you get; when you have to get a transplant or you get listed for a transplant, it is like a. Like, you have to be in that medium of, like, too sick, but not. I mean, sick enough, but not too sick. But that also goes with weight. Your BMI. In a lot of these places, they want your BMI to be like, 19, 18, something like that, in order to get listed. And I struggle with that. Like, I got down to 108 pounds, you know, at one point. You know, I mean, I'm about 5 foot 6. So 108 pounds is like. I was like skin and bones. You know what I mean? And this was like, right. Maybe like months before my transplant, my lung transplant. It was tough. It was tough, and I did what I can, but I was on so much oxygen and I couldn't breathe. It's hard to eat. It gets to a point where everything is a struggle. You know, showering especially, you know, walking up, any kind of. 

**Caleigh (Host):**
Making the bed. Oh, my gosh. Making the bed was so bad for me. Getting dressed, everything. Yeah. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Your body's, like, pushing through so much, and it's going through such. It's such a challenging time in our lives. I don't know. I do think that. I think that pain became a source of my strength, and I am actually grateful that I went through that. I know that sounds weird. People are like, I would do it again, knowing where I am now. I'm grateful for all that because it made me who I am, and so I don't resent or want anything to change of my past. 

If you have faith, like, I have faith that I feel like everything happens for a reason. And if you just trust in the process, you'll understand later why. Why you had to go through that, you know, and I believe that's what kind of brought me to what I'm doing now with my. With my nonprofit. All that. 
Everything that happened is what made me want to do this nonprofit. 

**Caleigh (Host):**
You know, I mean, I agree with you in the fact that what we've gone through has formed us as people now. Right. It's formed our brains. We've literally had to, like, alter the way we think and our perspectives on the world and time and friends and conversations and all of that gets very. It all shifts when you go through life or death situations and when you're in end stage cystic fibrosis. Many times, for me, it was every single day, making life or death decisions for years, especially when I was in rejection and living in the hospital full time for the six months before my second transplant, it was every single day, you know, do this or do this. 

And it's like, I don't know which one's going to be the better option, but I got to make a decision, so I'm just going to go with how I feel and what I believe is right for my body. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I give you so much props, Caleigh. What you went through. You're, like, an unbelievable fighter because you, like, suffered so much. And, I mean, I suffered watching it, you know, because you're my friend, and I. I hated to see what you went through. And I'm. And again, that was inspiring to me. Like, people like you who went through so much, and you're like, you know, I may have had a cold at a time, or like, I'm like, well, Caleigh’s in a hospital. I shouldn't even complain about what I'm going through. 

And it made me, like, see things differently, you know, because, like, when you cheer on, we're like. It sounds like we're soldiers in a way. I always see us, like.  Like soldiers in a common war, you know, and, like, when we lose someone, it hurts us, you know, we take it personally. 

**Caleigh (Host)**
Yeah. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**

And then we. I at least try to live my life to do good for them. And for my donor, you know, like, you have to keep the people that have gone through this in mind, the people that you were friends with in mind. When you make your choices in the future, it gives you a certain responsibility, I believe, you know? 

**Caleigh (Host):**
Do you also feel like, though, you have survivor's guilt ever? 

Because I know that, yeah. Like, we mourn our friends so much, and we mourn them as people, our friendships, the relationship, you know, we had with this person. And I also think it, like, makes you reflect on yourself. Reflect on your health, reflect on your own time. And it's a very sad experience. I think all of us that are older with cystic fibrosis can stack index cards up with names of people that we've lost with cystic fibrosis. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
And you know, I love social media. Can be a great day. There's, it's necessary, you know, especially when you have a business or you're an actor and you're trying to promote things or for my nonprofit, of course, it's been the best source of fundraising, but there's things that you see, like when you follow CF pages, all those people that pass away and it does impact you. 

For me, again, I try to take a personal responsibility and it is part of survivors guilt. But what am I going to do to make other people's lives better? How could I help improve other people's lives for prevent other people from this happening? 

Whether it's someone who was on the list and didn't make it because they didn't get the call in time. Well, now I kind of take it upon myself to see what I can do to maybe convince someone to be an organ donor, you know, or whatever. Like, I don't know, it gives me a certain response, a personal responsibility, you know,

**Caleigh (Host):**

And I mean, I think that's. Why we advocate, right? We're advocating for people to be organ donors. We're advocating for this rare disease for people to be more knowledgeable about it. Maybe one day there'll be a researcher, scientist or a physician who listens to this podcast or another podcast or a story and they want to help and it inspires them to, you know, invent the next thing, invent a cure, hopefully. Right? Because we're all trying to make CF stand for cure found. That's a common thought for sure. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I agree. I, I think, Caleigh, what you're doing here is also impactful and changing lives because people are going to watch this and they're going to hear other people's stories and it's going to give people hope. And like, hope is a big thing, you know, like, I mean, hope is transformative. You know, if you could see other people that have gone through it and all of a sudden, you know, you're going through it, I mean, and you're like, okay, well he did it. I can do it. You know, why can't I do it? You go into something with a different kind of mindset. If you see all the people have been able to do it, you know, so this is great for the CF community. And. And I'm proud of you for doing this. It's going to help a lot of people. 

**Caleigh (Host):**
Thanks, Nick. You know, I've been trying to do this for years. I just finally did it!

Which is I have such, like, a big imposter syndrome just because I stopped working at such a young age. And so I think that's kind of in San Francisco, where I spent, like, 11 years in L.A. I spent another five years. I grew up in southern California. Like, career is a huge tie to identity and worth. And so I kind of have that thought. Like, if I don't have a career, am I worth. What am I worth? You know, I'm so. I have uncertainties, insecurities because of that. But I will say marrying Bryan has really taught me that life isn't all about career. We don't work, live to work. You know, we work to live. 

And so, yeah, let's shift to something more positive and talk about hope, as you said, and mentality. And, you know, there are these insecurities. There are these uncertainties and challenges with living with a rare disease, a chronic illness. And you said your family keeps you motivated, your friends, your community keeps you motivated. What else keeps your spirits high? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I just, like, love life, you know, I love. I love to experience new things. I love traveling now. I find my joy comes from also, like, kind of doing things for others. I'm, like, selfless in that sense. I discovered this after my transplant, really more. And my real, true joy is one of the things I'm most proud of, and my passion is my nonprofit and doing things like this, sharing my story with others. 

You know, I'm also very competitive, so I love, you know, now I'm participating in the Transplant Games of America and involving myself with things like that. So all those things are, you know, kind of give me a sense of happiness, you know, and makes me happy to be alive, you know, and give back through those things, you know? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Well, you said you're proud of me, but honestly, I am proud of you for who you are and also for your participation in the Transplant Games of America. 

So congratulations! You brought home the volleyball silver medal as well as the pickleball bronze medal. And those aren't even. That was this year. Those aren't even your first medals. You won a silver in tennis in 2020, and you also won a Texas hold' em as well in 2020. Which I didn't know was a thing. And it's just. It's all exciting. I'm not sure if all of our listeners know what the Transplant Games of America are. So can you explain a little bit of what they are to people? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yeah, for sure. Transplant Games America happens every two years. They. They choose a different, you know, like, city in America. And basically anyone who's a transplant recipient is in a division. And then those who are a donor, like organ donor, like my brother Dominic, like a living donors is a second division and they compete against each other in each other's age group, basically. 

But it's not about the medals really. I mean, it is. It's great. It's cool. It's something you can like, brag about. But at the end of the day, it's like you have also donor families that attend this. So people that lost their loved ones who, you know, have. Have, like, they know that they. They've met the organ recipients, and some of them even are there cheering that organ recipients like on. I mean, it's so powerful. Exactly. 
It's true love. 

And the bottom line is we're. We're trying to raise awareness for the importance of being an organ door. This year was Alabama, Birmingham. They did a terrific job. When we got off that plane in the airport, there were transplant Games of America signs all over the airport. It was incredible. And that was powerful. You're just seeing that message was there and the community, the city was so proud to have us. And they did a terrific job of organizing it, getting everyone there. 

And this year they had a film festival in it. And in that film festival, they showed movies about transplant, you know, or that were related to the transplant or gift of life. So it was. It was pretty cool. 

And just receiving to me this year, the biggest thing that, like, the most impactful thing of the year for me was when we received that silver medal for volleyball. The donor families were the ones putting the medals around our necks. And then you hugged him. And I never got to meet my. My organ donor family, except obviously I know my brother Dominic, but I'm talking about my lungs. But that was like. 

For me, it was a sense of closure almost, you know, because, you know, it also helps them, you know, like so being able to be there and just say “thank you to her” and “I'm sorry”. It would be like. It was like it was if I was saying it to my own, you know, organ donor's family, you know. So it was a beautiful moment, but I think that the mission was accomplished. 

There's been so many stories about was all over the news, so they did a terrific job of Organizing it and also spreading that message of hope and the gift of life. How important that gift of life is. 

**Caleigh (Host):**

Yeah, that's really cool. I mean, you know, I aspire to be in the games one day. I really hope that happens. But I mean, yeah, it would be really fun if only you can come back to California and we can be pickleball doubles. But if only I could convince you. But it seems like maybe you're moving the opposite way because you just moved back to Chicago. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I know, the Sol Cal team was an option and so was Nor Cal, you know, and I have a lot of friends in the on those teams as well. But it's great. 

You know, it doesn't matter about the competition of it. We're all together. You know, we all went through the same struggle. You know, we're all like, we're sending a message to the people, you know out there that follow this through social media that, you know, we're giving them a sense of hope again. It's all about hope. We're giving other people hope. Aside from that, we're raising awareness about being an organ donor and the importance of that. 

And then we're meeting these donor families and hearing their stories, and it's very powerful. It's just. That's what it's all about. There's a lot of things that you can compete in, but, you know, I, I don't even compete in that many, that much stuff. I just do the couple things, but for me, it's just being there. 

And also I, I proud to say that the *Breathe Like a Boss* *Foundation* actually supported Team Illinois and we kind of sponsored them. So we, you know, we had our logo in the back down the T shirts and, you know, that was a proud moment for me. I didn't have a stand there, which I'm considering for the future, but I was able to, you know, pass on my card, tell other transplant recipients what we do, share our message. And, you know, we've even gotten some grant requests since then already. So that's the goal. You know, we want to help as many people as we can. 

**Caleigh (Host):**
I mean, yeah, you even actually helped me to go to a climbing gym when I was recovering and transplant. So thank you very much. Like a boss foundation, you guys. And you also put on, like, amazing fundraising events. And it's really cool to see you doing what you love because obviously you're very passionate about it. 

And you mentioned a few resources about how to stay connected and finding support within the CF community. You talked about the Transplant Games of America. You talked about social media a little bit, and you talked about what else? Just advocacy in general. Are there any other resources that maybe we can share with listeners about how you can gain a mentor or how you can find friends in the community? 

I actually attended breathcon by the Cystic Fibrosis foundation this year, and there were many, many individuals who had never met anybody else with cystic fibrosis. And this was their first year attending and being that sort of, like, first connection to somebody with cf, it's. I don't even know how to explain the feeling. Can you explain it? Like, when somebody meets you and you're the first ever person that they've met with cf when they have cf, it's.. 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
I think a way to find other people with CF is communicate with your social workers. Everyone has a social worker. If you're in a CF clinic, they'll connect you with people. You know, I go to my social workers as the president of my foundation, and I give them my cards and I tell them what we do, and I pick up the phone and call other social workers all over the place. I mean, I know a lot of the social work, everything kind of goes through them when it comes to finding other mentors and stuff. I've had social workers send people to my nonprofit or to talk to me about getting a grant. 

And then there are some that just don't qualify or they don't even looking for a grant, but they need someone to talk to that have gone through the transplant experience. And I've done that, you know, like, I've, like, mentored people, you know, and, you know, made friends with people. And another thing was through stuff like that.

I gained the community of friends. I even started with me and Dominic Quagliozzi, who was like my mentor, you know, through the transplant experience, because he had been transplanted six months prior. We started a fantasy football league with as you know, because you were part of that league, was with 12, you know, now we're at 12 people, and 10 of them had double lung transplants once, at least, if not more than once. So, you know, we're a community. And it is great to find that. 

As for, like, me being the first CFer that another person may have met, you know, I can't, off the top of my head, remember this. I know it happened, like, especially, like, being growing up in the hospital at Children Memorial, when you first meet someone. I kind of remember the person I like, hung out with at first. The first time I ever hung out with a CFer, he was much older than me, so I could speak on that on behalf. I felt like I was looking up to this guy because he was older. In the 80s or 90s, people weren't even reaching that age. So being able to see that, it was a different perspective for me. Like, oh, my God, he's a teenager. That's so cool. He's actually a teenager. I didn't think I was going to get there, but this guy did it. So I hope I give that. If I met. 

I'm sure there were people in transplant games that I know the word had cf, and maybe they don't have a lot of friends with CF that I've met. And I hope I can inspire them, you know, and other people that, like, my social workers may send me, you know, because I, you know, I just want good for all. I mean, at the end of the day, we're in this battle together, so if there's something I can share or, and vice versa, or they can share for me and inspire me, it's always a beautiful thing. I mean, that. 

That's the goal of life. I mean, you know, we got to try to help each other. That's. That's what life's all about. 

**Caleigh (Host):**
Yeah, I think you said it. I was trying to find my words, and I couldn't. But you said it perfectly. Is like that feeling that we've had by meeting somebody else with cf. Like, in the very beginning. I didn't meet anybody with CF until I was an adult and I started attending Stanford. That was the first time, you know, I was impatient, and I started seeing people in the halls because it was like a cf wing. We were all together in that wing. I mean, not together. We had our own rooms. It was properly managed, but you could see people in the halls, and every now and then you'd be like, you have cf. Okay, well, let's meet outside where there's chairs, and we can wear masks and gloves and sit, like 12ft apart, not 6ft apart, because I'm nervous and, you know, and it's really cool to be able to hear other people's experiences. And you learn so much through hearing people's experiences. I know myself like, you know, I didn't know a treatment existed until I heard and read about it from somebody else on social media. Then I think, “oh, can that apply to me? Can that apply to my health?”. So it's very educational to have these relationships. 

So as we kind of come to an end of this do you have any advice for listeners who are fighting their own battles with cystic fibrosis? 

**Nick Di Brizzi Jr (CF Person, Founder of Breathe Like A Boss Foundation):**
Yeah, I think 46.48 - 47.08 take it a day at a time. Enjoy life. Live life to the fullest. 

I think that, you know, sometimes remember that sometimes God may put a Goliath in your life so that you could find the David within you. Like, I feel like everything happens for a reason. You know, like I said earlier, let your pain be your source of strength in the future. 

47.08 - 47.30 And when I went through my experience of the transplant, I think the biggest component was the humanity part of it. Like, how many people came together to help me? You know, there's good in the world, and sometimes you have to go through a struggle to find that. 

And there's always a light at the end of the tunnel, you know, And I experienced that light. It blinded me. That's how bright my light was. So I'm very blessed.

I feel like you got to have hope and faith and reach out to other people. You know, there's help out there, whether it's through grants or just mentorship. It is going to help anyone who's going through that struggle. 

And I think the most important message for anyone that doesn't have anything to do with CF is just watching this is the importance of being an organ donor. You know. You know, one organ donor can save up to eight lives. So, you know, it's crucial. 

I lost so many friends of mine that have been on the list that just didn't have enough time. There wasn't enough time, enough organ donors out there. So they're not with us anymore. But who knows what those people could have done with that gift? 

You know, I know I'm trying to do the right thing. I'm trying to help a lot of people through my nonprofit. And I think that other people with that gift of life will do certain things, like, you know, it's transformative. It really is a transformative thing for people. So it's important to be an organ donor. That's my message to anyone.