Life Post Transplant and the Transplant Games

**Caleigh (Host):**
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 there. 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 about something emotional, celebratory and empowering. The Transplant Games of America and the World. Transplant Games. 

These events bring together transplant recipients from around the globe to compete, connect and celebrate the gift of life. It's about more than medals. It's about reclaiming strength, honoring donors and proving just how full life can be after transplant.

We'll dive into what it means to participate in these Games. How sport and community can play a role in post transplant healing and the deeper meaning behind every race, jump and team victory. 

Now let's jump into the episode. 

Today I'm honored to be joined by Matt De Fina, a two time double lung transplant recipient, a father, athlete and advocate. He received his first transplant in 2012 and his second in 2020. Matt is a proud dad to his daughter, a coach at her high school, the co owner of De Fina Family Sellers and a commercial real estate professional. With 37 medals and the goal of 50, Matt shows us what's possible when second chances are met with heart, grit and gratitude. 

I know the Games celebrate the life saving gift of organ, eye and tissue Donation and. And they're designated to honor donors and their families while showcasing the health and success of transplant recipients. 

And I actually first learned about the Transplant Games from Anna Modlin, who competed in 2016, and she won eight gold medals. And she was like, the quote, like “Michael Phelps” of the Olympics that year in swimming. Yeah, it was really amazing to learn. And then now seeing you and Nick Di Brizzi and so many of my other friends join and. And talk about it really is like a light in their life when they express how it is. 

I know. Also, you know, you've always been an athlete. Can you walk us through being an athlete and having cystic fibrosis as a child and a teen and when things shifted towards needing a transplant? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
Yep. First of all, Anna Modlin just want to say hello if you're watching this, and is an absolute beast. And you're right, she was like the Michael Phelps of those games. I mean, she just. Just blazed up the swimming pool. She's such an incredible swimmer. And, yeah, that was 2016 in Cleveland. I remember those. Those games. I was my very first TGA myself. 

And, yeah, that's the TGA that I just. I fell in love with it. I was like, wow, this is something that I got to keep coming back to year after year. And, you know, that's when I saw Anna do so well, and. And Isa Stenzel was there and that's when I connected with her for the first time and got to compete with her and again, just made so many friends and got to connect with so many different people. I was just like, wow, this is incredible. 

Being born with cystic fibrosis when I was born in 1977. And at that time, to be honest, there wasn't a whole lot that was known about the disease. It was still considered a relatively new disease in terms of. Of the number of cases that doctors in the United States were seeing. I think, if I remember correctly, I think it was just back into, like, the 1950s, really, that CF had started to be. Began to be recognized as a disease that you know by that particular name. 

And so by the time the late 70s rolled around, treatment options, medications, that type of stuff was still relatively minimal. And at that point, of course, most patients weren't living past childhood. And when I was born, doctors, based on the severity of the symptoms that I was presenting with, doctors told my mom and dad that I would not live to see my fourth birthday. And so I can, as a parent myself, I. I can't imagine you know, what that must be like, what that must feel like to receive that kind of news about your new baby, that there's this prognosis of this horrible disease and your child's not going to live past four. 

What the doctor literally told my mom and dad was just take him home and love him because he's not going to live past four. 

That was essentially the advice that they were given from, you know, this well renowned physician, you know, and I was very fortunate because I was born to two parents who were extremely dedicated, disciplined, and determined to see me beat that prognosis. 

In my first four years of life, my mom has told me that I was hospitalized probably about 50 times and I had lots of complications related to cystic fibrosis. Of course I had lung infections. I also had some kind of CF related epilepsy issues. I had numerous emergencies that they had to rush me to the hospital to. But by the time I hit my fourth year of life and I had started seeing this new doctor, things started to turn around for me. And then by the time I was in kindergarten, I had really started to stabilize and, you know, things started going well for me in school. 

That's when I got involved in sports. And so becoming involved in sports and kind of getting off on the athletic path, I think is a huge reason why I was able to survive and thrive into my teenage years. 

I started riding my bike to school every day. I didn't live tremendously far from my elementary school, so I rode my bike to school every day. I got involved in little league and basketball and tennis and all sorts of different sports. And so I was just a real active little child. You know, I was always running around. I was also pretty mischievous and probably got into trouble more often than not as well. 

But yeah, you know, I was just super active in that activity and playing sports and, you know, that just, that really helped exercise my lungs and keep my lungs as healthy as possible, I think, and really tried and really helped to sort of keep lung infections at bay. And so by the time I was into my teenage years, I had really started to focus more on basketball, track and field and tennis as my main sports, you know, and, and I also started to get into the weight room and started lifting weights. And that's, for me, that was probably a big turning point, was finding the weight room, you know, learning from older guys in the gym who would teach me the proper techniques and proper ways to lift weights, you know, and just all sorts of different things. 
But the weight room for me was, it was where it really started to change as far as seeing that benefit to my health and also helping me to gain weight. So, yeah, that's kind of how things got started off for me in terms of getting involved in sports and weightlifting and whatnot. 

**Caleigh (Host):**
And at what point did your health start to take a shift and go towards transplant? You know, how long did you have to wait for transplant? 

Because I know so many of my friends, it's like a devastating change and a devastating decline where they transplant and decline in the same year. And then for me and other people I know as well, it took 10 years, basically, of constant decline to get to a point of transplant. - Ten years is a bit much. It was five for me. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
In my 20s. I was very healthy. Probably my early 20s is when I would say I was at my peak. I was really into bodybuilding. I was in the gym. I was Fresno State doing my undergrad studies. College frat boy, you know, I was. I was almost every day. Yeah, I could. I could share some pretty wild pictures from my college years. But, yeah, so that's when I was a. My health was at my peak. I was very fortunate that I was super healthy during college. And again, a big part of that, I think, was probably because I was hitting the weights so often. You know, I was probably. I would plan out my school schedule almost around my gym time so that I could go to the gym once or twice a day. And so things were great. 

I was doing well again, still played and participate in a lot of. In a lot of different sports. As you know, one of the sad truths about cystic fibrosis is that it is a progressive disease. And even if you're doing everything right, this is a disease that really can turn on you at any point. You know, with. Without any notice. You can get a lung infection just like that. You can have an exacerbation of your disease just like that, you know, without notice. 

And so that's kind of what happened to me, really. I was. Again, I was doing everything right. I was seeing my doctors on a very frequent basis. I was taking all my medications, doing all my treatments. I was taking in proper nutrition. I was hitting the weight room and exercising almost every single day. 

And again, following all the guidelines I was supposed to. But then, unfortunately, just like that, I hit a lung infection. My lung function drops about 10%. Things go on. I hit another lung infection a few months down the road. Boom. My lung infection drops a little more. And that's kind of the deadly cycle that were starting to get into in my late 20s. By the time I was in my early 30s, my lung function was probably down to about 60 or so percent. And then again, a couple more lung infections, Boom, my lung functions down to about 30-40%. 

And so just like that, you know, I even though I was still in pretty good shape, hitting the weights, working out all the time, my doctors start talking to me about transplant, and I'm like, whoa, you know, like, I know my lung function is only around 35/40%, but I feel great. I'm hitting the weights all the time. I'm still working full time. I don't feel like I need a transplant. And then. And that's kind of the mindset that I had in my early 30s. Part of that, just me being stubborn. I was of the mindset I wanted to kind of postpone and prolong the need for transplant for as long as possible. 

April 26, 2012, I was added to the transplant list. They told me, you know, it'll probably be anywhere between six months and a year before you receive the call that there's a donor for you, because that's about the typical weight for a lung transplant. And hearing that was a little scary as well, because even though they had told me two years, there was really no guarantee that I was going to last even another year. 

You know, at 25% lung function, you're. I mean, you're potentially one lung infection away from dropping down to like 15 or lower. And at that point, then it could be you might be outside of that window for, you know, for being eligible for a transplant. So they had told me about six months to a year. But then, low and behold, it was only two and a half weeks later. 

It was May 15th of 2012. I got the call 6 o' clock in the morning, woke me up out of bed. It was my doctor calling me to tell me, hey, we have a donor for you. We need you to come back to Stanford. And so my wife and I hop out of bed, throw a bunch of things together. We weren't prepared at that point. You know, hadn't even packed anything up. And so we threw some stuff in some bags and then hit the road and made it to Stanford. 

I had a very successful double lung transplant. The surgery was about five and a half hours long. And at that point, I was then wheeled in to the icu. Once I was extubated and I woke up from the anesthesia, it was immediately, very apparent benefits of transplant. 

I was instantly taken back by how clearly I could breathe and how deeply I could breathe, you know, it was something that, frankly, I'd never experienced in my adult life. Ever since, you know, my entire adulthood, I had these crackles in my chest every time I would inhale. You know, even. Even though I was working out and hitting the weights and doing again, doing everything I was supposed to do with cystic fibrosis, I had junk in my chest the whole time. 

All of a sudden, I wake up, and I'm breathing clearly and deeply, and it was just incredible. I also looked at my. My fingernails. I could see my fingernails were like this nice pinkish color. I was like, what's this? This is what my fingernails are supposed to look like. 

It's all because all of a sudden, my body was oxygenating at 100% O2 saturation again. Something else that I hadn't experienced as an adult. And so even things like my skin color changed, my fingernails changed, you know,

**Caleigh (Host):**

voice changes, everything. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**

Yeah, it was just. It was just so incredible. It was then on day nine, that I was discharged from the hospital altogether. Maybe even day eight, I'd have to go back and look. And then day 12, I was back in the gym. It was really a pretty fast transition, you know, from the time that I had my transplant to the time that I was back to normal activity again. Day 12, back in the gym, hitting the weights, putting these new lungs. New lungs to work. So. So it went well. 

**Caleigh (Host):**

That's really incredible. That's so fast to get back to it, especially knowing the pain firsthand and knowing the exhaustion, too. 

But also, I feel like after transplant, you're right. This feeling of, like, one, you're on tons of steroids and tons of medication, so you almost do feel like Hulk. You're, like, ready to go. You're ready to get up, you know, very dependent. 

Because my first transplant was not that way. Like, I never experienced that full breath of air. I didn't get that change of color. My voice changed, but I didn't have all the other things along with it that I had heard from other people, yourself included, that I knew, that told me these amazing stories. 

But my second transplant, I woke up, and I couldn't even. I was, like, in shock of what was happening to me, because it's like what you say. 

You've never taken a breath that deep and that clear, and you can feel your, like, rib cage and your sternum actually expand in a way that it never has before. It opens up so much wider, and your body is just so different. But I spent the whole first night after transplant. I mean, my whole family was there, but my parents were there by my bedside, my dad and my mom. And I just kept saying, oh, “I'm so happy right now, I'm so happy right now” “I can't believe it, can you guys believe it?”.

Your answer there, one of the biggest, one that stuck out to me was just that cystic fibrosis is truly a progressive disease and that means that we can do everything right and we can still decline. And that's the nature of the disease.  And so I think for people out there that may be declining right now, know that you're not alone, that people have gone through it and people are going through it with you and to keep working really hard. And that hard work is acknowledged because we get it takes, it's a full time job just to take care of yourself. 

You know, with cystic fibrosis, pre transplant, post transplant, and you do so much, you have a professional career, you're a father, you're an athlete. How do you balance that all along with your post transplant responsibilities day to day? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
It's a great point and I love what you said there too about wanting to make people aware that they're not alone. 

You know, one of the things I absolutely love about this CF community is that it's such a tight knit community and it's such a huge community. You know, if you take advantage of social media and you connect with people, you knowledge is power. I truly believe that knowledge is power and that there are so many resources out there, including just connecting with people and hearing people's stories like yours and mine and, and there's so many people that are willing to talk to others and people who are struggling, letting them know, like, look, you're not alone, there's other people that have been through this and we can help you know, help calm your mind and ease your mind and let you know things are going to be okay. Whether you go through a transplant or you don't. It's good to just have those connections there to help you out. And so I love that. 

**Caleigh (Host):**
I just want to like jump off of that is and say like when I was going through pre transplant, before my first transplant, you had actually had it at the same hospital as I had. And it was during the time that I was fighting to get listed because I was sent home on hospice originally and I was trying to, you know, gain more weight and control my blood sugars and get my PFT up and I was working as hard as I could. You are a huge mentor to me. 

So I really want to say thank you because there was so many times where, you know, I probably texted you in random hours of the day and night about hard things I was going through. And I really did appreciate it because I think having mentors to sort of help us just. 

We said it so many times, but truly just not feel like we're going through it alone. Because you and I are blessed to have supportive families and supportive spouses and partners. Not everybody has that, but even with that, it makes such a difference to have somebody who's actually gone through it themselves. And sometimes not to say, oh, you'll get through it, but say, this is shitty, this sucks. You know, like, this is a hard situation. Like, keep going, and just acknowledge it. And you did that a lot for me. So thank you. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
You're welcome. I totally remember those. I remember those conversations. I remember that time, just like it was yesterday. Yeah. And you're right, and that's a good point. 

Learning from the experience of mentors and people who've been through it and walk that walk already, that's key as we take care of ourselves as patients. It's a full time job just to be a transplant patient or just to be a CF patient. Everything that we have to do. I often will say that we're professional patients. And so, so it can be challenging. You know, I'm very blessed. I'm very fortunate that I'm in a situation where my health is in such a good place that I can have a full time job, I can spend a lot of time with my family and still have enough time to take care of myself. And so

The miracle of transplantation, I will say that, you know, when I was in stage cystic fibrosis, that my life looked very different than it does now. You know, I was doing my treatments probably three or four times a day. I was taking tons of different medications. I had to take very frequent trips to the hospital and to the doctor's office and. And it wasn't a good time. You know, my health was not in a good place. I wasn't. I mean, at that point, when you're on oxygen 24, 7 and your body is really starting to fail, everything is difficult. You know, even just bending over, trying to tie my shoes or trying to walk up a flight of stairs. It's next to impossible when your lung function is only at like 20/25%. So things look very different. 

I had my first transplant Things turned around immediately, like I mentioned, you know, the. The ability to breathe clearly and deeply. Unfortunately, I started to develop rejection after about a year. And so by the time 2014 rolled around, I had a diagnosis of chronic rejection, and I had started undergoing photophoresis treatments. And once I started photophoresis, my, you know, my lung function had started to decline again. I was back down to about 35% lung function just like that. But the photophoresis worked well for me and sort of halting that decline of my lung function. And so I did photophoresis, and that allowed me to live in chronic rejection for another six or seven years. And then it wasn't until 2019, which is when I was added to the transplant list again to have a second double lung transplant. 

And so also during that time, you know, like we talked about before with the Transplant Games, even though my lung function was at 35%, I went to the Transplant Games in 2016, competed, won seven medals, and then in 2017, went to the World Transplant Games, won two medals, also went to the World Transplant Games in 2019, which were in Newcastle, England. And so then when I got back from those games in 2019, that's when doctors added me to the transplant list again. So at that point, my lung function was under 30% again. 

And so the doctors at Stanford like to use the term a redo. So I had gone onto the list to do a redo transplant. So then it was in 2020, right in the middle of the pandemic, July 2020, I had my second double lung transplant. Dr. John MacArthur was my surgeon again. He did an amazing job. I had an amazing hospital experience again at Stanford. I was very blessed to be at Stanford with an amazing team, amazing nurses watching after me. And it was. It was just a good experience all around. And so that's when I had my second double lung transplant. And so after that, fortunately, since then, I haven't had any problems with rejection. My health has been great as I sit here and talk to you today, I'm at the healthiest point in my entire adult life. 

And so, you know, having that support system, always maintaining a very positive mindset, a mindset of hope, you know, and just. Just having that drive to survive and that drive to thrive, you know, not
I'm not a poet or anything, but, you know, just, you know, like I said, just having that drive, you know, that. That the will to. The will to keep living and not give up, you know, when I. 

I've done a lot of motivational and inspirational speaking. And. And one of my taglines is *Never give up. Always persevere.* Just. You just gotta. You. We face adversity from so many different directions in so many different ways, you know, and it could be. It could be a health challenge. It could be, you know, financial problems or. Or relationship problem, you know, struggling to get a job, you know, academic stress, whatever. Whatever the adversity may be, you know, you just. You have to never give up. You gotta just keep, you know, trudging forward and moving forward and. And just persevere beyond that adversity because the goal in the end or achieving the goal in the end is well worth it. It's worth the struggle. And so. 

**Caleigh (Host):**
And as hard as it is to probably hear for people going through it, I always say everything's temporary in life, you know. Yeah, everything's temporary. The hardship and the battle and the moment is temporary. 

But also, I believe my health is temporary. Right. That's why, for me personally, I just try to live every single day so that I have no regrets. So if I were to get sick again tomorrow, I wouldn't feel like I wish I would have done something or I wish I would have gone somewhere or said something to somebody, you know, because it is so important to live in the moment and know that it's temporary and know that, you know, be grateful for what you're going through and also know that the battles aren't. Aren't going to last forever and that afterwards, it's worth it. 

I do want to talk about just competing and connecting, and you talked about how you competed in 2019 on oxygen, and you've also competed in swimming, volleyball, racquetball, tennis, multiple track and field events, and basketball. And you started in 2016 and you've been going almost every single year. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
Yeah. 

**Caleigh (Host):**
What keeps you going back and returning to the games? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
So it's. It's a number of things. It's everything. It's. Number one, I'm a competitive guy. I love to compete. This is a great and a great opportunity and a great outlet as a transplant patient, as a way, you know, it's just a great event to be able to compete against other people who have also received transplants and people who have, again, walk the same walk that you have. And so I love going to these games and competing against other transplant patients. 

But even more so than that, it's. It's about the camaraderie, the connection, the inspiration and motivation that you get when you go to these games. And so, again, I love going there, connecting with people, making new friends. Every year, every time you go, you meet new people, and you get to catch up with old friends. And, you know, people from all over the country at the World Games, from all over the world that are also transplant patients, and they have very similar stories, very similar struggles that you do. And so just to connect with people like that, it's very powerful. And again, very inspiring. 

And so, in the Transplant Games of America, I compete for Team CalNev, which is basically all of Northern California, plus all of Northern Nevada. And I love our team. I'm our team manager. And we have just so many people. We always have a pretty big team that goes to the TGA to compete, and we just have some amazing team members with amazing stories, and I just love connecting with them. 

But the games themselves, they're so inspiring. And it's impossible to come away from these games without feeling inspired. 

You go to these games, and there will be children there, kids that are 7, 8 years old who have had transplants, and they're out there competing. They just have the biggest smiles on their faces. You know, I just. I mean, just thinking about it brings. Brings tears to my eyes right now. It's. It's just so incredible to watch them and to see the joy of a child just out there with the biggest smile on their face, having fun. You know, they don't know any different, that maybe they received their transplant when they were just a baby, maybe they didn't, who knows? But they're out there just competing, having fun. 

And to me, I draw inspiration from that because we often get caught up in our own stress in our own life, and I'll see this kid, you know, running the track and just having a blast, big smile on their face, and I'm like, Even though I'm 47 years old, that's how I should be living. And then also seeing folks out there who are, like, 85 years old, you know, they've had transplants, they've had other struggles in their lives, and yet they're there competing. They're there just pushing the envelope, pushing their bodies to the max, and you just can't help but be so inspired by that. And, you know, every time I go there and I. And I watch these folks compete like that, I'm like, man, that's how I want to be when I'm 80 years old or 85 years old. 

Like, I will be back here at these games. I'll be running around the track. I will be swimming in the pool. I just absolutely tip my hat out of respect to everybody that's at these Games competing because, you know, we know it's not easy as a transplant patient or as a CF patient or whatever your condition may be. 

It's not easy always to train and I guess depending on how competitive you are. But, you know, there's a lot that goes into it. And so the fact that many of these folks are just out there doing it is incredibly competitive whether they win a medal or not. It's not necessarily about winning the medals, but just, it's the fact that they're just able to do it. You know, every single person that crosses the finish line or touches the wall in the pool, you know, or that's a victory. Every one of them, it's a victory. And I, I just, I give a big round of applause to every single person that goes out there and competes like that. 

**Caleigh (Host):**
You're right. Like, we would not be alive without these gifts. And so I think just going is just spreading awareness for organ donation as well, for people to be donors, because it's proof that, you know, these donors save lives and we're living and breathing and, you know, pumping blood in our heart and, you know, all these things because of donors. 

On the flip side of seeing all of the recipients and getting inspiration from the recipients, can you share if there's a moment during the Games when the gratitude for your donor most hits.

Is there like one specific thing year after year or maybe it changes throughout the years? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
Yeah, that's a great question. And yes, there is, you know, for me there. And it happens every single time I go to these games. Sometimes it's from watching other people, sometimes it's when I'm competing myself most of the time. And it does, it happens every year. There's usually this one moment where all of a sudden it just hits me again like a ton of bricks. 

I mean, I'm always grateful. I always have this tremendous sense of gratitude, but I always kind of have this wow type of moment where it just hits me and I'm like, man, I can't believe I'm here, like. And I just, it's this profound moment of gratitude and gratefulness and inspiration that all. 

And it usually comes during track and field for me, because for me, when I was an end stage cf back in like 2012, prior to my transplant, when I was at my worst point, I was on oxygen full time. I just remember how skinny I was, how weak I was, my lungs were in such bad shape that I couldn't even walk across a room on a flat surface without being so incredibly short of breath that I thought I was going to pass out right there, even though I was on oxygen. I mean, that's kind of what it feels like when your lung function is like 20% or less. I mean, everything is difficult. 

And so knowing that feeling, knowing where I was and then fast forward to competing in the games and I'm out there running the 100, running the 200, running the 400 meters, running in the different relays, doing all of the different field events at some point. And it's usually after the 400 meters, arguably one of the most difficult races in track. It's a full all out sprint. One full entire lap around the track. And knowing where I was and then knowing that I can now sprint a full lap, it's just, it may not sound like much to others, but it's just. First of all, 400 meters is a lot longer than most people realize. Especially when you're trying to maintain a full sprint at 100%. 

And to be able to do that now, usually right after that race, I'll have a moment where I kind of get teary eyed and I just take a second and pause and look up to the sky and just say thank you. 

Because it's incredible to know where I was and where I am now. And just to have that ability, whether I come in first place or whether I come in last place, just to have the ability to be able to run around a track now, it's just so incredible. It's almost hard to describe. But so I do always have that moment where I just feel this immense gratitude for my donor, for my family, for God, for the miracle in my life. Miracles in my life. You know, it's just, it's. It's an amazing feeling

**Caleigh (Host):**

I can understand for those of you who are listening to this and maybe not seeing us right now, we both have tears in our eyes because it is an indescribable feeling to be able to do something that was taken away from you. That one you used to love and used to do often. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
Yeah. 

**Caleigh (Host):**
And then again, you don't know if you'll ever do it again or if you'll even be alive to try to do it again. I'm lost for words and I'm scrambling over my words because you really can't describe it to people who haven't gone through some sort of disease or illness that's brought them so close to death and not knowing whether they were gonna get this gift of life or not. 

Because organs really are so limited, and that's why so many people pass away every single year waiting for organs, because there's so many people on the list. Like you said, you can't be too sick, you can't be too healthy. But in a way, you know.

The fact is, the list for recipients is longer than the list of donors. So if you're listening and you have any ounce in you that wants to possibly be an organ donor, one, go online and learn the facts. There's a lot of misconceptions, so learn the facts and sign up and register to be an organ donor. Organ donation does save lives. You and I are alive because of it. 

So ending on that note of, you know that spiel about it, and let's go on to the power of sports and healing, because sports is so healing. We know that working out, gaining muscle and gaining body mass and, you know, can really increase our lung function, especially with some sports like running and swimming and all of those things can help us. 

So how has training for the games helped you rebuild physically and emotionally post transplant? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
Like, you just hit on right there. I mean, training, it's just so good for your body in general, you know, I don't know. 

Every single person out there is not out there exercising in some way, shape or form, whether you're a transplant patient or not, whether you have cystic fibrosis or not. I mean, everybody should be out there exercising. It's just so good for your body. It's so good for your muscles, for your cardiovascular system, everything. Whether you hit the weights and you're trying to be a bodybuilder or whether you're out there doing pilates or yoga or just riding your bike or even just walking around your neighborhood, you know, a couple times a week, like, just to get outside. And exercise is just so good for your body. 

I always. 100% of the time, I always feel better after I work out, you know, and so I just. 

**Caleigh (Host):**
That dopamine is so real. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
It is. Yeah. I mean, it really is. You know, I mean, the endorphin rush you get from working out, it's great, you know, it's. Yeah. Again, I. I can't say enough about it. I've always been a huge advocate of sports. Ever since I was a little kid, I've played sports. And again, I think there's a very strong correlation between the Fact that I played sports and I was super athletic as a kid, and the fact that I was able to prolong the need for transplant as long as I did. 

Having my transplant in my mid-30s, my first transplant, I know a lot of people who needed to get transplants much earlier than I did. And, and I, again, I just think that playing sports and being active in addition to all of the training and again, doing the right things is really what led to me not needing a transplant till my mid-30s. 

That being said, you know, I'm just. The Games themselves again. There's just so many positive things I can say about the Games, and it's just. It's a good motivation for me to continue working out, to stay in shape so that I can continue to compete and go to the next Games and go there not just to win medals, but because I'm motivated to reconnect and see my old friends and make new friends at the Games and again, just be part of that message, be part of that vision. It's that motivation to keep coming back and reconnecting with people, making new friends. 

And it's inspiring to not only watch others and hear other people's stories, but to be part of the message and part of the vision myself, to be able to show people that, yes, transplantation works. You know, it's a miracle. It's amazing. It gives people hope. It not only allows people to continue surviving, but to thrive and experience things that maybe they never even experienced before. 

And so it's just great to be. To show the world that they're doing transplantation all over the world, in all of these other countries and some of these countries, you might not think that healthcare is that great, but they're doing transplantation, and it just speaks to how advanced our medical technology has come all over the world. And it's just great. 

And it's awesome to see so many people from so many different walks of life coming together, just spreading the message that, *hey, transplantation works*. 

And we're out here showing the communities that this is something that works. And each and every person has these amazing individual stories of perseverance and fortitude. 

And one thing we've all had in common is that at some point or another, we've been struggling pretty bad. And we may have even been, for many of us, may have even been pretty close to death. But we had our miracle. We had. We received our miracle. We received our organ donation, our organ transplant, and we have not just rebounded. 

We not just surviving, but we're now thriving because of that, you know, and so like you mentioned, if people out there who are listening to this have any desire whatsoever to they're curious about these Transplant Games and they have any desire to check it out and compete, I just, I mean, I can't say enough about it. I strongly encourage more people to get involved. And even if you just want to connect with someone and ask questions, I strongly recommend you do that. 

You know, every state, or just about every state has a team that goes to the Transplant Games of America to compete. And most of the states, most of the teams are organized by your opo, which is your organ procurement organization. That is usually the ones who are in charge of transplantation in your given state. So you can connect with a team through your local OPO or you can just hop on Google and type in Team Michigan transplant games, Team Louisiana transplant games, Team SoCal, whatever it may be. And most teams out there have websites and you'll be able to find contact information for your team managers and so forth. And so, and that's a very easy way that people can get involved just to check it out and ask some questions. 

**Caleigh (Host):**
That's a really good point. And just to share the websites for people to go to if they are listening right now. If you want to compete in the World Transplant Games, you can go to [wtg2025.com](http://wtg2025.com/) and to compete in the Transplant Games of America, check out TransplantGamesofAmerica.org definitely check out these websites and get in touch with the managers or the OPOs or anybody that you can find on the websites right here. 

Do you have any guidance for somebody who's starting to rebuild their strength post transplant without pushing too hard in recovery? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
My philosophy on this is this, be patient, be persistent, and trust the process. Those are kind of the three main points that I like to make with people whenever I talk about personal training or lifting weights in general. Especially if you are rehabbing from after a transplant or any kind of surgery, you got to be patient. It's not going to come overnight, no matter. Even if you're a normal person and you're, and you haven't ever had a transplant or anything. Even if you're just a normal person and you have a goal and it's good. 

First of all, it's good to have goals. It's great to have goals and try to achieve those goals. Whether you're trying to lose weight, whether you're trying to gain weight, build muscle, whether you're training for performance, whatever your goal may be.

First and foremost, realize it's not going to happen overnight. No matter what you're trying to do, you're not going to achieve your goal overnight in the gym. You've got to be patient. You've got to be patient. You've got to keep coming back. You've got to know that it may be a while. I mean, it's not going to be overnight, it's not going to be one week. It may not be a couple weeks, it may not even be a month. It may be a lot longer than that even before you start to perceive some results. And so, but that's okay. You got to keep going. 

The most important thing is that you never give up, that you keep coming back and keep. And keep working towards your goal. So be patient, but then also be persistent. Like I said, you got to keep coming back and keep working towards that goal, whatever it may be. You just have to trust the process and trust that what you're doing is going to work. You got to kind of keep your eyes on the prize and keep working towards that goal. And trust that coming into the gym on a regular basis, doing this routine, doing that routine, working with this trainer, taking their advice, doing your workouts, whatever you're doing, trust that it's going to work. But it only works if you keep doing it. You know, it's not going to work if you only do it a couple weeks and then give up. 

And so I just always strongly encourage people to just be patient, be persistent, trust the process, especially if you're a transplant patient, because as a transplant patient, we're a couple steps back and facing some other challenges that most normal people are not, such as being on high doses of prednisone. You know, maybe we're dealing with a lot of pain from our surgeries. You know, there may be numerous other things going on that make it difficult for us. 

And so to your point, you don't want to push it too hard. You got to know your body and listen to your body. Above all, you know, don't push it to the point where you're actually hurting yourself ever. But, yeah, again, you know, push yourself, but be patient, be persistent, and just trust that it's going to get better. Keep your eye on the prize and know that again, like you mentioned earlier, things are temporary. The struggles that we go through are temporary. The pain is temporary. If you keep moving forward and you be patient and you're persistent, just trust that eventually you're going to get to that finish line. 

**Caleigh (Host):**
That's really good. Advice to keep in mind. I spoke to Ben Mudge earlier about fitness and cystic fibrosis. I don't know if you know him, but he's a great advocate for. For fitness and a personal coach in. In his professional world. And he actually pointed out that for him, working out is part of his health regimen, that it's something that he considers as important as medications. And that really struck me because I feel like as a teen, as a young adult, I had that way of thinking. I constantly was in the gym. It was a priority for me. 

And now I guess I've separated it because for so long I couldn't work out and fitness wasn't part of my routine. And I probably could have, I probably could have done small things to rehab my body while I was waiting for transplant and very, you know, sick. But I was just trying to survive and I wasn't prioritizing it. 

And so now I think part of it for me is just putting fitness into my medical regimen and counting that as my overall health and staying with that goal. 

And I was smiling when you were saying, like, time management and block scheduling, because my husband says this to me all the time. He's like, you have to manage yourself to get anything done. You have to block schedules. So I think it is important, like you're saying, just to put it on the calendar or set a timer in your day every day and do whatever you can, because we all know that we have limitations from time to time in our health. And so, you know, you can talk to a physical therapist, you can talk to an occupational therapist. There's a lot of resources as well through your hospital for people to get in touch with if you don't know how to get into working out. This is something new for me as a elder CFer, I guess I should say now, is my cystic fibrosis center has a physical therapist as part of their team. I didn't know that was new for me. 

And so as part of, you know, the last few years, I've been starting to, like, subtly gradually get into fitness, but it's been more outdoorsy because I've been in the van. So it's like naturally, just hiking or naturally snorkeling or doing something that was more like fun and sport versus working out. And it was just something I did with my friends and my husband was very easy. 

And now that I'm more stable and living in an apartment in city, I have to figure out, how do I work out. It's been like 20 years since I've actually gone to the gym and actually lifted weights and actually done all these things. So what can my body do? Because I do have a lot of chronic pain associated with transplant and surgeries, and if I do push myself too hard, I immediately am done for like a week. 

So I have to find that balance. And I reached out to my CF clinic and they put me in touch with the physical therapist, and she actually sent me, I mean, videos and an app that I could join so that she could send me different exercises to do and I could check them off when I was finished. 

So there's resources out there. And as technology and medicine and science is growing, there's so many things that maybe we just don't know about, but if we ask, we will find those resources. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
Yeah, that's a great point. You know, and I take advantage of resources. You know, that's great that you have access to a physical therapist that specializes in treating cystic fibrosis patients. 

Not everybody might have that, and not everybody might have a personal trainer that they know. Not everybody might have access to a gem or something like that. But there still are resources out there. 

You know, one thing that just comes to mind, one thing that everybody has access to now is ChatGPT take advantage of AI. Okay, I mean, hop on ChatGPT and use a prompt that you want ChatGPT to think like a personal trainer. And then ask ChatGPT to create a workout program for you. Say and identify in your prompt, identify what your specific goals are, and then ask ChatGPT come up with a workout for me three days a week, four days a week with specific exercises that I can do to help achieve this goal, that goal, or that goal. And you'll. 

**Caleigh (Host):**
That's a great point. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
You'll be amazed what ChatGPT will come up with. And so, you know, and ChatGPT will instantly tell you some great exercises that you can do. You can also specify, like, exercises that I can do with dumbbells or barbells exercises, calisthenic exercises that I can just do with my own body weight, cardiovascular exercises, whatever. You can even specify, like, the type of workout that you want to do, and ChatGPT will come up with some great exercises for you to follow the. 

Now, once ChatGPT, you know, creates this workout program for you, if there are exercises that you don't know, you have no idea what Chat GPT is talking about. Like, like you have. You've never heard of, and you have no idea what a Romanian deadlift Looks like then you hop on Google and just type it out, and then you'll get 10 different YouTube videos on how to do a Romanian deadlift, you know, and so you can Google different exercises that way. 

And for anyone out there listening as well, feel free to reach out to me. I've been working out, you know, since my teenage years. I know just about every single exercise out there. I make myself available to anybody. 

**Caleigh (Host):**
Do you have any medals or moments that have meant more to you than others, or that have a specific memory for you that is just very important, maybe when recognizing your donor or recognizing the efforts that your medical team has put in to keep you alive? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
Yeah, that's a great question. You know, and, you know, it may seem sound a little cliche to say this, but every medal that I have won, it just has so much meaning and significance to me in many different ways. 

One time I took one of the medals that I won and I took it to my. To my team at Stanford. I put it in a little framed. A little like, picture frame and made it all. Made it a little nice display, and I gave it to them as a gift to say thank you. Is that this. This medal is for you. You know, this was a medal that I won in the. It was. I remember it was a medal that I won in a 4x100 relay at track and field. And I was like, I'm giving you this medal because I recognize the importance of having a great team behind you, helping you out. You know, you can't win the 4x100 relay by yourself. It's a race where you specifically cross that baton across the finish line by exchanging hands between four people. And it takes a team to win that race. And you guys, my team at Stanford, they've been an amazing team that really has helped me keep going so I can keep competing. And so I recognize that. And it's not just one person. It's not just two people. It's many people on that team that work and care for me as a patient. 

So I gave them that as a gift to recognize their teamwork. That being said, you know, like I said every medal, but there are a couple that stand out. 

Number one, when I won the silver medal in the javelin at the World transplant games in 17, that was. I remember that was a tremendous feeling. Every. Everything aside, just because the javelin was kind of a newer sport that I taught myself, I never threw the javelin when I was a kid. I was something that I just kind of wanted to learn on my own. And so back home here in California, I had hired a coach to teach me, and I had just watched YouTube videos to try and learn it myself and learn the technique, you know, went out and. And got a couple of javelins myself, and I would just go out and. And throw it around and try to figure things out and. And just tried to learn the sport. 

And then I went to Spain, and in the 2017 Games in Malaga, Spain, I ended up winning the silver medal. It was just such a feeling of accomplishment, to be honest. And so I was just very proud of that. 

And then fast forward to last year at the 2024 Transplant Games of America, competing for Team CalNev in 3 on 3 basketball. Team CalNev won a gold medal in basketball. That was the first time that we've ever won a medal in basketball at all. And. And it happened to be a gold medal. And so we had so much fun. 

That team, all the guys that were on that team competing alongside with me, I just, you know, again, I just tip my hat out of respect to all those guys. And it was a fun basketball tournament. A great group of guys to compete with and have as teammates. And it was such a great sense of accomplishment to bring home the gold medal in basketball for Team CalNev in Birmingham with the guys that I competed with. So. So those were. Those were two medals in particular that had some pretty special meaning behind them.

**Caleigh (Host):**

I'm sure, also, your healthcare team receiving that medal was a pretty special moment for them as well, because they do work so hard, and they do put in so much effort for us every single day. 

I mean, they're not. Who said this? I think Emily said this from Emily's entourage the other day, where it's like, “we're born into cystic fibrosis, but they choose cystic fibrosis and transplant”. They're choosing it to dedicate their life to it. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
So that's an excellent point. I love that. Yeah. 

**Caleigh (Host):**
Can you walk us through how the games are structured in terms of age groups and organ types? You mentioned this. We're division one, Division two, Division three. 

Can you just explain to listeners maybe what those divisions are? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
Absolutely. Yeah. So the Games are structured in a way that makes it very fair in terms of competition. 

So division one would be all organ. Solid organ recipients. So basically double lung recipients, heart, kidney, liver, pancreas, intestine. If you've received a solid organ transplant, then you would be a Division 1 athlete. 

Division 2 would be tissue recipients. So folks who have received a cornea transplant or A bone marrow transplant, anything that would be considered a tissue transplant, you would be considered Division 2. 

And then what I also love is they have Division 3, which is for living donors. You know, they. We like to recognize living donors as well and just really praise them. And the amazing. The amazing thing that they have done by being a living donor. And so they also have the ability to compete amongst themselves as living donors as well. So if you're a living donor and you donated a. Your liver, a kidney, and you want to compete, you can also compete, and you would be a Division 3 athlete. 

And so on top of that, the way that everything is structured is you do compete by your age group. Basically, you have, like, if you are, I think, 18 to 29 years old, that's one age group. Then there's 30 to 39, 40 to 49, 50 to 59 and so forth, all the way up to, I believe, 80. 80 plus, I think, is the oldest category, if I remember correctly. And then there's also a category for children, I think, under the age of 12, I think, is the earliest. There may be. There may be one younger than that, too. I don't remember. But, yeah, essentially it's broken down by age and then also by gender, you know, male versus male and female. 

So, yeah, it's great. It's fun, it's inspiring, and I just really encourage people to get involved. 

**Caleigh (Host):**
What would you say to any donor families who may be listening to this episode right now? 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
First and foremost, thank you. You know, that's the biggest thing. 

You know, donors, everyone. It's very often that people talk about the donor and what a great thing it is, you know, what a selfless decision the donors have made. And that's all so true, and I don't want to take away anything from that. 

But the donor families also need to be recognized. You know, like you mentioned earlier in that one example, you know, oftentimes it's the donor family that makes the ultimate decision and approves of the organ donation. And so they're also heavily involved. I often will say, express my gratitude not only for my donor, but for my donor's family. My heart goes out to them. I know that they endure a tremendous tragedy through the loss of their loved one. 
And I know it's probably a very difficult decision in many cases for them to come to terms with having organs donated.

But their loss gives somebody else the opportunity to continue living and thriving. And so for them, and I'm sensitive to the struggle and the hardship that can bring for those families. And so again, the donor families that choose that say, yes, you can donate my loved ones organs. I just say thank you. You know, I can't say it enough and I just, I know it's an incredible, it's difficult, but I just say thank you to them for the decision they make and allowing someone else to live on. 

One person who donates their organs can save up to eight lives through solid organ donation. And they can probably save or not save, but they can affect the quality of life positively in probably 40 or more people through tissue donation. So one person can affect a lot of people through the miracle of organ donation and tissue donation, which is incredible. And so, and again, the families have a big part in that. And so just thank you to them. Thank you to everybody that's a donor. 

If you have any questions at all about becoming an organ donor, there's many different ways you can do, you can register to be an organ [donor@donatelife.org](mailto:donor@donatelife.org) there's also links to that on the Transplant Games of America website. 

And so if you are curious about it, if you have questions about it, again, I just strongly encourage you to reach out and ask someone or visit those websites to check it out. 

**Caleigh (Host):**
Well, thank you so much for joining the podcast. I think hearing about your life experience with transplant life, living post transplant and the transplant games is really eye opening and inspiring and informative too as to what their games are all about, how it feels to participate in them and what it's like, you know, to train as a post transplant patient and also to honor your donor. Because I think at the end of the day, that is what everyone's doing out there competing is honoring that gift. And as you mentioned too, you know, our gratitude is not just for the donor, but it's with the donor families and the loved ones. Because in my mind, it's a gift from everybody. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist):**
Absolutely. Yeah. I cannot agree more. That's very well said. 

**Caleigh (Host):**
Well, I hope you have a good rest of your day. And thank you for joining the podcast. 

**Matt De Fina (CF Person, Transplant Games of America & World Transplant Games Medalist)**
Thank you, Caleigh, it's been great. Thank you so much for having me. And I hope that people find this to be very informative and also inspiring. 

And so again, if there's anyone out there that is even remotely interested in the Transplant Games or working out or any of the things that we've talked about, they can find me on social media. They're welcome to get my contact information through you. And I happily make myself available to help out anybody and I just hope that people find this to be very inspiring. 

**Caleigh (Host):**
To everyone listening. Thank you for being part of our Fight to Breathe. This podcast exists because our stories matter. Whether you're navigating cystic fibrosis transplant life or somewhere in between, you're not alone. 

We believe that every story has the power to inspire change. Share yours with us on social media at Fight2Breathe or email me directly at Caleigh@fight2breathe.org. Let's keep advocating, supporting, and speaking up until next time. Thank you for being part of this community. We breathe better together. 

And a heartfelt thank you to the Cystic Fibrosis Foundation's Impact Grant for supporting this podcast.