The Kidney Collective: "The Hardest Punch I Ever Took"

Marc Coronel: One of the easiest things that I've heard a lot is don't give up, but it's deeper than that. It's emotionally understanding your journey and and and really sitting with it.

LaVarne Burton: Hello, I'm LaVarne Burton.

Tamara Ruggiero: I'm Tamara Ruggiero.

Mike Spigler: And I'm Mike Spigler.

LaVarne Burton: Welcome to season two of the American Kidney Fund's Podcast, The Kidney Collective, which gives an intimate voice to the many facets of living with kidney disease.

Tamara Ruggiero: Our theme for this season is Rare Voices, Relatable Stories.

Mike Spigler: Over the next few months, we'll be talking about rare kidney diseases and explore the shared experiences that connect the entire kidney community.

LaVarne Burton: Join us for these candid conversations that offer both information and inspiration.

Mike Spigler: Welcome everyone. Joining us today is Marc Coronel. He is the founder of Lifestyle Athletics, a former amateur boxer, a TEDx speaker, an AKF Ambassador, and a Kidney Health Coach. Marc is also living with a kidney transplant and a rare form of kidney disease called focal segmental glomerulosclerosis or FSGS. Thanks for joining us, Marc.

Marc Coronel: Thank you, Mike. I appreciate it.

Mike Spigler: So tell me a little bit about being an amateur boxer because that is certainly something I never had the confidence to do. I think I got in maybe one fight in my entire life in sixth grade. So, you know, how did that come about? And tell me about your experience there.

Marc Coronel: It's really interesting. I was actually given an opportunity through my high school program, and they wanted to do this program for inner city kids. And I was the first one to raise my hand and said, I'm willing to do it and I'm ready to go. And the interesting thing about it was that was my curricular activity. That was my PE class, and I was able to get graded from that as well. So the discipline factor of of boxing was amazing. Learning how to run every morning at six in the morning and then eat breakfast and then go right into school was pretty amazing.

Mike Spigler: Well, I know that you have to be very careful with your weight and nutrition and everything, right? To weigh in at the right amount. So I assume a lot of that kind of discipline really has played over as you've started to deal with managing your kidney disease as well.

Marc Coronel: 100%. I was fighting at 118 pounds, so I was very, very thin. My walk weight was about 128, and then they wanted to just bring me down 10 pounds. So there was a lot of trying to cut weight and staying on a specific diet, making drinking protein shakes, making sure that I was just athletically inclined to pursue that career in boxing for sure.

Tamara Ruggiero: Marc, I have to ask, how did you get to become a TEDx speaker?

Marc Coronel: It's really interesting because I shared my story as a kidney transplant recipient who went to social media and had 33 donors come forward to donating a kidney. That was a story that was a wow in itself, right? And they wanted to know how I did that. What I learned was through the process, they were interviewing 22 countries. I don't know the exact number, but it led down to the last nine speakers, and I made it all the way through. For me to speak on a TEDx stage where no one knew anything about health, I really had to hone in on a different type of direction when I started to share my story.

Tamara Ruggiero: Yeah, that makes a lot of sense. It's hard to sometimes translate health information for a lay audience, right?

Marc Coronel: Right, right. I mean, so it was like hypertension and glomerular disease. It was like kidney failure and high blood pressure. That was it, right? Just so that people understood based on my journey through navigating the health care system.

Tamara Ruggiero: Well, let's talk a little bit about your journey. I think it would be really interesting if you could just talk first. How did you first learn that you had kidney disease? Did you have symptoms? What prompted you to get tested? Just kind of walk us through that process.

Marc Coronel: Yeah, of course. So I was 26 on a routine physical. I went in for a doctor visit. I was covered by my father's military insurance. On my 26th birthday, it would have automatically cut off. And I went to the doctor's office. I can remember it very clearly. I was just so confident because I had been training so much getting ready to turn pro as a professional boxer. And I said, Doc, you have nothing to worry about. Look, I'm strong. I run three miles a day, I'm in the gym all the time. And at the time I was also getting ready to try joining the Los Angeles fire department. I was so confident, and then two days later, she says, Look, Marc, if I don't call you back in two days, you're perfectly fine. Go ahead and turn pro and continue to join the fire department. No worries, doc. Perfect. I appreciate that. So two days later, I get a call. She says, Marc, some labs are a bit out of whack, and I want you to come back and I want to do a biopsy and introduce you to a nephrologist. Are you sure? Is this correct? She was like, let's just make sure, because sometimes data can be off. Sure enough, I came back two days later. There was a biopsy, and I was diagnosed with a rare kidney disease called focal segmental glomerulosclerosis, which was very, very shocking to me because it was the hardest punch I ever took, right? Emotionally, mentally, even physically, just physically draining. And I didn't know that kidney disease was silent, right? Just being in the kidney world now, I didn't realize that kidney disease is silent until it isn't.

Mike Spigler: That should be the title of your biography someday, I think, right? The hardest punch I ever took. That's a great way of framing it.

Marc Coronel: Oh, thank you so much.

Tamara Ruggiero: Did anybody in your family have kidney disease, or did this just come out of the blue?

Marc Coronel: It just came out of the blue. It literally just came out of the blue, and I, 'til this day, I don't know who to blame, right? Was it my protein shake? Was it my training? Was it getting hit in the kidneys? What were the possible causes of it, right? So I didn't know who to blame. It was idiopathic, and that was the diagnosis.

Mike Spigler: And had you even, when when the word biopsy comes up, right? I mean, did they explain that to you? I mean, that can be really a scary word for people. A lot of people associate that with cancer and things like that. I mean, what were your thoughts going in saying, gosh, I need to have a biopsy now?

Marc Coronel: Well, I obviously asked so many questions on what it was because I wasn't really in tune with the whole medical jargon that that is thrown around in health care, right? So I had to learn really, really quick. I had to learn what was a biopsy, and you're right, it was associated with cancer. But when I went in, it was very, very informative. The problem here was, and here's based on what I've learned is the average diagnosis for something like a rare kidney disease is like five to seven years. I got really lucky because they were able to identify it from my PCP, and I was able to go in through a biopsy. Within 24 hours, a doctor comes in and said, you're diagnosed with the rare kidney disease, FSGS essentially.

Mike Spigler: It's really amazing. Well, the the only good thing about that story, I will say, is it sounds like you at least had a really good doctor that took this seriously, got you tested, and got you the biopsy and the secondary testing pretty quickly. It can be really a long time for people out there listening to get you know some of those secondary tests done, see a nephrologist. Was it, it just sounds like it was not very much of a long wait for you.

Marc Coronel: It wasn't. And that's why for me now, advocating for your health is so important, right? Just because we were already on top of it. And then even when I was introduced to a nephrologist, the interesting thing about that is I wanted to get a second, third, fourth, fifth opinion. Just because I just wanted to make sure for myself that this was correct, and everything came back exactly the same.

Tamara Ruggiero: And then, Marc, when did genetic testing come into play? When did you make the decision to get genetic testing?

Marc Coronel: Wanting answers beyond idiopathic. You know, what were the family implications, whether it was insurance discrimination or, you know, discrimination concerns. I also feared what it might reveal, right? Genetic testing wasn't about blame, it was about truth, right? I wanted to know based on the genetic testing of 365 markers where this came from. And and it was very, very straight. It was a very, very straight shot. Everything came back negative that I was just like, at least I know the truth and I face it head on.

Mike Spigler: Did you meet with a genetic counselor after the test as well, or was it just kind of a report that was sent to you?

Marc Coronel: Right. So I did genetic testing, and if everything came back negative, what else should I really ask for at that point? I'm already diagnosed with a rare kidney disease. I've been on dialysis and gone through the transplant journey. So for me to just ask again with just information overload, that I'm just trying to live it day by day, one at a time with with a rare kidney disease.

Mike Spigler: Yeah. But what you bring up in your thought process is something that I think is really undervalued by the medical community in that humanistic kind of feeling of knowing what happened to me. But also obviously the family implications you mentioned as well. But there's something about just knowing. Like, I now understand what happened with my condition and my health. And it's just something about it, you know, really kind of enlightening and encouraging to know that, even though you're dealing with this really difficult disease.

Marc Coronel: Well, here's the thing is that I went through the five stages of grief through this whole process, right? We're talking about 15 years. The denial was the beginning days, right? I was denial. Then it became the angering days, right? I was angry, why did this happen to me? So D, A, B, bargaining. I wanted to bargain my life, and that's why I went to several different second, third, fourth opinions. Are you sure? Depression, right? You'll go through that stage of why and and it reverts back as a whole, as a whole circle. And at what point do you go into the acceptance stage of your chronic illness? And I had to identify that very, very quickly. And I think reverting back to the beginning question of how did boxing play a role, my running became my doctor visits, my protein shake became my medication, my training became punching verbally to doctors where we can find a common ground, not about winning. And I don't care if I get a draw, but at least I walk out there winning, learning information about myself and my disease because again, I was an amateur. I wanted to learn more to become a professional advocate for myself.

Tamara Ruggiero: Marc, what would you say to somebody who right now is in the middle of the process, you know, in the middle of the five stages of grief, of coming to terms with having kidney disease?

Marc Coronel: One of the easiest things that I've heard a lot is don't give up, but it's deeper than that. It's emotionally understanding your journey and and really sitting with it. They say it's the light, not the darkness, that most frightens us. And I think once you get to the light quicker, you'll be able to adapt and accept the situation that you're going through by being more clear-headed when you go into the hospital instead of always frantic of is something wrong, is something not. One thing that boxing did show me was my opponent will always be me first in the mirror, then anybody else. What's the roadmap to fighting yourself in the mirror? And that's something that I would share with patients is we're now diagnosed with this disease. It's not, oh ok it's happening, but what can you do to make it ease off of your emotional discomfort to saying, look, I gotta start making changes and I gotta start making changes now. Because every action, there's a reaction, to every question, there's a consequence to that. I don't want to say, look, dive in so deep because you can get very, very wrapped up in a lot of the medical conversations that you're having, but really, really take it step by step. Take it step by step.

Mike Spigler: Well, Marc, your experiences and I think being so transparent and vulnerable with like all those things that you were thinking about are really going to resonate with a lot of people listening to this and that are probably going through some of these things, same feelings and thoughts and maybe not sharing them. And I think it'll be kind of a defining moment for them to hear you talk about this. What motivates you to share your story in this way? I know you went and came to Capitol Hill and and helped advocate for some issues that we care about here with the American Kidney Fund. What why do you feel it's important to do that?

Marc Coronel: I advocate because silence almost cost me everything. It almost cost me my life. It almost cost me being a brother, me being a husband, me being everything in my life. I believe patients deserve plain language. I couldn't understand any of that stuff. We talk about organ shortages, we talk about rare disease researches. Lived experience gives credibility. And that's why advocating for me is so powerful. If you don't speak, someone else goes unheard of.

Mike Spigler: And your family, I'm sure, must have played a huge role in kind of picking you up when all this was happening as well.

Marc Coronel: Yes, but they didn't understand what it's like to fight a chronic illness or a disease. They can only be compassionate to saying, wow, my brother, my son, my cousin is going through a hard time. But if you don't know what it feels like internally, like other patients can look at me and said, How are you doing today, Marc? And they know exactly just by a way of a look, maybe by my eyes, they can see very, very clearly through my soul of how much pain I go through. And that pain exudes through advocacy, right? I've learned that there's three different types of advocacy when you do vocalize your your efforts. It's a patient advocate who shares the hope, an Ambassador who shares the hope with like you guys, with the with the Kidney Health Coach, an Ambassador, and then you have someone who's a credible messenger. This is what I've dealt with. These are the navigations that I've been able to learn through the process of navigating the health care system to not just advocate hope because hope didn't pay my bills and I was I was hurting for that.

Tamara Ruggiero: And you're not only dealing with kidney disease, but a rare kidney disease, FSGS. And so that was kind of layered on top of this entire experience you're having, dealing with the rare disease. Have you connected with other people in the FSGS community? And and you know, if so, what has that meant to you and and what type of support and connections have you made in those conversations?

Marc Coronel: It's one of the most important things that I realize that community actually means common in unity. When we talk about finding a community that understands what you go through, the hardship, if there's ever any clinical trials, what type of treatments that they're on. And sharing the experience of how many medications I take, right? I and I share it very, very openly. I take 15 medications a day, 105 a week, 420 a month, 5,040 pills a year, just to stay alive so that my rare disease doesn't reoccur. There's a 50% chance that, especially with the rare kidney disease, while I was going through the transplant stages, that this can reoccur. And I'm just being honest with you, we're gonna hold you for observation and just know that that can be a reoccurrence once this transplant happens.

Tamara Ruggiero: And I think that is such a challenging part of living with FSGS post-transplant, knowing it could re-recur.

Marc Coronel: 100%. 100%. That's where I actually got scared that kidney disease actually really knocked me out. I always revert back, and you know, this is just who I am. I always revert back to my boxing discipline, right? Because boxing is a very, very strenuous discipline that that requires a lot of mental strength that I had to reevaluate and how I were to put that into the kidney world. And it works very with each other for sure.

Mike Spigler: You know, Tamara just mentioned your transplant and obviously the fear that's gotta always be there of losing that great gift that you have. Can you talk a little bit about the transplant process and what that looked like for you and your journey?

Marc Coronel Of course. So I was on dialysis for 2,250 hours. 2,000 of those hours I wasn't able to urinate. So we talk about 2,000 hours of not being able to urinate as well as trying to advocate to try getting a living kidney donor. My blood type is O, so the average wait time is eight to 10 years. What I also didn't realize was I was able to multi-list and I listed at five different transplant centers in hopes that if a living kidney donor doesn't work, a deceased donor would. What comes with the details of that? Number one, if I do get evaluated at another transplant center, there are things to consider: housing, food, and how I'm gonna get around, as well as who's gonna be my caregiver. And I needed to make sure that I considered all of those specific things, right? Because number one, I had to get a flight on standby for any time I would get a call at any hour of the day, having to be at another transplant center within 24 hours. So having to know that itself was really, really hard because I had to keep my phone on, not on silent, which meant that my significant other would hear every beep or notification that came on, right? But again, that journey was really intense even for her. And I want to get back to her because she also had a 24-hour, she had a 24-hour bag because sometimes she'd have to go to work right after going through a doctor visit. What happens while I was going through the kidney transplant stage was I would drink water and sometimes I would eat foods that didn't know I had salt in it. And that edema wouldn't go to my lower extremities, it would go to my lungs, so I couldn't breathe at night. So I had a table on my on the side to sleep on like this, just so I can breathe that day.

Tamara Ruggiero: Marc, you paint such a vivid picture of what it is like to live with this. If you thinking about just the general public, what do you wish they understood about living with kidney disease?

Marc Coronel: It's hard enough to be sick, it's even harder to be rare. When we talk about the journey of a kidney patient, we talk about the hardship that no one sees, the multiple doctor visits, the trying to build a team, trying to find community, trying to find people who understand the journey. If you really want to ask, think about sitting on a chair, and this is why I revert back to my dialysis days where I wasn't able to urinate. Imagine sitting at on your toilet without being able to move for three hours. Now imagine eating Skittles. These medications that I take, I call them Skittles because I took 15 a day. That's one of those little packets that they give during Halloween, right? Imagine just taking one of those small little packets and just eating that. Imagine having to go out one night with your buddies and friends to feel that hangover that I felt every other day because they depleted my liquid that was in my body. They had to make sure that I didn't have a lot of liquids for my next treatment options, that they had to dehydrate my body.

Tamara Ruggiero: Yeah, I think putting it in those relatable terms that people, you know, experiences that people have had, like I've had a hangover, makes a big difference to helping people at least start to grasp some of what you've been through.

Marc Coronel: 100%. And I think even if you were to run a 500-mile race, you still wouldn't be able to adapt to how the feeling of a patient going through dialysis feels like. There's cramps involved, there's there's headaches, there's dizziness, right? I think the cramps are are are really, really intense. I've never had cramps like that, even while I was competing to turn pro as a professional boxer. I mean, I see my muscles wave as if it was a wave going through the ocean. Think about the most hardest cramp you've ever felt, and then trying to run a marathon at the same time. That's how tired you are.

Tamara Ruggiero: Many of our listeners are are in the kidney community and are going through dialysis. But I think what you're sharing is so important for them to share with other people they know, their family members and friends, they can get a uh maybe a better understanding of how it feels.

Marc Coronel: Right. But I also think that when I did that myself with community in my own family, they don't understand. So it's always about finding community, learning about the Kidney Health Coach because it gives them a point zero zero zero one of what the day in the life is like of a patient based on look, these are the signs and symptoms that I have that maybe we can articulate. But when you come into community, when you come into the people who understand, that's where the real magic happens.

Mike Spigler: Marc, we're so thankful for you being an advocate, for you being a Kidney Health Coach. And we'll drop in the show notes a link to that if anyone else wants to do it. It's a free opportunity to really make a difference in your in your community. And we thank you for all the work you do there. Maybe one last question before we wrap up and and and talk about some some other resources. What do you hope the future of FSGS uh treatment looks like? What are your hopes for the future?

Marc Coronel: We don't need better treatments, we need earlier answers, right? Targeted therapies beyond steroids, early genetic screenings, faster diagnosis. The average wait time is five to seven years just to get diagnosed with a rare kidney disease, more clinical trials, inclusive of rare patients. Progress, not perfection, policy and research funding alignment, prevention of progress, not just transplant rescues. Just because I've gone through the full journey and the full scope of a kidney patient, there are some things that I wish I would have been involved in earlier rather than later in finding out on the back end.

Mike Spigler: Marc, this has been incredibly hopeful and inspiring for the people that are listening to this podcast. I want to really thank you for your time. Is there anything that that you wanted to talk about that we didn't talk about? I mean, I know you've got you've got a whole company that you started, Lifestyle Athletics. You want to tell us a little bit about that before we leave?

Marc Coronel: Yeah, so Lifestyle Athletics was a company that was built on being in athletics. I created programs in the unified school district, detention centers. And it's a mnemonic called Lifestyle, which is leadership, integrity, foundation, effort, support, time, use, love, and environment. And what I did was really just bring that into the kidney world of finding what leadership meant, what integrity meant, what foundation means, and really just honing in on my personal journey. It's a community business, right? And essentially I just found it within the kidney space. There was no difference of saying, hey, we believe in something strong and let's do that.

Mike Spigler: Well, Marc, congratulations on persevering and thank you for being such a great role model to other people that are dealing with the things that you're dealing with. So thank you very much for being here.

Marc Coronel: Of course, thank you.

Tamara Ruggiero: Thank you so much, Marc. Thank you for being here with us today. It's been a great conversation, and I can't wait to bring it to our listeners.

To find out more about the topics we discussed in this episode, or to access resources to learn more about kidney disease, go to the episode show notes on your podcast listening platform or go to kidney fun.org slash podcast. And if you haven't already, be sure to subscribe or follow the kidney collective wherever you listen to podcasts, and leave us a like or review to help us reach more members of the kidney community.

Mike Spigler: You can also follow AKF on all major social media platforms, including Facebook, Instagram, TikTok, BlueSky, LinkedIn, YouTube, Twitter/X, or whatever comes next. Join us next time. Remember that even in the toughest moments, there's hope ahead, and The Kidney Collective and AKF are here for you now.