Caitlin Whyte (Host): This is In Their Words, brought to you by the UPMC Pinnacle Foundation and UPMC in Central PA. In honor of Donate Life Month, this episode shares a powerful story of connection, compassion, and second chances.

Candice S. Coleman, Workplace Culture and Community Engagement Consultant at UPMC Central PA reflects on her decision to become a living kidney donor to save a family member's life. Riley Brubaker, a kidney transplant recipient and Campaign Associate for the Great Social Experiment shares her journey through kidney failure, dialysis, transplant and recovery. And David Krissman, creator of The Great Social Experiment, brings these stories together through a mission focused on changing outcomes for patients in need. Together, their experiences reveal the life-changing impact of organ donation and the human connections that make it possible. Listen in as we explore how one decision can save a life and how those lives in turn can inspire something greater.

Candice Coleman: So, my name is Candice Coleman. I am the Workplace Culture and Community Engagement consultant for UPMC, Central Pennsylvania. And I have been with the organization a little over three years now. I'm really focusing on inclusion and belonging and also with our community engagement and outreach.

Riley Brubaker: My name is Riley Brubaker. I am the Campaign Associate for The Great Social Experiment, and I work with the pilot program, Another Chance.

David Krissman: I'm the creator of The Great Social Experiment, and we are doing a pilot program to help people who are in urgent need of a kidney transplant find a living donor.

Candice Coleman: So, my story began back in—I think, it was about 2008, maybe 2007, 2008. My brother-in-law at the time had fell sick. Well, we actually thought he had the flu. We went to the hospital to get him checked out, and come to find out his blood pressure was something astronomically high, like it was like 250/196 or something like that. And they didn't know why or what was going on, and come to find out he was in kidney failure. He was fairly young, early 20s when this happened. He was one who never smoked, didn't drink. He did all the right things. He was active. He played on the basketball team in high school. He currently actually helps the coach now at Trinity. And at the time when it happened and they said he was in kidney failure, they were saying like he basically only had 10% function at the time.

He had to immediately go on dialysis, and then it was the search of he would need a kidney. And so, initially, myself, and at the time my boyfriend—we weren't even married, we're no longer together—but it was my, at the time, boyfriend, we both stepped up, and said that we wanted to be tested. We both got tested. I was initially told in the beginning that I was not a match and that, of course, his brother was a match. So, they went on to—we thought—do the testing so he can then, you know, have this procedure. And next thing we know, it was a year had went by and nothing much had been done. And then come to find out his brother was not able or was not qualified to donate a kidney, because he also had high blood pressure and he had a high BMI.

So when he was in dialysis, he became very depressed. He felt like, you know, there was no other chance for him. He was seeing other individuals come back and had their transplant and how they were living their lives and they were coming back and telling their stories and saying thank you to all the staff at the transplant clinic. And he called on the phone one day—well, I skipped a part, actually. In between this time, I actually had a child. So, my middle son was six months old at the time. And he had called on the phone and he was sad. He was at the dialysis center and he was saying how he didn't think he was going to make it.

And so, I was sitting there with my, at the time, mother-in-law. And I said, "You know what? I want to be tested again." And she's looking at me like I'm crazy. And they're like, "What do you mean?" So, she calls the hospital and it was a new nurse that was actually taking over his case. And she called and told her and she said, "Hey, Candice wants to be tested again." And the nurse was like, "Well, I don't understand why she wants to be tested again. She's already a match." And so, we were all confused, but we were also ecstatic and happy. Like, we were happy, "Wait a minute. I'm a match?" And then, because I had given birth, a lot of the testing that was required was already done. So, it was a very quick process. I would say it may have been two weeks later, we got the phone call and was like, "Hey, you ready? We're going in on this day." I was like, "Okay, let's do it." I didn't really have time to think about how big of a thing this was that I was doing. I didn't want to see him pass away. And I know he had so much life in him and so many things to do. And I was just like, "Whatever it takes, I'll do it."

And I went through the process. It was fairly easy. I only had to take off, I think, two weeks for work at that time. At that time, I was doing clinical bedside. So, I was able to go back to work in two weeks and just to see that he was able to then live more life again. He actually ended up having to get a second transplant in 2023 because he had contracted COVID, which the kidney then was no longer working. And he was very lucky to then get an anonymous donor from someone in Texas. To this day, he still doesn't know who the person is, but it was an anonymous living kidney donor in Texas that he was able to get a kidney from. And he is living his best life and still able because of the kindness of that person's heart of being able to be a living donor and donate their kidney. That's how I connected with David.

So, one of my sororities, I'm part of a sorority called Alpha Kappa Alpha Sorority Incorporated. And one of my chorts, her husband is currently in the process of looking for a living kidney donor as well. And when I heard his story and it just took me back and it's like one of those things, it's like, "Dang, I wish I had more than one kidney to give," you know? So, it was like, "What else can I do?" And so, when I heard about David and The Great Social Experiment, I was like, this is just such an amazing thing that we need to, one, highlight so we can help find Gerald a kidney, and then, two, for all the other individuals out there, just to get the information out for people to know. So, that's how we ended up connecting.

David Krissman: So, the reason why I started talking to Candice is because we are working to help her sorority sister's husband to try to find a kidney transplant. And the reason how this kind of all came to be, I mean, it's kind of a long story. But essentially, I created a podcast called The Great Social Experiment. It's an investigative documentary series, and it looks at primarily access to kidney transplant. And I wanted to do something to help kidney patients afterwards. And I realized that there was this huge gap in not necessarily the care, but the help that we're giving to kidney patients to stay alive while they wait.

And if you go to a transplant center and you need a kidney transplant, the first thing that they will do is they'll say, "Hey, do you have a living donor?" Living donor kidneys allow you to bypass the waitlist. Everybody else who's waiting is waiting for somebody else to die. As kind of morbid as that sounds, it's true. But if you have someone who's willing to give you the gift of life safely, there's no reason for you to wait.

And in Pennsylvania, the wait for a kidney transplant is about five to seven years. But the average life expectancy of somebody on dialysis in our country is four to five years. And even if you make it to getting a deceased donor, all those years on dialysis take a huge toll on your body. And so, it's super advantageous to get transplanted as soon as possible to bypass that wait. And living donor kidneys tend to last up to twice as long as those from deceased donors.

The problem is if you don't have somebody who is willing to donate a kidney, finding a living kidney donor can be incredibly difficult. And this is the one thing that the hospital can't be a one-stop shop on. It's the one thing that they can't do alone. They need that organ. And the only way to get that organ—and this has been this way for decades—is to get your story out there to convey your need. And that's really how Candice—I mean, you are close with that person, but I mean, a lot of people who need a kidney don't even talk about it with their own family.

And so, you go back decades and decades and decades, people were writing into their city newspaper about their plight, "Can you help me share my need?" And they still do that today. The issue is that, as I said, it can be incredibly difficult to do this when you're chronically sick, and you're just trying to make it to the next day. And a lot of people don't have that skillset to get your story out there. So as somebody who comes from the world of media and storytelling, I thought, "Well, what if we just do it for them, with them as a kind of partner?" But what if we bring that organization and skillset to them?

And so, that's what we're doing, and we're running campaigns for a cohort of patients at three transplant centers. UPMC is one of them. Jefferson and Temple are the other two. And the reason why we wanted to talk to, well, really anybody who's willing to listen is, because the way that we typically help these patients get their story—I mean, we could produce the best videos and the best graphics. But if it's not shared, then it doesn't matter, then we can't get the story out.

And so, typically, what we do is we rely on the family and friends of that patient to distribute it. So, we hold events, we meet with the family and friends, we educate them. And we basically say, "Hey, if you want, in this case, it would be Gerald to be around and doing well in five years, then we as a community need to work hard, and we need to work together to get Gerald's story out there.

And so, we'll produce the media and you guys share it. And this works often, but it doesn't work for every patient because not every patient has a strong or large community. And so, what we are hoping to do is recruit as many people who don't know these patients to help share their stories. And this is a program that we created called the Angel Advocate Program. And the Angel Advocate Program, it's the first crowd-sharing program in the country. And what it does is, if you sign up, we will put you on the campaign of an individual whose campaign needs more reach.

So, one of the beauties of this program is that we know how these campaigns are going in real time. We know how many people have stepped forward, and have gone through all the milestones of the evaluation process. And so if we see that there's a campaign that's struggling and we have multiple people that are willing to share anybody's story, they sign up, we'll put them on the email list of that one specific patient. And they'll start receiving all that campaign media to share.

Candice Coleman: I definitely think it was partially, I would say, probably how I was raised. Because honestly when it happened and when they came to us and told us, like, there wasn't even room for him to even ask me and say, "Hey, can you get tested?" It was just like, "No, this is something I'm going to do."

And I think it also helped—at the time. I said I worked bedside as a certified nursing assistant. So, I was able to see, you know, the effects of kidney failure, and things like that. And having an understanding of having that medical background, I also believe helped as well. But really, I didn't even give myself time to even think about, is this something I want to do? Because it was just immediately like, "This needs to be done. I want to do this," to the point that I did not even tell my immediate family, like my mother. I didn't tell anyone until a week before, until I got the date. I was like, "Okay, I have to let them know." Just because if something was to happen, they would need to know. And my family was so mad. They were so mad at me. They were like, "Why are you doing this?" And I was like, "I have to do this. This is something I had do. I don't want to see him die." But once it was done, they were just like, "This is amazing. Like, I don't know how you were able to do this." But I was like, it really just was just in me. There was no turning back. There was never a point of, "Oh my goodness, should I step back? Should I not do this? Should I rethink this?" That never crossed my mind.

David Krissman: It's funny how the people that instill the values in you have the biggest issue. I think that a lot of this is because the biggest hesitation that donors have is fear. And, you know, who could blame them? It's a surgery. But you go through an insane amount of testing to make sure that, A, you'll be okay with the surgery and, B, that you're not going to really have any problems in the future. And when I say any problems, I mean, literally any problems. We know donors that are incredible athletes. I know two donors that ran 12 marathons in one year; each of them, obviously, with one kidney. They are no different today than they used to be.

Candice Coleman: And I think one thing too, people don't realize, like you have individuals who are born with one kidney and don't even know it, that are walking around right now who may have never had to have a CAT scan or anything, and they don't even know, and they're living perfectly normal lives. So, that's the other piece that people may not realize or understand or thinking, "Okay, if I'm donating a kidney..." Like, they're in fear of, "Okay, what's going to happen to me?" or "If I need a kidney..." And that was the one thing that they did tell me. They said, "Oh, well if you need a kidney, then you also are placed on a special list that kind of like bumps you up, because you did donate a kidney prior." But it just never even crossed my mind.

David Krissman: And people really don't know the plight of somebody who has kidney failure. We all hear about cancer. But kidney failure has a shorter life expectancy than most cancers. It's just that these people typically suffer and die in the shadows.

I think it would be time to give Riley the mic a little bit because she actually is a recipient Not only has she been instrumental to this program, but she has actually walked the walk and lived through this. So, let me hand it over to her.

Riley Brubaker: I don't really know how to follow that up, but I think out of all of the transplant patients, recipients, particularly that I've met, I think my experience is probably one of the better experiences you can have with kidney failure, which is saying something, I think. But I was born with kidney disease. My kidneys were failing when I was born. And I just had an amazing care team that was able to revive them when I was younger. So, I lived with stage II kidney disease for most of my life, which two nephrologists, I think, is seen as normal for a lot of people.

And my kidneys started failing in my senior year of college, which was not ideal, but I was able to get on the waitlist pretty quickly. And I was put on the waitlist before my senior year started, because my function was dropping significantly. And made it through my senior year with the plans of getting a preemptive transplant two weeks after graduation. But, you know, living donation, I think it's a lot faster, a lot smoother than deceased donation, obviously. But there's still delays that can happen.

I think, for me, i was able to get through a few donors and almost all of them were accepted, and then rejected actually because of anatomical differences. So, that kind of delayed the process. And then, it came down to, I think, OR scheduling, which was not something I expected. But my transplant ended up actually being postponed until November of last year, which was about six months after it was originally scheduled. So, I did have to go on dialysis briefly. So, that's kind of my experience of going through the process, getting a transplant.

I really didn't notice symptoms of my kidney failure. I think this is an experience of a lot of kidney patients, is you don't have any symptoms until they fail. For me, even though I knew my kidneys were failing, I didn't feel it until I went into renal failure. And the first things that I noticed was actually brain fog and fatigue. If I didn't know already that my kidneys were failing, I would've assumed it was just stress from school. And that certainly didn't help. But I think that's part of the reason that kidney failure goes unnoticed until it's too late.

So, I felt quite frankly miserable. By the time I went on dialysis, I was actually very glad to go on dialysis because it was a treatment. And I had been untreated until that point. So for me, dialysis was a good change. It wasn't like I was crashing into it, like a lot of patients do. I did feel better even despite the side effects that came with it, like cramping and just headaches, still fatigue after the treatment.

So, I think, for me, dialysis was a better experience than not being treated. But it was still jarring. I think less jarring for me than it would be for somebody who didn't know that they had kidney disease until they crashed. But when you're planning for a preemptive transplant, it's kind of heartbreaking to then be told, "Oh, you have to start dialysis."

And I remember in the first few weeks that I was starting dialysis, I was convinced that I would never get off of it even though I had a surgery scheduled at that point. Because there had been already so many delays, it was kind of hard to believe that things would work out. And I think, at that point, the dialysis nurses, they were the ones who really grounded me, because they had seen so many patients. And they knew how my story would play out before I did, because they'd seen so many patients who had faced larger barriers than I did.

I think I do remember kind of describing it as like, it felt like my brain had finally been like deep cleaned. I was like, "Oh my gosh. I did not ever realize." Even when I felt my brain moving slowly and felt tired and all of this stuff, I didn't realize just how much better I felt to wake up from that transplant, even though I'm recovering from a massive surgery. Just mentally, it was like a whole different experience than what I even remembered feeling before my kidneys failed. So, that was pretty eye-opening. Because I think leading up to transplant, even though I had so many nurses telling me it's going to be so much better, it's really hard to believe them when you're on dialysis or in kidney failure.

David Krissman: So when I was about 25 years old—so I'm 44, sadly—I hold a grudge against Riley who's like 23. When I was about 25 years old, I came down with a condition that is similar to long COVID, and was basically debilitated for about a year and a half. So, I went through the healthcare system, I went through the experience of being chronically ill. And eventually, doctors had the idea of trying a medication off-label— very common, safe medication off-label—that is actually now being used for a subset of patients with long COVID. And it gave me back my life.

I lived with my parents when I was not feeling well, when I was sick. And my dad used to take me on small walks up and down the street just to get exercise. I could barely hold down a job. And I went from that to being able to jog again and go on hikes. And I went through film school. I worked in and around Hollywood for about 10 years. But I never forgot what it felt like to be chronically sick.

And I read an article in The New York Times in about 2013 that talked about transplant. And it fascinated me and I thought, "Okay, well, I was always a storyteller. Why don't I try to write a screenplay about this?" And so, I set out to do that. And I mean, it really started as just like an, "Oh, this could be a good story." But the more patients like Riley that you talked to, and donors like Candice, the more it becomes incredibly personal. and unlike me where they didn't know what was causing me to feel ill—still don't know—we know how to help these patients.

You know, for me, I went on the million-dollar workup. And they couldn't figure out what it was. But they were eventually able to find a medication and it was just, "Let's see if this works." Well, we know what works for patients whose kidneys have failed, and yet we're not doing enough to help them. If this is just the one thing I said, you know, in medicine where the hospital can't do anything unless they have that organ, and that requires a different skillset than what they're trained for. And so, the best thing kind of that they've come up with is to help patients to try to teach patients to share their story. When I say they, I mean transplant centers, nonprofits have programs where they'll try to teach patients, "Hey, here's how to get your story out there." And in this case, it's a lifesaving skillset.

Now, I would lump all of these efforts into trying to teach someone to fish. It's pretty much the same thing. And in most of the world, trying to teach someone to fish is a good thing. It's like, "Well, why would you go to the restaurant and buy salmon every day if you can just make it yourself." But in this case, it doesn't always pay to teach someone to fish if they can't lift a fishing pole. And that's really the issue here. They just simply can't do it themselves. And we've just been letting them to just rot on dialysis to deteriorate and often die.

When we in this country will advertise Coca-Cola and candy and probably a lot of things that are not helping people be healthy, and we advertise it to millions of people, but we're not trying to do any marketing to save lives. When most often the biggest, biggest champions of this whole thing are donors like Candice that have already gone through the process. They are the biggest champions of this. Because for most of them, from what I've seen, it becomes an incredibly positive, transformative experience in their life.

Candice Coleman: I have had so many different, I would say, close-to-home medical experiences happened around me. With my ex brother-in-law to my father passing away when I was 14 years old from a sudden cardiac arrest, so all of those experiences I feel have definitely given me a sense of, one, life is short, it's precious and that things that we think are big are not that big. And often, I tell myself, "Okay, is this something that I'm going to be upset about in five years?" and try to measure it that way, because life can just change so quickly, like in a blink of an eye.

For him, he went to the hospital thinking he had the flu and came out saying, "You have 10% kidney function. You have to go on dialysis." He was in college. This is not something that he saw coming. And I'm pretty sure he had other things that he was probably worried about before that moment. And definitely, I know Riley can speak to that as well, just on being able to look at the perspective of things and how precious life is and how short life is. And I think that's one thing that guides me just genuinely wanting to be a good person, getting up every day, having some type of purpose and something that's bigger than myself.

And that was the reason why I was just so moved when I heard of what was going on with Gerald and then hearing of the Great Social Experiment with David. I was just blown away. Like, this is something that everyone needs to hear this, because, like David said—and Riley—like, this is saving lives. It truly is.

Riley Brubaker: My experience with gratitude, especially in the kidney transplant process, in the context of kidney failure, it took a process of like genuine grief for me, I think. Even though I knew that a transplant was in my future, it was not something that I ever expected to happen at the time that it did.

When you're at college and you're planning for your future and you're career-oriented and you're surrounded by people who are also careeroriented, and for me, I was in a small program, so it was the same career that we were all trying to get into. And I think, for about the first six months of just going through the transplant process, I didn't feel grateful. I just felt angry. And I think envious and resentment, all of these kind of negative emotions, that it was really hard to feel grateful until I think I really processed that and processed like what exactly it felt like I was losing at the moment.

But I think it was about a year and a half leading up to transplant, by the time I got on dialysis and was settling into that routine, I started feeling more grateful and just reflecting on, like, even when I was frustrated, I had a great group of friends in college who were with me at my worst, even when I probably wasn't the nicest person to be around, because I was just in my head about the fact that they were going off and starting careers and I was heading towards a kidney transplant. So, I think for me, gratitude came a little bit later. And it involved a lot of processing of emotions that I just didn't want to process for a long time.

But definitely, after transplant, it's a lot easier to like look back and be, like, I have a lot of grace for myself and for the people around me and just feel that immense gratitude for kind of how everything played out. I think it taught me a lot. And it broadened my perspective a lot. And I think in some ways, it taught me who I wanted to be around, because I realized through the process it's kind of hard to be around. People can be so focused on their own lives that they don't show appreciation for other people's lives. In many ways, it was very eye-opening for me and just made my life better, even though it was not a fun process at all.

Candice Coleman: I mean, Dr. Yang, he was amazing, and the whole staff, everyone. Because he was in and out the hospital all the time, and so they almost end up becoming like family, especially when it became part of, like, the education piece of it, and really understanding what was going on. They especially made me very comfortable with stepping up to even doing it. And it takes special individuals, just to be in healthcare, period. But to be in that situation, I think Riley was speaking on this, with the nurses, even at the dialysis center, they're seeing these individuals for hours, three to five times a week. Like, they become part of your family, and they helped to get individuals through. I know for my brother-in-law, there was many—like I said, even that day when he called us and was saying he doesn't think he's going to live. It was those individuals at the transplant clinic and at the dialysis center that were helping to also get him through, because they have seen this time and time, like this is their career, this is their living.

And I would just say a huge thank you to all of the medical staff and everyone, I mean, down to the receptionist, everyone plays a part, but we're just so grateful. and he even just had another transplant again in 2023 with UPMC. And for the experience that it was and the situation, it was a great experience with going through that.

David Krissman: I think it's just absolutely incredible that we're even able to do this. If you think about what transplantation is, we're literally taking an organ from one person and putting it inside another and it just works normal. It's an incredibly complex process, which involves matching and, with regards to kidney transplants, laparoscopic surgery, so that it's not nearly as invasive as it used to be; and a whole team that supports, from the surgeon to the transplant nephrologist, to the coordinators and the nurses.

It is just one of the biggest medical marvels of our time, I would say, to be able to do this, to be able to take somebody who is going to die and give them another chance to the point where they're walking around and living almost a completely normal life, because we've been able to take an organ from somebody else and transplant it in them and connect all that wiring. it's totally wild.

And I think that we really do have to take our hats off to the surgeons and the transplant physicians, the coordinators, the nurses, most of whom are the coordinators who are nurses. And just really admire how well that they've been able to do this together as a group.

I think for people who are not patients, we could really use your help in terms of becoming angel advocates. It's an incredibly simple process. Participating takes one minute, once a week. Like, literally, that's it. And all they have to do is receive an email from us with media that's already been uploaded to Facebook and Instagram, LinkedIn, and then just click on it and share. It's that simple. And we'll put you on the campaign of a patient who really, really needs it. It's crazy to think that you sharing media could help save someone's life or would save someone's life. But there's a lot of people that I've worked with that get transplanted by complete strangers, living donors that come forward, as Candice said with her brother-in-law's second transplant. This is something that becomes a calling to people like Candice. And all you're doing as an angel advocate is sharing that awareness in support of one person. And all they have to do is go to greatsocialexperiment.net, thegreatsocialexperiment.net, and they can sign up to be an angel advocate.

And then, for people who are in need of a transplant, there's also a patient resources section, where there's a bunch of free resources including templated webpages, free T-shirts. We work with a vendor that will put a QR code, and some text on the back of t-shirts that'll be sent to your webpage, where the QR code connects to the web page, and just a whole lot of information, support communities online. They can find that as well at thegreatsocialexperiment.net. And all of that is completely free.

People may not know what the kidneys actually do. We talk about kidney failure, we talk about organ failure. And I think most people know like what the heart does But the kidneys produce urine, they allow us to pee. And when your kidneys fail, the toxins and the fluid that people normally pee out get stuck in their system and that's why they feel sick. And what dialysis does, at kind of the fraction of the efficacy that a kidney does, is it takes that water weight and those toxins off someone's body. Patients do it either three times a week or more, but most patients do it three times a week. I think Riley did it three times a week, right? And so, there are many patients that simply, when they have kidney failure, they don't produce urine, they don't pee.

Caitlin Whyte (Host): At the time this narration was recorded, more than 90,255 people were on the kidney transplant waitlist—a number that continues to grow. Nearly 580,978 people are living on dialysis—a population increasing every second. These stories and the web they weave show what it truly means to be an advocate, to be a living donor, and to be a part of something bigger than ourselves.

If you would like to learn more, UPMC Transplant Services in Central Pennsylvania provides expert comprehensive care for kidney and liver transplant candidates and recipients. With primary evaluation clinics in Harrisburg, York and Chambersburg, patients have access to evaluation, pre-transplant care and post-transplant followup close to home.

Part of a leading national program with more than 40 years of experience, UPMC Central PA is here to support patients every step of the way. Visit upmc.com to learn more. To take a deeper look at The Great Social Experiment, visit thegreatsocialexperiment.net. Until next time, this is In Their Words.