The Kidney Collective: "Our Stories Are Singular"

Chris Bryant: This disease, this chronic illness can feel very isolated. But when you connect with others that's going through it, there is a sense of optimism that comes out of that. If you talk to folks that have kidney disease and that have to transplant, it can be inspiring to other patients that are sitting on a machine and and waiting for their number to be called.

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 three 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: This season, we're exploring the mental health aspects of living with kidney disease.

Mike Spigler: Over the next few months, we'll be talking with members of the kidney community about how each part of the kidney disease journey, from diagnosis to transplant, can impact mental health.

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

Mike Spigler: Today we are joined by Christopher Bryant, an AKF ambassador who is living with a kidney transplant. Chris is living with type 1 diabetes, which ultimately caused complications that led to kidney failure and a crash into dialysis. He has received two kidney transplants and two pancreas transplants and has been living with his current transplanted kidney for six years.

Tamara Ruggiero: Chris is a passionate patient advocate who educates, connects, and empowers others affected by kidney disease. He regularly speaks with policymakers, healthcare leaders, and patient communities about access to care, prevention, and the interconnected nature of chronic illnesses. This includes joining AKF at our Kidney Action Summit in Washington, D.C., speaking at AKF's Kidney Action Week virtual conference, and most recently appearing on the patient panel for our Kidney Health for All Symposium in May. Welcome, Chris.

Chris Bryant: Well, thanks for having me. I appreciate being here.

Mike Spigler: Chris, it was so great to have you at our Kidney Health for All Symposium. And for those of you that don't um know about our Kidney Health for All program, it's our program we've had now for uh six years plus uh that focuses on reducing disparities in kidney disease. And um you did such a great job on our patient panel, kind of bringing some of the issues that exist uh to life. How was it being a part of that patient panel?

Chris Bryant: Oh, it was an awesome experience. You know, when we talk about the health disparities when it comes to kidney health, you know, I faced those myself. I fell into those cracks that this is the reason why I advocate to help fill those cracks and gaps for future patients that may be dealing with kidney health.

Mike Spigler: That's great. And we really appreciated your insights on the panel. You know, one of the things that happens a lot of times that's a that's a disparity that we have to kind of focus on is exactly what happened to you, right? Is you you had a diabetes diagnosis, but it sounds like you crashed into dialysis. So, you know, one kind of big gap that we see in the community is is the amount of people that that happens to. And by crashing dialysis, we mean not seeing a doctor really or kidney doctor about kidney disease before suddenly you're at a point where you need dialysis. Is that accurate? And can you tell us about that experience?

Chris Bryant: It all comes down to it. If you don't manage your diabetes or in some cases high blood pressure, eventually it's going to cause damage to your kidneys. But having diabetes for uh 20 years before being diagnosed with kidney disease was still a shock to me. You know, I didn't know that uh this was one of the complications that stemmed from diabetes until I was diagnosed at stage four. Now, because I have diabetes, you would think that uh my doctors will be checking uh for any kind of kidney damage in the first place. But it wasn't until I changed my doctors to a different endocrinologist that I learned that I was, in fact, at stage four kidney disease and then nine months later crashing into dialysis. It was a tough experience and a lot to process as just sitting on a machine um learning about what dialysis actually is. But the fact is, I should have known that I had an earlier stage of kidney disease before I reached into dialysis in the first place.

Mike Spigler: So, how did that affect you emotionally? I mean, I assume that must have been, you know, uh obviously thoughts about what could have my healthcare team done differently, what could have I done differently. What went through your mind when you were told it that you were in that stage for?

Chris Bryant: Yeah, so it was first a shock to me, then it turned into anger and fear, all of the emotions I've been through. When you crash into dialysis, it's not only uh physically damaging over time, but it's also emotionally and mentally draining. It was something that took a while to process actually what was happening. Things were happening so fast that I couldn't even grasp um what was happening to me. I was filled with nothing but uh ambiguity, not even knowing what a transplant was and how can I, if I qualify for it. So it was every emotion that you can imagine that I had to go through um crashing into dialysis, at the same time, still dealing with the diabetes that I had.

Tamara Ruggiero: Yeah, that sounds overwhelming. How did you how did you process emotionally all of the emotions that you were having when you crashed into dialysis, right? You talked about you just talked about the ambiguity, the uncertainty, the the fear. Did you have a support system you worked with or how'd you get through those early months?

Chris Bryant: This would goes back to the health inequities and the disparities. I wasn't getting the education and the guidance that I needed. It's just one day I couldn't get out the bed and I was ushered over to a hospital, and that's when they put a port in my chest in order to start dialysis. My biggest support, of course, is my family, but I would hope that my healthcare team was able to support me anywhere remotely close to that. Um so many of the things that I had to go through, I had to learn on my own and bring those questions to the doctor to ask them, okay, so what are my next steps or what should I do? Um for instance, when I uh was on dialysis, when I crashed on dialysis, within the first week, I did my own research to learn about what transplantation was. And on my next appointment to my doctor, that's when I brought it up to them. One of the things that, in terms of the emotional and how I dealt with it, is has a lot to do with when I was diagnosed with diabetes in the first place, 20 years prior. Um, I had to learn to never give up. I had to learn to manage this uh or or or else. Diabetes has taught me on how to manage emotionally with the chronic illnesses. Uh, and this is something that I still take to today from being on dialysis and being transplanted and rejected. I have this notion to never give up.

Mike Spigler: How did you react when you learned that you had a donor? What was that like?

Chris Bryant: Interestingly enough, that uh, and I say her name anytime I get a chance, she was my living donor. Her name is Sophia. She was a coworker to my wife, nothing more. And when she heard about my story, she approached my wife, stating that she would like to be tested to see if she's a donor. It was something that was unbelievable for my wife. So she was basically kind of brushed it off when Sophia was very persistent on uh going to the clinic and seeing if she's a match. Things were happening so fast that I couldn't get a chance to process what was actually happening. Sophia approached my my wife just about a week after I started dialysis. So just as I'm getting used to this machine, just as I'm getting used to what transplantation is, there was an angel that stepped in and went to bat for me and um decided to donate a part of herself, the greatest gift, to me. And anytime I get a chance to talk about that, it just brings me joy and gratitude. She did an amazing job by stepping up to the plate and giving me this gift of life as I was losing all of the qualities of life, um, just being on dialysis. Dialysis is not only physically damaging over time, but it's also mentally and emotionally draining. And it also becomes a financial burden because I had to stop working. So she fixed all of this by just be giving me the greatest gift by way of a transplant. And I'm forever grateful to her.

Mike Spigler: That's great. And well, I'm glad. So if she's listening, thank you for uh giving Chris, you know, the second chance and letting all of us be able to benefit from you know his experiences.

Tamara Ruggiero: How long were you on dialysis before you received your kidney?

Chris Bryant: The first time around when I crashed into dialysis and Sophia decided that she wanted to become a donor was about four months. Um it was just during the time where she was worked up. They made sure that she was healthy enough to donate an organ. We have to make sure we take care of our living donors to see if that they'll um be able to go healthy, um successfully through that process. Um and once they got through that process, then they scheduled the date for the transplantation. The transplant went well. My donor was home after two days, I was home after three days, and I was not only home with like a transplant, uh, Sophia put my family back together. I always use this notion that it's like a jigsaw puzzle where you're missing a few pieces. And Sophia was the one to find those pieces and put it back together to make the picture whole. So she did the greatest gift for me and not only for myself, but my family as well. So it was about four months that I was on dialysis and I and then I got the gift of life.

Tamara Ruggiero: Okay. I I love the analogy that you use about Sophia. She sounds like such a wonderful person. And then how long did you have Sophia's kidney?

Chris Bryant: After Sophia's kidney, then uh about nine months later, I was back in the same operating room at the same hospital, Weill Cornell, and I received a pancreas transplant. So that was an in-between transplant that I received nine months after my transplant, uh, my kidney transplant. And it was the first time in my life that I got to experience what it was to not be on dialysis and not have diabetes. Once I received a pancreas transplant, it was the best I've ever felt. It was the only time in my adult life that I got a chance to experience what it was like to not have diabetes. The problem is there is a post-transplant life. And post-transplant life means that you take a lot of medication and then your immune system goes down and you're more susceptible of getting viruses and infections, and I wasn't immune to that. Um, a year after I received my pancreas transplant, I had a couple of infections. I had CMV, I had BKV, which I, of course, survived, but the problem is the pancreas didn't like it. So after three years, the pancreas rejected, which was devastating enough. And after a total of 12 years, the the kidney, Sophia's kidney, started to reject as well. The idea is this is where the emotional roller coaster started to happen. There was a person that took a piece of themselves in order to give me gift of life, and here it is 12 years later, and it's rejecting. I really wasn't aware that transplants can expire at some point. I guess I was in this tunnel vision that I realized that this was more of a cure back then. But the fact is, a transplant is one of the best, but it is still just a treatment. And eventually it rejected. I approached Sophia and got a chance to tell her what was happening. And just to give you an idea of who Sophia is, she says, fix yourself up and go out and get another transplant. And that's exactly what I did.

Mike Spigler: Wow. Well, so just going back to that time, I mean, you know, how did you process that that they were that that kidney was was being lost? And, you know, I think for those of you mentioned a couple different viruses, for those that that don't know, especially like BK virus, pretty much all of us have it in our bodies. But when you have re uh rejection medicine kind of pushing down your immune system, those things kind of have uh, you know, uh freedom to do what what they want to in the body, and and that often happens. Um, but from an emotional standpoint, you know, you you you said you were feeling the best you'd ever felt, right? And then this happened. Like how did you get your pick yourself back up off the floor again?

Chris Bryant: It goes back to never giving up. It's always gonna go right back to that, never give up. I knew that I was dealing with another trial and I was hoping for another triumph. I was hoping that I could get another living donor, honestly, because the first process of being on dialysis for four months, I was hoping that that can happen again. Unfortunately, it didn't. But this time was different because I had the opportunity of preparing to go into dialysis rather than crashing into dialysis as I'd done prior. And when I started dialysis for the second time around, I not only went for a kidney transplant, this time I went for what's called the SPK or a simultaneous pancreas and kidney transplant, which is a huge transplant.

Tamara Ruggiero: I can only imagine the emotional roller coaster of that. So, so then what happened? Did your wife participate in the paired exchange program or how didn't everything work out with your with your next transplant?

Chris Bryant: Well, we thought about um my wife donating to another family and doing a paired exchange where I can get the transplant. And that was, you know, we talked about that quite often. The idea is what what what what made us hesitate on that process is the idea that if I go on dialysis, then I can possibly qualify for a dual transplant. So I said, if my wife donated, then I would just get a kidney. But if I go on dialysis and sign up for the peer the dual transplant, then I would get a kidney and a pancreas. The idea that it would be two and a half years before I would get called, which exactly that's where it landed on, two and a half years. I was called in for a pancreas and a kidney, a dual transplant from my dis my my third donor. I say his name anytime I get a chance. His name is Mark, and he gave the greatest gift as signing up as an organ donor in order to save my life, which I'm forever grateful for that as well.

Mike Spigler: Was there any differences in in emotional and kind of your your way of approaching the transplant from a deceased donor, from a living donor? I mean, obviously, you know, had a chance to know Sophia and and get to know her and not having an opportunity with Mark. I mean, you know, what what what differences did you experience?

Chris Bryant: Honestly, there wasn't much difference. I knew Sophia, yes, but Mark, I I didn't know. But just the notion that Mark's family turned what I consider a tragedy into a miracle for another family that they don't know, the emotions were the same. I got a chance to meet the family as well many uh a year after I was transplanted. So when it comes to comparing the donors from a living donor to a person that is passing away, the feelings are the same. You know, the the generosity is the same, the gratefulness is the same because there is a person that still took a part of themselves in order to save my life, in order to put my family back together. And it's something that I still can't put together the words to explain my gratitude.

Tamara Ruggiero: Yeah. When you met Mark's family, what did you say to them?

Chris Bryant: I was at a loss for words. Um I spoke to my donors, uh my donor's mom, and I met his daughter, my donor's daughter. The first one was a lot of emotion, a lot of tears. I got a chance to hear the story of Mark, and it was a connection that not only did I needed, but also my donor family needed. They wanted to hear from someone who actually received Mark's organs. He not only saved my life, but he saved six other lives just by signing up as an organ donor. So that feeling of connection, now we're like we talk regularly uh about this situation, and we talk on it on every anniversary um of my kidney transplant, I can I speak to his daughter on her birthday. So it's a wonderful connection. Yes, a wonderful connection that we have uh that have come from um by the gift of life.

Tamara Ruggiero: Chris, thinking about the people who are still on dialysis and thinking about what you went through in those two and a half years when you were waiting to be called for your transplant. Someone who's listening to this now who's waiting to be called, who's on the list, just waiting for the call, what kind of mental health coping advice would you give to them to just get through that day by day?

Chris Bryant: My experience has led me to understand what other patients are going for when you're waiting for your number to be called. You have no idea. Is the number going to be called next week, next month, next year, five years from now, or ten years from now? That is an experience that is hard to put into words or what that is like. The idea is that we want to never give up, but there are times that it's it's more difficult than others. One thing that I would advise many of the people that are dealing with CKD, ESRD on dialysis or waiting for a transplant is to join a support group. You know, there are great support groups out there. I'm connected with Kindness for Kidneys, which has an awesome support group for folks that are dealing with any version of uh kidney disease and kidney health. The transplant journey is another one that has an awesome support group. When you connect with your community, that other people that are going through something very similar to what you're going through, it helps. It helps with the coping mechanism. So I suggest that folks to never give up, continue to talk to other folks because this disease, this chronic illness, can feel very isolated. But when you connect with others that's going through it, there is a sense of optimism that comes out of that. If you talk to folks that have kidney disease and that have to transplant, it can be inspiring to other patients that are sitting on a machine and waiting for their number to be called. Also, I would tell them to sign up to multiple transplant centers if you can. If you can go to a different state and can be there for three or four months after transplant, then perhaps that might be another option. So support groups are key, but also signing up to multiple transplant centers is very important in terms of um trying to reduce your time on dialysis. One other thing that I want to mention is talking about preemptive transplants. You know, we talked about learning early detection. We talked about um the treatments that are available if you're diagnosed really early. But there usually is a window where your EGFR is in between, where you qualify for a transplant, but you're not quite on dialysis yet, that you may be able to get a living donor within that um that span, that window, avoiding dialysis in the first place.

Mike Spigler: Chris, that's great advice. And especially for those that are living with kidney disease, they're listening to this. But, you know, one of the great things about this podcast is we also have some folks listening that are caring for people that have kidney disease. I'm talking about healthcare professionals, social workers, physicians. What advice do you have for them about how they can help their patients manage the emotional burden of kidney disease?

Chris Bryant: I always speak about social workers. I had a great social worker that I can still continue to um let them know how my health is going. The idea is every patient is different. Our stories are singular. Yes, collectively we all want this transplant if we qualify for it. But our stories are singular. We there is no blueprint for all patients. So because we are so different on how we landed on dialysis, our lifestyles, our options, our age is all different. We have to treat each patient different. And to have a conversation individually with each patient is important, in my opinion. Just being this conveyor belt where you go to the doctor, you get your treatment, and you leave is not the answer. The answer is to build that relationship. Get a chance to know about the patient, explain to the patient what these numbers mean. I remember doing blood work and I had no idea what these numbers and these letters meant, and these I don't know if I was in range or out of range. I would like to break it down to layman's turn so you can actually understand what these mean. I know what everything means now, but in the beginning I had no idea, and I wish that I would have been taught or educated on what all of this meant. What's all of this medication that I'm taking? What does it mean? What does it mean like to take phosphorus binders um to keep my phosphorus going up? What is the problem if my phosphorus stays high? I didn't know any of those things. Uh so those are the things that that should be educated to each individual patient in a way that they can understand it. We came a long way, but in some cases we have a long way to go.

Tamara Ruggiero: Yeah, I mean that's such great advice. And I think you have, throughout this conversation, you have described so many gaps in the system in terms of patient education that you experienced personally and that you now are working so hard to help others not experience those gaps. Final thoughts. What would you want to leave our audience with?

Chris Bryant: Yeah. So I want to always tell patients that are in the kidney community to never give up. I want to tell our patients that are in the kidney community to join support groups. And I want to tell, you know, I'm and I'm gonna wish every patient well. But what's important outside of getting this tunnel vision when you're sitting on this dialysis machine, either peritoneal or hemodialysis, and you want this transplant, and you're called for this transplant, and you're so excited that there is a post-transplant life. Many patients think that once they get this transplant that things are gonna go back to normal, a pre-diagnosis normal. But in fact, the reality is there is a new normal. There is a post-transplant normal. And hopefully it works out well for you. The different methods that you have to do in terms of holding on to your transplanted organ, visiting doctors, taking a a bunch of medications, worrying about continuously having insurance so you can still afford your medication is a different type of worry and concern. But it's still, in my opinion, my opinion, the greatest treatment available right now. Now, hopefully, we can come up with some new therapies that can help folks hold on to their organs longer. Hopefully there are new immunosuppressed medications that can cause less side effects than the one the current ones have. It's been 30 years since we had any updates in terms of the treatments available for folks that are dealing with a transplant. I'm hoping that we can get the proper funding in order to come up with new treatments for folks that are dealing with transplants. The idea is we want to get a transplant, but we also want to have our transplant for as long as we can.

Tamara Ruggiero: Well, Chris, thank you so much for being here today. Your insights have been invaluable, I think, for anybody listening to this. You've been through so many experiences with kidney transplant and pancreas transplant and being on dialysis and, like you said, the new normal of post-transplant life. And I know that our audience is going to so appreciate hearing your insights into that. So thank you for everything.

Chris Bryant: Thank you for having me. My pleasure.

Tamara Ruggiero: 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 kidneyfund.org /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, Blue Sky, LinkedIn, YouTube, Twitter /X, or whatever comes next. Join us next time. And remember that even in the toughest moments, there's hope ahead, and The Kidney Collective and AKF are here for you now.