The Kidney Collective: "This is My Second Life"

Tamara Walker: I've got a second chance at life. I've had a kidney transplant, and it's like starting all over again fresh. And this time I don't want to live my life in vain, just living it for myself. I want to share my experience, my story, and again the resources.

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.

Tamara Ruggiero: We are delighted to have Tamara Walker join us today. Tamara is living with polycystic kidney disease, or PKD, which is a genetic condition that can cause many cysts to grow inside your kidneys and can lead to kidney failure.

Mike Spigler: She is also an AKF ambassador who has participated in our Kidney Action Summits on Capitol Hill, was a speaker at our Unknown Causes of Kidney Disease Summit last year, and is a Kidney Health Coach. She won one of our first ever Ambassador Community Engagement grants, and last year was named AKF's 2025 Hero of Hope. And if you're not familiar with that, the Hero of Hope Award is really one of the highest honors given to a kidney patient in the United States. And it's given to someone who's made an immeasurable impact in their community despite the challenges of living with kidney disease. She fits that description 10 times over. So, Tamara, let me start by asking, when you were told that you were going to get the Hero of Hope Award, what did you think? What was your reaction?

Tamara Walker: I was so excited. It was a surprise. Yeah, I was not expecting that announcement. And I so appreciate the opportunity and the chance to, number one, share my story again, and also to receive this great award. And so I thank AKF for that and all that AKF has done for us, the Ambassadors, Kidney Health Coaches, and all the volunteers.

Mike Spigler: Thanks. And and I was asked right before we started, someone was asking me if I met you before. I was like, I think I've known Tamara for I think 10 years. I think the first it was a focus group we did together that I that I led. And it's just amazing to see not only, you know, the impact that you've had on the community, but also with us, and it's just really very much appreciated.

Tamara Walker: Yes, again, I so appreciate the opportunity and thank you so much.

Tamara Ruggiero: And I got to meet you at The Hope Affair for the first time. And for those who are listening who may not know, that's our annual Gala that we do in Washington, D.C. every year. And it's really focused on people who are living with kidney disease and honoring them for their work in the community. And Tamara gave an amazing speech that just knocked it out of the park and I think really brought home to the audience why she was so worthy of this national award. So again, Tamara, we're just so happy to have you here with us today.

Tamara Walker: Thank you so much. It's it's just an honor and a pleasure. Thank you so much.

Mike Spigler: You were first diagnosed with polycystic kidney disease in in 2000. I would love if you could tell us a little bit about your diagnosis story. You know, I meet a lot of people and then doctors who think that polycystic kidney disease is just an easy thing to get diagnosed and and identified very easy. Um and that may be the case if the right steps are taken, but that not always taken by the healthcare team. I would love to kind of, what does your experience look like with your PKD diagnosis?

Tamara Walker: You're so right about that, Mike. Uh, it is not easy. And in my case, it wasn't. I was diagnosed when I was maybe 25, I believe. And again, not easy. I was having some pain, flank pain, like a fluttering sensation in my abdomen. And I'd given birth to my second son. I was out at the grocery store and I just didn't know what it was. Um, but I just said, hey, this may be, I don't know, something regarding giving birth to my second son. And I was going in. I had already had an appointment to go in for the follow-up at the OBGYN doctor. Uh, and I said, hey, we'll talk about it there. And so I was diagnosed by my OGYN doctor. Believe it or not. It may be cancer or some other diagnosis, but he really didn't know what it was. And I just saw on his face that, yeah, that expression. He had no idea.

Mike Spigler: Had he done some imaging tests? Is that how he was able to see what the... for those of you that may not know, not familiar with polycystic kidney disease, it's a disease where many, many cysts form in the kidney. The kidney becomes enlarged, starts to lose its function. And one of the main ways it's identified is just by some imaging tests to see that. Is that what he had access to? Or how how was that diagnosed?

Tamara Walker: Well, again, this is the OBGYN doctor, so he's given me a physical exam internally, and he felt around in the area and he did discover something there, but he had no idea what it was. Yeah, so he sent me out to get a scan, and not just a scan, it was a CT scan, a local hospital there. At the time I was living in Virginia, from Richmond, Virginia. I think at the time we were in Charlottesville, Virginia. I was there briefly residing, and yeah, I got a scan. He calls back maybe the next day. He shared, well, I've got good news and bad news, which do you want to hear first? And so he shared that it's not cancerous, but it is PKD. And he says it's nothing he can do but refer me out to a nephrologist. And that's how I was referred to a nephrologist, and that's how I was diagnosed.

Tamara Ruggiero: I can't imagine how overwhelming that must have been. You just had your son, and to be told that you have this condition called PKD, did you know anything about PKD prior to that? Or was this just a complete shock that you had to take in the information and try to understand it?

Tamara Walker: It was definitely a shock. Yeah. Devastating, really. Um, but yes, I've heard of this before. Uh, the generation before me, just as you all discussed, it is hereditary. So it was passed down, but I had no idea that I could get it. Uh, so there was no education in my family about this. I just knew that my father had this. I just saw maybe a few times him back and forth at the hospital. But again, I was not educated. We were not educated about the disease. So my father and also one aunt and one uncle there as well.

Tamara Ruggiero: Why do you think that your family was not educated about the hereditary nature of the disease?

Tamara Walker: I cannot pinpoint why. I just know the information was not shared, not shared with them. And then also they did not discuss it as well for whatever reason.

Mike Spigler: And was it your kind of experience in getting the result that encouraged, you know, your families to also get tested, or was it kind of happening parallel?

Tamara Walker: I was uprooted from Virginia to Georgia, where I reside now. And in that is where I decided I wanted to share. But with my children, I have two sons. And so we saw a pediatrician here in Georgia. It was the pediatrician's idea to have my children tested. When I shared with him, I had PKD. You go into initially a new physician, he's asking questions about your history. So that's what happened. I shared my history, I have PKD, and that's how that came about for my children to be tested.

Mike Spigler: What you just said is so important, I think, for those listening is sharing everything that you're going through with every doctor that you're going to, even though it might not be a specialist that's connected to what you think you have the problem with. And, you know, the fact that an OBGYN and a pediatrician, not a primary care doctor, not a nephrologist, started to put all this together is really proof to that. So I think your story has a lot of of meaning for those that are listening today.

Tamara Walker: Thank you so much. I believe it's just profound again that an OBGYN and then also a pediatrician following up, you know, with my family.

Tamara Ruggiero: Your son, your children were tested at that time for PKD?

Tamara Walker: They were given an ultrasound, and the pediatrician again said, not once, but we're gonna do this every couple of years because PKD progresses over time. So the cysts grow within the kidneys, and so they may not see it the first initial time, and later on, a few years down the line, it could be prevalent and they can see it. So that's exactly what happened with my family. So I do have one son that was diagnosed early. Thankfully, we were able to catch that in advance.

Tamara Ruggiero: It sounds very fortunate that he had a pediatrician who was committed to following up, right? And tracking his progress.

Tamara Walker: Definitely, yeah. And I so appreciate him. He's retired now. But I do appreciate and thank you. Because you called it early. Definitely.

Mike Spigler: Let's talk a little bit about kind of the, you know, so everyone can understand if they're not familiar with polycystic kidney disease or just hearing about it for the first time, we mentioned a little earlier, it does progress, right? It usually does get worse over time. Um, what did that look like for you? You know, how long after you were first told that you had polycystic kidney disease, did you need to start dialysis? And what's the journey been like that, you know, until now?

Tamara Walker: We moved from Charlottesville back to my hometown in Richmond. I didn't have a job then once I was uprooted, I wasn't working. I was a stay-at-home mom. I had like I said, I just had my second son, so I stayed at home and I was married at that time, and my husband was the only one providing. Insurance was a major issue for us. And so not seeing the doctor as much as I should. Uh and then I started working once the children went to school and I was able to get after school care. And so going back to work again, I did not have insurance. At that time, I believe you had to work a year because of the pre-existing condition clause. And so I did not have insurance again, so I was not seeing the doctor as I should. Um, they had some program where I worked at the hospital where you can see a primary care doctor for free. Um, but again, it wasn't a nephrologist. They had no idea what to do with me. And so they were giving me uh blood pressure medications uh at that time. Uh and then I went to a urologist because, again, we're seeing the emergency room a number of times over and over again. And, I want to say the last stretch of all these emergency room visits, I see a urologist. The urologist shares with me then that I need to be given an evaluation for a transplant because I was going into kidney failure. And so at this time, I had no idea I was going into kidney failure. I knew I had PKD, knew I needed to take the blood pressure medications, but didn't really know my function, my kidney function at all. The labs, they were not discussed with me every time I went again. This is, you know, volunteers that are seeing me. And so again, I'm not being properly followed. And seeing that urologist, he shared with me that I need to be near my family. And so then I was rooted from Virginia to Georgia, kind of blindsided and not prepared uh to do so.

Tamara Ruggiero: Yeah, can you can you talk? I mean, you've been through so much. What was it like just to have to move from um Virginia to Georgia as a result of PKD and needing treatment and his advice to get closer to your family? Talk a little bit about what that experience was like.

Tamara Walker: Um it's life-changing. It's definitely, being uprooted from again the place where I was born, the place where I was raised. There was roots there already. You know, I had my again, my friends, people that I grew up with in my hometown, and then to go again to Georgia. Now, Georgia is where my parents were from, and so I do have family here, an extensive amount of family. Uh, and they were very supportive of me. Uh not initially sharing what I was going through uh with my health, but at that time I was going through a divorce, and so yeah, they were welcoming me with open arms. And again, I had my children as well, so I needed their help and support. Um but devastating, yeah, devastating. Uh I did not have a job. I just I moved. I was not prepared to do so. I stayed with my mom and my sister until I was able to get back on my feet. Uh so yes, devastating, you know, not to have all the comforts. Again, no insurance. So there's a second time around, I have no insurance again, having to find a job so I can get insurance. Yeah, it was not a great space or time.

Tamara Ruggiero: Your experience happens to so many people. Kidney disease uproots lives. Um, and so what advice would you give to somebody who's going through this right now and is having to juggle all of the things that you had to juggle? How would you, what would you advise them to do?

Tamara Walker: Yeah, definitely it is devastating. Yes, the initial uh diagnosis hits you very hard. Um, sometimes you find that you're alone in this because a lot of people are not aware of kidney disease, the impact of it, um, how to treat it. Yeah, it's devastating. Uh so I will recommend, and what I did not know then that there were organizations. There were organizations nationwide uh that people can reach out to that they can be a part of and join. Uh we have this great thing called the internet. Uh, there's Zoom, monthly meetings. You can connect uh to so many different kidney organizations nationwide. And not just doing so, but also connecting and talking with your family. For me, my family was a great support system who backed me. And again, I had children to help me, you know, raise my children as well. But opening up, sharing your disease, your disease, your diagnosis, and then also engaging with your doctors as well, asking questions. Again, I was uneducated about the disease. So asking questions to your doctor. Um, how is this going to be treated? Uh, what's the prognosis? Uh, what what is the treatment plan? All of those questions. And I think back I should have been asking those questions, but I had no idea. Uh, just to give a little more insight on how to fight the battle. Um, because I believe in my case, it was a battle. And that was not just once, that was continuously. Uh so yeah, engaging with your doctor, um, the staff there as well, their social workers, and just asking for resources and support. We talk about the nationwide organizations, AKF definitely is one of them that I've taken advantage of after I went through my ordeal, after I went through the kidney disease, transplantation, dialysis. But they are great help. You can reach out, there are lots of resources, education there as well, monthly support groups, ambassador groups, Kidney Health Coaches is something that I'm a part of, and I have become a Kidney Health Coach. Again, sharing my story and coupling it with education. If someone's taken note, definitely reach out for those resources.

Mike Spigler: Tamara, I very much appreciate that you're a Kidney Health Coach and you mentioned that program. You know, it's it's something that that's really growing here. Um, you've been in videos, you know, kind of promoting that program, and you just kind of your energy just leaps off the screen. Um you can see how passionate you are about that work. For those of you who don't know, it is a free program. You can take, you can learn about how to educate the others in your community about kidney disease and the tests for kidney disease. And, you know, uh AKF is just one organization we have to rely on amazing, committed people like Tamara to be Kidney Health Coaches. What does it mean to you to be able to go out into the community and give those presentations about kidney health?

Tamara Walker: It means so much. It means the world to me, Mike. It means the world because this is my second life. I've got a second chance at life. I've had a kidney transplant and it's like starting all over again fresh. And this time I don't want to live my life in vain, just living it for myself. I want to share my experience, my story, and again the resources because kidney disease affects millions of people in America. One in seven adults are affected by kidney disease. Lots of them don't even know that they have it. And especially in my community, people that look like me, the impact is great for the diagnosis. And so we just want to make sure that they have the tools, the resources that they need uh to navigate kidney disease. It's a battle. All right, and it's ongoing. And so we just want to make sure that we set everyone up for success. You hear about all these other diseases, they're raising money uh for research. But what about us? Kidney disease. Again, I believe it is my mission in my second life to share everything I've gone through, to share how I've gotten over and overcome, and then again, educate others about navigating this disease and also prevention uh methods as well.

Tamara Ruggiero: I love what you said about this being your second life, and you're not gonna live your life in vain. Can you talk a little bit more about that? What does that mean to you?

Tamara Walker: Okay, so the battle, the health journey, my kidney health journey spans 25 plus years and affects not just me, but also my family, my immediate family, my extended family. And again, it impacts people that look like me, people who don't have access to care. I was living in Athens, a smaller town. Um, the doctors there may or may not have been educated about my disease. I went to a lot of doctors who had no idea what to do with me. And so just sharing my experience because others may be in that same exact situation. I know there are numerous people. And so just by sharing those resources, sharing my experience, they can not be alone. They can know that someone else has gone through this battle, this extended journey, and they can at least, again, get the tools and the resources that they need to navigate this. In my community, I believe it's four times as many people that are diagnosed, you know, in my community than it is for our counterparts, which are, you know, the Caucasian community. So that's why I'm so passionate about this. We just need to get the, I'm gonna take it upon myself to share as much as I can to get the word out. So people can, number one, be aware about kidney disease, dialysis, transplantation. A lot of people have never heard about transplants. They know people who are on dialysis, they know people who have diabetes and also high blood pressure, hypertension. That's prevalent in my community for whatever reason. So we just want to get the resources, the get the word, get the education out so that they can get everything they need to set them up for success so that they can overcome this bad.

Mike Spigler: Well, you just mentioned transplant, and I know you were fortunate enough to have a transplant in in 2014, and I'm sure that's probably kind of maybe where you view kind of the second life really starting, right? And can you talk about your transplant? Was it a a living donor, a deceased donor, and and what was it like to be able to get off dialysis and have the transplant?

Tamara Walker: It was a deceased donor. I was on the kidney transplant list maybe a year and a half. I was on dialysis for a total of two years. Uh, and thankfully, uh, I believe for me, um that was, I believe, very soon uh in order to get the call. Uh so I was going through dialysis and I was diagnosed with renal cell carcinoma, which is kidney cancer, which was another whammy.

Tamara Ruggiero: I mean, I cannot imagine being on dialysis and then being diagnosed with kidney cancer.

Tamara Walker: At the particular dialysis center, I went to, my dialysis doctor came to the center every day to do rounds with the patients. So if something is happening, all you have to do is, like I said, open up and engage with him. So as soon as I experienced some problems, again, I had problems on my side. I was, lots of, let me think back, I had lots of fevers, just excruciating pain, just not feeling well at all. Uh so I shared that with him, and he did an exam right there, actually in dialysis, in the chair, and actually did a physical exam of my abdomen. And yeah, he says, Well, we're just gonna send you in to get another exam. So I got the CT scan, and yeah, that's where uh they discovered that again, it was renal cell carcinoma.

Mike Spigler Tamara, I know you've been through the ringer clearly with everything, but at least the one thing it sounds like you've at least had some really good doctors along the way. I mean, you know, the fact that that wasn't just discounted as being, well, that's just part of the polycystic kidney disease, and that they followed it up and and diagnosed it. I'm sorry you had to go through that, but at least there was there was that outlook on it. Um, you know, for for those out there that are maybe struggling and they feel like they can't break through with their doctor or they don't have someone that's as open to, you know, having that interaction, that dialogue that's so necessary. What advice do you have for them?

Tamara Walker: Yeah, so Michael, there were a few doctors, yes, that uh were very beneficial uh in my treatment and my treatment plans, but there were some that I experienced that were not very helpful at all. I do recall one uh just stating that all the uh symptoms I was experiencing were just made up in my mind. But if you do um, I'm gonna share. If you do run across anybody or any doctor, physician who makes you feel like you're unheard, who's not listening as you're engaging, as you're sharing, as you're pouring out what's happening to you, um, definitely you have other options. So I did not stay with that doctor. Uh I went to or would transfer to another physician or nephrologist in my area. So yes, definitely you can uh switch doctors. You don't have to stay with that same one who's making you feel unheard, uh, undervalued. You can definitely uh transfer out. And so asking questions again uh and engaging is what I say will be the first thing to do. If they're not listening, share again in another fashion or form. But yeah, just ask that they listen to you. And if not, then you are so welcome uh to go or attend another uh physician, another doctor, another nephrologist. And but check with your again with your uh insurance plan to see who you can go to, who's within the area. And then for me, uh there was no one within my area. So I asked for uh referral out, and I was referred all the way in Atlanta because I lived in Athens at that time. I was referred to an Atlanta physician or nephrologist and also a urologist who was able to care for me.I have been told so many times over and over again that there is nothing that we can do for you. But at that particular time, again, they referred me out uh to another city, two hours away at that time. Um, but I was willing and ready to do so. Uh so yeah, I can take care uh of that diagnosis.

Tamara Ruggiero: You are such a, and you continue to be, such a strong advocate for yourself in the healthcare community. And I think what you said is really important. If you're not getting, if if your doctor is not taking you seriously or is brushing off your concerns, you should go look for another doctor, right? It is okay to do that. But I think that is oftentimes hard for people to do. We tend to trust what the doctor says. And so I think you're a great example of what can happen when you advocate for yourself and keep pushing for answers until you get the answers.

Tamara Walker: Well, thank you so much. But I do want to add one thing. You don't have to go to the appointment alone, your doctor's appointments. You can grab a family member, a trusted friend, uh if you attend worship centers, um, someone that you trust from your worship center that you don't mind sharing your health uh with, uh yeah, grab them and ask them to come with you as a support.

Mike Spigler: What do you wish that more people knew about polycystic kidney disease and living with a rare kidney disease?

Tamara Walker: I wish that more people knew that it was hereditary and that it progressed throughout time. Uh again, with my children on one scan or one ultrasound report, there was no sign of it. But a couple of years down the line, you know, it showed up. So I do uh want people to know um that they can also connect with the PKD community. There's a PKD foundation uh once a year. They have PKD Connect, where you can meet uh either virtually or in person. There's a conference there with other doctors. You can find out more about what's going on with research. Uh, they also have something that's similar to an ambassador program as well, where they meet monthly, virtually, online. You don't have to leave your home. And they also reach out to uh those who are our elected leaders and officials and those who make laws for us. Uh so definitely uh reach out to those sponsors and also uh those nonprofit organizations, the PKD community, PKD Foundation, if you have kidney disease, American Kidney Fund again, who again, who has lots of resources, lots of programs that you can sign up for and that you can participate in at home.

Tamara Ruggiero: My last question is I mean, you are probably one of the most involved people in the kidney community I've ever met. You are you seem to be everywhere all the time, consistently working for for the cause of kidney disease and to raise awareness and to help people. There might be people listening right now who are interested in getting into advocacy, but they just they haven't even taken the first step yet because they're not sure where to start. What advice would you give them? How how can you get started in advocacy around kidney disease?

Tamara Walker: Well, again, like I said, reaching out to AKF, American Kidney Fund. Uh there's the ambassador group uh there and also our advocacy program as well, and start there. There's a state advocacy program uh for any state in America. You can reach out and you can be one of the ambassadors for your state there. Uh that's a start. There are also action alerts there as well, where you can reach out to your elected officials. There are different legislative priorities and bills that we can ask our elected uh officials to support. Uh we can email our elected officials. So that can be your mayor, your state representative uh as well, also your senator, and share your experience and share your story with them so that they can know and be aware uh because you are a resident there uh in the state that they represent, and they're making laws that affect us, laws that are for us. So definitely uh that's uh uh an avenue, a way of advocacy as well. But connecting with others, sharing your story, I believe, is the most effective. You can do it online on social media. And if you're not on social media, do that in any of your organizations. That could be uh your worship centers. A lot of people do that after they have worship service. You can share your experience afterwards uh there as well. And you can connect with many people because you don't you have no idea how many others who are going through the exact same journey.

Mike Spigler: Tamara, this has been a great conversation. Uh, we will make sure uh to add in the show notes some of the links that you talked about, some of the programs, Kidney Health Coach, the Ambassador Network, and certainly our great partner, the PKD Foundation. We'll put a link in there to them as well. So again, thank you. Congratulations on being an amazing advocate and for really making a difference in the community.

Tamara Walker: Oh, well, thank you so much. Again, it's a pleasure and it's an honor. And again, I believe it is my duty, but thank you so much for doing so. Thank you so much.

Tamara Ruggiero: Thank you so much, Tamara. This is a wonderful conversation. 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.