The Kidney Collective: "You Turn Your Pain Into Purpose"

Ellie Kugler: I share every win and every everything I do with them. And anything I do in advocacy, I will forever mention his name and his family because I his passing was not in vain.

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're joined today by Ellie Kugler. We're so pleased to talk with her. She is an AKF Ambassador and a Kidney Health Coach who's living with Alport syndrome. Welcome, Ellie.

Ellie Kugler: Hi, thank you so much for having me.

Mike Spigler: Ellie, we really appreciate you being here. And I was reading the great blog post that you did with us, and I saw that you were also, among many other things, including being a content creator and an advocate, but also a bodybuilder at one point. Can you talk about that? How does someone get into bodybuilding? How did you get into it?

Ellie Kugler: So funny story. I was in stage four kidney failure, and I had the worst lupus flare of my life, which I should preface, lupus did not knock out my kidneys. It was Alport syndrome, um, progress uh progressively through time. So that was one of my biggest bucket lists. I was in the gym since I was 17, never really found the discipline. Um, mostly because I don't know, I was younger, I wasn't around the right people. I could find a million excuses. But let's fast forward to how I got there. After I got out of a 21-day stay at the hospital um in 2022, that was January. Um, I ended up signing up for a competition and calling some of my gym friends and saying, Hey, I need you to coach me. I'm gonna compete on June 4th. So I, they're like, You're crazy? Your kidneys, you're in the hospital. And I'm like, it's okay. We will, you know, work with the numbers, you know, the protein restrictions and all that. And I was going into a non-natural competition as a natural bodybuilder. I had already lost uh around 55 pounds at the time. So I completed my weight loss journey and dream of my life all in one. So I ended up competing in June of 2022. I got second, third, and fourth place in the wellness division. And I did it for me and to show others that, you know, your illnesses don't define you. Uh, one of my favorite things to say is you, you know, you turn your pain into purpose. And that's what I'm still doing. I haven't been able to compete since then. However, it is my future plan because I did get transplanted in November of last year.

Mike Spigler: And congratulations on the transplant.

Tamara Ruggiero: How did you find out you had kidney disease? Just walk us through what your journey was.

Ellie Kugler: Since I was in my early years, I'd say before five years old, I had kidney issues and they couldn't explain why. I would have infections, stones all the way through being a teenager. And my infections were always like hard and fast. Like one day I would wake up, I had fever, I could not urinate. You know, mom would take me to the hospital. I say I spent more time in the hospital than in elementary school. Somewhere around my teens, they couldn't find a reason. They said maybe I had a strep infection and it hurt my kidneys in some way, um, because all they could find is proteinuria and hematuria. Keep that in mind. Plus, all these things that kept happening, I was just susceptible to it because of their reasoning. Um, through my teen years and 20s, I never really had a problem except for high blood pressure that they could not pinpoint. Why? I had no cardiac condition. Um, my kidneys were normal, my blood work was normal. I'm too young to have these high blood pressures. It has to be stress. So I didn't really get a real diagnosis until I was in my 30s, where I ended up in the hospital throwing up, um, admitted at first for observation because my creatinine was over two, and they couldn't get it to calm down. It wasn't a hydration issue. They pointed out the proteinuria and hematuria again. And oh, is this normal for you? And I'm like, look, a lot of doctors point it out say to check my numbers, nobody says anything. I'm not new to the hospital. So if no doctor has said anything, then I don't have anything, which is what happens to a lot of us. Um, turns out my kidneys were at 35%, and this was 2020, in January 2020. And I met my first nephrologist, and he diagnosed me with uh chronic kidney disease stage 3B. At that point, we still did not have an Alport idea.

Mike Spigler: It's so sad that you had the data, because so many patients that we talked to aren't even having the urine tests done, right? To even know that that's happening, but to have that data and still taking time. And you mentioned lupus as well. So, did that come with the Alport syndrome diagnosis? Or was that something you had gotten beforehand?

Ellie Kugler: No, I never had lupus. Actually, when I was in the hospital, when that event happened, that I met my nephrologist, got my diagnosis of chronic kidney disease. They did a biopsy and blood work and I had no lupus present. Um, so they checked for that too, because you know, I had a high blood pressure, but not nothing insane. And um other reason. Like, you know, I was young, we don't think young and serious diseases, right? Even if they are doctors of many, many years. I guess they don't want to face the reality that this can happen because I have never met so much, I don't want to say ignorance, but it's a proper word that even though it's their field of study, they don't focus on these things, which I think would make such a difference. I got diagnosed officially with Alport a year later, around the same time, another doctor had found my lupus. So we don't know if it was triggered from the medical stress, stress in general, if it was just a late onset. Women with lupus, it is known that after the age of 30 is when we get diagnosed most of the time, either because we haven't taken care of that and really thought of it, or symptoms weren't serious enough because most of us have mild lupus, I have moderate. Right now, it's thankfully very quiet, knock on wood, because of the anti rejection meds. But it all happened at the same time. And I do want to say something because why didn't my pediatric doctor think of Alport is a good question. He's actually the one that ended up talking to my nephrologist, now me older. He, I believe he's still the department head of Florida nephrology now, my pediatric doctor. He was fantastic. Um, he's the one that brought up the Alport syndrome later, but when I was his patient as a child, it wasn't a mention. It's only because Alport isn't old in the sense of discovery and research. Um, last time I looked, it was about 30 years. I'm 37. It matches with why as I was having these issues. Nobody thought of it. And if it was a thought in someone's mind, it wasn't out there yet.

Mike Spigler: Yeah. And you know, in the National Organization of Rare Disorders, in NORD, they always talk about the zebra, right? So if you hear hoofbeats, it doesn't mean necessarily it's a horse. You have to think zebra sometimes too. And I think, you know, you're such a a good example of that. And um, because you know, lupus is very often thought of with women, whereas Alport is very often thought of with with men. And you really have to think about these things in different ways. So it's it's really great that you're having this discussion with us, kind of bringing this uh to light for those that are listening.

Tamara Ruggiero: There's this outdated misconception that women are Alport carriers, um, but can't be severely affected by it. And so I wonder if that um misconception may have played a role in it taking, you know, you going through years and years and years of kidney issues and not being diagnosed.

Ellie Kugler: I do have my theory on that, because in men, Alport is much more aggressive, versus in women. However, most of the people that I have met in my years, meeting people and advocating and helping, I have only met one man with Alport. Not saying they're not out there. Now I'm in a group on Facebook, another group, and all these people, either them or their children, have it. And it's a whole different world once you find these advocacy groups or just people trying to help each other. Um, but most of the people that I meet are women. The thing is, we have milder symptoms. Um, I'm one of those cases that my doctor says it's more aggressive than he normally sees in women because I did go deaf uh on my right side. Um I didn't go from zero, you know, zero to a hundred, where I just woke up one day and I was as a kid sick because I know people that have been on dialysis since they were 17 because of Alport. So that is, I don't know. It it didn't happen to me that way. It happened to uh some others to me. It progressively went down. I got curious, pulled my own records, and before I was diagnosed with CKD period in the ER and in the hospital that stay in 2020, my kidneys were declining for five years, and not one doctor mentioned anything. Not even my primary. My GFR and my creatinine were just tanking. So that's that may play into that where you know most men are known for Alport, but is it something that they don't look at for women because our hormones do fluctuate our numbers as well? I don't know.

Tamara Ruggiero: We hear that all the time from people that their their numbers were declining for years and nobody said anything to them until it was a really serious state.

Ellie Kugler: That's why advocating for yourself is so important. I will show up and be like, here's all the research, this is why I'm asking, and I need your opinion, but I'm not going to change my mind.

Mike Spigler: Well, if you don't advocate for yourself, no one else is going to sometimes. So, you know, it's really great that you have that confidence.

Ellie Kugler: Yeah, thank you. It's a very serious thing with me, and even with people around me, they might get annoyed, but if I save your life one day, thank you. You can thank me. It's okay. I I just I don't want to see someone go through it. Mine wasn't as they're all tragic because it changes our life, but it wasn't as this big impact where it's I was almost dying. A lot of people make it to dialysis in a way that I wish they didn't, where they just went into no kidney function. And from that day, their life completely changes dramatically. So I think if we continue advocating to advocate for yourself, it will change many people's lives.

Tamara Ruggiero: So, how how did they eventually diagnose you with Alport?

Ellie Kugler: Um, my doctor was introduced to a genetic company, my nephrologist, and I was one of the first uh patients he asked because he wanted patients that were compliant. And if I were to be welcomed into a study, or I was always open for research studies because how else are we gonna get information? Um but I was part of that. So I was one of the first people he asked. I submitted what I needed, and four weeks later it was confirmed I had Alport syndrome [...].

Tamara Ruggiero: Yeah. And when you finally got that diagnosis, what did that feel like?

Ellie Kugler: The craziest feeling ever. Both a weight lifted off my shoulders, both of guilt and you know, I have an answer. When you're that sick and there is no answer, you start blaming yourself. Also, in the hospital, they don't do a very good job of saying, Hey, this can happen to anyone. I've had nurses and doctors, of course, in the hospital field, I would never go back to a doctor that would ask me this or imply anything, saying, What did, what did you do to do this to yourself? And I my immediate response, of course, anger inside, but I was already mature enough to say, Let me educate you for a moment. Because yeah, you might have a degree, but I have a degree in life and what I'm going through. So I instead of saying something to hurt back almost, I I just went into that mode. And I was actually going into surgery that day. And it was it was both an NP and a nurse.

Mike Spigler: You mentioned your doctor talked about uh potentially you'd be a good candidate for trial. Have you been part of a clinical trial?

Ellie Kugler: Lately, no. This study, I believe, was more to see who was an Alport patient and what was it, you know, what was my case. Um, not such as me participating in either medicine or or answering questions weekly or things like that. I've done things like that in the past, but not with that Alport study. Um, I'd be more than happy to be part of it. Donate myself to science before I die would be great because everything is happening now. You know, I have a kidney graph now, but my kidneys are still within me. My genetics are still within me. My medical records are extensive. Uh, all my studies, my theories, I mean, everybody tells me to write a book, but it's a lot that I that I've been through, and I'm very open to speak about things.

Mike Spigler: Well, I think it's great that you are supportive of that in trials. And, you know, the Alport Syndrome Foundation is a great partner of ours. I mean, there are now trials happening uh again in Alport Syndrome, and there's I hope I think where there was not a lot before. And uh we can we can drop a link to them and some more information on that in our show notes.

Tamara Ruggiero: What has it been like? And I mean, in addition to going through this entire experience, um, Alport's a rare disease. And so what and what has that been like, having a rare disease? What impact does that have on your life?

Ellie Kugler: How can I best describe it? As for physically, it's having all these answers as to why I've been deaf. I've been deaf since high school, like a hard of hearing, because it's I can't hear practically at all through my right ear. It hasn't affected my eyes. I know it affects the eyes as well. It's similar tissues to the kidneys, from my understanding. Through my life, I wish I knew I had it to understand how it works now. So there is no cure for it. There is no modification for it. So you kind of have to accept that the hardest part of it is accepting that there's nothing you can really do to change the fact you have Alport. So it's not like a flu, you take some medication and it goes away. So I feel with me, it's been more mental, the challenge than physical. Um, the kidney disease gets treated like any other, in the sense of I went through medicine changes, diet changes, um, lifestyle in general. I then got on dialysis. Nothing is treated differently because, in essence, it's, you try to save that kidney- as much as your kidneys as long as possible. You can control kind of the progression. There weren't as many medications or trials at the moment. By the time I was diagnosed and got into dialysis, there was nothing available. So, in terms of Alport, you just have to learn to understand that it is something permanent. It is still being uh researched and understood. The biggest advice I could give is get support, understand what you're going through, stay on top of your labs. Um, Alport didn't change anything in the essence of my side effects. Um, once I got on proper medication through a nephrologist, my blood pressure was no longer the main issue because now we knew it was from the kidneys. They changed that. I wish they would find more than pinpoint more of what Alport is besides a type 4 collagen protein defect. But what am I gonna do as a normal person that doesn't do science? What am I going to do with that? I did learn about the biology of it. We're not just carriers as women. It, as women, it just depends how we have kids and what we have. It's 50-50, boy or girl. Men, it's 100% girls. So if it was my husband instead of me, if we had all girls, they would all have it. Unless you go through the IVF route and that's another long story. And it did, I did go through that. Unfortunately, couldn't move forward, but that's how I learned more about the genetics of Alport.

Mike Spigler: You mentioned you're living with a transplant, you know, a transplant now and you still have the genetics and the disease, but let's go back to that transplant moment. You know, uh, was it a deceased donor? Was it a living donor? And talk about that process and how you felt when you, you know, had a kidney available for you.

Ellie Kugler: Well, I tell you, the, my story is not common. So it was not through the list. Um, so it was, it is a deceased donor, but it was a direct donation. So how it happened was my mom's sister-in-law, so my aunt-in-law, if you will, unfortunately, her son was hit by a car. And she was an ICU. He was not my transplant donor. He was the way that my my aunt-in-law or aunt, she met this family, that their son, um, which I would love to mention his name, because I promised even to him that nobody will ever forget him or what his family did, which is Jaliud. And he was 29 years old. He had an accident on Halloween night. He jumped into the pool, hit his head. So from there, they took him to the same Jackson ICU here in Miami that my cousin was in. So the families met. They the day the the parents were deciding to donate his organs was the second day they had spoken, and they told her about their son's problem, and they were making a decision. She told them my story. And because of my story, and uh, you know, the wonderful advocate there for donate life, they decided to not only donate his organs, but to donate directly to me. Yeah, and it turned out that his father's side of the family is a long-lost side of my father's side of the family. My great aunt, my great great aunts, here we go again, but this is my dad's side from Cuba was were actually there. And we found out over conversation because I did get to meet my my donor. He was obviously unconscious, but I got to speak to him, his whole family. And that was um, yeah, it was a month to the day from my hysterectomy, which I had to have because I had endometriosis. Um, so it was overwhelming. And then turns out we were 100% match the next day.

Mike Spigler Wow.

Tamara Ruggiero: Yeah. What a story.

Mike Spigler: Like that is one of the most uh emotional transplant stories I've heard. That is really, really uh impressive that that happened and in in that chain of events.

Ellie Kugler: Yeah. And they have taken me in as one of their own. Like if I was one of their daughters now and I'm still in touch, and I share every win and every everything I do with them. And anything I do in advocacy, I will forever mention his name and his family because I his passing was not in vain. There was a reason to it. And for even though one of one side was grieving, the other side was celebrating, it it was for a purpose. And I will forever honor that.

Tamara Ruggiero: How do you sort of process that knowing that he lost his life and and you were able to live with his donation? I mean, I I think for a lot of recipients that can be really challenging to sort of process and come to terms with.

Ellie Kugler: It was hard. It still is, but um, I can tell the story now more easily. I couldn't speak of it, not even before. It was three days before I got the transplant, and I was part of his uh honor walk through FaceTime. Uh I you get a lot of guilt and shame, and uh I guess survivor's guilt is what it's called. Um and it's really hard to talk to his family on like certain days. So I made six months, and my first instinct is to call his his mom and dad, you know, and say, here we are. At the same time, you know, I I know they're grieving. And the same weekend that became my second chance of life was the end of his. So the way I explain it is unfortunately it's a very sad story. But the best thing we can do is honor that donation in a way that makes them live. Um, their story keeps going. A part of them is a part of you now. So I found out everything I could about him, down to his favorite drink, his favorite music. He loves being out in the ocean. Ironically, I do too. And you know, all these things, his birthday, I celebrated. I every every ninth day, was it the ninth? Yes, the ninth of every month, I celebrate. People are like, oh my gosh, you're celebrating your second month, your third month. Yeah, I'm gonna celebrate not just every year, every month. I have a part of me that is not mine and it's thanks to him. And his family deserves to see me and be happy about it and share his story, share our story, keep him alive by keeping me alive and showing what a donation can do. And it helped them tremendously through their grievance period. So I why would I take that for granted? And if they don't want me to be sad about it, then I will go ahead and party like he likes to, go to the beach or go on the boat and be with his family, which was the biggest thing for them. Very big family that they are. So so am I.

Mike Spigler: It sounds like you're you're honoring him very, very well.

Ellie Kugler: Thank you. I'm trying to do my best.

Mike Spigler: Um let's talk about maybe just a little bit. Um, you know, you are uh an advocate, an Ambassador for the American Kidney Fund, Kidney Health Coach. You know, why do you do that? Why do you, you know, take the time to do that uh and give back? And and what do you get out of it?

Ellie Kugler: Well, I started, you know, sorry, you say give back because I started advocating before I even had a kidney and before I was, I started by looking for help and it ended in becoming my purpose. So, dialysis or not, I was I was trying to help find how do I feel better? And I it helped me feel better to know others. So I turned around and did the same. When people started coming to me from the corners of the internet saying, Oh, you have this, how did you do this, or how did you get that? How did you get this help? How all these things. And I said, Wow, there are more people out there like me that are alone than it. They might have family, maybe they don't. You can have a support system, but not a support system that can empathize with you, really, or help you get an opinion without being not having it. So a non-kidney disease person is not gonna know what we're going through in a full effect. Uh so I started to say that I was giving back for what I was looking for. I was looking for a kidney. Everything that I did was with the intention of finding a donor, but it became so much bigger than that, especially once I started having people actually relate to me, having stories to share and ways I could help them or I help them get diagnosed. And then I started advocating with the AKF, um, Alport Syndrome Foundation. I started having resources to help others that didn't have resources, and that just blew my mind. I will continue doing it because now I have my kidney. Now I can help even more. I can be more present, I can help them from diagnosis to dialysis to transplant. I hope my transplant lasts me many, many years. But if I can be out there doing what I love to do, as I've looked into it even professionally. How can I be the best resource for others? Because the best way we learn is from others. We can read an article, we can see a blog post, we can see a TikTok, but more than likely that person's not going to reply to you. When you meet someone who's dedicated to the cause, not just for the likes, not just for the follows, not just to say, hey, I'm sick. Unfortunately, we have people that use it for the wrong benefit. I want to be there. I want to be that person that can walk a patient through. I've had so many of these friends that I started advocating for that now have a kidney. And that's beautiful. And that to me gives me life. I get nothing out of it. I don't get paid for it. So, and I always said it, I as far as professionally, I would love to do more in a setting where I can be of health, not just sit there and be called an advocate, be overwhelmed with a number of patients that I can't advocate for. So that's how a lot of advocate positions are put out there. But as far as all my volunteer work and everything I do for everyone, it just gives me purpose and happiness. I don't want to dime for it.

Tamara Ruggiero: Well, thank you, Ellie. I think uh by coming on The Kidney Collective and sharing your story, you have done just what you're talking about. You've you've helped so many people who are in a similar situation, living with Alport. Um, I think it's great for them to hear from you. And we wish you just all the best.

Ellie Kugler: Thank you. Thank you. I really appreciate the opportunity. Um, the more we get out there, the more we can do, the better these patients are going to be. Which I hate using the word patient, but you know, people that have chronic kidney disease, family members who have family members with chronic kidney disease, rare disease, especially is something that is not looked into enough. I I hope that I'm there to see a breakthrough, not just for Alport.

Tamara Ruggiero: We'll put in the show notes uh information about um all of the ways Ellie is involved with us, kidney health coach, our ambassador program, and we'll put information about Alport in the show notes. So thank you again, Ellie. Thank you.

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, 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.