The Kidney Collective: "A Journey That Has Made Us Stronger and Smarter"

Amelia Rowniewski: I've kind of grown up with kidney disease, so I don't remember much of a time before that. So it's just kind of shaped my experience along the way. It's given me a sense of purpose, and I know that I want to use everything that I've been to help the next generation of kids with kidney disease.

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 Amelia Rowniewski and her mother Wanda Kietlinski. Amelia is an AKF Ambassador and a former AKF calendar kid winner who is living with a kidney transplant. Diagnosed when she was three years old, Amelia was fortunate to have her mom Wanda at her side to help her navigate her kidney disease journey.

Tamara Ruggiero: They are also both advocates working with AKF to spread awareness about kidney disease and organ donation, joining us in Washington several times to speak to legislators at our Kidney Action Summit. Amelia also helped establish a chapter of the Student Organ Donation Advocates Group and was the group's president at her college, American University. Welcome, Amelia and Wanda.

Wanda Kietlinski: Thank you.

Amelia Rowniewski: Thank you.

Tamara Ruggiero: Amelia, congratulations. You recently graduated from American University. How does it feel to be done with college?

Amelia Rowniewski: I can't believe it. It went by so fast. I really enjoyed my time in Washington, DC, and now I'm excited for what's next.

Tamara Ruggiero: Yeah, so you've started your first full-time job. Can you tell us about that?

Amelia Rowniewski: I have, yeah. I work as a medical assistant. I'm hoping to apply to medical school in the future. So I'm working with patients and getting that hands-on experience before I get ready to apply to medical school.

Tamara Ruggiero: Wow, that's fantastic.

Amelia Rowniewski: Thank you so much. It's been a long journey, but a really exciting one full of a lot of fun paths.

Mike Spigler: Well, we're so glad that uh you're also you're staying in the medical field and bringing kind of that lived experience uh to patients, and we really appreciate that too.

Mike Spigler: Wanda, let me ask you, since I know Amelia was so young when she was diagnosed with kidney disease, could you walk us through the story of how she was diagnosed?

Wanda Kietlinski: It was a long time ago, just before her third birthday. She had gone to a book reading at our local library and she came home sick. Um, Amelia was born healthy. She had no signs of kidney issues or any other medical problems, but uh she went to this event and she was young and she came home and she caught a cold, which wasn't unusual because kids get sick all the time. The difference was with this illness, is she didn't seem to respond to the usual things. The Tylenol, the Advil, the chicken soup, the fluids. She was pretty progressively moving from the regular cold symptoms to high fevers and inability to eat and just not responding to the usual things that had worked before. So I did, I called the pediatrician and I said, we need to be seen. And it was viral season. So things were going around and the kids were sick and the waiting rooms were full. And they assured me, they said, We're not going to do anything for her. Um, you know, just keep her tight, make sure she's getting fluids, make sure she's eating. She has to ride it out because viruses are treated this way. And so a day or two goes by, and now her fever is going from 103 to 104. I didn't like the trend. And when she hit 105, I called again and I said, I really think she needs to be seen. I'm not comfortable with fevers this high. Kids don't uh do well with when their fever gets this high. And again, they assured me that because of the virus that was going around, it wasn't unusual for the fevers to be high. And they said, sit tight, make sure as long as she's uh she's hydrated and as long as you're doing all the things you've been doing, she will get through this. And so it was the weekend, and I kind of rode, rode out the weekend, but by Monday, I could see that she was her breathing was more labored and that she was it was harder to give her things to eat and drink. She just had no appetite. So I took her to the pediatrician. I didn't have an appointment. I just got her dressed and I said we have to go. And um, and they saw me immediately, even without an appointment. And within 15 minutes, they called the ambulance. Uh, she was rushed to the emergency room and she was admitted. She was admitted to uh the hospital with pneumonia. They had done blood work and cultures and x-rays, and they told me that she had pneumonia and that she would be admitted for IV antibiotics, and um in about two days or so she'd probably go home on oral antibiotics, and that's kind of how things would ride out. But things did not, they did not go as planned. And although she was admitted and she started she was started on IV antibiotics, the course of her symptoms were not aligned with just plain old pneumonia. She wasn't responding well, her breathing continued to get worse, and her kidneys were stopping, and they didn't really understand why. And uh, so there was a lot of debate between the different departments, infectious and nephrology and the pediatrics department, trying to decide why are things trending in the wrong way. Within 24, 48 hours, she was transferred to the pediatric ICU, and she was immediately put on dialysis. They told me that her kidneys were stopping. And what they had discovered after a lot of hard work is that she had developed a complication called hemolytic uremic syndrome. The bacteria that caused her pneumonia was the wrong one to get. It was called Strep 19A, and it was very virulent. And initially they thought perhaps it was a vaccination failure. She was given the vaccines but wasn't responding. But it turned out to be a strain that wasn't on the original PNUVAX 7. And so what happened is her body produced toxins, and these toxins started shutting her down. Her kidneys were first. She really struggled through many different complications. Her lungs collapsed and they started dialysis, hemodialysis to begin with. It didn't go well. And because of catheter issues and things that were not working as they should, she went from hemodialysis to peritoneal dialysis, which also came with complications because she was young. She had just turned three. The size of these devices were not uh well fitting for her. And so the machines would stop and dialysis would take hours and hours. And although they induced a coma, a medically induced coma, in hopes of getting her body to rest so that she could fight this infection, it was a really rocky road. They didn't know if she would make it. It was a really scary time for us as parents because honestly, Amelia was born healthy. She was 100% healthy, no issues. One day she's running around like every other two, three-year-old. And then fast forward, she's in the hospital on multiple machines, not only dialysis, but they also worked hard to filter out the toxins in her body that had built up. And um, just along the way, it was it was quite a scary time. But her diagnosis came in this way is that they discovered the best explanation for why her kidneys were failing was that these toxins were destroying her kidneys and causing her not to filter correctly. Um and so that was acute renal failure, is where we started. And they explained to me that she had about four months. Like if her kidneys did not recover within four months, they probably never would. And so they didn't, and they and then they recommended um transplant because kids do better uh with a transplant than they do on dialysis. That was definitely true for Amelia.

Mike Spigler: Wow. Well, for those listening, I mean it is surprising how many people uh in the hospital with like an infection or some kind of a cardiac event end up needing dialysis from, as you said, acute renal failure or acute kidney injury, it's sometimes called. Um we could certainly put some links to information on that in in the show notes as well. I mean, I can't imagine how scary that must have been um and confusing where you've gone from, you know, uh what's seemingly a cold to needing dialysis. Did you know anything about kidney disease, you know, that this could lead to needing dialysis? Do you even know what dialysis was?

Wanda Kietlinski: I I mean I did because I have a background in medicine. And I think that was part of my struggle or my guilt along the way because I was not a helicopter mom. I knew I my child had been sick before. We'd gone through many different colds and flus and whatnot. So when this one presented the way it did, I couldn't understand why we weren't progressing better. And even with intervention from the pediatrician's office, it was viral season. And even if I had brought her in earlier and they had given her prescription antibiotics, she wouldn't have responded because viruses are not treated that way typically. However, in Amelia's case, it's just it was the wrong bug to get. It was a very virulent uh strain and it and she was very young, so her immune system hadn't fully matured, and she did her best with what she had. And fortunately for us, she really fought the great fight and she was able to uh make her way back to us um in in a better way. And we just had an incredible doctor team that that worked with us, but did I know? I had no idea this it would re- I mean, I really thought we were going in for a couple days of IVs and we were gonna go home on oral and it turned our life upside down. I mean, we went from healthy one day to fighting for our life the next day, and it turns your world upside down. And for I would say about a year and a half, we were in and out, in and out of the hospital complications thing. You know, the early stages after a transplant are the sometimes the roughest.

Tamara Ruggiero: And her age definitely played a factor in that. There must have been so many emotions, it must have been so difficult. And I think about how your life, I I wonder if you sort of think of it as life being divided into a before and after, right? Before Amelia was perfectly healthy, and then after everything changed, like flipping a switch. How did you cope with that?

Wanda Kietlinski: I have an amazing family and and friend system of support. And I have to say at the top of that list is my faith. Because really, where do you turn to when life throws you those kind of curveballs? We really were being prepared for Amelia not making it. Like they didn't think she could fight her way back. She was so young and she tried so hard. And I remember her doctor saying, our job is to keep her alive today, and her job is to fight her way back to you. And they said, Together, we'll get the job done. And really that's the way we did it. It was devastating. It was um a roller coaster ride I wouldn't wish on anyone. But I will say that through the highs and lows of the journey, there were many blessings that came along the way, and that's what we focus on uh giving back and teaching others and sharing our story, and never appreciated the work, the importance of the work the kidneys do until we walked down this road. It really was a uh journey that has made us stronger and smarter and really motivated us to help teach others.

Mike Spigler: Well, I mean, the good news on the end of this is that, you know, when she was able to get a transplant, um and uh, you know, if I remember correctly, it was on your birthday, or you got this kind of for your birthday, Amelia. Wanda, when you were thinking about this and the experience of learning that she needed a transplant, what did that look like? Can you tell us, was it a living donor or a deceased donor? And then what did that process look like?

Wanda Kietlinski: Somewhere around the three-month mark after this um entire event started, they called one day and they said, We want to put her on the list. We want to put her on the transplant list. Kids don't grow well on dialysis, and she's had so many complications, we want to put her on the list. And so they did. And at about that three-month mark, they called and said, We have a kidney for Amelia. And at three months, I wasn't 100% convinced. I said, prove to me that she will not recover in the next month because she was voiding. It looked all normal, uh, but it wasn't filtering normal. And I said, before I put this child of mine through that kind of surgery, I need to know that her kidneys will not recover. And so that's what her doctor team did. They repeated the tests, they showed me and proved to me that we are not trending in the right direction and that her kidneys are likely not going to recover. And so at the four-month mark, uh, we got the call. We got the call one night that says we have a kidney for Amelia. And um, by then I accepted. I have to say it was a really tough journey, but you have to accept the changes that happen in life. And um, and we we knew that the best thing for her would be a new kidney. And so we were fortunate enough. We had an incredible medical team. Uh, the donor that they found for Amelia through through our organ procurement organization was in the same state as Amelia. It was another three-year-old child. Um, and her surgeon was amazing enough to be able to do both sides of the surgery. He transplanted the kidney after harvesting it from the child. And I cannot thank, I cannot thank him. I cannot thank the parents who who made this incredible um charitable uh donation. There are no words. There are no words, but that was how we were fortunate enough to help Amelia and and and recover her kidney function.

Tamara Ruggiero: And so, yeah, really, there are no words to describe that experience and what those parents went through. How did you prepare Amelia for this surgery and and how did you prepare for it?

Wanda Kietlinski: Oof, lots of prayers. Um I you know what? I prepared Amelia for the surgery by explaining in age-appropriate ways the importance for why she needed what she needed. And and it was very hard because literally she was happy, healthy one day, and then she was sick and tied to IVs and getting dialyzed. And and I can't imagine at the age of three, like, how do you understand all of that? And how do you manage it? I have to say, she was incredibly open to all the education we gave her. And it was not a single effort by me or our family. Her doctor team was incredible, explaining to her every day, answering her questions, making sure she understood. And her doctors were very focused on educating us as parents, but also educating Amelia because the more she understands, the more she'll cooperate.

Tamara Ruggiero: Amelia, do you remember any of this?

Amelia Rowniewski: You know, I remember parts of it. I think a lot of it, I was so young that it's hard to remember. Um, but like I remember for my third birthday that they brought in like therapy dogs for my birthday and they came in singing songs. And I remember vividly like waking up from my transplant. I remember being really angry. But a lot of that time in the hospital, I don't remember vividly. Like I can place some memories that I have based on, for example, what my mom's told me. But there are little things even today. I had a lot of surgeries under general anesthesia during that time, and I can distinctly remember like the smell of the anesthetic that they use. So there's little things like that still pop up that even though I might not remember everything exactly like my mom explains, I do I can piece it together based on the memories that I have.

Mike Spigler: I was gonna say, I mean, it it is so hard being a kid anyway, and like transitioning from elementary school to middle school to high school and the social stuff and everything else, like homework and everything else that goes with it. But to live with a chronic disease and a transplant after that too, how are you able to manage that and not really let, you know, your uh kidney journey kind of, you know, determine your own identity?

Amelia Rowniewski: I don't really remember a time before it, right? So most of my memories are post-transplant. And so I think I've just grown up in a way where I like know that I always had to take meds for the rest of my life. And like I have a distinct memory. I went to preschool less than two years after my transplant, and I remember there were kids who were like eating grass and they wanted me to like take a eat a blade of grass, and I was like, no, I can't do that. I have a kidney transplant. So I've kind of grown up with this, and you know, I think it it definitely there are times where I feel like it defines my identity more than others, but I think it's given me such a gift, it's given me a sense of purpose, and I know that I want to use everything that I've been to to help the next generation of kids with kidney disease. But, you know, I've also tried to branch out and just explore things that I enjoy. I really love baking, for example. I also really love getting involved in advocacy, like I started my school's chapter of student organ donation advocates. So, in short, I think I've kind of grown up with kidney disease, so I don't remember much of a time before that. So it's just kind of shaped my experience along the way.

Mike Spigler: Yeah, and so many uh kids that are living with kidney disease. I mean, it's it's very rare in children, right? So, I mean, did you ever encounter someone else that that, you know, that is going through some of the same things you were going through? And and what was that like? Amelia Rowniewski: A few years after my transplant, we went to a summer camp as a family called Camp Sunshine, where it was a summer camp for families of children with chronic illnesses. And so every week was a different theme. But the week that we went was nephrology and organ transplant week. So that's where I first met other people with organ transplants. And it was so great because I got to connect with other recipients, my sister got to connect with other siblings of people with organ transplants, my parents got to connect with other parents, and that was the first time I met, you know, individuals where who had been going through the same things I went through. And so as I got older, I um went to summer camps independently just for people with kidney disease. And that was just an incredible experience to meet more people and understand that I'm not alone. There are so many other kids who have been through what I've been through. And I think along the way, like along my academic journey, um, right during high school, I had an administrator call me right before we went back in person and she's like, Amelia, I want you to meet someone. And so there was a student starting at my high school who had just been diagnosed with kidney disease. And so I've met people organically like that along the way, which is, I guess, a perk to being so open about my kidney disease and organ transplant journey.

Tamara Ruggiero: That's wonderful that you've met so many people along the way and been able to help them in so many different ways. Um, Wanda, a question for you is uh how did you balance helping Amelia understand what was going on with her health as she was growing up? Um, you've talked about that quite quite a bit, but while at the same time trying to protect her childhood and her peace of mind and just let her have the freedom to be a kid.

Wanda Kietlinski: I will tell you that her doctor gave me a piece of advice very early on that I've tried to implement and continue all of these years. Amelia just talked about preschool. When she um before she got sick, I and her dad had investigated and looked for preschools and where where will we send her? And we had picked one. We had picked a school after a lot of uh investigative research. And then suddenly she got sick and it was an unplanned, unexpected, and and the transplant happened, etc. And and when the transplant was done, the topic of preschool came back up. And she's three years old. And I said, There is no way I'm sending this child of mine to preschool. Like she will get every illness, she will lose her kidneys. There's absolutely no way I'm doing that. And her doctor said that is not like that is not the way to go. Like in fact, he said the opposite. He said, The way you treat Amelia is the way she will see and treat herself. So I want you to send her to preschool and she will get sick. And when she gets sick, we will take care of her. And every time she gets sick, we will be there to help you get her through. But if you do not treat her the way she deserves to be treated, she will never see herself as capable of doing anything. And so that is, I still think about that today, and it is so much part of the way I've tried to raise her, is that yes, the challenges are harder for her. Yes, she has to go through things that other kids don't understand. And sometimes it's it's a lonely place to be, but it's also made her strong. And it's also given her adventure. And she went to study abroad. I mean, there was a time I would have probably been horrified at that, and yet today I realize that I have to share her with the world. She has a bigger voice than one I could have ever dreamed for her. And I celebrate every moment of that. And I thank her doctors for that because he said, no way, no way can you limit her. She's going to do incredible things if you let her fly. And so that's really what I've tried to do her whole life.

Tamara Ruggiero: That's great. I love that.

Mike Spigler: Amelia, let's talk about, you know, it's it's always difficult when you've you're going to a pediatrician, you've got your parents making you meals, you've got your parents at home, you know, taking you to the doctor doing that. But once you leave the house and you're going to college, it's a whole different world. So how did you prepare for that transition and being really in charge of your own care?

Amelia Rowniewski: You know, I was definitely daunted, but at that point I had been pretty stable in terms of the medications I was on and the frequency at which I was seeing my doctor. That first year, I really just prepared by making sure I had enough medications and I knew who to call if I felt sick or if I needed help. I made sure to schedule all of my appointments in a way where I scheduled one in August and then I scheduled one in December when I came back for break. The biggest transition was when I went to study abroad. I studied abroad in Madrid and it was wonderful and I really loved it. And I got to do an entire research project about the Spanish organ transplant system, which is a story for another day. But in that process, I had to figure out how to get enough meds for an entire semester, which, like, talk about daunting. Anyway, I went to switch my medication. I had to switch to a mail order pharmacy. I had to make sure I had letters in English and Spanish from my nephrologist and say, this is the medication she's on. This is why she's on it. Here's the signature. I prepared all of that. I made sure I had all my appointments done. And then um, we're going through TSA to, you know, get on the airplane to go to Spain. And um the TSA agent stopped me and we had to, he like was swabbing all of my medications. It's definitely very stressful. And it ended up being fine in the end. But just that transition of like I had to do all the kind of back work to make sure I could go to Spain was um, you know, a huge responsibility for any college student, but I think specifically someone like me who, you know, has more medications and more complications. It taught me a lot, but I now know all of these things about vacation overrides and who to talk to, and I need X, Y, and Z. So, you know, I think you learn the more you do, which is a gift, but it also can be daunting in the beginning for sure.

Tamara Ruggiero: That's fantastic. And I think that that is also in in such large part credit to your mom, your parents. I mean, I think it's such a struggle to transition from being a pediatric patient to an adult patient. How did you prepare Amelia to take on this independence, which it sounds like she's taken it on very responsibly and has done, you know, has just flown. But how did you prepare her for that?

Wanda Kietlinski: My first memory of of working with her in a difficult way was when post-transplant she needed to take medicine, and not every medicine was available in liquids, and some of them she had to swallow, and she's three. So I remember the day that there was one particular medicine, it tasted terrible. We tried giving it to her in in many different forms. It tasted terrible. So the goal was how do I get her to swallow it? And so we started with MMs, mini MMs, and her sister got involved, and the whole family swallowing MMs. But it was the first, uh, it was the first step in accomplishing something that was important because what she received was a gift, and we had to do everything we could to protect that gift, and it needed to last her as long as possible because the gifts are very hard to find. And so, in small ways, from a very young age, Amelia participated. She knew what each medicine was for. I taught her that very young. And obviously, before college, she had to be responsible enough to, you know, know when the refill is due, like not to not to forget your meds, not to forget to refill your meds, uh, to be compliant with doctor's appointments. Um, I have to say, the hardest day for me, and yet the greatest day was the day she went to her nephrology appointment alone. Like she didn't need me to go. And is what I wanted. I wanted her to be able to stand on her own two feet and be responsible and make good choices because they matter. And she's been really I'm very lucky. She's been really compliant and and fantastic about that. And not just learning the lessons, but then paying it forward by teaching others. I think that's what every parent hopes for. And I've been fortunate enough to uh to get there with Amelia. Tamara Ruggiero: Yeah. I I love how you put it in the context of taking care of that gift that that other family gave to you.

Mike Spigler: Wanda, for families that are listening to this, uh a mom or a dad out there who might just be starting uh a journey with a child that's living with kidney disease. What is something you wish someone had told you early on about taking care of your own mental well-being along the way?

Wanda Kietlinski: I have to say that you can't take care of your child unless you take care of yourself. Finding a support system that that works for you. Self-care, as hard as that is as a as a parent to make time for, it's so, so very important to do. So I would say to other parents, number one, educate yourself the best you can so that you understand everything you need to to keep your child healthy, and then share it little by little with your, not just with your child, obviously, but with uh your support system so that you're all on the same page, so that they understand when you miss events. I can't tell you how many times our journey in life was changed or challenged because of things that weren't expected but came up, illnesses or or procedures or other things. So I always used to teach the kids you you gotta bend with the wind. You don't know what tomorrow brings. Um so I would challenge parents to uh to do their very best, uh learn as much as they can, and then you you gotta bend with the wind when when unexpected events happen, um, find your way through it. And and a good support system and and and prayers sometimes help.

Tamara Ruggiero: And so, Amelia, just to wrap up, what advice would you give to a child who's been diagnosed with kidney disease?

Amelia Rowniewski: Yeah, you know, I think it's different depending on the age that the child is diagnosed with a kidney disease. But I really think it's so important for people with kidney disease or after they've been transplanted to connect with other patients because it can be so isolating to have to deal with all of this all the time. But uh connecting with other people can really help just know that you're not alone. But then I think outside of that, you have to find uh an identity outside of your kidney disease, outside of organ transplants. I've been really lucky that through my involvement with starting my club on campus student organ donation advocates, I met incredible friends at school who I now still talk to today and I visit back in DC all the time. So, you know, finding a really good support system that you can rely on for help. And then I think, you know, there are gonna be days that are really hard. So I would recommend finding activities or maybe um music that can help bring you out of your head on those days that are really difficult, that you can kind of shut off all the parts of your brain that are worrying or maybe spiraling and just bring you some joy and some peace during the days that are really hard.

Mike Spigler: Well, I want to thank you both very much for joining us today, for sharing your journey and your story. Amelia, uh, I'm sure you're probably going to be sitting here having my job or taking care of me in a hospital at somebody. So we're really glad to get in a good word with you right now. So uh thank you both very much for everything that you've done for the kidney community and for yourselves and for sharing your advice with our audience today.

Wanda Kietlinski: Thank you for inviting us.

Tamara Ruggiero: Thank you both. It was wonderful talking to you.

Wanda Kietlinski: You too.

Amelia Rowniewski: Thank you.

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.