Joey Wahler (Host): It affects thousands of people in our communities, yet many don't fully understand the daily challenges and resilience it demands. So, we're discussing kidney disease, sharing a powerful and deeply personal patient story. Our guest is Elizabeth Villareal. She's a courageous patient, navigating life with end-stage renal disease while undergoing nightly peritoneal dialysis. Her journey, one of strength, vulnerability, and hope as she awaits a lifesaving kidney transplant.

This is the Sinai Chicago Health and Hope podcast, where caregivers from Sinai, Chicago share insights, updates, and important advice on the health topics impacting our communities. From the latest in medical research to practical tips for improving wellness, doctors, nurses and health professionals are here to help you and your families take control of your health. Thanks for joining us. I am Joey Wahler. Hi there, Elizabeth. Welcome.

Elizabeth Villarreal: Thank you for having me on the podcast.

Host: We really appreciate you sharing your personal story. So, you are awaiting a living kidney donor, which we'll discuss further in a few moments. But first, what initially led you to your kidney disease diagnosis, and how did you first learn you needed dialysis?

Elizabeth Villarreal: Well, it's been a long journey. I've been living with diabetes for 33 years. And actually, it came to a realization that I would need a transplant, I want to say back in 2023 or 2022. I actually was seeing Dr. Serrano at Sinai, and he was the one that actually guided me and told me to start looking for dialysis or transplant clinics.

Then, in 2023, November, I had a heart attack. So, it was like a perfect storm waiting to happen. I had several chronic illnesses that all came together beautifully in a perfect storm, medically speaking. And during that heart attack, they had to do an angiogram, because I had a left branch completely blocked. And they used contrast during the angiogram and I walked out with a kidney function at 8%. So, that's when I realized that, "Okay, my life has drastically changed, and this is going to be my new normal."

Host: And so, how did you initially process and deal with all of that?

Elizabeth Villarreal: Oh, I don't think I fully have processed it and recuperated. It's been one thing after another, just having a heart attack, because people say, "You're so young." I survived that, survived cardiac rehab, and then began the journey of peritoneal dialysis, which every day is an everyday thing. I can't forget about it. It's something I have to do, but it's allowing me to live. And so, I really just have to take it one day at a time. I joke around and I say I'm on a rollercoaster ride that I just can't get off.

Host: I'm going to ask you about the dialysis in just a sec, but even with all these daunting health challenges, to still be alive and able to function, that's got to be something positive for you.

Elizabeth Villarreal: Oh, yes, yes. What I didn't know about kidney disease, it's silent. And most of the time, by the time they diagnose it, it may be too late, meaning that you'll need dialysis. And I didn't know that my body was slowly getting poisoned by the toxins. And so, I had a hard time focusing and concentrating and eating. And then, once my nephrologist said, "No, that's it. Let's start the dialysis," once the dialysis began, I could feel like this cloud was lifted from my brain and the old sassy me started coming back. And so, I realized how much the disease was taking away from me, but I realized that dialysis is my lifeline. But it also means that I need to go to the doctor, watch what I eat, and still take care of myself. It's not a get-out-of-jail free card, "Go, you could do whatever you want."

Host: Very well put. It sounds like you're doing a great job under the circumstances of accepting the situation and trying to forge ahead. So, what does a typical day on peritoneal dialysis look like for someone like you?

Elizabeth Villarreal: So, I usually at about 8:30 start winding down my day. I start getting ready to take my medications, take my vitals, because with peritoneal dialysis, you need to weigh yourself, take your blood pressure, take your temperature, that's all important to figure out the prescription of the bags that you need to use for dialysis. Once I have completed all that, then I connect myself to the machine. Once I'm connected, it takes eight hours of treatment. So basically, it drains first time, it drains any liquid that's left inside of you, then it fills you up with a solution. It dwells whether it's for 86 or 92 minutes, then it drains again, and it repeats. So, it's four cycles for me, eight hours a night. And then, when I wake up, I need to disconnect. And then, again, I weigh myself, take my vitals, and turn off the machine.

Host: And this is done where exactly?

Elizabeth Villarreal: It's done in my bedroom, in my bed at night. So, it's convenient when at home, but I have been able to travel. But when you travel, you have to take your machine, your boxes and all your supplies. And it looks like I'm going somewhere for months, but it's just for a few days because it's important not to miss your dialysis.

Host: Oh, absolutely. I'm sure that's true. So, what would you say has been the biggest adjustment to going through this?

Elizabeth Villarreal: Well, just the actual operation, having this foreign object in my abdomen, not be able to wear jeans like I used to. it's very uncomfortable the first few months. And it's just adapting to it. You can't do everything you used to. I can't swim. I can't go into a sauna. It's taken some things from me, but it's given me the ability to live. So, I have to remind myself that I have that catheter, because sometimes you can pull on it in the middle of the night, and that's a little painful. And it's just being very mindful of it. So, it's made me more mindful and aware of my body more than ever.

Host: And speaking of which, you led me beautifully into my next question. I'm sure some joining us right now would be wondering, while you're actually going through the dialysis on a nightly basis, what, if anything, can you do to take your mind off it at the same time?

Elizabeth Villarreal: This may not sound healthy, but I binge watch some TV because sometimes it helps to escape. And in the midst of all this craziness, I did make the decision to leave my full-time job. I finally made my health a priority, which I wasn't-- and I'll be very honest, I wasn't before, I was working and that was my priority. And now, I'm also in the process of completing my dissertation. So, I figured I might as well complete things I needed to complete. Catching up with friends, volunteering has kept me grounded. My faith has been my guiding mechanism in everything. But it's just being surrounded by the loved ones and reminding myself that maybe today was a rough day. But tomorrow, it's going to be better.

Host: That's an awesome outlook that I'm sure anyone in your situation would aspire to have. So, it sounds like this whole experience has also been something of a wake up call, if you will, and has motivated you to concentrate on some things that you weren't before, right?

Elizabeth Villarreal: Yes. It really allowed me to minimize all the noise of life and to realize through this experience what is really important, what really matters, and to really focus on that, because that's what's going to help me get through this.

Host: No question about that. So, you say you've learned to accept this vulnerability right now. How would you say this journey has changed your perspective on things like strength and resilience?

Elizabeth Villarreal: You know, I never thought I was a strong person, but given everything I've gone through, I've realized that I am. And my vulnerability is my strength. It's what makes me human. It's what allows me to be who I am. I could tell everybody, you know, everything's beautiful, everything's wonderful, but that would be a lie, because there are days where you question your mortality. There are days that you question everything, and you're like, "I could have gone back" and said, "I could have done things differently." And now, I'm learning to live in the now and to leave the past behind because I can't change it. No matter how hard I try, I cannot change it. And it's focusing on the here and now and really connecting with-- I could tell you the PD clinic that I go to, they're like a godsend, because they remind me of how strong I am. My husband reminds me how strong I am, my son. And I realized where I was when I had the heart attack, where I could barely walk. And after the heart attack, I had it in November and May of the next year, I was able to walk a 5K. So, I realized that it's about your mind and focusing on what you need to do.

Host: Kudos to you for that. I want to switch gears a little bit, Elizabeth, you mentioned your husband and your son a moment ago. And of course, living with chronic illness can be isolating for someone like you, what role has support from family, friends you mentioned, or even the community played in this journey of yours?

Elizabeth Villarreal: It's been important because it reminds me that I'm not alone. When I'm feeling sad, they lift me up. But then, there's another side to it because I do tend to look good. People tend to say, "Well, you don't look like you're sick. Are you sick? Are you sure you're sick?" And so, it's like a double-edged sword.

And I think what I've realized through my whole experience is sometimes people don't know what to say. Sometimes people are scared of facing their own mortality or their own emotions that they're kind of taken aback. because I was the healthy eater in my group. I was young, you know, no one thought that this would ever happen to me. And when it did, it made everybody like kind of take a breath and think, "Okay, if it happened to her, it could happen to me."

Host: That says it all right there. What are some of the biggest misconceptions you would say people have about dialysis or kidney disease in general, that you have an opportunity to clear up right here, right now?

Elizabeth Villarreal: Well, like I said, people think, you know, that I look good, because it's just it is. And I always say, you know, "This glow is brought to you thanks to peritoneal dialysis." But there are two types of dialysis, and I didn't know myself until I started this journey. There's the hemodialysis, which is where they take out your blood, they cycle it, and they clean it, that you can only do three times a week. I opted for the peritoneal dialysis, which is less invasive. It's less aggressive on the body. It fills up your peritoneal cavity with a special solution, but you have to do it every day. But there's a little more flexibility in what you can eat. I'm not saying go crazy, but you also have to make sure you're eating enough protein because the dialysis pulls protein from you.

I think with anyone facing kidney disease or any chronic illness, sometimes people don't look like they're sick. And it's an invisible disability, and people may not be aware of it. And I wish that people would be more gentle and kind to those that are struggling, because everyone's facing this in their own way. And the best thing to do is just say, "Can I help you by sending you this? Can I help you by doing this?" Going with someone to a doctor's appointment, because it could be a little overwhelming and scary to constantly go to doctor's appointments and you're alone. Just being that support. But I think before you say something to someone, think about if you were in their situation, what would you feel? Because that's the one thing I realized that people always tend to say, "Well, you don't look sick, so you shouldn't be sick." But that's not always the case.

Host: Definitely something for people to keep in mind as they approach others. A couple of other things. As we mentioned near the top, most importantly here, all this other stuff we've discussed is kind of orbiting around the fact that you are in need of a living kidney donor. So, what do you want those joining us to know about that and how they may be able to help people?

Elizabeth Villarreal: Well, I never thought about being in this situation. And I have my driver's license, I always marked off to be a donor. And I don't think that we really think about it until it hits your home or it hits someone that you know. But if you can be a donor, it's helping to save a life, right? It's giving me opportunity to spend more years with my husband and my son to fulfill some more dreams that I still need to complete, to keep living. And I'm not the only one in this situation. There are many others that are in this situation. And so, to think about it, and I know sometimes it's difficult. I came close to being a possible match for people that had passed away that were on life support, and their family thought of me in their time of grief, which is not easy.

And as a person that would be able to receive an organ from someone, I would see it as a second chance, and I would value that organ and make sure that I'm doing right by it, because it's something that I need to take care of. I'm currently on a waiting list, and I'm at the transplant center at Northwestern. And if anyone is interested in donating to me or even donating to anyone, just look up the Northwestern website, look to see what it is to become a donor. There are a series of questions that you have to answer. And the positive about it is that you get a real thorough background medical check that they're able to catch anything. So in case you're not a donor, you're aware of things, but also it's a good checkup that you don't have to pay for. And you're helping to save a life. The living donor would be ideal because that means that the kidney has a better chance of surviving. And at this point, you know, I'm just putting it out in the universe, whoever finds it in their heart, to get checked, to get tested for myself or someone else. You don't know the beautiful gift that you would be giving someone.

Host: Well, in summary, you've touched on it already, but just to kind of put a bow on this, if you will, what keeps you motivated Elizabeth, and hopeful as you wait for that kidney transplant? Your life-- I am thinking about it as you're talking about it-- someone in your shoes, your life is literally in someone else's hands, and yet you don't even know who that person is yet, right? And so, of all the different things, and you've talked about some of them that you do to stay positive, what's the one go-to thought that helps you get through the day as you're waiting on the list?

Elizabeth Villarreal: Well, the thing that I've really learned about this experience patience and learning how to surrender. I'll hate to admit I was a control freak. I wanted to control everything, make sure I was aware of everything. But in this situation, there is no control. The illusion of control is lost, and I have to be hopeful that the universe will put the right person in my path that will be that donor for me. That's what keeps me hoping.

And it's my faith, right? In the Catholic faith, we say, you know, surrender and give it to God. You surrender the situation, and it's almost like you're releasing and you're trusting in the process. Because hopefully, once I have my donor, the journey has only begun, because the transplant and the afterwards of the transplant, this is really a lifelong journey that will truly never really end. It's a temporary solution for my situation.

But what I really want to get out there is for people to really value their health, to not fall into this situation. It's scary to go to the doctor, because you don't want to find something that could be wrong. But it's important to get ahead of it, to plan with your medical team, but also to be an active participant in your health, to ask the questions, to follow directions, to be honest with your medical team. Because it is scary for everyone, but they're are also human beings that are making decisions about your life, and it's only fair that you as a patient be active in that decision-making as well. It's not all on the physicians. We as patients have to take accountability for our actions and for the goal and the path of healing our bodies.

Host: Yet again, very well said indeed. Folks, we trust you are now more familiar with kidney donation. Elizabeth, thanks so much really for sharing your story. It's amazing to me after getting a chance to meet you here, that you're so positive and grounded and wise, really. And thinking about the big picture, thinking about others, not just yourself, which I'm sure is not always easy. And so, best of luck in receiving that donation. Again, folks, she says her vulnerability is her strength. I'm sure it's something we can all be inspired by listening to you today. I know I am for one. And so, best of luck. I hope only for the best of health for you going forward from here on.

Elizabeth Villarreal: Thank you very much.

Host: Absolutely. And for more information, please visit sinaichicago.org. And if you found this podcast helpful, please do share it on your social media. And thanks again for being part of the Sinai Chicago Health and Hope Podcast.