The Kidney Collective: "We Don't See the Depression or Anxiety"

Lupita Ayala: The more open we are about mental health, the more it will become a little bit more normal.

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.

Tamara Ruggiero: Today, we are joined by Lupita Ayala. Lupita is a dedicated kidney health advocate, an AKF Ambassador, and a Kidney Health Coach.

Mike Spigler: Lupita is now a strong advocate for the kidney community and for mental health. She's been open about how kidney disease had an impact on her mental health, including speaking on the topic at AKF's Dialysis at Home Summit in 2025. She hopes that sharing her experience will empower others who are navigating the same or similar challenges. Welcome, Lupita.

Lupita Ayala: Thank you. Thank you for having me.

Tamara Ruggiero: I understand from reading the show notes that you enjoy hiking, which I do as well. How do you find it helps you, physically or emotionally, or both?

Lupita Ayala: I think it's a little bit of both. Some of those hikes are pretty difficult to go through. So it definitely physically challenges me. And I think just focusing on actually getting through the hike kind of clears my mind and helps me distract myself from all the stress or whatever I'm stressing about. So it helps me both mentally and physically. Just being outside getting some fresh air always helps too.

Tamara Ruggiero: What's your favorite hike that you've done?

Lupita Ayala: My husband used to work in Arkansas and Little Rock. So I used to go out to the place where the Crystal Bridges is at in Arkansas and just go around that area. And it was really, really nice. The weather was pretty when I was out there. I think that's one of my favorite ones, just out in nature.

Tamara Ruggiero: Ah I've heard it's beautiful there. I've never been, but sounds great.

Mike Spigler: Lupita, let's get to know your kidney journey a little bit more. So you were first diagnosed with kidney disease when you were in stage 3B. Could you tell us a little bit more about how you found out about your diagnosis and whatever you might remember about that moment, not just your medical kind of physical condition, but how you were feeling emotionally?

Lupita Ayala: My sisters had gifted me a trip to Europe and Mexico for graduation and all of that. So we went to Europe for about a month and then came back, went to Mexico for a few weeks and came back and I started getting UTIs through the whole trip, but I just figured it was because the public restrooms are not always the cleanest when you're out of the country. So I just associated it with that. When I came back to Texas, I had a UTI that just would not go away with any type of over-the-counter medication. So I finally decided to go to an urgent care, which I was nervous about because we, family, we were never really taught to do routine checkups, like we would just go to the doctor when something was wrong. So that was already a little bit nerve-wracking to go to. And, you know, I went in, they gave me some antibiotics, sent me home, it went away, and then a few weeks later came back. And this happened a few times where it went away and came back. After about two months, the doctor finally decided this isn't normal for it to keep coming back so often. Let's do some tests. He did them, came back in the room and said, You have kidney stage 3B. I didn't know what that was. In reality, I thought it was just something that I was gonna take a medication for and it was gonna go away. It was never really explained. They just kind of told me, We're gonna send you to a specialist, they'll tell you a little bit more about it and then go from there. So at the beginning, I wasn't really scared. Well, I didn't really think much of it. I just thought something that came up, we're gonna give medication for it, it's gonna go away. Life is gonna go back to normal. That was not the case. So once I went to the nephrologist appointment, I think that's where all my mental health issues started because I used to weigh 320 pounds. So whenever I went to that appointment, I felt judged. She came into the room and didn't introduce herself, didn't say good morning. She went straight to, You need to lose weight or, You're gonna have to start dialysis. Which, I didn't know how my weight had anything to do with kidneys. I wasn't explained it. So I did leave that office disappointed, upset, and not really believing anything that I was told because I just felt judged. And I didn't do anything about it. I didn't do anything about it for two whole years until I had no other option but to start dialysis, which was even more nerve-wracking and scary.

Mike Spigler: Yeah. Well, for someone that that didn't really, you know, you're going in for urgent care, right? You're thinking this is something you go to urgent care for because, like you said, you get a medicine, you leave, and you get better, right? It's hard for people to understand that. And then, you know, to have that experience with your doctor, which I'm terribly sorry about. I and I wish it was the first time I've heard that, but it's not. I mean, we hear it unfortunately all the time. You know, there's already that power dynamic in talking to a doctor, but then you bring shame or something like that into it. It's so much worse. How would you have preferred that to have gone better? And we do have some healthcare professionals that listen to The Kidney Collective as well. How would you have liked that bedside manner to be different?

Lupita Ayala: I think how my second nephrologist treated it. So he explained everything. He literally went in and told me why I had my chronic kidney disease, why I needed to lose weight, what impact they had to my kidneys, what kidney disease was. I did go through a course where I learned the types of treatment for this disease and learned that there really isn't a cure, which is something that some patients, you know, it's hard for us to hear, but we need to hear it. So I think just being honest and actually taking the time to speak to that patient and let them know, Hey, this is what you have, this is how you can treat it, and then just kind of giving us a little bit of comfort, like you will be okay, you know, you will get through it somehow or another. Which I know some doctors are very hesitant on doing that, for legal reasons, which I understand. But if you're gonna be with this patient for so many years, because let's be honest, if you have chronic kidney disease, you're probably gonna stick to that same nephrologist for quite a while. If you're gonna build that relationship with that patient, you wanna be honest.

Mike Spigler I think that's all great advice. And for those listening, and we can put it in the show notes as well. We have a great course called our Step Forward course, which we have one on CKD stage three. And if you're listening to this and you're in that same situation, we're hoping that program might be able to help a little bit.

Tamara Ruggiero: So then you had CKD for about two years, right? And then you eventually learned that you were in kidney failure. Can you talk about how you found out you were in kidney failure and just what that experience was like, particularly emotionally?

Lupita Ayala: Yes. So once I found my second nephrologist and he explained everything, I did try my best to, you know, change my lifestyle and kind of backtrack a little bit and try not to start dialysis. And I thought I was doing a really good job. And then there was one appointment where I went in and he said, Hey, you're at 6%. You're gonna have to start, you would probably be best off just going ahead and starting. I didn't want to. And I remember I went to this appointment all by myself. I literally left that office and sat in my car and cried for about a good 40 minutes because it was something that I didn't want to hear. Even though I had learned that dialysis was gonna help me, I still had that mentality of everything that I saw on TV. Dialysis is basically the end of it. People die once they're on dialysis. That's what, you know, uh social media and TV used to teach us. So that's what I thought. So when I was told. You have to start dialysis now, it was devastating. I did cry in my car until I calmed down for like 45 minutes and I could drive home. But even after that, for that whole week, it was just a depression episode because it was it was something that I really didn't want.

Tamara Ruggiero: Did you have anybody you could talk to about it at that time?

Lupita Ayala: Oh yeah, I had my husband. He works, he still worked out of state back then. So that day he wasn't here. But anytime that I needed him to come home, he would. And that was one of those instances where I just felt like I could not be alone. And even though I have my family, we all live in the same neighborhood, which is amazing. And I love my dad for doing that for us. So I have my whole family around me, and I could literally walk next door to my sister's house and have the presence of someone. But sometimes I just feel like I need my husband, my soulmate near me. So he's one of the persons that was always there for me.

Tamara Ruggiero: So did the two of you talk through the nephrologist's urgent recommendation that you needed to start dialysis? Did you talk that through and make the decision that, okay, it's time, and what was that like?

Lupita Ayala: I was a little hard-headed. I told him that I didn't want to start yet, which was against his recommendations, and he was okay with it. He said, That's fine, I just don't want you to crash and have to go to the ER. So I will let you know once you're like at 4%. That's the least that I will let you get to. So when he called me and told me that I was at 4%, I still didn't want to, but I went ahead and got a catheter placed in and waited about two to three days and then I started dialysis. So it was it was a hard decision. But I'm glad that I had a doctor who understood me and listened to me and was able to work with my decisions and what I really wanted.

Mike Spigler: Yeah. And I think what you went through is such a typical response. I mean, it's a grieving you go through, right? A grieving from the life and the physical kind of ability you had before to the new reality, but doesn't mean it's a worse reality, it's just a different reality you're going into and having to cope with that. So I think everything you went through and denial is a part of the grief response, right? And coping with that. And it certainly seems very normal. You mentioned you were the star of a great Kidney Today blog that AKF but that talked about how you didn't really have those coping mechanisms ready and prepared. How did you make that shift internally to start to come to terms with this and get yourself kind of back on the path to the new reality you were living?

Lupita Ayala: I think I was just kind of pushed into it. Once I started dialysis, to be honest, at the beginning when I was in center, in the first few weeks, I was like, oh, it's not as bad as I thought it was gonna be. But I did have a chest catheter, so I didn't feel the pain of the needles and infiltration and all that comes with it. Once I started to use my fistula, that's where, you know, all the pain and not only physically but mentally started to come in. And I did take that hard decision, you know, I had that conversation with my husband of stopping dialysis. I had that conversation with my doctor. And at the end of the day, I decided that, you know what, my husband has been here since day one, since I was diagnosed. He's been here for me. And I really don't want to do that to him. I don't want to leave him here with all of our responsibilities. And I was like, I can't do that to him. So he was my motivation to keep going. And since then, I kind of just based it off of him. Like, okay, we're a team, we have to do this together. Um, he pushes me, you know, whenever he sees that I'm kind of going into depression, he'll be like, nope, nope, nope, let's get back together. Let's get out of it. You got this. So he motivates me a lot and kind of pushes me into it. Um, but then after, you know, I got to seeing like, hey, dialysis isn't the end of life. I started to see how other people were feeling the same way that I was feeling. And I wanted them to see, like, hey, dialysis is not the end. There's a lot of other options for us. In center doesn't have to be your only option. I wanted to just kind of put that out there for everybody to know that dialysis is not the end of our life.

Mike Spigler: You did some home dialysis as well. Could you talk a little bit about that experience and how you found out about it and what you gained from that differently, not only from a physical perspective, but also from like a mental health perspective?

Lupita Ayala: Physically, it was a lot better for my body. It was a lot lighter. Uh, so I didn't have all the side effects that I was feeling in center, the passing out, the low blood pressures, the fainting, vomiting, cramping, all of it. It kind of went away uh because it's a much slower treatment. And then mentally, I felt like I had to gain my life back because I could go back to feeding my animals, to washing the dishes, to you know, loading the laundry. I didn't have to depend on somebody to do all of that for me anymore. So mentally it helped me a lot.

Tamara Ruggiero: What would you say to somebody who is just about to start dialysis and they're starting with in center? What advice would you give them?

Lupita Ayala: In reality, learn. Learn as much as you can about all modalities. B because you're starting in center doesn't mean you have to stay there if it doesn't work. And if you leave in center, it doesn't mean you can't come back. So just learn as much as you can and know that you will be okay. You will, you know, adapt to this new normal. It'll be hard, you'll get there.

Mike Spigler: I think everything that you've talked about dealing with mental health is something, you know, there's been a stigma in in in this country for years around mental health. And I think we're finally seeing the tide turn a little bit and hoping this season of The Kidney Collective can help that a little bit too. But you know, there's also different, you know, challenges and expectations and experiences with different families and communities and cultures. And you've talked about this before, that in your own family and community in Mexico, that mental health is not something people really talk about openly. So can you tell us more about that and what that was like and how you dealt with that?

Lupita Ayala: Yes. So for a very long time, actually, since I started dialysis, I did notice that I was kind of showing signs of depression. And I didn't say much about it because I've heard, you know, my own family say, like, oh, therapy and psychologists are for crazy people. Um, no normal person goes to therapy. And so I didn't want to be considered crazy. I was already going through too much to be considered crazy. So I kind of kept it to myself and kind of didn't know how my family was going to react to my mental health. And then my husband finally told me, like, hey, this isn't this isn't okay. You can't continue like this, you're not gonna get anywhere if you continue this way. You need therapy. And I agreed. And for about six months, I went to therapy without anybody knowing. Once I finally told my mom, which was the hard pill, um, I think that was the hardest one, and she understood. I kind of felt better about coming out to everybody about it. Just because my mom was very adamant about you know, therapy is for crazy people. Once she saw everything that I was going through and realized that okay, maybe she does need help going through all of this, and that doesn't make her crazy. Um and she kind of got the hint that I needed help um and accepted it. It was it was a relief. Um, but it was it was good, but at the same time I knew like there's still gonna be people within my community that are gonna be like, You're still crazy, you know? Uh, but it's just something that you kind of have to tell yourself like it doesn't matter what anybody else thinks as long as I'm okay. Um, which is hard to do, but we can, we can definitely do it.

Tamara Ruggiero: I'm not sure if this is true or not, but it almost sounds to me like it was it harder to tell your mom about going to therapy than it was to tell her about kidney failure and starting dialysis?

Lupita Ayala: Oh God, yes. Yeah. I think it was a lot much harder to tell her about going to therapy than to that I had to start dialysis.

Tamara Ruggiero: What do you think needs to change about approaches to mental health for people to more readily accept that therapy is an important form of treatment and needs to be destigmatized?

Lupita Ayala: I think we just need to re-educate the older generations. I think it's more often the older generations that think this way and just kind of re-educate them, re-educating everyone about it and kind of just being open about it because the more open we're about mental health, the more it will become a little bit more normal.

Mike Spigler: I think it's great advice. And I think now, you know, you've you shared with us that you got a transplant in uh July of last year. So you're coming up on uh as we're recording this, your kidney-versary. So congratulations on that. Um, what was that like um, you know, from an emotional roller coaster of, you know, I know it's a lot of work, um, but it's good work uh to get listed and stay on the list. Um, you know, how did you handle the stress of that? Let's start there on that part of the transplant journey.

Lupita Ayala: It was a little nerve-wracking um, because like I like I said, I I used to weigh 320 pounds. So they did tell me I needed to lose at least 150 pounds to get on the list, which at the beginning I was like, oh, that's gonna take me years. I'm gonna be on dialysis for years. Um, I've been already trying for years to lose weight, and it's just been difficult. So I can't imagine how much more difficult it's gonna be being on dialysis and trying to lose weight. But I I had a team who heard me and understood me and saw how much I was trying. And, you know, they did recommend bariatric surgery, so I went through that, which was a whole other monster in itself for mental health, because I didn't realize how much I was eating my emotions. Um, so after I had bariatric surgery and I physically couldn't do that anymore, I had to confront my issues and my traumas and go through all of that. So that was that was scary um and it was hard. And then just any everything else, you know, um controlling my blood pressure, making sure that I was compliant on uh treatments and making sure that I'm doing my labs and it was work to get there, but it was definitely worth it.

Tamara Ruggiero: What would you say to someone who uh just feels hesitant about asking for mental health support while they're living with kidney disease?

Lupita Ayala: You don't openly have to come and tell everybody, even listening or talking to somebody that you really feel comfortable to, like you know, talking to, start there. Start talking to somebody that you really have confidence with and you feel comfortable talking to, and then kind of graduate from there, which I feel like that's what I did. I talked to my husband as much as I could, and then when he was like, Okay, I don't think I can help you anymore, I think you need help. That's when I started to reach out. And I didn't I really didn't go to my to my doctors about mental health. I searched my own psychologist and I and I went that route on my own without reaching out to my nephrologist or my social worker. But for the most part, you know, your social worker is there for you. That that is what they are there for you for, to help you get that help. If you have no idea where to go to, your social worker.

Mike Spigler: I think a big takeaway that that I hope everyone's hearing is just don't be afraid to ask for help. I mean, people are there to help you, they're willing to help. There's services there to help you. Even if you don't have that support system at home, there are places that that can help you free or otherwise. And certainly AKF has some resources in our community resource finder to help you find that if if you need it. So I know it's a a huge struggle to get on the list and go through all the testing, but tell us about when you got the call that a kidney transplant was available. You know, what emotions were you going through then? And I'd love to hear kind of like your feelings after transplants.

Lupita Ayala: When I got the call, I was kind of in shock and in denial. Like, there's no way this is happening. Everybody kept telling me that call is gonna come in when you least expect it. And I was like, there's no way. There's no way it's gonna come. I'm always gonna be ready for that call. I was not ready for that call. Um when I when I got that call, I was at home alone. And, I really, I really didn't expect to get it. I in reality thought I was getting a call back from my team because the day before I had my uh six-month follow-up appointment. Um, so I just thought, you know, they were gonna call me to tell me, like, hey, you need to work on this or work on that. And it was that they had a kidney that might be mine. I was the third option for this kidney. So once I heard that, I was like, okay, it's probably not gonna be mine. I went all Friday and all Saturday until Saturday at 8 p.m., kind of trying to not think about it and trying to distract myself, went hiking, went shopping, went and did my nails, trying to keep myself busy, not to think about it, because I'm an overthinker. So I knew that if I just sat home, I was gonna be overthinking it so I distracted myself as much as I could. And then at 8 p.m. when I got that call on Saturday, and they told me, hey, how fast can you get to the hospital? I didn't believe it. I couldn't believe it. I did run next door to my sister crying, let her know, like, hey, I just got the call, we need to go. My husband was actually coming home from work that day. I think he was like 45 minutes away. And so I called and let him know. Once we got to the hospital, I was still shocked. I couldn't believe it. I think even when I woke up out of surgery, I was in a lot of pain, but I still couldn't, I couldn't believe it. Like it was surreal. And then slowly but surely the anxiety started to set in because it's a different normal. It's getting used to a different schedule, a different life, a different paying attention to different signs your body's giving you. I found out that my kidney came from a seven-year-old little boy, and that spiked a depression episode. You really don't expect to feel grief for somebody. Um, but as a 20 well, I was 31, as a 31-year-old at the time who had been trying to have kids, learning that I got a kidney from a seven-year-old was very, very difficult. And I grieved for a long time. And even now I still, you know, sometimes sit down and I cry because I'm like a seven-year-old died for me to have this this opportunity. But it also became the feel to my to my day. It's why I get up and I advocate and I do everything that I do because that little boy had, you know, that opportunity to give me a chance to continue to do this. So it's hard. Anxiety is a lot much more higher than it was before, which I was not prepared for. I didn't expect it. I thought, you know, I was gonna get a transplant, everything was gonna go back to normal, my anxiety, my depression was gonna go away, and it was not that way. And most of the time we don't we don't see that, you know, we see somebody that has a kidney transplant and they start living life, and we don't see the depression and the anxiety because you start to feel a certain way and you have to call the doctor, hey, I'm feeling this way, you know. So in reality, I didn't think about mental health after transplant. And it's such a big, big thing.

Tamara Ruggiero: I think we see people on the outside and how they're acting and living post-transplant, and they seem great, but I think the experience that you're describing is so common, grieving for the donor who gave their life, um living with this constant anxiety of making sure that you're completely on top of your labs and your medications so you can keep that kidney healthy can be very difficult. And I think that's something that we hear from people all the time who've had kidney transplants. So I think for anybody listening to this, I think it's really so helpful that you're sharing that because I think it helps to reinforce that a kidney transplant is a treatment, it's not a cure. And there's a lot on the mental health side that goes along with that.

Lupita Ayala: Yes, yeah. A lot. I didn't expect the anxiety to be as high as it is, and that anxiety spikes every single time I, you know, have any type of symptom, like am I rejecting? Am I, what's going on with my body, what's going on with my kidney? The fact that I have to, you know, run to the emergency room because of all these symptoms is already scary. And then still having to deal with the anxiety, the feeling shortness of breath because of my anxiety is even more hard.

Tamara Ruggiero: Is there anything that you wish kidney care teams understood better about mental health?

Lupita Ayala: Yes. So I feel like a lot of the times they know that kidney patients suffer with depression and anxiety, that they kind of brush it off and tell you, oh, it's anxiety. But I wish they would explain a little bit more about it. If I would have known that my anxiety was going to be higher after transplant, I would have prepared for it mentally. You know, I would have put myself in that situation to where like, okay, remember that somebody's giving you this kidney, someone passed away. Prepare yourself to know all this information. Prepare to look out for these symptoms, prepare to look out for the set side effects of this medication because I that's something that I didn't get. I didn't know what medications I was gonna go on until I woke up from that surgery and I was told. So if I would have known exactly what medication I was gonna go on, I would have looked into the side effects. What am I gonna be feeling after? How is this gonna affect my mental health? How can I prepare for it? You know, how am I gonna be able to cope after transplant and just them giving us a little bit of encouragement would have helped.

Mike Spigler: Well, I want to give you a lot of encouragement because you've done a great job today and you've been so courageous to share your story, not only today, but in in previous webinars that we've done, our blog posts, and we'll link all that in our show notes. You know, we can't really make a change in our society and accepting and embracing mental health unless we're very open about, all of us need it at some point in time. And I really truly thank you for sharing your story today.

Tamara Ruggiero: Thank you guys.

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. And remember that even in the toughest moments, there's hope ahead, and The Kidney Collective and AKF are here for you now.