The Kidney Collective: "My Will to Live is Stronger Than This Disease"

Della Major: I think it's very important for any new patients who's coming on, understanding this journey, and especially when they got multiple challenges happening at the same time. Take a pause, take a breath, go in a path that's going to help you to create the best normal that you can, in spite of the challenges you might be facing.

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.

Mike Spigler: Today we are joined by Della Major, an AKF Ambassador and Kidney Health Coach. Della's kidney disease journey began in November 2011 when she was diagnosed with kidney failure due to lupus nephritis. She was on dialysis until she received a transplant in 2019. During that time, she became an outspoken patient advocate, sharing her story and educating the public on kidney disease as much as she can. Della, thank you so much for being here.

Tamara Ruggiero: Thank you for being here, Della. So before we recorded today, I took a look at your LinkedIn and I was really struck by the fact that you have spent your whole career, I think, helping people learn and grow and become more capable as first as an IT trainer for many years, as a high school math teacher, and then as a health and life coach. And I was just wondering, where do you think that instinct to guide and encourage other people comes from in you?

Della Major: During uh my time as an IT professional, I happened to attend a parent-teacher conference at a high school for my sister. And I was taken aback at what I saw as it relates to the grading and uh the lack of students and what they were doing and how they was achieving. And it took me back to when I was in high school and I had a high school counselor who really encouraged me and said that in spite of all of my behavior patterns, that, you know, I was a little rebel in the rough. So, but he said, in spite of all that, you was a natural-born leader. And it's gonna come to the point where you have it's a crossroad. And at that crossroad, you got to make a decision as to which way you're gonna go. It brought back during that parent -teacher conference, it brought that back to me. And I kept saying, where are the mentors? Where are those individuals who's gonna pour back, who's gonna help that generation that oftentimes people would like cast away because they think that they are unable to learn. And I just felt it's like a ministry. I felt a strong pull to really pour back into the system and teach those at-risk students. And so uh I left corporate professional and went into education and I never looked back because I always believe that, you know, learning is just not filling of a pill, but it's a lighting of a fire. And that's my motto that I have with [...]. And I believe that if you give the same resources and you give information and knowledge to help the person to learn, then it's you can imagine what kind of change that they could have. And so, in in relation to the kidney, my focus point has always been a well-informed patient is a healthy patient. And so I felt that it was a lot of disparity, and I felt that it was an opportunity for me to make sure that anyone else who's going down this journey, that there's somebody they could connect to and I can pour back that inspiration and let them know, you know, kidney disease might be a diagnosis, but it doesn't dictate the outcome. It was a lot of information I just didn't know. So after I got over the shock, after I got over the despair of receiving the diagnosis of dialysis and everything like that, it I just decided that I was gonna dictate my outcome. And that outcome is gonna include me sharing whatever I learned with others. And so that passion has never dimmed. So it stems, it stems from that.

Tamara Ruggiero: Yeah, that's that's wonderful. And you're and you are helping so many other people now do just that, right? So take us back to when you learned that you were in kidney failure. What happened?

Della Major: O. M. G., what a crash that was. I was uh after school director, and we were doing our summer program, and I was in my classroom instructing some students on a particular um object lesson that I was instructing. And next thing you know, I passed out, literally passed out in the classroom. And so you can imagine you got 30 students looking at their teacher pass out on the floor. And as I was recovering, I kept thinking, oh, that's because I was just doing too much. I'm always on a go, and maybe, you know, everything, I just tired myself out. And it just happened the next day, I barely was able to get out of the bed. And so I had a friend who also was an educator. She was able to rush me to the hospital. And from the moment from my house to the actual emergency room to the clinic, everything, my systems were shutting down. And unbeknownst to me, while I was in the, you know, it's a ward light, and it's the red zone, the red zone, somebody is serious. Um, I'm listening to the doctors tell my daughters what was happening. It was not till the next day that I had this doctor come in and start talking about lupus nephritis and all of this. And I had to stop him because at that time I'm already overwhelmed with tubes and everything coming on, all, you know, all on my body, and I'm just trying to figure out what's going on. And I said, You got to talk to me like I'm a two-year-old. Make it plain. And he said, You have lupus, and lupus is attacking your kidney, but we need to do a biopsy to find out and to confirm. And so that was in literally 2007, and that's when I found out I had lupus, and that's when I found out that I was already at stage four, renal disease. And so uh he was trying to break it down to me as to the various stages. All I heard at that time was in, and all I heard was die. And you know, dialysis, only thing I heard, I'm dying. End stage renal disease, all I all I heard was it's the end. So I was trying to get my life together, get my family and everything like that. But uh, it was like six, no, seven months later, um, from the time that I first received diagnosis when I went through the orientation and then immediately starting dialysis.

Mike Spigler: It's such a human condition to kind of um discount things that you're feeling and even passing out and thinking, oh, you know, I'm just doing too much, right? None of us wants to believe that anything is really happening to us. Looking back even before that, are there symptoms you're like, you know what? Oh, that that probably was because of this or that thing's happening. Did you did you have any symptoms before that?

Della Major: You know what is so important, Mike, uh, that it's so important we share that because other people was noticing my outer appearance was changing. You know, the T-zones, uh, the ashen face. I was looking very like pale skin. And you know, with lupus, you got discord, you got the T-zone rashes and everything, you know, the rashing in my head, my joints, besides all of these things were happening. Then my sleep was very nostalgic. I was always tired, physically tired. And then I start having like these little pains in my lower left and right sides. And I didn't understand that. I just chopped it up to, oh, I'm not drinking something, or maybe I drink too much water, or I had too much pop or whatever. Not in a million years would I think about, first of all, kidney failure. Uh not in a million years where I think about I'm not drinking enough fluids. Not in many years. These are symptoms that was happening until I crashed and started learning a little bit through the doctor, as including myself and my research, then I'm like, I did have that. Oh man, that's what's happening. You know, I started picking out like all these signals was happening. Your body's gonna tell you now. It was already doing that, but it took me to crash, it took me to go through all of that for me to understand things was happening, and I just ignored it, like you said. And I'm telling you, for any other patients or potential people who maybe just coming into this, the unknown, it might be scary. But you know your body better than anything. And if you're doing things that, contrary to what you used to do, that's those aha moments that you need to start paying attention to. And that was something that I ignored. But now, you know, this is what I share during my webinars, any kidney screenings that I participate in or, you know, host myself.

Tamara Ruggiero: So you were having to, I mean, I can only imagine how challenging it was because you had to sort of integrate knowledge of kidney failure and lupus at the same time. At the same time. Um, and probably, I imagine you probably did not know a huge amount about either condition.

Tamara Ruggiero: Yeah, that makes a lot of sense. It's hard to sometimes translate health information for a lay audience, right?

Della Major: No, I did not know anything about that. It took my nephrologist at the time at the county hospital. That's where I started this journey. He was very personable with his patients and helping us to really get a good understanding. So I consider myself blessed to have had the head of the nephrology department to be my, you know, spiritual doctor to help me. And then at the same time, um, he understood the importance of me to know what was going on because I was very involved. I've always been involved in my journey uh since day one. So, and as an educator, you're gonna do your own research. And so when I started doing my own research, I had to do it in twofold. First, I had to understand why, the why behind this. What is lupus? How did lupus start impacting my kidneys? What was really going on? What was the scarring? How my joints was feeling. And then the second phase happened when I started doing dialysis and understanding the whole process of that and what was going on. Why was it important for me to be going through this and having my blood taken in and taken out? Unbeknownst to me, I didn't realize that if I did not, if I were to continue on neglecting and, you know, really going against the treatment, because I didn't want to start dialysis right away, because at the same time, it was impacting every area of my life. I wanted to go to work, I wanted to do the same thing. But I realized when I couldn't breathe one day, one night, and I was up afraid because I was afraid to go to sleep, thinking that I was not going to wake up because of my lack of breath. Then I start understanding the impact of not doing your dialysis treatment, the impact of not even doing dialysis alone. I'm speeding up. If I didn't want to die, I'm sure enough speeding it up by not doing the treatment. That's when I start planning how do I fight on this good front? How do I live with lupus, but yet still create a life that I'm not ashamed of while doing dialysis? And so I start, instead of me being negative against it, I start trying to figure out how do I create my new normal. And I think it's very important for any new patients who's coming on, understanding this journey, and especially when they got multiple challenges happening at the same time, take a pause, take a breath so that you can articulate and you can really go your go in the path that's gonna help you to create the best normal that you can in spite of the challenges you might be facing.

Tamara Ruggiero: It sounds like you had to go through almost like a step-by-step process. Literally. It was to let go of the vision that you had for your life and what you thought your life was and step into this new life that was completely different. And and you know, you certainly weren't expecting it. And even even the decision to start dialysis sounds sounds to me like it took a little while to accept that you had to do it and and why you had to do it. And I think that's very common for people.

Della Major: Yes, it did, because look, I had three losses. First, it was my health, second it was my marriage. All this happened all at the same time, and then two years later, it was my mom. All of this happened, and those losses didn't leave me enough time to grieve. And the grief behind everything was really, really heavy. It was it impacted me in such a way that I couldn't even imagine. Once I officially said I was gonna go into dialysis and do starting my treatment, the very first day on the dialysis of my treatment, that's when I broke down. I realized my life was not gonna be the same that I chose. And I'm looking down with a catheter tube coming out of my chest, and I'm 42 years old. I'm trying to figure out, you know, personal relationship, who's gonna want to deal with this. And I felt that this journey was the people that would have been my support, they already gone. And it was just overwhelming. And uh dealing with that grief um really impacted me as to whether or not I wanted to even continue. But I must say, it was a patient two seats down. She was a much older patient, and I was listening to her cry out out loud at her dialysis chair, saying, God, just take my life. I don't want to do this anymore. And it was just something about her words that took me into a fight mode, not a flight mode. And I literally turned to her and I said, Mama, we're gonna do this together. We're not gonna let this take us out. And when I, the moment I said that, it took it off me and put it on somebody else. And so now I have purpose. I felt the purpose came in because now here it is, somebody who can identify with me, much older patient, but yet still we're going through this. And so that grief turned into a fight mode, and that fight mode turned into empowerment. And so that started my journey of advocacy. That started my journey of helping people to understand we don't allow our situation to dictate our outcome. And so I really uh contribute this everything that I do now and could gonna continue to do for probably the remainder of my life to her because it took her and those words to put that, okay, no, you ain't gonna be victorious on that. Of course, my faith, but you're not gonna take over it for me. And that's when I started this journey of advocacy. I wanted people to really understand what was happening, understand the jargon in the most simplest way, you know, because sometimes medical profession talk medical, but at the same time, when you're talking to a human, you gotta break it down like that too, yo. So I was taking what I understood, medically speaking, and you know, and articulate in a simple way to I can get those aha moments with other people, patients like myself.

Mike Spigler: Yeah. I mean, you really take someone that's going through something similar to really be able to connect. And because it's so hard sometimes when you're going through a major health event or grief or whatever it is, you know, the loss of someone close to you, to if you don't really haven't experienced it, there's just a kind of a wall I think that goes up when when someone else is trying to talk to you. Um, what are some of the the common misconceptions or or questions that you encounter when you're educating uh other patients?

Della Major: Because it's such a lack of understanding of the various dialysis treatments, you know, when they look at the machines and when they uh understanding the whole process, one of the things is they come in with this negative mindset. They come in like, I'm just gonna die, why I even have to deal with that. They don't see any hope. And some of the jargons that is being uh provided, like an orientation, you know, giving a patient who never gone through this and saying PD or HHD and all of that. And it's like they sitting here so overwhelmed, they just thinking, why do I even need to go through that? I might as well just be done. And then they're thinking they don't have, they can't travel, they can't live, do anything else, they're stuck in the house, nobody else is gonna, I mean, their whole uh outlook of life is done. So it's like automatically, I'm gonna die. So why should I even be bothered? So that's where non-compliance comes into play. And then because you are, you know, looking at everything and you seeing on one group of culture, it seems like everything is going great. Because when they talk about transplanting, they like, ooh, that's it, they make it sound like that's a cure. And I'm over here, I don't have people that's ready to want to get tested as a transplant. And they thinking, you know, you can't even get that. But the whole thing I had to do is transplant as a treatment. And you got to treat it as a treatment if you're able to do that. And so it was a lot of these myths about, you know, what your body goes through, a lot of the jargon, a lot of the conversations about just dialysis as a whole and the negative uh connotation behind it. So I had to let somebody know. And I thank, uh, thank God for a friend of mine, his name is Jim. I can't think of his last name, but he used to do this campaign, DML. Dialysis Means Life. And so when we went through that campaign with him, it made sense because if I if it's the truth behind it, dialysis is giving you an opportunity to live. And so I had to start spinning it to make it seem like don't treat this as if something bad. Your life ain't over. This is a process. And you got to know through the process till you get the sense of freedom. So a few things that come along the line from transplantation, dialysis, and your medications, all of these types of things. You know, so many myths and so many things that was happening.

Mike Spigler: Do you want to walk us through? So you you were able to get a transplant in in 2019. Can you talk about that journey? Was it a living donor? Was it a deceased donor? Um, you know, what did you learn that you didn't know about transplant during that process?

Della Major: My first kidney transplant, you know, one of the things that they shared with me is the, I guess, the expectancy, the life expectancy span of that kidney. And so they said that as it is a it was a high risk, but they anticipated and gave it a life expectancy of five years. And they asked me the question as to whether or not I still want it. And I was like, of course. And one of the things I shared with them is like any dialysis patient will want, even if it was just one year, will be willing to take a high-risk transplant. But I really didn't understand at that time a little bit about when they say it was a high-risk kidney. Because even though I took the high-risk kidney, I had other complications that was arising because of that. You know, UTIs, consistent UTIs, you know, CMV, some other like viruses that was easily susceptible that came into my body, that I had to do that. And it was actually attacking the kidney. But yet still, we, you know, I did my process, did my training, did what I had to do, my treatments, you know, to maintain it. It lasted four other five years. But of that four years, it was an overwhelming sense of joy, even in spite of all the stuff that I was going through, because I was no longer going into the center three days a week, four and a half hours a chair, two 15 gauge needles in my arm, drawing my blood in, drawing my blood out. So the idea, the mindset behind that was the fact that I was free. And that was the joy that I had. Free from a chair, free to try to live my life, free to travel, free that. So when I got that first kidney transplant, when I first got that call, and that was some of the things they shared, I still took it. But I it was really uh still another journey for me because the emotions that comes behind this and dialysis, we were strict. You couldn't have this, you couldn't have that, you couldn't eat this, you couldn't have eat that. You know, so even though I had like this overwhelming sense of freedom, but yet still I had to treat it as not as a cure, because that's where my head space was, ooh, I got it, flat, I'm good. Now I'm good to go. I can live my life like it's golden. But no, when I start having these issues, it was a treatment. And now it put me back into what am I eating, what am I drinking, what am I, the same stuff that I would do in dialysis. That's something that they really don't really emphasize that transplantation is really still a treatment, and you gotta do your part. You gotta make sure you're taking your transplant medicine. You got to make sure that you're doing and communicating with your transplant team anything and everything that is important. You need to really take the log. So it was a lot of behavior um patterns that I had to readjust and rechange. Eating patterns I had to readjust and rechange. But one of the things that they didn't tell me was the emotional side behind that that could come. Because when the kidney transplant failed, I had already dealt with grief at the loss of my kidney. But this brought about a grief that naturally can't even explain because the small incision that they had in they used to insert the transplanted kidney, the first one, they had a large incision to take it out because it wound up becoming aseptic. And that grief, that sense of love left a emptiness. Out of this, out of me like never before. And then now I had a transplant and now I gotta do this journey of going back into dialysis. So it's a lot of things up front that I really wish that they would have given me. And I call it the good, the bad, and the ugly. Tell me what will happen. You know, the good side is hey, I've had this kidney for X amount of years. The bad would be, hey, you might go through some challenges, you might have this, but we're gonna work with you through infusions or whatever it might be, whatever rounds we got to do to help you maintain it. But the ugly would be if it goes into full rejection and if it goes into recruit rejection. And I think that's important to let that let the client or the patient know upfront with everything. So they, when this happens, it won't be like me, so shocked and the overwhelming grief that I experienced. And so even though transplantation was great, I was no longer in dialysis chair, but I wasn't ready for the emotional side. I wasn't ready for the, you know, the the cost of the transplant medicines if, you know, Medicare or whatever your primary insurance does not pay for it. And if you are a small family with me where I have, I don't have a lot of, you know, family or support system, you know, or limited support, that's very, very difficult and that's very challenging. So in the orientation, they really don't talk about that. But that's something I really think that they need to, including the emotional side of waiting on a wait list for three to four years to get a transplant and then be told you're off the wait list because of some hiccup in a testing. Now that makes you feel like, oh my God, I gotta start back all over again. They don't talk about that.

Tamara Ruggiero: Yeah, what what an experience you have been through. And now you're on your second transplant. I wanted to ask um a little bit about lupus. How does having lupus um affect how you manage your transplant and keep your kidney healthy?

Della Major: Well, because of the fact that I knew I know that lupus was the original cause. I'm meticulous with it because if I began to know that I'm having a flare, because I had to start identifying when the lupus might be flaring up, which can obviously attack the kidney, or my joints issues is really, really uh so severe, I'm the first one to the uh my rheumatologist and say, hey, this is my symptoms. What do you think I should do or what? But that's me training myself to identify these pairs. So I can do what I got to do on my part to make sure it doesn't hit or damage the new kidney. In my particular case, the medicines, some of the medications that we take to uh for anti-rejection medicines that we take for the kidney to prevent rejection, I was already taking for to stop the lupus from flaring. So after 10 years of taking this medication, you can imagine my body has already become a little sensitized and adapted to that medicine that we do for the rejection, right? And so that was one of the things that I had to have a serious conversation with the transplant doctors and my coordinators, whoever was involved, but they felt that the anti-rejection medicine will keep the lupus at bay. Now I've had a couple of little hiccups, but you know, as my me staying in, you know, uh in touch with my rheumatologists and, you know, staying on top of things, being compliant and really involved in my overall care, that's what's helping us to keep the lupus where it's at and making sure that the kidney is being protected and not being harmed by it.

Tamara Ruggiero: It sounds like you have to be on top of your health every single day.

Della Major: For me, yes. And one of the things that I do share when I do my uh Kidney Health uh Coaches and my webinars is I tell them a well-informed patient is a healthy patient. So that means you just can't not ask a question. You can't tell your team what's happening to you. You gotta, a closed mouth don't get fed. So you gotta let them know if something is changing and something is happening, you just can't just let it happen. No, tell them, get on the phone, call that after-hour doctor or nurse or whomever it might be on call. Let them know this is happening because, you know, early detection saves lives. So early detection was save my kidney. So that's the way I look at it.

Mike Spigler: Well, Della, you mentioned Kidney Health Coach, and I was actually uh talking to my team that runs that program that was done this interview with you, and they mentioned that you're one of the superusers of that program. So I want to first thank you for the work you do there. If you're not familiar with the AKF program Kidney Health Coach, it is a free training that you can take to learn how to educate others in your community, friends, family members, uh, your place of worship about uh kidney disease. And um, you know, we have lots of other information we provide, including some information on lupus nephritis as well. You know, I'm sure obviously the community that you're educating is getting a lot out of it. But what are you getting out of it, uh, Della, in in doing that?

Della Major: Uh, you know what? Because I am an empowerment coach, and it's for me, I'm looking to make sure that everybody has is inspired and empowered to be able to live their life victorious and empowered. That's the name of one of my um my attribute businesses called Reclaim and LYVE and reclaiming, taking back their life, taking back their joy, but then living their life victorious and empowered, not allowing their diagnosis or whatever situation dictate the outcome. And so when I do my accordingly kidney screenings with the Natural Kidney Foundation and they come out to the church, we go to different other locations and everything like that. My joy is to see that we're making an impact where people who's coming in and they're realizing, oh my God, that was happening. I did feel this. And, you know, I didn't understand that at first. You know, to see that aha moment, that's my joy. I'm not looking for no pat to the back. I'm not looking for no, you know, people to say, hey, she's the great. No, I want them to be informed. And especially in the African-American and Hispanic community where the disparity is very, very low and the lack of understanding and knowledge is low. And when I see that, and when I when I'm doing these kidney screening, I feel the love, I feel the joy. I, you know, I enjoy at the end people coming back and saying, hey, I've watched you, I've seen you, man, you're very passionate about this. Man, if I would have known this information ahead of time, I would have made the best decision. And the fact that I'm part of AKF, in fact, I do some other advocacy for other renal organizations, I'm able to feel that I can share that knowledge with them to help them to be able to seek out whatever resource that they need to help them during this kidney journey. So being an AKF Kidney Coach, one, you guys gave me the tools. Two, you allow me to be able to articulate effectively what I'm sharing, even though I don't have a medical license. But because I've done this for so long and I'm so engaged, you know, um, being, you know, informed, I feel confident as a coach, as a teacher, that the information that I'm sharing is not just some fly by night, but it's impactful and it's making an impact within the community. Because now people are more aware of, man, I'm no longer gonna play with, you know, if I'm not producing urine, if I'm not, you know, doing what I normally do. Now they they're coming to me. I have a friend, I have somebody that I know they're going through this and this is what's happening, they're not understanding. Can you talk with them? And so that's opening the door for advocacy in multiple ways than I can even imagine. We can no longer allow this just to be silent and people suffering in silence. No, we need to be a squawker and give the tools for that. So for me, those aha moments as a coach, as a teacher, that's the teacher in me. Literally, I've had people to come back and say, You told me about this, you know, a couple years ago, and now this is what's happening. And that makes me feel good because that's like, man, I made an impact. I made a change. You know, I'm professionally known as the game changer, and I'm here to change the game. That's what I'm here in my motto. And so that's what I do. I'm here to change the game. I'm not, I'm not here just to just just spew out now. I want I want to see your life change. I want to, I want you to have that joy for long uh longevity. So that's what I get out of being.

Mike Spigler: Well, again, thank you so much for working on that and doing that. We really, really appreciate the work you're doing. It's so important.

Tamara Ruggiero: Della, I imagine there are people listening to this who also who who are inspired by your story and who are thinking about their own situation and how they the power of sharing their story with other people, being a squawker, like you say, right? I mean, you've done everything. You've done videos for AKF, you've gone up on the hill and met with legislators, your kidney health coach work and all the work you do in the community. What advice would you give to someone who starts, who wants to start getting involved in that way, sharing their story more broadly with the community or with lawmakers or whoever it may be?

Della Major: Well, the first thing I'm gonna share is you start internally. And the first thing you start, advocacy is always at home. So don't be afraid to really sit down and be honest. Have an open, honest conversation with your loved ones. Help them to be able to understand what you're really going through. This is gonna help you to be able to formulate within yourself where you want to go with this. What, how much of an advocacy, how much of an impact you really want to make for yourself? Is it about you just sharing your story? Is it about you really, like we say, going on to Capitol Hill to bring about change within the system, you know, of the renal, you know, making sure that other individuals can get the resources and the tools that they need to be able to live the best life that they can? Uh, is it only about you maybe being a support person to go out and uh help organizations like AKF when we go to some of our market days and everything like that outside of the four walls or anything? So it starts there because you having an idea as to how far you want to go is gonna help you to be able to make the best decision when you decide that you might want to participate with an organization like AKF. And so for me, I wanted this information uh to go far and beyond just myself and just beyond my community. And I wanted to be a part of legislation and helping to bring around change within the reading community. So that was the first thing for me. I had to sit down and make that decision. And I was talking to my family about that, and I was just telling them, you know, especially when I got my first opportunity to be uh advocate for you or advocacy day on the Hill, I was so excited because it's like now I could be able to share my story. I could be able to articulate what's happening with me within my community, me within my uh my area of influence and as an educator, and because nobody can speak about me and my journey better than me. And so having that opportunity on the Hill, it made a major impact. It brought me joy because not only was I'm just talking on the Hill, you guys gave me an opportunity to even just share far beyond just on Capitol Hill. And so I'm really thankful for that because it allowed me to build up my my resources, but build up what I want to share, what I wanted to say, the, you know, who I wanted to make this message to really go out. And what it and the second thing is what is my message? Is it about, oh, do dialysis to be compliant, making sure you talk to your care team, understanding, you know, what's going on in the center, or are you talking about change? And so that's how I realized for me, I'm about change, a change bringer change. And so I wanted to learn as much information as I can. I wanted to be right at the table to make change. I'm can't, I I mean, I was so serious. Let me talk to those who who make this change. You know, legislation policies is being done, but they're not talking to the people it's impacting, you know, and instead of being helpful, it's it being more of a negative. And so that was the area that I had to decide to do. And so for anybody else who's maybe considering, you know, your journey or considering giving back, I would say first think about where you want to go. Think about what you really do, how much of an impact that you want to make? Do you only just want to do and be a mouthpiece within your community, or do you want to go higher in legislation, or do you want to just do personal screenings like myself? That's what's gonna help you to do that. And if you join organizations like AKF, the question is what impact do you want to make inside of those organizations? How far you want to contribute to helping this large conglomerate like an AKF, you know, to get out. And the first thing I'm gonna say is another reason why I'm in actively engaged is that at the time when I had to retire, and I only type of insurance that I had the time before Medicare kick in was the Cobra. Your policies of helping us pay for our insurance plan helped me for the least the very first, I think, close to 12 months. It was a long time. You guys paid my Cobra insurance. You you helped me, and that was that 20% I didn't have to think about or worry, because that could be very overwhelming. And I didn't know where this money was gonna come from. So when I applied for the assistance, you gave me the assistance, you helped me out, and I was like, as you contribute, as you donate into organizations that help you, you're gonna reap the harvest of how they help you. And that's what happened to me. And so I know that AKF was viable. I know that was an excellent organization. You helped pay for my insurance, you helped help me get, you know, discounts on some of the medications that I couldn't afford. So, you know, that's another thing that I would tell any individuals. It's like, if you know you got this organization or whomever is helping you, then pour back, give back, be willing enough to be that mouthpiece. And then the third thing will be uh, as they get going on this kidney journey, you can't help no one else until you help yourself. So as you are building up your life and developing who you're going to be, you're gonna find yourself wanting to be a squawker. You're gonna find yourself wanting to be just tell somebody what you were going through. Because as you talk and you share your story, you're gonna find out you are not on this journey by yourself. You're gonna find out there's other people who could connect. Because I felt that I was doing this all by myself. But then when I started connecting with other advocates and other people, and they was telling me what was happening to them, and I was like, Dang, that was happening to me. And so it was just such a release, and I gained so much more value, you know, valuable information and value in helping me to live this journey. So that's what I would just share. Um, because once you start at home, start with you, then you can see how much of a, stand connected and of an impact is gonna help with your overall lifespan. Because, you know, my my third motto, I got three mottos, is my will to live is stronger than this disease. And how I help myself to build up my will is being doing things like this. I I I get joy when I'm able to come and just share and just talk like this, you know, conversation as to what has happened and what's going on. Because that lets me know that somebody's hearing me and change only gonna come when the change comes, right?

Mike Spigler: Della, thank you for being a professional squawker for our community. We're very honored that we have you in doing that. Um, I feel like I need to have a call with you every Monday morning because I'm leaving this very inspired and motivated. Um so we really appreciate your time today. Anything that you wanted to plug, any any of your own sites or that before we leave?

Della Major: Yeah, I'm just gonna just say this. Um, you know, if you've been doing this for what, 10 plus years, if you uh have been on this journey and you definitely even in advocacy, because I know there was a period where so much was going on that I had to take a step back. I had to take a step back from advocacy and everything because my body was forcing me to take a step back. And even after, like you heard me say, I had that grief spirit um span of losing um the first kidney transplant after waiting 10 years for it. Um it made me start thinking about, okay, I mean I'm really pouring out a lot to others, helping them to make sure that they get what they need. But one of the things that I had sort of kind of like to say for myself, I felt that was not really putting myself a little bit first before I could pour out to others. And so I'm gonna just share with you, don't get tired or burned out of doing something that you love passionately. If advocacy is what you do, which it is part of my DNA, that's great. But you need to take a moment to reflect for yourself and take care of yourself. So don't be afraid to speak up and just say, hey, you know what? I maybe need to take a couple months away or do something because you need to have that reflection time. You need to have that time where you're building yourself up and everything is gonna be great. That's number one. But the last piece I'm gonna say is this you are not alone. You are not alone. Even if you don't do advocacy, speak up. Because if if something is uh that you've heard is bringing about change, it's helping you, the only way you're gonna be able to get what you need is you got to talk. Share it with someone, share with another patient, share with your family members, get on some of these support calls. It's important because information that's not only coming from the health professional side, but also coming from other patients like myself, it's gonna help you to be able to live that new normal and it's gonna help you to be able to build the life that you need. Because everything is new now, it's not the same. You can't operate old wise again. So I'm just telling you do something new, learn something new, and make a change. Live your life victorious and empowered.

Mike Spigler: Thank you so much, Della. Well, if you'd like to learn more about lupus and lupus nephritis, you can uh get that via our Looped in on Lupus campaign. We'll drop that in the show notes and link, uh, as well as our charitable assistance programs that Della mentioned and our kidney health coach program. Della, thanks again. Uh, and we look forward to having our listeners back at the next episode of The Kidney Collective. Thank you.

Della Major: All right, you welcome.

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, 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.