What's the Deal with Dialysis?
A conversation about the kidneys and what happens when they fail.
What's the Deal with Dialysis?
Fila's Odyssey Through Transplant Trials
When you're handed a diagnosis that turns your life upside down, what's your next move? Fila, our remarkable guest, didn't just face his kidney transplant journey; he took charge of it, becoming a beacon of knowledge and hope. As we delve into Fila's intimate tale of resilience, you'll be captivated by his mastery over the medical treatments that have punctuated his life, from navigating dialysis to understanding complex procedures like IVIZ and Phereces. His story isn't just about survival; it's a testament to the power of patient advocacy and self-education, and it's one that anyone navigating their health or supporting a loved one can learn from.
Our conversation with Fila is more than an account of overcoming obstacles; it's a roadmap for any patient demanding better from the healthcare system. As we unwrap the disparities in care from Fila's first dialysis to his second, the impact of corporate shifts in healthcare becomes strikingly clear. But it's not just about the challenges; it's also about the pioneering medical trials and the progress they represent for transplant recipients like Fila. His experiences shed light on the importance of sharing these journeys, as they offer invaluable insights and inspire others to take an active role in their health. Tune in to hear how Fila's unyielding spirit and invaluable insights are carving a path for others to follow.
A conversation about the kidneys and what happens when they fail.
But what we tried to do was all the things I just named the IVIZ, the PRA, the PRA and Phereces. After we got transplanted, I even went on retulsion, which is a chemotherapy drug. It's part of the cocktail they give you for cancer, right, and I got real sickly. And what happened was they found out that sometime when you do these treatments after you transplant, it's too hard on the kidney to survive. So that kidney transplant was a really good thing, and that was the story of my second kidney transplant right there, man, it sounds like you you know you've educated yourself a lot through the process.
Speaker 2:I mean just being able to explain the things that you explained and all the different drugs and all the different processes Explain. How did I mean? Did you have to go outside and do your own thing? Did they give you this information? How did you come up? How did you get your education into the whole process?
Speaker 1:Well, me personally my personality since the kid. Even to this day, I'm the guy that always wants to know the why. You know how some guys are like, bro, let's move this process alone. This guy does this, this guy does that, et cetera, et cetera. Let's make it and go to the next one. I want to have my questions answered. Okay, who's doing the lighting? Who's the publisher? You know, like who? Who's the? Who's the host? Okay, who's the researcher? I want to know, I want to meet these people. So I've always been like that.
Speaker 1:So, as opposed to not only that, with it failing the first time and the second time, I felt an obligation to myself to say hey, wait a minute, what is there? Something that you can add to this? By maybe you understanding what's going on, as opposed to you just kind of like getting in the seat, putting the seat belt on and hope everything goes right, right. So, from the perspective of kind of like really wanting to understand my own journey and what was happening to me and why it was happening, it was the motivation to kind of make sense of all of these turns and you know, different things that were going on so simultaneously that most of them wouldn't even want to jump into the next one so simultaneously that most wouldn't even want to jump in that endeavor, right? But that was my motivation. I was like, well, no matter what happens, if I be on dialysis forever, I want to understand, okay, why, like what happened, like right. And so just trying to grasp that journey, that made me start understanding the terms and I will write stuff down.
Speaker 1:And then it started coming together kind of like a puzzle a little bit. I was like, okay, this does this and this does that and this does this and that's why they put you on dialysis and this is how you don't cramp. You know, these are some of the foods you can still eat, how you can take the potassium out. It just almost was like a fight to have a normal lifestyle mentally and physically. That motivated me just to want to understand it from a practical standpoint, not so much from like a, like a, like a like a, like an almanac standpoint or informational standpoint, practical standpoint, you know what I mean.
Speaker 1:And so I just started looking at everything in pieces like a puzzle and I started figuring out like, okay, this is how all this stuff comes together, right, and that kind of motivate me to just kind of like I kind of fell in love with the understanding of this dialysis thing and this kidney transplanting and who plays what role. You know it's like a movie production. I wanted to know everybody who was, from the executive down to the guy in craft services. I wanted to know everybody's role and I went on that journey to figure it out. And there's still more to know. But I just enjoyed the journey of trying to grasp more understanding of who plays what role and what's the priority of these roles and things of that nature.
Speaker 2:Right on.
Speaker 2:So and Maurice, you can probably speak to this, but throughout we've had conversations with other folks that have had success in their treatments, and the through line is self-education. And part of Maurice, when you came to me initially, is that people aren't being educated through the system Right, and so what we're trying to do in terms of effect and change is how do we incorporate or how do we inspire the system to educate the patient so that they get the ease. I mean not that it was easy for you, but there was a certain ease in your treatment where to me, it seems like you were never a victim of your circumstance. You were always because you knew what the process was, you could take an active role in it and not feel like it was just happening to you. You know what I mean and, maurice, I don't know if you can speak to that real quick in terms of how your patients like that are on dialysis, maybe don't know that they have like there's no hope, and if that mental state or that mindset makes a difference in the treatment.
Speaker 3:Well, it does, and I mean we know just from watching people on dialysis that if they know more they have a better outcome. I mean, and that's the whole point, I don't understand why they fight us on that, and you might speak to that too, fila what was, like the biggest difference between, like the first time you was on dialysis and then the second time you went on dialysis, because then the second time around, everything went corporate.
Speaker 3:You know what I mean. So did you see any differences in treatment and how people treated you the first time around? Then you did the second time.
Speaker 1:Well, I'm going to tell you one thing that I always did. I always got to know people like you, like Paul Terry Y'all kind of remind me the same person and I would always have advocates Advocates. You know what I mean, and it's such an off-season moron between prison and the real world. But the lessons that I learned in prison was it's kind of like you have to network for survival, and I took that same mind. State in Dallas is like I would be networking with certain physicians, you know, to the point to where I could see the ones that were more or less like you don't know what you're talking about and they would leave it at that. But then I would see the ones that were like no, you don't really understand it yet, but let me just help you understand. Right, all the way to the point where I had one of the, the lead in the prologies out here, named Patricia Blake, and I had her cell phone number. We would talk all the time like friends, right, and it's things that she would tell me and, speaking on when you said things were going corporate, she would just tell me ahead of time like things that were about to happen or she would say I'm not going to be at this unit, no more, I'm going to. I'm going to Colton, california. So if you want to put in a transfer, and so to me it has a lot to do with networking.
Speaker 1:Like like once you figure out everybody's role, like, say, you having a problem with your diet or meal prep, but you be friended to dietitians, or even if you can't be friended to dietitians the way you want, in your unit there's a lot of dietitians. There's dietitians in just local hospitals. There's dietitians that you know they go to different charities, you know you can catch them online, you know you can. You can Google questions, you know, and you can just start kind of like being the CEO of your life, even though you have these doctors and these dietitians and these people in the records and everybody playing their part. It's almost like you build a standard for yourself, for your quality.
Speaker 1:It's like you know what I'm going to figure out how to get the best diet, not just for my body, but that I will want to eat, and I'm going to. If it won't be this dietitian that tells me, maybe I'll just look on Davidacom or forcinescom and watch their clips. You know, maybe I'll go to. I'll just type in dialysis. You know, healthy living, cooking, you know, till I see that chef, and then I'll start to meal prep with all these meals, right, and then I'll put that in conjunction with what the dietitian tells me and I kind of like fact check, like, okay, well, this dietitian said, if you boil the potatoes for 10 minutes, you can take the potassium out. This one said you know, let them sit overnight. I'll try both ways, I'll see which way. When I go into dialysis my potassium high. Oh, it's low. Okay, then boiling them. It works better for me and it's fast, because sometimes I might not want to do the overnight and wait on my french fries. I might want to do the 10 minute boil and make my french fries right.
Speaker 1:So I just started researching just to live like a more normal life as I could.
Speaker 1:And once I start having these advocates, like these physicians and dietitians and the tech, I won't say they're more important than them, but you guys are like y'all. If I could put this in politician's turn, you guys are the lobbies. Like I could go to you and say, hey, bro, you know, you think you could talk to the dietitian and see if this and this and that, you know I can't really afford this nutrition supplement. Can you see, maybe she'll meet with me about getting an extra one during the week, right, and maybe me asking her, it'll just be a flat no, because that's the standard that she tell everybody to ask.
Speaker 1:But being that I was able to be free of you and you like me from a personal standpoint and she knows you from a personal standpoint, it's almost like that equity is transferable, like I can't use my equity but I could use my friend's equity and y'all always interacting in them hallways so you could say, hey, let me talk to you for a minute. Hey, you know, patient Coleman I'm not gonna ask you this for everybody, but you know he's really trying to take care of himself and you know he could use two of those, what they call them, not nephropyte, not sussicale. What's the Reno drink?
Speaker 3:They give us. Oh, yeah, yeah, I know what you're talking about.
Speaker 1:And.
Speaker 3:Renovite is something one of those. Renovite yeah, that's the vitamin, that's the vitamin.
Speaker 1:It'll come to me as we talking. But you know like you could petition for me. You know what I mean Because you feel me and they feel you. So I just started figuring out the connections of the relationships and kind of like how to navigate towards getting what I actually needed, you know, to move forward. You know what I mean. And once I started doing that, I had a better diet, my labs were better, that pool wasn't so hard on me because I was keeping the salt on my diet, I was using the Mrs Dash, you know.
Speaker 1:And dialysis was more like an inconvenience. As far as time, that was the thing. It was when before it was like time. It was taking my energy. I felt like my skin was looking different, my look was different, it was taking, like myself a scene. Dialysis it was like a big battle. But as we progressed through the rounds you know me, like round two and round three or four, I started kind of like catching up a little bit. It was a little more even fight, you know what I mean and I just felt like, just by trying to understand it better and who played what role, I felt like my role was almost to be like the CEO over me, like I couldn't control nobody else's job, but I had to control me and my behaviors and my attitude towards trying to get the things I need. To make it through this. You know what I mean.
Speaker 2:Yeah, absolutely yeah. So I mean, you know what I've seen through this and the conversation with you, maurice, just that the technicians role could be utilized so much better in the process, right, like you've gotten in trouble for being too much of an advocate for people, right, because the system doesn't really I don't know, from my perspective doesn't really want that, you know. So, you know, having this conversation just brings a light to me on the necessity of, you know, technicians and patients being able to work together to be able to, you know the technicians, like you said, like that's the lobbyist, right, that's the person that can go and actually affect change, and it's actually, you know. But people need to know what you just said, that they can, you know, find the right. You know you got to find the right people, because not everybody is Maurice and not everybody's Paul Terry, but I'm sure they exist everywhere, right?
Speaker 3:Yeah, they do. They do, I mean, and they find a way. I mean we just find a way to talk to patients, like, like Fila said, like we might catch you outside the center and chop it up with you and tell you man, look, this is what you got to do. Sometimes we can't do it inside of the facility, you know, sometimes we can't have a conversation because, you know, like you said, I don't understand it, but they just don't want us having those conversations that. You know, I don't know why they don't want patients empowered. I mean, that's what this is about. We had to do this.
Speaker 3:You know, this was a thing that was a necessity out of what I see. But you know, you would think some doctors want that and others don't. So it's like a mix. I can't say it's all one way or you know the other way. You know, just hearing Fila's story, that empowers people, that's going to give people a way and it gives them an example of what they can do. They might add live there, they might do it a little bit different, but whatever works for them at least gives them a basis to start from.
Speaker 2:Right on.
Speaker 2:So we're going to start to bring this to a close. But, fila, I want to give you an opportunity to just like speak to the audience and just say you know some advice. Like, if you you know when you first get started or if you're looking for a transplant, you know quickly and then you know just, we want to have you back because I feel like you are a great number one advocate for patients. You know what I mean For people that are going through it, and because you've gone through it, when we come up with issues that we're talking about to have you know how you know, like on CNN they have this specialist you know come on and like give their commentary about whatever the issue is. Like you're our expert, you know from the patient side, so I would love to have him back and, you know, definitely appreciate all the like the stuff that you've said is stuff that I haven't thought about before, so that's great, but what would you like to say to folks that are either getting started or going through it, like, what's your advice?
Speaker 1:Okay, I'm going to get to that, but let me just kind of finish this up. It's kind of start backwards. The third transplant right after that second transplant. It lasted four months. I went back on dialysis and once again God intervened and my wife knew a nurse she had befriended and they were good friends at the unit and her husband was going to Cedar Sinai Medical Center out in Los Angeles to get a kidney transplant and she had seen a paper. It was just a little video, crumbled up paper and it said hard of transplant. Third transplants they were looking for third plant transplant participants to try these new studies, these new medicines. They actually infuses, they stick a needle in your arm and they're 30 minute infusions, called the lightest set and class in the box. And so she gave it to my wife. She said hey, don't you just your husband need another kidney? This would be his third kidney, right? He should call these people.