Speaker 1 (00:01):
I am so glad we’re getting to talk today because your journey is such an exceptional one. I mean, it really is. I’m sure it’s not entirely unique, but at the same time, it is definitely one that is unique to you. And it important to, to talk about, so now that your post-transplant, I can imagine your life feels a little bit it before and after, you know, in terms of how you go about your day today. And, you know, in other episodes we’ve heard from Dr. Corpa about how to identify early signs of chronic kidney disease. And we got to sit down with the two of you together to talk about how that relationship between the two of you can work in order to be most successful in a healthy lifestyle. But now I’d love to talk about for you what you’ve learned and what has worked for you in terms of maintaining a healthy lifestyle as a transplant recipient. So first I’d love to start with looking at it holistically, right? Like what are the critical areas focus for you at this stage?
I think holistically first you have to, you know, look at the word. And it’s funny that you selected that word because after my first transplant, I was dead set on trying to find the most natural way to maintain because you are on so many medications. I think I take probably 20, including blood pressure, anti-rejection. I take about 20 some pills a day. And so you try and find the natural ways to do things and so holistically. You wanna try to kind of like, if you look at where we are right now in society, as far as people doing the keto diet and all of these trends that make you kind of look at your eating habits, I think that as a transplant recipient, you have to do the same and not only come up with things on your own, but you have to work with your renal dietician.
So every transplant patient is sent to a renal dietician, if they are capitalizing that referral, that is where I think the issues kind of come into play, but for me holistically, I think that you know, trying to remove anything, stay away from anything that has preservatives, anything that has a shelf life. So, you know, I’m looking at, I eat a lot of fruit out of fresh fruits, a lot of fresh vegetables. I’m the smoothie queen. I will make put 25 different fruits and vegetables. So that I’m getting not only all my nutrients, but also filling myself. And then you have to like an average person can go say, Hey, I want to take a protein to supplement, or I want to take this. Pre-Workout you can’t do that as a transplant patient. Anything that you put in your body that is not natural and grown, you have to, you know, run that by your renal dietician.
So for me I did find a it’s called a pea protein. So that’s something that I take, you know, put in with my smoothies so that I get that extra protein, but not a lot of animal protein. Yeah. So you’re definitely trying to cut out that animal protein because what people don’t realize is like, you know, say a six ounce steak that takes your anybody’s kidney, your kidneys, a transplant recipients, kidneys your kidneys are doing the work and breaking down that meat compound. And so just think the more meat that I eat, the harder my kidneys have to work. And so I think for me change my lifestyle to being pescatarian which is, you know, primarily seafood. And then occasionally because I do work out a lot and I feel like I need that, you know, protein refuel, I’ll do some, you know, chicken breasts or some very light protein.
I haven’t had red meat since my first transplant, because again, back to the fact. The red meat is what makes your transplant work them most? So tons of water. I mean, I can’t even stress the amount of water that, you know, I drink in a day. Then you have to get creative with it. So I do a lot of detox water where it’s, you know, cucumber, mint leaves, lemon, and just kind of giving water that flavor. So staying away from carbonated, staying away from a bunch of juices and things like that. So those are ways that I look at it holistically as far as nutrition.
Speaker 1 (04:28):
And, you know, in terms of the results of how that’s impacted you, what have you seen, you know, come to fruition in your life?
I see that when you’re a transplant, when you’re a CKD patient in general and especially a lot of us either have two diseases that are in conjunction with our chronic kidney disease. It’s either diabetes or it’s high blood pressure. So if you’re diabetic, there are certain things that you have to stay away and certain foods and things like that. That’s I have high blood pressure. I take blood pressure medication. So I’m noticing that when I do cut out the sodium or, and when I, because I don’t eat it regularly. So if I do eat, say a bag of chips, or, you know, if I go to a restaurant, I can kind of tell if I don’t say, Hey, light on the salt or sauce on the side. That extra sodium is what impacts me. So I noticed that I’m less swollen, like your fingers, like can get swollen your toes.
Things that most of us feel when we eat foods that are unhealthy, but the average person is not gonna pay attention to that. But I feel like I am like radar in. Anytime I eat, I, not that I sit after every meal, like, huh, how is this affecting in my body? But I am, you know, knowledgeable on what affects my body and how my body changes if I had you know, like if I drink some wine, you know, the next morning, you know, I gotta make sure the night before I’m drinking a lot of coconut water to flush that out. You know, getting those electrolytes naturally, not a bunch of Gatorade. So coconut water is my best friend for,
Speaker 1 (06:06):
Well, I think the general public can be more attuned to how we, you know, how certain foods physically impact us, I think is something that if, if you don’t really think about it, then it’s never really acknowledged. And then once you start to, to realize it, there’s certain foods that really do yeah. Make you, you know, feel like you’re your best self.
Speaker 1 (06:25):
Certainly. So diet is absolutely your, you know, if we’re looking at, you know, what areas of focus, so we’re looking at diet, what would you say is another element of your life that is, you know, a core focus is for you,
For me is exercise. And it’s like, you just mentioned everything in society the average person needs to do. So I don’t know if everyone is aware of the 80 20 method, but that’s pretty much your body makeup and how food and work working out affects you. It’s 80%, you know, diet 20% exercise people. The knowledge of you can’t outwork a bad diet. You just can’t. So you’re pretty much, if you are intaking, you know, 2000 calories, but if you’re on a treadmill for 30 minutes and you’re only burning 800 calories, so you just gotta have the mindset that you can’t outwork a bad diet. So your diet is going to not only give you the results physically that you want greater than working out. So for me, working out is huge, obviously, because I’ve been an athlete, my whole life was, it’s crazy.
You know, I’ll still go to the park, I’ll shoot, I’ll play basketball. I got a bike, so I’m us with Peloton you know, lifting weights. That’s something that has been a passion of mine. And one of the situations that happened, I wanna say last year was I did have a lot of pro I started to get a lot of protein in my urine, and there was a little bit of concern. And so one of the things that I did have to do was cut back on my heavy lifting, because, you know, I go in the gym with guys and I’m trying to leg press.
So I’ve had to cut back on the amount of weight lifting that I do because your muscle mass produces an, an amount of protein that then spills over into your urine. So I do love working out, but I do have to be cognizant of how much I’m working out.
Speaker 1 (08:27):
I was gonna say, so, you know, on that same note, is it something where you feel, when did that, when were you able to start that post transplant. I mean, when is it encouraged versus says, when can you actually?
So I’m not one to not to say that I defy rules, but, you know, I feel like there’s a standard, but then also I know my body and I know my limits. And so after my first transplant, that was one of the main questions my mom and I had, cause my mom is very active and things like that. So we were just like, you know, how soon can we get in the gym and work out? Because I literally worked out the day before my first transplant, I went, I got some shots up like, I was good to go. So then you know, every doctor is gonna tell you something different, depending on a person, physical history. But for me, they were like, oh, you know, maybe, you know, six weeks, maybe, you know, that’s the earliest that we see being able to do anything, you know, sometimes it’s three months.
But my mom and I were at the gym two weeks. Post-Surgery yeah, just, you know, lightly on the bike, the stationary bike, not doing anything. So I think that if you aren’t active prior to your transplant, your post transplant physical activity is going to be a lot different. So I think it is individual. Yeah. But for me, you know, I was ready to rock and roll. I’m trying to, you know, give back and, you know, because that helps you say especially if you were someone like me that didn’t have the, you know, I wasn’t on dialysis. I didn’t have like in a completely lifestyle change because of my CKD. So I just wanted to say, I wanted to remain true to who am and my activity and my mindset and how I lived my lifestyle. And I think that’s some advice that I would give, you know, transplant recipients. Yeah. Because if you’re not as active prior to your transplant, okay, you have to have a completely different mindset. You have to say, okay, before my transplant, I was sick. I, you know, couldn’t do an anything physically. I could barely, you know, some people tell you, I can barely get off my couch and go check the mail and come back. But now you have to realize it’s like, the minute they put that transplant in you, like you wake up and you it’s immediate.
Speaker 1 (10:53):
It’s a significant difference. With, you know, because when we post pre-transplant, we’ll get kind of like this gray kind of like ashy look, regardless if you’re black, white, Asian, whomever, like your skin just kind of has this, you know, gray kind of pish tone. It’s like your color comes back, your energy comes back. And so when that nurse gets you up the next day or two days after your transplant say, Hey, let’s walk these hallways. Yeah. You gotta push yourself. You gotta do it. So that however many days you’re in the hospital, you’re getting that motivation. And you’re getting that, those nurses they’re right there watching you so that when you go home, you have to have the same, that same encouragement.
Speaker 1 (11:38):
I was just say, take that as encouragement to build a walk, if nothing else, as you know, early routine. And, you know, hopefully I can imagine I think it’s James clear. I don’t know if you know the book atomic habits, no. Talking about just increasing, you know, making an improvement 1% day over day. A lot of it comes down to habit changes, create identity change. If you didn’t see yourself previously, as someone who worked out, the only way to become someone who would work out is to say, what would someone who worked out to do. You know, and different. He talked about identity change through the of that. And I, I can imagine that routine.
Speaker 1 (12:17):
Routine is important, incredibly important. So I’m glad you touched on that. So if we’re talking about diet and then we’re talking about exercise, let’s say we limit it to three. And I can imagine there’s a lot of different factors at play in terms of a healthy lifestyle at the stage. But what would you say is the third for you?
I think mentally, you, you have to have that mind, body connection. So everything that we’re saying here is nothing, you know, new or innovative, you kind of just follow that mind, body connection. And so a lot of transformation, I know I never took advantage of meeting with a counselor and a therapist and going through that because, you know, I was an athlete and I just knew this is something that needed to be done and let’s move on. But a lot of other, you know, CKD patients, especially someone that’s been on someone that’s been on dialysis, you know, their mindset for so long, whether it was two years, eight years, 10 years, their mindset was, oh, I gotta get up. I gotta go sit in this chair. I gotta go to this facility, you know, three, four hours a day, you know, three, four days a week.
So I think having that mind shift is so important in making sure or that your mental health is where it needs to be. As far as the positivity, the environments that you put yourself in getting a network that understands what you’ve been through and are supportive of that because when people see you, especially me, when people see you they’re, oh, you’re fine. Let’s, let’s do this. And let’s, you know, let’s travel like even right now with, you know, COVID and everything. And, you know, everyone’s like, okay, it’s back. Oh, everyone’s used to me, you know, traveling literally like probably eight times a year going somewhere like every other month. And I’ve had to, you know, kind of remind people that, you know, my immune system is a lot different than yours. Like, you know, I can mask up and do everything that’s possible while I’m on a plane, but sometimes, you know, putting yourself in those situations.
So making sure that you are very vocal with your support system, the people that you spend the most time with and keeping them aware of, Hey, you know, I may look great. I may be in shape. I may, you know, no longer be on dialysis. You don’t see the poor it in my arm, but I still have to be cautious. So absolutely just having that mind, body connection, I think it’s key. And then also saying, you know what, maybe it’s six months post transplant and I’m feeling good, or maybe it’s a year post-transplant, you know, let me just kind of check in with a counselor or with a therapist because it’s a lot to go through. And for some people it’s a long process to get that, that transplant for, for me, it wasn’t a long process. So I didn’t have that time to, you know, reflect and do the wo with me and why and all of that stuff.
And I think people always do that. That’s had transplants. They wanna know, you know, why, even though if a, a physician will explain their diagnosis and you know, what causes it, whether it’s a genetic makeup, whether it’s, you know, acute kidney failure or anything, they still want to know why. And I think if you get stuck on the why it’s gonna be difficult to appreciate this new life that you were giving, because it is a new life, it’s a completely new life when you have that energy and you’re able to get up and you’re able to do things that you weren’t able to do some people for years.
Speaker 1 (15:50):
You know, and I can imagine for a lot of people too, it’s a matter of, you know, trying to decide, you know, just how much to communicate. And it’s also, it’s tough to communicate when you’re not feeling well. Right. And so you don’t wanna bother other people, you know, so, you know, talk a little bit about those communication channels, like for you, with your family and your loved ones. You know, obviously I, I come from athletic, athletic background as well. You’re, you’re used to kind of just saying, all right, you suck it up and you keep moving. Right. But that’s really not in your best interest, right. When you’re in a recovery place, because understandably I, I would say it sounds like trauma there’s, you’re experiencing trauma, you know in one way or another, right. How, how do open those communication channels when it doesn’t necessarily come naturally?
Again, getting that professional help from your transplant team, that’s, that’s gonna be key for someone, but also building a network of transplant recipients or CKD patients. I think that, you know, previous, before, you know, being with of DNA you know, I was the, you know, senior director of development for the national kidney foundation serving all of Texas. And I can’t tell you how many times we’ve had patient summits, patient events, where you have the physicians come up and we got a beautiful, we got a physician talking about post transplant. We got renal dietician. We have all these professionals come up there and say, I’ll tell my story. Or another transplant or another dialysis patient will tell our story. When the event is over, it’s like 15 people waiting to talk to me. And the physicians are kind of just standing there, like we’re the professionals.
But I think patients want to hear it from someone who has experienced it, their physicians get them to their point. Their physicians know their numbers. They’ve cared for them. They’ve brought them through everything. But if you really want to have that, you know, mind, body connection and understand what’s truly going on having a mentor that is whether you’re a CKD patient that may be going to dialysis, or maybe you are transplant, you know, pre-op yeah. You have to have that network so that you can hear directly from someone who’s experienced it. Be because a physician can see, you know, 300 patients a week, but they haven’t sat there with IVs in their arms. They haven’t been, you know, in the situation where they’re going, getting rolled down that hallway and going into surgery, you know, it’s just a different experience from a patient who’s gone through it. So that’s something know I would highly suggest.
Speaker 1 (18:30):
I’m so glad you mentioned that community cannot be emphasized enough enough. You know, I’m curious, what recommendations do you have for being able to find community? You touched on the national kidney foundation. Obviously DNA bowel, nephrology associates, incredible resource, but out, what does it look like on a tactical day today.
And so in a tactical day, you, as a patient, you’re gonna have to go out and find those networks. And I know that for DNA, they have a tremendous, a tremendous patient support, you know, network. It’s a whole new program that a whole new department that they have called patient navigators where it’s that nurse that is in that it’s not your nurse, it’s not the doctor, but it’s a nurse that is key to communicating with you. You have their direct line because, you know, nurses that are just seeing patients, you know, they see hundreds of patients, but if you have that patient navigator. So I think that is, you know, actually a tremendous you know, program to have for a patient. And then just, you know, going online and, you know, Googling support groups. But I think that being able to find one or two, even if you, if you’re not with Dallas nephrology and you don’t have these resources, you need to ask your physician, you need to ask your social worker, your social worker could provide you with a list of, you know, community groups and, you know, support networks and things like that.
And just find someone. But I really think that anytime there’s a patient summit or a patient event or something patient centered, yeah. You’re going to walk into a room where there could be 50, a hundred, 200 people that are just like you. Yeah. So you kind of ease into, okay. Wow. Like you look around and I’m not the only one. Exactly. Yeah. I know for me, when I run across multiple, you know, like two time transplant recipients or people that have had liver and kidney E I’m always gravitated and fascinated. And I have 1,001 questions because I’m like, wow. You know, I know people that have had transplant, but two, like I had, I did feel for a long time, I would say it probably wasn’t until maybe two, three years ago that I met someone that had had two transplants. Wow. Two kidney transplants.
So you, I just, but my personality is just like, I’m like, what’s your number? Like I have questions. What is your follow up? I even met a nurse in one of our offices now she’s had to, and then she’s gonna have a third. So I ask her questions and things like that. So it’s just about getting out of your shell. And like, I gave you that example when you are at a patient event and you see all the professionals and they’re giving grand and you know, all this information, but you wanna hear from someone that has been through it,
Speaker 1 (21:24):
You know, I’d love for you to address what the mental aspects of not having just one, but having two, you know, we’ve talked about how, you know, some of these transplants can last, you know, may fail within the first week. I’m not sure how long yours took, but others, you know, it sounds like a year or two, or maybe longer than that in the journey. So, you know, what are the hurdles to overcome you in terms of whether it be communication or just how you’re handling, approaching, you know, a second transplant.
So for me, my for my first transplant, I had her for eight years. And so that was my mom’s organ. And so of course you go in not knowledgeable of how all of this works. You’re like, oh, well, my mom gave me my organ and she gave me my original organs. I, you know, this is gonna last forever because it’s my mom. And ironically with my second transplant when they look at all, it’s, it’s a complete science, but at the end of the day, when it looks, when they look at it, my husband’s kidney was more of a match than my actual biological mothers.
Speaker 1 (22:33):
Interesting. And so when you’re knowing that you’re being able to hear from the doctors that they’re saying, this is actually, you know, from a scientific perspective. A potential better match. You’re able to have maybe a little bit more optimism going into it. Yes. I’d love to talk about what do you feel like has been your, your biggest win, you know, in terms of what you’ve experienced now that you’re on your second transplant?
I think my biggest win is I mean, there’s so many, I think for me, I know that I know that my transplant journey, both of them are not normal, but also just to have organs that are from my mom and my husband, like two of the closest people in my lives, you know, it’s, it’s, it’s pretty phenomenal. You know, when I, I don’t often reflect as much as I should, like when we have our kidney anniversaries or little things like that, but just like, wow, like that is really looking out for me that I have never had to do dialysis and that, you know, both of my transplant journeys happen at rapid speed, which is, you know, pretty, you know, unknown. But and I think just another win is to, you know, be able to sit here and advocate and educate and tell my story.
And sometimes I do feel like, gosh, you know, people are probably tired of hearing about my story and whatever, but I gotta realize that there are people that haven’t heard it. I’ve gotta realize that there are, there are patients that are gonna listen to this podcast and be like, Hey, I got motivation from her, whatever it is that they pull from hearing from another transplant patient you know, that’s a huge win, I didn’t automatically want to be this person always talking about my journey because, you know, for me mentally is just kind of like, I never question why it happened to me, but it is just like, God, I was a, I was a division one, you know, USC Trojan. I was a, you know, basketball player. I was a starter. I was a team captain.
I played overseas. Like you just wouldn’t associate this time type of disease with quote unquote, someone like me. And so that’s another win is showing people that this disease does not have a face. You can’t look at someone that walks in a room and say, oh, you know, she, she looks so healthy and then sees someone else. Oh, they look well, that person that you think physically looks unhealthy than me, organs are probably a hundred times better. You know? So I just think that being able to change the face of what chronic kidney disease is and what a person that has received, not one, but to transplants and how life can go on. I think that’s a huge win to just show people that in the grand scheme of life, it’s a small hurdle that you have to kind of go through.
I know I have people in different departments, you know, at DNA that are that have family members and some of them are like, I don’t wanna put any FA you know, I just rather or go, if I need to go, whatever my kidneys do, that’s gonna happen. I don’t wanna inconvenience a family member. I don’t wanna put family members at risk. And I’m like, they have to understand that people, donors live full, healthy, active, amazing lives. And you’re not, you know, in a lot of transplant patients, outta CKD patients do that. They don’t want to share when they get that packet of you’re sitting there with your doctor and they’re saying, okay, you have these are your options. These are your, you know, you know, renal therapy options. You can either do dialysis or here’s some packets, you know, they’ll give you like 10 packets, mail these out to family members so that you, can start getting people tested,
Speaker 1 (26:30):
Especially if they’re, you’re being able to talk about this healthy lifestyle and what your life can look like. And I think that’s, what’s so exciting about being able to sit here with you today and be able to ask these questions and talk about the journey is the fact that there you still have your mom, you still have your husband, you live happy and healthy lives together, obviously routine an important piece of that. And some of the different elements that we talked about today, but I think that’s an incredible note for us to, to end on because it’s the most important is you have to ask yes. And that it can, there’s something to look forward to on the other end of it. Yes, it is. Fantastic. Thank you so much for your time today. I’m glad we just got to got didn’t get into it.
Yes. Thanks for having me.