PowerLiving with Kimberlee Langford
PowerLiving with Kimberlee Langford
Empowering Kidney Health: Pesh's Journey from Crisis to Advocacy
Facing a life-altering health crisis, Pesh discovered he was living with just one underdeveloped kidney, a revelation that propelled him into a new chapter as a patient advocate. In this episode, join the SCM nurses as Pesh Patel shares his remarkable journey through the challenges of kidney disease, including emergency blood transfusions and a failed kidney transplant. Pesh shares the customized approach he's taken with his healthcare team and the significant role his diet plays in managing his condition. His inspiring story emphasizes the empowering potential of personal advocacy and nutrition in chronic health management.
Listeners will gain valuable insights into the transformative power of taking charge of one's health journey. Drawing from personal experience, Pesh delves into the importance of early detection and proactive kidney health management. Our conversation turns to the promising role of data analytics and AI in identifying undiagnosed cases, and the critical need for understanding health metrics like creatinine and GFR. We also delve into the emotional and cognitive challenges of dialysis, highlighting the significance of self-care for both patients and their loved ones.
The episode moves beyond personal stories to explore broader themes, including the potential benefits of the Keto diet for kidney health, particularly for those with polycystic kidney disease. We navigate the complex terrain of balancing diet and health, reflecting on the challenges of maintaining an alkaline diet and sourcing healthy fats. As we discuss plans to broaden our advocacy efforts through interactive content, the importance of education and collaboration shines through, offering listeners a comprehensive look at managing and advocating for kidney health.
Yeah, absolutely. Well, pesh, tell us a little bit about you and your journey. And, for those that don't know, what is a patient advocate? Sure.
Speaker 2:First of all, of course, thank you for having me today. I really appreciate all of your times. So we met, of course, in San Diego at ASN, and I shared a little bit there. But let me go ahead and start over. I was born in England, I was moved here to the States when I was around 10 and grew up in Mississippi, and then, you know, after college, I've been to Louisiana and then Houston, so hospitality was my background, family in the hotel business and I had my own company where I was doing international consulting development and that took me to Australia for a project in 2017.
Speaker 2:And while I was there, I was in Melbourne and I was walking to my architect's office. One morning I believe it was May the 1, the first and on my way there to the office I had to stop four times to walk three city blocks. Now, I, of course, knowing nothing about health, thought that I was just out of shape, and once I got back home, I needed to hit the gym and and, uh, be better about things. But, uh, that persisted and when I got to my architect's office, he said pesh, we need you to go to the doctor because I had fluid in my lungs and it sounds like your symptoms. That's exactly what's going on.
Speaker 2:And me being stubborn, I said, you know I'm fine. And so I carried on. And I was there for a conference and I was like you know what it's Monday. I have meetings packed Tuesday through Thursday, so if I still feel terrible on Friday, then you know what I'll go to the doctor then. Well, woke up Tuesday morning feeling the worst I'd ever felt in my life, went to the ER and within two hours I had two blood transfusions and I'm in ICU. So after a battery of tests found out that only one kidney had developed since birth and that one kidney was 2% functional, so it was too scarred and atrophied for the.
Speaker 2:You were walking with 2% creatinine was over 10 and every every number that was bad was like at its limit. They were surprised I was speaking of them, the way I'm speaking to you all right.
Speaker 1:Yeah, I've seen people go into a coma at six.
Speaker 2:Really.
Speaker 1:And I remember in San Diego asking you, you know, did you have any symptoms, Like did you have any foamy urine? And I remember you said you did, but you didn't know what to.
Speaker 2:Right.
Speaker 1:Yeah, what that was.
Speaker 2:It was just normal for me, so I didn't know what was abnormal, right?
Speaker 1:yeah, it's just like the fatigue and and other symptoms you, you don't know. And so, uh, it's because I travel it's because I'm working too hard, it's because I'm getting older.
Speaker 2:Yeah, yeah, I need a nap. You know, that's all it is. I'll be fine after that. Um, yeah, so did all that I was. You know, of course, the CCRT machine. You know the 24-hour dialyzer. You know wonderful procedure to put that in your neck. Yeah, oh man. And then, once I got back to the States, I was on dialysis, a hemo in center. I had a chest cath for 15 months and that lasted 15 months until I had my first transplant at Methodist in Houston, and that was August 7th of 2018.
Speaker 2:And fast forward, two and a half years. And the kidney rejected. So I had antibody mediated rejection, but I also had BK virus. So, of course, to treat one, the other one is gonna elevate. So, yeah, lucky me. And then fast forward, and now in August just got back on dialysis, but fortunately I'm not doing the three days a week. You know, four hour sessions, negotiated a little bit with my nephrologist, if you will, and I'm doing two days a week at two and a half hours. So, and I'm trying to get my as Kimberly we were talking about earlier getting my nutritional intervention again so that I can get my EGFR back up, so that we can even shorten that time.
Speaker 1:You know you bring up that's a really interesting concept. You know a lot of people. They think that when you're on dialysis you're on dialysis three days a week, four hours a day, and most people are that's true. A lot of people don't know that there can be some customization there based on if you have some kidney function left. Do you know what your gfr is right now? Or creatinine it?
Speaker 2:is 10.
Speaker 1:it's 10.
Speaker 2:so you're right there, yeah, but I'm also when, uh, last august, I believe, somewhere around then, um, my gfr was eight and I did a 60 day extremely strict diet that I came up with for myself it was probably the 17th iteration of a version of a diet to try to get healthier with things and in 60 straight days of doing it, my creatinine went from 7.4 to 3.7, and my GFR went from eight to 20.
Speaker 1:Wow.
Speaker 2:So I I think that's awesome too.
Speaker 1:It really speaks to the power. I'm just curious are you incorporating more plants or more alkaline kinds of foods?
Speaker 2:Yeah, yeah, definitely A lot more of that. And uh, it was. You know I also with reading a lot so many anti-inflammatory foods, because even some things that you know, just because they're not red meat doesn't mean they can't cause inflammation or even like, and no dairy whatsoever, and things of that nature Really served me well.
Speaker 1:Wow, so many awesome things that my mind went to as you shared. Your story there really speaks also to the power of you know it's never, ever too late for us to make our lives better. There's always something you can do to make that better. It doesn't necessarily mean that you can avoid a certain outcome forever, but you can certainly slow that process down and give yourself some time for another transplant or even just to be healthier. We know that the healthier we are going into dialysis or into a transplant, the more likely we're to have a good outcome yeah, and that's the other thing.
Speaker 2:Like we're at the time of the year where everybody you know, uh well, new year, new me is is the cliche right. Well, you don't have to wait until January 1st, you can start right now. Amen, like your dinner tonight. You know, whatever the case may be, let's not wait because you know, and you guys have seen it in the nursing world and all the patients you've been around is a lot can happen in 24 hours, that 24 hours you want to wait to start your diet. A lot can happen to your body if you're in a chronic condition.
Speaker 1:Oh yeah, absolutely, and your tomorrow is going to look a lot like your today, unless you do something different. Where we're going to be five years from now. I can tell you what that's going to look like by looking at where we are right now, today, without making some kind of change. How did you get into tell us a little bit about what you do as a patient advocate, and how did you? How did you come into becoming a patient advocate?
Speaker 2:yeah. So last, as I mentioned earlier, I was born in England, so, being as sick as I was a year ago in 2023, I made it a point that you know what. I'm going to make it to London one more time. I'm a huge Manchester United soccer fan, so I was going to go to Old Trafford I had to go see a match there and I'm going to go to London have some pints of food and everything else that comes along with visiting that beautiful city. And so my GFR was 18, excuse me, 13 when I went there.
Speaker 2:So I cut the trip short. I was supposed to go to Cambridge and York and some other places, but I just totally felt like shit. And so I'm like, okay, on a Sunday night, booked a ticket the next morning to just fly out just one-way ticket back home. So I came home and that's when the GR4 was eight, but I was in bed for probably, I would say, in my room in bed for probably a good month and a half at least, food delivered to the door. I wasn't moving. I just felt absolutely terrible.
Speaker 2:I got to a point where I actually last year, probably around 16 months or so ago, I wrote out my last wishes and was going to have a one-way ticket to a place in Europe for an assisted suicide. I thought it was done. I thought, okay, I fought all I could fight. This is it. It's been a good run. I got to see England one more time and I'm content and I'm good.
Speaker 2:And then one day I think it was I can't remember Again my brain fog, brain's jello with the timelines on everything, but anyway, I was looking out the window as I'm laying in bed and I'm like you know, when I was in 2017 in ICU, I made myself a promise that you know, helping people is my purpose or will be my purpose, but I didn't do anything about it because, again, after the transplant, I'm healthy and I'm traveling the world and I'm taking everything for granted again, and I didn't do anything about it.
Speaker 2:So it's like, okay, well, what can I do? And that's when I realized, okay, if I'm still not feeling well, I'll always have my laptop so I can start a newsletter and I'll just share my thoughts and experiences and, even if it doesn't help anybody else, at least I can, in a cathartic way, just kind of journal my experiences and just try to come to grips with everything I've been through in this kidney adventure, and so that started a kidney life, and so I started and I gained some traction and then from there I started becoming involved with the National Kidney Foundation here locally in Louisiana, nationally, and then other organizations, and then it just gained momentum.
Speaker 2:I started feeling better by helping others, being more involved, and I found a purpose and so that's what it was and that's really how it came from my lowest point ever to doing this and listen. Hospitality is still my passion. I love everything about the food and beverage industry, the hotels, resorts, all the good stuff, all the fun stuff You're a people person.
Speaker 2:I am, and, but there's nothing like helping somebody else. It's so much more fulfilling. It's uh, and my purpose is becoming my passion. So it's exciting and I am doing, I'm learning every day, I'm trying to learn every day and again. My goal is simple. When I started this it's I just wanted to put a smile on somebody's face every day. If I could just make put a smile on one person's face a day, then I'm doing my job and it's just growing from there.
Speaker 1:Oh, man, you're seeing our language. When people sometimes ask me what I do, I say well, I get to love on people all day and they pay me for it.
Speaker 2:Love that.
Speaker 1:Love. That it is true, though I think sometimes you know, I think a lot of us in nursing we feel that too, and I know, for me personally, the hardest times in my life having to get out and go serve somebody else that gets you out of your head. Out and go serve somebody else that gets you out of your head and helps you remember the all that we have to be grateful for service. Service for others is really.
Speaker 2:it's a great antidote, it's a great medication yeah, we can be our own worst enemies, right, because everything that happened to us, we think, has happened to everyone everywhere and we are the victim and we can play that card really well if we wanted to.
Speaker 2:But I do want to say, on the note of you and all of you and your roles as nurses, I just want to say thank you, because you know, the doctor's only in the room with me for two or three minutes and they're gone. You guys, all the nurses around the world I can say that I've I've spent time with, are just the most kind, hearted, gentle heart. You know those moments when I thought it was like, like I said, the example of getting the catheter in the neck and everything else, like you know, the nurses were there to hold my hand and be like, hey, it's gonna be okay, and that just meant the absolute world to me. And I cannot say enough Thank yous enough to all the nurses that have helped me in my journey and all the nurses that help every patient, because without you guys, the medical world does not run.
Speaker 1:Look at that, you got unanimous hearts. Come on, dave. Unanimous hearts. Come on, dave. Well, you too. It's a great honor for us as nurses, to get to walk beside the folks that we serve. It's not easy to let people in when it's dark and you're in a time of it's just hard when we think that we're less than and that's a hard time to let somebody in. And it's a great honor for us to to serve, uh, the folks that we do. It's a great honor for us to get to chat with you and hear about your journey and, uh, I know right now you're doing some work with, so you're working with the National Kidney Foundation and DeLorean AI.
Speaker 2:Yep, working with DeLorean, a great group, and you know medical AI and you know, with the dialysis, part right is potentially going to hit. What we'll say the red is if we're going by the traffic signals of green, yellow and red. If somebody is getting close to red, let's take the preventative actions and the patient knows okay, well, let me not skip a treatment, let me make sure that I'm doing what I need to do and not skipping my medications or anything that could. Again, because we can be very, as patients, we can be very apathetic, you know, oh, oh yeah, I think all of us they're not going to care or whatever, yeah all of us can.
Speaker 1:It sneaks up on us. Even nurses, right. If something's wrong, we're usually the last ones to go. So so we totally, we totally get that and it's interesting.
Speaker 1:You know one of the things I know that you and I really like both about. You know things like especially what, like DeLorean AI is doing and data analytics and how this can really help catch those cases where people don't have a diagnosis yet. It's one thing to get a timely start when people do have a diagnosis, but you know, as in your case, as happens to so many, many people, I've talked to literally thousands of people in my career and I would say probably 90 percent of the folks that I've talked to never had a clue that they had anything going on with their kidneys until they were told they needed dialysis or a transplant. That's not only really expensive health care, it's so traumatic as, as you know better than any of us, and it's really a traumatic way to start, and being able to help identify people who probably have it and it hasn't been diagnosed yet is so important um, yeah, but it's also because I'm a proponent of getting.
Speaker 2:I don't think once a year with your PCPs enough. I think you should do every six months. And you're getting the labs and look at more than your cholesterol. I mean, if you're getting, as you know, the comprehensive metabolic panel, your creatinine is on there. Take a look. Just take a half a second please, doctors. Just a peek.
Speaker 1:But you know it's tricky, Just a quick glance.
Speaker 1:It's tricky. That's a tricky one. A lot of times people ask they'll say things like well, how come Stephanie had a member? Same thing, where you know, by the time that we, we provide general education cause, most of our, most of the people we talk to don't know they need us. And when the light bulb goes off and they see where their GFR, their creatinine, is, they'll say things like why didn't anybody tell me? Or we had a patient recently who said my doctor never told me. I feel like I'm not getting good care and you know why didn't they tell me?
Speaker 1:And I think you know it's tricky when you look at that creatinine. And I think you know it's tricky when you look at that, that creatinine, the creatinine that's a. It's a, it's a byproduct, if you will, of muscle metabolism and it passes through the kidneys largely unchanged. And that's why we, across the country, when you look over on the right-hand side, where it has the normal range, some labs will tell you it's normal if it's greater than 90. And then some labs will say the normal is greater than 60. So what is it? And it's not really that there's any, you know, maleficence at play or anything like that. It's tricky, right? Because we know that the normal for a GFR is above 90. Although if you go too high above 90, you get in 120s, 130s. We know that's a kidney that's working really hard, right Like an engine, right Before it peters out, and that's a nuance that a lot of people aren't aware of. They don't know how to watch, but they don't. They don't understand that. Or if you're below 90 and you're above 60, that doesn't necessarily mean that you have kidney disease. It doesn't necessarily mean that you don't either. Right, but to your point, if people were aware earlier how to watch that and not just watch the number. But what is it doing over time? You know, like the stock market doesn't have a range like this, right, but if you look at it over time, it's steadily gone upward, but we have peaks and valleys all the time it's.
Speaker 1:But what is it doing over time? That's so important and a lot of times what we find is, you know, on initial education, sometimes people, they hear it, they start to understand what their GFR is and they call the office and they say hey, I'm talking to this crazy nurse and she's telling me to ask you for my GFR. What's my GFR? And the MA, or the nurse assistant or even the physician in the office will look it up and they'll say, oh, it looks, it's normal, everything's good. And people end up and they walk out the door and they pat. They know absolutely nothing.
Speaker 1:It's like Stephanie and I were talking this morning. How many times people hear everything is fine and that's fine is so relative. I might be taking a course, if you remember being back in school. A C is fine, but it's not an A right. A D will pass you, that's fine. So you know, just understanding just a few key metrics to your point. The cholesterol what's my A1C? And that's another one where a lot of times people you know you can have a decent fasting glucose and still have a crappy A1C. That we see all the time.
Speaker 1:All the time.
Speaker 3:Yeah, that we see all the time. I think to add to your point too, is be aware of any form of morbidities, right. Yeah, I think to add to your point too is be aware of any comorbidities, right? So if you have blood pressure issues, if you already have diabetes, a lot of people think, well, I take the pill. I mean, sometimes you ask a patient do you have any issues with blood pressure or sugar? And they're like no, I'm fine. And then you do digging, digging, digging. You find out their own medications. And then you ask them and they're like well, my doctor says I don't have anything. And they don't understand the concept of taking that medication is what's helping them, which is great, but again, just, it doesn't mean that you're not at risk for other things because you have those performance.
Speaker 1:So just knowing that is also, I think, very important yeah and you know I oftentimes you know when I, when I think about self-care, how we take care of ourselves. It's kind of like a three-legged table and if you have a three-legged table right, if I take away any one of these three legs, my tabletop is going to move right. The only leg that my doctor can wiggle is the medication leg. I've got complete control over diet exercise. If I want to add a fourth leg, that would be sleep stress management. I have. I've not yet met a provider who's going to come over and make me breakfast, take me for a walk and make me get out of bed and do my exercise at 5am.
Speaker 2:You're not going to I have.
Speaker 1:I maybe, maybe Stephanie has a doc wink, doc wink wink who will do that for her. But and I think sometimes we've, we, we minimize the personal power that we have to really direct the course of our lives. Medication is just one of those legs yeah, and once you.
Speaker 2:I found that once you incorporate your nutrition and fitness fitness routine and then add the mental health and well-being- like yeah, you can take care of this part.
Speaker 2:That is such a big accomplishment. And again, I don't think any of us are all ever right. I'm a firm proponent that I think everybody needs a therapist, but it does. It does go a long way, especially when you've been diagnosed with a chronic illness. And again, if you have, you know, like stephanie said, the comorbidities and so if you've got multiple things going on with you and then we know the risk of heart disease once you have kidney disease.
Speaker 1:So oh yeah, because of all the inflammation and you bring up a really good point too with the mental health aspect, and sometimes that doesn't get enough light there. But you know, oftentimes when we do have any kind of chronic illness, we kind of lose ourselves and we become a walking kidney or a walking heart, a walking pancreas, and we leave or we're, now we're, we're not, we're cancer, now we're not. We lose ourselves and it's really important, but it's so hard, right, because it takes a certain amount of energy to do the work of self-care and to do the work that's required to help, you know, boost our, our mental health. And, to your point, sometimes we need, we need an extra leg to help us and to be able to do those things I mean, it's the same concepts, um, you know, with transplants.
Speaker 3:I know that, you know you were talking about that, but when the transplant coordinator is working with you, one of the things they do is a psyche valve before transplant. Right, you want to make sure that you understand what's going on. You're going to take care of that new organ and so forth. So, yeah, I think that's important definitely yeah, I think too.
Speaker 1:Sometimes, you know, as providers, we forget, um, and it's kind of one of my pet peeves sometimes, um, where we forget the impact that kidney failure has on our cognitive, our ability to think, our cognitive status. With the fluid shifting that can happen and you're still, you still have uremia on dialysis. It takes you up to about 30 percent of your kidney function, right. So, and you know, we send people home. It used to be, we sent people home with a binder like this of diet and fluid education and we wondered how come they weren't following it to the letter. Or we tell you something once and they should get it.
Speaker 1:If they would understand that they wouldn't be back here and they forget that, right, um, and I think it's tricky now too, because since covid, I don't know about where you go, but it used to be that you could have a support person, your husband or wife could come in with you and when the dietician came around and they would be part of that education that you received. Well, that doesn't happen anymore, and so people are patients, are being educated while they're on dialysis and who knows how they're feeling, and we expect them to retain that. And when I call a lot of facilities. Well, can you call and follow up with the wife after you make your run?
Speaker 2:Nope, yeah, well, it's just sitting in there. Well, it's just sitting in there and I remember my first time and I'm sitting in there and I'd gotten a call that, hey, pesh, we've got a match for you. So I'm excited, ready to go. And then they're like a few weeks later they're like, sorry, that person backed out. So then, going through that rollercoaster, and I look around and you know, mr James, that has been in dialysis for 15 years, and you can't help but think well, is this going to be me? Am I going to be in here 15 years from now doing this? So like just the daily ups and downs? And again, like you said, like how do you feel physically and cause that just when you're doing that? Four hours of the chair, that just for me, was you. Hours of the chair, that just for me, was, you know, physically and mentally, just draining, absolutely draining. And by the time you start feeling better, guess what?
Speaker 2:it's time for your next treatment oh yeah.
Speaker 1:Yeah, it's hard to make yourself go because I'm finally feeling okay yeah, no, absolutely.
Speaker 2:And then, of course, the other part of it is you know what I call a HIPAA the centers of HIPAA violation, cause every time somebody talks to you, everybody can hear like all the medical questions, all your personal stuff, it's like all out there.
Speaker 1:Yeah, there's no screens, no dividers. You might be at most, maybe you're four feet away from your next chairmate.
Speaker 2:So yeah, and people get to hear that. And then back to the nutrition space. It's like I've seen somebody, you know, while they're in dialysis and bring all their snacks and they're housing a bag of Cheetos and things like that. And I'm like why isn't somebody saying something like hey, if you want to get better, we got to stop doing things like this. Yeah, but nobody said I didn't mean, I mean, what do you say?
Speaker 1:that's a tough one. I once had a guy who he always had he. He was in his 80s, so I think his situation was a little different. But he would always have a shot right before dialysis, because they're going to clean me out, so might as well get it in there.
Speaker 2:So smart, I mean yeah that's one way to look at it.
Speaker 1:It's tough, yeah and um. I think that's the key. Right Is giving people as clinicians. What I've always felt like is my role is to give people the information they need to make the decisions that are right for them. If you know how that salt is going to impact and going to require your machine to work harder and you're probably going to feel crappier. I mean, I'm not going to treat you like a bad little boy or girl because you're not doing what daddy doctor tells you to do or mommy nurse tells you to do. Right, and I think there's a lot of that too. I think there's a lot of times where you know, as clinicians and our desire to help people, there can be some um, whether it's unintentional or not, there can be some shaming and and that that does not. You know that doesn't empower people to change behavior at all.
Speaker 2:Right, we do as patients. Of course, you're doing your best in your role and we have to be accountable for what we're doing too. When you're mixing that with what we've been saying, like being overwhelmed, because again, I've been in this situation where I have this amazing support system but I still felt alone, asking those questions of why me, why, why this is happening to me, and those questions happen, right. So it's, I mean it's, I don't know, it's, it's hard as hell to navigate, that's for sure I want were you getting yearly exams before your diagnosis?
Speaker 2:no, I was fine for so long.
Speaker 1:Okay, all right, I was so good yeah, yeah, I wonder, because you know, sometimes we do, we do, we feel like that and you know, everything's been fine all my life.
Speaker 1:I mean, for me it's, you know, kissing 60 and hitting menopause and that's probably TMI, but it does change some things, right and so we have to, or sometimes it's not for us, but it's for the people that we care about that we really need to take care of ourselves, right, because how we care for ourselves or how we don't care for ourselves does have an impact on everybody who's, you know, counting on us. So let me ask, let me ask you this question if you could, um, if you could go back in time and talk to your younger self?
Speaker 2:Oh Lord.
Speaker 1:And give yourself some advice. What would be your best advice? Or maybe it's not you, maybe it's for that person who's working hard every day putting food on the table for the family. Nine to five. They have a busy life raising families, um, and just you know, taking care of yourself goes on the back burner, I don't what. What advice would you have for them? Or for your younger self?
Speaker 2:well, sarcastically, the first thing that came to mind when you said that my first thought was okay, don't marry your two ex-wives. Okay, so that was. That was the first thing that I tell myself.
Speaker 1:Uh for sure that's where the inflammation comes from pash okay, and the stress and all that got it.
Speaker 2:Um, no, I would say, say in. I think in any circumstance and this is health or otherwise I think we can't be afraid to ask for help whenever something is going on. I think we have this, especially men it's. You know we're supposed to. We have that stigma of not being, not looking weak, and especially when it comes to our health, right Like right now, friends of mine that are over 40 and the thought of getting a colonoscopy, like no, I don't want to. Why do I do that? No, it's, it's don't want to look weak. Or I know plenty of people that have been sick or be diagnosed with something and they don't want to tell anybody. So I think the first I would say to everybody is do not be afraid to ask for help when something's going on, because it could be nothing, but it could be everything.
Speaker 1:It could be. One thing I always told people because it is hard to be the one that has to ask for help. Nobody wants to be in that position. However, everybody likes to be the one that gets asked to help. I think everybody would like to be helpful. We just don't know how afraid, uh, we don't want to overstep our roles, or we don't want to offend people. Or, in medicine, I don't want to scare somebody, so I'm going to tell them everything is just fine, wink, wink, right, um, and it's important to allow others the opportunity to serve us yeah which is easier to do when you're saying that to somebody who needs help than it is when you're sitting in the chair.
Speaker 1:That needs help, but it is. It's an important principle.
Speaker 2:One quick thing. I just saw the chat Stephanie put. Is it free will even after the education? I think you've written that yeah. How do you mean that?
Speaker 3:Yeah, I think one of the most important things that we do here in specialty care management is that I work with patients. I do CKD and oncology, so specifically with my oncology folks obviously some CKDers too but you want to ease them into certain education. Some things are harder to grasp and know and this is just done. Obviously everyone's different, so just learning that person and see what style of education they need, right, everything's very personalized.
Speaker 3:Some people you know lack education, or it can be a language barrier, or it can be just they're anxious, so there's usually a sort of barrier to education. So knowing that barrier and being able to explore that when they're ready, so you can ease in into certain education, like kidney disease, without scaring the person completely. And again, this is so personalized. With another person it might be very different, but I feel like at the end of the day you can educate as much as you want. But if that person was not ready and that's why you need to assess that readiness then they're going to listen to you, but they might not grasp it and they might not apply it.
Speaker 3:So is it important to say it, of course, but it's also very important to kind of repeatedly reassess their readiness to take in that education. A lot of patients want to focus on one thing only. For example, you have a CKD year that drinks a lot and smokes and has sleep apnea. They might just want to start with the sleep apnea for now. Right, they want to start with that. He's in you, still educated upon the other things, but you're holding off and just going step by step, and I think that's just so important because it's not overwhelming too.
Speaker 1:sometimes just too much information can be a lot yeah you can need a rhinoceros, but sometimes you have to cut them up into pieces and put them in the freezer and bring them out later right, yeah yeah, it's our habits, right, and that's for all of us, whether it's it's you or me or anybody else, and that's that's where that you know.
Speaker 2:Uh, read an interesting book and you know there's no such thing as free will. All of our it's the. What we think is free will is based on our habits, because we'll do something we think it's our decision, but our decision is predicated, based on past behavior and experiences. So, um, yeah, you're right, that's augmandino.
Speaker 1:augmandino said we are slaves to our habits. So if I'm going to be a slave to my habit, I'm going to make the right habits. Yeah, that's powerful. Ah, dave says you do not rise to the level of your goals. I lost it. Oh, you fall to the level of your systems. I love that Same thing. That's awesome. Well, um, I think you've given us some great things to think about. Does the team do you guys do we have questions for Patel? You get a chance to ask somebody who really knows is only somebody in his shoes can know. We can ask him can know.
Speaker 4:We can ask him. Yeah, I have a question. So what's what's something, what's something you're looking forward to in 2025, like, what are some big agenda items? What's the future look like for you? What are you excited about? What's the most exciting thing on your mind lately?
Speaker 2:uh, getting a second transplant, hopefully. So we'll put that. I'll just be positive and say that that's definitely happening in 2025. I am doing Kidney Kid Day. I started doing that this year and so what I do is I take pediatric kidney patients. And back to the mental health part. I know how I was a mess at my age, so I can only imagine the kiddos, what they're going through, which sometimes, with the kiddos I've met, I think they're more resilient than us adults. But what I've done is I'm taking them to professional sporting events just so they can be normal kids and hang out. So I did.
Speaker 2:A Minnesota United soccer team took them out somewhere around 40 40 kids ish, something like that and then partner with NKF Minnesota there and they actually bought some extra tickets and did kidney kids day recently, a couple of weekends ago, I took bunch of kids and their caregivers to New Orleans Pelicans NBA game and did a kidney kids day. So the goal is I'm gonna do um like the bands in the back in the day or, I guess, like taylor swift does. Now I'm going to do tour. I'm going to do a spring, summer and fall tour and um, I'm gonna try to do four per eat per session and uh, yeah, just go around the country and um, meet different people and just let people know that. Hey, you know, this is not the. This is just the beginning. We're going to, we're going to get you better and you know I'm here to help however I can. But listen, you can still live a normal life, even with a chronic illness.
Speaker 2:So you're on dialysis, even if you're just been recently diagnosed, or post-transplant, wherever the case may be. Just come out, enjoy the game for a couple hours, be normal, you know. And for the caregivers, just say thank you for what they're, because I think caregivers get overlooked sometimes and caregiver fatigue is such a real thing that I think that's it helps them also. So, yeah, so that's a. That's one of my big goals is is that.
Speaker 1:That's huge Kidney kids. That's awesome.
Speaker 2:Kidney kids day yeah.
Speaker 3:That's fantastic. I have a question as a patient what do you think has been the hardest part of your journey? Just, you know, sometimes it's very good for us as providers to see a perspective from a patient's side, whether it's changes, dietary, whether it's anything overall that you've dealt with. That you were like this was probably the hardest thing I had to do.
Speaker 2:Wow, Just one right you can name a couple, okay, um you can name this thing, okay, um, the hardest.
Speaker 2:One of the hardest things is, of course, that that thought 16 months ago, when I thought it was just done, life was over, that was the hardest thing. But you know, from that came everything that's happening now. So, you know, from that came everything that's happening now. The other thing is, I would say, the first, the dialysis, the first time around, the 15 months of dialysis, three times a week, four hours a day, that was, without a doubt, everything else seemed like child's play compared to that. So I would say those, those are the two, two hardest things.
Speaker 2:Yeah, oh, by the way, one more thing that's going to do, that's happening is, uh, doing a documentary about my transplant journey.
Speaker 2:So, yeah, so, um, going to be not just my, it's going to be my journey, but mostly going to be interviewing nephrologists and, um, also, um, a couple of other patients, um, um, a friend of mine who I met at the transplant games of America, whose daughter passed away at a young age uh, way too young and you know she, she donated all her organ, saved lives, and now he goes around still to this day.
Speaker 2:She donated all her organs, saved lives, and now he goes around still to this day honoring her gift and so being a parent and doing that, and then, of course, some living donors and just new innovations, including DeLorean, and just letting people know this is for education and awareness. So, yeah, it's my story, but I just want it to be a vehicle so people know, because, again, I didn't know how important the kidneys were in the body until I was diagnosed. So let people see real people going through everyday things. And then I've got a list of people that we're going to be interviewing and going through the country and things like that. And, yeah, so I'm going to end with, of course, once I have my transplant.
Speaker 1:So, yeah, so I'm excited about the documentary process too oh, you're gonna have to keep us posted, pesh, so we can help promote that. That'll be really great. Absolutely, I have a question.
Speaker 2:Um. So, looking back, what is something or what? What is something that you know now, that you wish you knew, or that you wish somebody would have told you when you started this journey? The diet and nutrition, how you know, I think? What is it like? Four, eight ounces of glass of water are not enough. Like eating well every single day just because dialysis is over, or like our friend who wanted to take a shot before dialysis treatment. Let's not do that. I think nutritional intervention is so overlooked. I wish I would have done that, because your boy, after dialysis treatment, would go to Burger King and grab a Whopper and and things of that nature. Or raising canes, chicken fingers after treatment, because I was just hungry and tired. I just want to eat and go to sleep yeah, and who has time to cook after that?
Speaker 1:and so it's like no wonder you are getting better did you have resources that you found that were the most helpful?
Speaker 2:I didn't even look into anything, I was just. I did not do any research until I started looking at a diet and exercise after my rejection, after I met with three into three different renal dieticians that were transplant specific and they gave me three different answers on what to do. So I said okay, thank you, let me start.
Speaker 2:Let me start reading that's what that's what started, because I I'm already, you know, in this arena, I'm a moron. So then, like, you confuse me even further with that. And then I'm like, okay, let me start doing my own. And now here I am and you know, I'm happy to say like a client, if you will, of mine. You know I've gotten him almost off of his diabetes meds with his diet nutrition and his GFR has gone up to 40 from where it was like a 25 with with some of of my methods. I've got another guy that was on dialysis. He had acute kidney injury and now he's not on dialysis anymore. I mean so like, yes, the diet nutrition, I wish I would, I wish I would have known years ago so I would have not been in this predicament potentially, um, but the staying hydrated and eating well should be told to every like kids as soon as they're two years old yeah, and I think that's we spend a lot of time, uh, talking with folks about that.
Speaker 1:Most people want to eat well and they want to live a healthy lifestyle. But when you're busy and you're gone all day and you have two hours at the end of the day, most people are like, well, how the heck am I supposed to fit all this in?
Speaker 2:and so I think, um, not just the education, but helping people with the strategies, the healthy hacks you know that and the cost yes it's easier if you're a family of four and you're on minimum wage or, whatever the case may be, on a living wage and you're feeding a family of four with rent and everything else. I mean the dollar value menu. It so, at points, is the most, is what you can do. So so I understand that.
Speaker 1:I still remember, I still remember when I was in the military and we so you make a lot I wasn't listed, I, I wasn't an officer.
Speaker 1:So I still remember going through the grocery store with a calculator to the penny and I would go to Costco and I would get the, you know, the bigger sizes and I would vacuum seal them so that I could, you know, have more things. Uh, uh, cheaper, but it is hard. I mean, how to? How do people um uh, cheaper, but it is hard. I mean, how do how do people, um, you know, have access to ideas for how they can? I mean, you can buy a bag of chips or you can buy a bag of vegetables. They're going to be about the same cost really, but, you know, some people don't have access to that bag of vegetables. It's the chips that they see. So, yeah, yeah, I think that's really important. Food truly is some of our best medicine. You're absolutely right. It's kind of like I tell people all the time, if you had a fancy Italian sports car, for me, my midlife crisis car is a cherry red Alfa Romeo.
Speaker 1:Okay, okay read alfa romeo okay, okay, if you had a hot rod in your driveway, you wouldn't go put cheap gas in it or water it down. You would put premium fuel in it. And I think sometimes we just forget in the day and in the day out, in the hustle of making a living right, that we are that sports car, whether we feel like it or not, that's, we only get one body and learning how to take care of it's really, really important there's a lot of conflicting information out there oh, and the.
Speaker 4:I think there's a purpose. I think there's a purpose to all the conflicting information and keeping people confused. On my own health and fitness journey. Like I eat all day. Every three hours I'm eating sweet potato, ghee, butter steak. I mean it's a misconception that you have to be constricting to be healthy. That's like couldn't be further from the truth. So I think it's just. You know, I think people have a of this, this diet culture keeping people on a hamster wheel of unhealthy decisions. You know so, yeah, has y'all talked?
Speaker 2:have y'all spoken with uh dr thomas williams out of university of california, santa barbara?
Speaker 1:oh have y'all spoken with Dr Thomas Weems out of University of California, Santa Barbara.
Speaker 2:Oh, his name's familiar Did he do a TED Talk on nutrition with kidney disease.
Speaker 1:I don't know that but his lab.
Speaker 2:They've developed this product called KetoCitra and they're really helping PKD patients.
Speaker 1:KetoCitra.
Speaker 2:Citra KetoCitra, and they're really helping PKD patients KetoCitra, citra KetoCitra and what it's doing is it's putting patients on a keto diet and which you know the from my all my initial research, it was like, hey, listen, no red meat, no this, no that. But this is like no, there's's no, there's no data actually saying that animal protein, because I was under the belief, um, that any animal protein is bad for you because it's harder for the kidneys to process. Well, this goes against that and I found other people that have said that too because once you're in ketosis, your body produces BHB I believe it's called it's a few syllables beta hydra. I'm not going to even try, but it produces this molecule that serves as a guard for your kidneys and that's why you can be on a keto diet. And so he has successfully him and his team have successfully helped PKD patients specifically reduce cysts, remove cysts and improve their condition from PKD using this nutritional intervention.
Speaker 1:And what's his name? Thomas Weems, and if you hold it for two seconds yeah, it's just interesting because you know what we know about high protein.
Speaker 2:Matter of fact, we see this all the time people who go on Santa Barbara nutrients is the company Santa Barbara nutrients and that's his.
Speaker 1:I'll have to look into that. One thing and we see this happen where when people go on a lot of those high-protein diets, we see their kidney function tank because, of all you know, throwing people into metabolic acidosis usually worsens kidney function. So I would imagine, Well, so that's the thing, right.
Speaker 2:That's where you have to have your alkaline vegetables with it. And then you also can't do the carbs, the sugar and everything else, Because if you're eating all the meat you want, but you're also having the bread and everything else, you're not in ketosis, right. So you're not producing that molecule. So I think that's that's where it stands.
Speaker 1:And again, he's the expert keto diet are not truly following a keto diet, to your point. So, yeah, that would be interesting. I would love to see a toe-to-toe when you go to the spring clinical meetings or annual dialysis conference, which is coming up, and you see the physicians go toe-to-toe on topics. That would be a really good one. Um to listen to them hash out yeah.
Speaker 2:Tim, I'll, I'll, uh, after this, I'll um set up an email between you, thomas, and I, just so I can make an introduction, you guys can have a conversation. I think it'd be very valuable, I think it'd be a good guest for you guys. Just a different perspective, cause, again, nobody knows everything. So if we can get and he's been successful. So what I'm doing now and the reason I have this is they sent me, uh, a thing of this. So I'm like now that I'm on dialysis and all the amino acids have pulled out of me during the and I'm not. They're not pulling anything, they're just cycling yeah but I'm still losing aminos and stuff.
Speaker 2:So I'm going to combine my diet that was successful with the keto, and let's use this keto citron let's see how it goes for a non-pkd patient yeah, it would be interesting too.
Speaker 1:You know muscle wasting people. When they start on dialysis they do lose a lot of muscle proteins are really tough one, because we, you know we're not supposed to have too much right, because it's hard on the kidneys.
Speaker 2:But we we know we're losing muscle mass and we lose protein, so it's that's a really tough issue, but I think if you have the rest of your diet out as alkaline as possible, then I don't again. From the more I read and I'm I'm sure once you put this out and people are going to hear me say this there might be a bunch of comments telling me hey, just stay in your lane, buddy, which is fine you are. I admit that I'm just learning, but I welcome all the information. I do welcome it.
Speaker 1:Well, we have patients that ask about that all the time, and I think one of the things that you brought up that was really important is keeping the alkalinity at play. That's really important. Just out of curiosity, do they have you on baking soda as well?
Speaker 2:Soda and bicarb.
Speaker 1:Yeah, yeah, yeah, very interesting.
Speaker 3:The main concept of that is a lot of people want to say, like Kimberly said, they're keto, right? Yeah, very interesting, you know a new nuisance, because if you're doing things that are at the right way, it can give you a result that you want. The problem is, sometimes we skew away from that and then we just kind of tweak it in a way that we're really not doing what we were meant to do. So right. Yeah, I'm interested in seeing more.
Speaker 1:Well, and your labs are going to tell you it's like an experiment. Right You're going to absolutely absolutely, and your labs are going to tell you it's like an experiment, right?
Speaker 2:No, absolutely, your labs are going to tell you if you're doing it right. Yeah, and I'm getting labs every two weeks. Once I've started this, I'm doing labs every two weeks, not just to see how it's going. But, stephanie, to your point, that's. The biggest issue I'm having is the fats, because, you know, having the butter and uh, they just mentioned ghee and all that I'm trying to stay away from the dairy too, so it's like, okay, now I'm cooking, now I'm cooking with avocado oil. Fine, okay, that's just one thing. But where else am I getting my fats from if I'm not having it? Because I'm tired, yeah, I feel a little weak the first few days.
Speaker 2:Oh, my goodness, it's like okay, just give me, just okay, maybe a slice of pizza. No, you can't do any of that. That's what I see.
Speaker 3:That's what I see with the keto, and that's why I get it. I see that too with intermittent fasting, for example, too.
Speaker 3:A lot of people just tweak it in their own way and, yeah, you know, for certain people these things can be helpful, depending on their diagnosis. Like, diet is so personalized, so what works for me might not work for you and that's why you just have to keep asking questions. But if they're, if you are going to follow a diet with your providers, you know consideration, make sure you're doing doing it right. Yeah, I feel like my nephrologist.
Speaker 2:Hopefully my nephrologist doesn't watch this because, uh, he doesn't know I'm doing this, so I'm just let him know later when he's asked me what the hell's going on like when he sees your labs.
Speaker 1:And he says something like man, I don't know what you're doing, but keep it up, then you can tell him well, he did.
Speaker 2:He said that the first time when I got it from 8 to 20 and he was shocked. So, yeah, so trusts me enough to know that I'm not going to go. But no, if any of you have any suggestions on what I can do for healthy fats that is not dairy, please let me know, because even avocados I have to be careful because of the potassium.
Speaker 1:Yeah, I know, and avocados are like oh, I would hate it if I, if I had gout and I couldn't have shrimp anymore, I couldn't have. Uh, yeah, I don't know, I would have a hard time. Yeah, yeah all right, well, gosh, thank you everybody, and pash, we can't thank you enough, uh, for sharing time with us. I know dave will holler at you and we'll set up a time in the next few months to connect on a webinar, and I'm sure you got some good fodder out of our conversation and just thank you so much for sharing your time and your insights.
Speaker 1:Really appreciate it. It's wonderful to spend an afternoon with you, Pesh.
Speaker 2:Thank you so much for this time. I really appreciate the platform. And for those of you on Instagram, of course, follow me at akidneylife. That's my Instagram handle, so all my stuff's always on there.
Speaker 1:Okay. Is that the best way If people have questions and want to reach out to?
Speaker 2:you directly. Yeah, that's the best way. Or the email address is pesh at a kidney life dot com. Yeah so all my social media channels is a a kidney life linkedin all that, everything you can find it through a kidney life and my kidney life dot com a kidney life dot com a kidney life dot com okay and I'll shoot you an email, um, tomorrow, tomorrow or Monday with ideas about what we could do in January or February with a broader audience.
Speaker 4:Like maybe we can make it interactive with some quizzes. Ask the audience, like you know. Maybe the title of it is like what I wish I knew you know before starting dialysis, like hook people in. So I'll send you an email and you and I can always hop on a quick call next week and figure out how we can help amplify your platform and help you meet some of your goals. That would also be meaningful to to our audience.
Speaker 2:Yeah, and whatever you guys need from me, please do not ever hesitate to reach out. I'm not hesitating.
Speaker 1:Keep up the good work, Pesh.
Speaker 2:Perfect, thank you so much. Thanks.
Speaker 4:Kimberly. Thanks everybody.