Coach Mikki and Friends

Blake's Battle with FSGS and the Dawn of Medical Innovation - UCLA - S4E1

January 17, 2024 Coach Mikki
Coach Mikki and Friends
Blake's Battle with FSGS and the Dawn of Medical Innovation - UCLA - S4E1
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Every so often, we cross paths with a story so powerful, it redefines the essence of resilience and hope; Blake's journey is one such saga. Born with underdeveloped kidneys and later diagnosed with FSGS, Blake's tale is a testament to enduring the highs and lows of chronic illness with unwavering spirit. His path has been paved with challenges, from the heartwarming generosity of receiving kidney transplants from both parents to grappling with the harsh side effects of lifelong medications like prednisone. Throughout this episode, Blake opens his heart to us, sharing the personal victories and the formidable obstacles of his condition.

Imagine facing a life where your daily routine is dictated by the meticulous management of anti-rejection drugs, and where your childhood dreams are set aside due to the limitations of a relentless disease. Blake's narrative is not just about the tribulations of his health; it's also a journey through personal transformation, as he shares the impactful moments of significant weight loss and the profound influence of Dr. Jeffrey Veal of UCLA, whose innovative approaches to kidney transplantation and stem cell therapy are shaping the future of patient care. Our conversation traverses the emotional and practical terrains of life with a chronic illness, offering a window into the compassionate bonds that fortify those affected and the pioneering medical strides that hold promise for a life less burdened by medication.

As we round off our exploration of Blake and Teresa's awe-inspiring journey, we're reminded of the broader implications of their experiences for the transplant community. We delve into the potential of medical advancements like stem cell therapy to transform lives and the altruism inherent in organ donation. Blake's involvement in cutting-edge treatment options underscores the relentless pursuit of a better future for those living with kidney diseases. The episode not only honors Blake's resilience but also serves as a clarion call for empathy, advocacy, and the transformative power of medical science. Join us to witness a story of extraordinary courage, the love that empowers it, and the innovations that might just change the transplant narrative forever.

Dr. Jeffrey Veale, - UCLA

We look forward to seeing you succeed! - www.KeepOnSharing.com - Code - KOS

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Speaker 1:

Hey, I'm Coach Mickey and I'm so glad that you've joined us. If this is your first time joining us, come on in and make yourself comfortable. For those of you that joined us on a regular basis, I am so glad that you do. I welcome you. Happy New Year. This is amazing. We're going to kick off 2024 with an incredible guest today. I'm very excited to have him on. For those of you that listen on a regular basis, you will know the connection because I had an opportunity to interview his wife, terese, and she has a fecunewborn. I was very honored and I felt very honored. It's the only word I can look at, because when you hear Blake's story, not only is this going to touch your heart, but this is also going to give you an insight that there is hope for many of you that have gone through, or some of you that may be going through, or knowing someone that may be going through, the same or similar things that he has. I'm just going to start right from the beginning. Blake was born with an underdeveloped kidney and it was childhood. What is it, blake? Forgive me.

Speaker 2:

Neurodic syndrome.

Speaker 1:

Thank you so much as you guys know, I'm pretty street-star, but again, as it comes to medical terms, it's going to slow me down a little which led him to needing his first kidney transplant at the age of five, after dialysis and a kidney donated by his mother as an infant. At 15 years old, he went under the care of the University of Los Angeles at USC. Then, at the age of 16, blake transferred to UCLA under the care of Dr Gabriel Devonovic. Is that?

Speaker 2:

correct, danovich. Thank you, dr. Gabriel Danovich.

Speaker 1:

Yeah, at the age of 28 years old, the kidney that Blake's mother donated to him failed, unfortunately leading Blake to need a second transplant. And at the age of 20. Blake's brother and father were tested and found that they were matches to donate their kidney to Blake. Blake's father donated his kidney and to Blake on July of 2008. Since then, blake has seen his fair share of challenges, with reoccurring every 12 to 13 months and managing this anti-injection medicine since age five. Blake was also hopeful for a brighter future and not needing. You know what, blake? I'm not even going to go any further. I'm just going to go ahead and let you share your story because I think it will impact and you saying it's going to have a lot more validity than me trying to just read your bio.

Speaker 2:

So go ahead.

Speaker 1:

Let's just jump right in. Actually, let's do this. Let's stop for a second, take a breath. I'm going to let it go blank. I'm just going to introduce you and I'm going to let you tell your story. And I'm just going to give the introduction. As Coach Mickey and friends, I'm going to jump right in and I'm going to let you do it. How's that Perfect?

Speaker 2:

Yeah, I know that works.

Speaker 1:

Yeah, I want this to be solid and I want it to be crystal clear. I don't want to have any hesitations or screw-ups.

Speaker 2:

On my end.

Speaker 1:

I'm referring to me.

Speaker 2:

No, not a problem. Okay, I think I'm the one that's going to make some plugs, so don't worry.

Speaker 1:

That's all right. At least you can get the medical terms right, hopefully, yeah, all right. So here we go. Let me take a pause. Hey, I'm Coach Mickey. Thank you so much for joining us and if this is your first time joining us, come on in and make yourself comfortable. And for those of you that join us on a regular basis, I am so glad that you do Welcome. Welcome If this is your first time. I am very excited to have on this guest today. I think he is going to offer some serious and value to what maybe some of you are going through or maybe that someone you may know was going through, and I'm very excited to have him on and I feel very honored and the connection that I had with him was with his wife and, for those of you that listen to my podcast on a regular basis, you had an opportunity to meet with his wife, terese, who has the Fika newborn, and her family is amazing. She's amazing, and when she told me the story of her husband, I was very honored and felt very excited to have him on as my guest. So, without further ado, thank you so much, blake, for joining us today. I'm going to let you jump right in with your story.

Speaker 2:

Yeah, no, thank you. I think my story is actually fairly common one, but in terms of a medical situation, I was born with underdeveloped kidneys and that's all I knew growing up was bad kidneys, but I was born with these underdeveloped kidneys. That led into childhood nephrodite syndrome, which is now FSGS. I was under the care of Children's Hospital of Los Angeles from well baby USC and Children's Hospital from baby. I was in the hospital for nine days after I was born and then after that I was under the care of both of them my doctor, who is a wonderful doctor, wonderful man, dr Lawrence O'Pest, and his colleague, who was, I believe her name was Donna Elliott. They took care of me and among a ton of other doctors and nurses and amazing staff. And when I got to about 15, the doctors just said hey, you've gone through puberty, your voice is cracked, you're not a child anymore, so we're going to. You need to move to UCLA. So they said you need to find different doctors to help you because through adolescence my kidney was just always getting recurring FSGS and what that is is essentially the filters in the kidney are being broken apart by the protein that it's supposed to be filtering, so there's just too much of it and it breaks the. It breaks those filters apart and eventually your kidney will fail. So my dad called Dr O'Pest and they talked and eventually, through the conversation he said go to UCLA and get with Dr Gabriel Danovich. And I've been with Dr Danovich in UCLA for since 15, essentially, so I'm 36 now, so I've been with them for quite some time and have they've helped me through so many different parts of my life. They and just that, my second kidney transplant. The doctors when I was a kid always said if we can get you through adolescence, then we've done our job. My mom donated her first kidney to me when I was five and so they got that, got me through adolescence I was 16 years, I believe, of kidney working and I had a really great childhood. But I always felt like the oddball out, the kid that had to have these immune suppressant drugs if I were to go to a friend's birthday party and it was an all nighter. Or go camping with my family. Or, as I got older, then went to Romania and in high school and I had to take my medicine with me. But you also have to think about, well, what if something happened? So I had to find a doctor over there that, just in case something happened, I had a doctor that I could get to. So it was always something. And by 20, that kid my mother's my mom's kidney had failed and Dr Danovich and his amazing team at UC the team at UCLA took care of me, my brother, my dad. They went in for testing to see if they're a match they both were a match and Dr Danovich and just said hey, you know, we're glad that you're both matches, but we're going to go with the dad because he was older and it's. It just makes more sense to go with the older kidney, just so that if your kidney does fail, you have you have that backup kidney. So I I got the kidney transplant and it wasn't smooth sailing. I remember very, very vividly that the kidney transplant happened and I was in there for a very, what felt like a million years, but it was, I think, about two weeks, as in the hospital, which is not common, usually you're in for about a few days and you're out as transplant patient and the FSGS was just ripping my kidney apart. And I remember very vividly Dr Danovich and the team were in my room and they said we don't know what to do. Your kidney's not working, it's just I think it's going to fail and we just don't know what to do. So they put me on a first plasma foresis, which I can't even count how many times I did that. I'm a 20 year old and I have this long tube coming out of my neck and just just didn't feel very good and nothing would seem to be working. And I remember the the Dr Beal talked coming into my room and he did. He was we'll get to him, obviously, because we're talking. I want to talk about the tolerance program at UCLA. But he didn't come in to talk medicine, he just came in to see how it was doing. And that's how UCLA was. Sometimes they just want to say how are you doing? They cared about both your, your physical and mental. And Dr Danovich and at the time Dr Wilkerson he's since passed both came in after countless plasma foresis and said, yeah, we're going to lose this kidney. We have a we kind of have a Hail Mary here and I know that you're a football coach, so you'll like that reference and and she and they said we're going to try something. Hasn't really been done yet and now it's done quite often, and that was at the time. They were calling it a chemotherapy. It's not, it's, it's an antibody therapy. It's called rituxanab I think I'm saying that correct, and rituxanab, that's how it's said. And they did it and my kidney bounced back my, my dad's kidney. It took and I've had my dad's kidney for I think we're on 18 years now, something like that. And there's been challenges I've had every about 12, every about 12 to 13 months my FSGS comes back and wants to just destroy my kidney. And the challenge that first was getting my nephrologist that weren't connected to UCLA they're connected through a different medical provider getting them to understand that it's happening and this. Often they kind of weren't listening and they didn't want to see that. And when rituxan happens the best way I can describe it without your ankles get swollen, you get grumpy, everything hurts, like you're tired all the time. Not rituxan, the FSGS, sorry that when that disease happens, when it comes upon you, you like it really comes upon you, and I guess the best way to put it is like you feel like a pregnant woman about to pop, like you're nine months in and and you just want that baby out. And with the FSGS you're just you're, you're tired, you're, you don't want to do this anymore. And I finally, now they, they, they were convinced oh, it does happen. So now I do it. Every about 12 months I'll go in for an infusion and the good thing is it's a kind of a double edge. I feel lucky that I am able to go get this medication done every few months, every 12 months, and it also kind of pumbles me and makes me realize I'm not in the worst of positions. I look around and I see patients who have horrendous cancers and and other elements that I I'll take kidney transplant patients every time, over what I, what I've seen. And so it quickly makes you realize you're not in the worst of positions and they I've been able to learn so much from the patients and the doctors going through these different things. But at the same time you can't you kind of feel bad when you do complain about the medications and because you got a life-saving treatment or you got these life-saving immune suppressants, but and you feel bad if you do say, oh man, this sucks, I have to take this medicine every day and and that's what I've grown up with, I've grown up with these medications. They haven't changed for 40 years and they're not going to change them. Why change them? We're desperately in need of them, so why change something that people need? So, yeah, I'm very blessed that I have a healthy kidney right now and that I'm in a position where I can live my life to somewhat the fullest, and and that I'm extremely aware of.

Speaker 1:

That is. That is a very difficult journey, especially as a kid, as a as a teenager. You know going through your 20s and I can't even imagine how scary it must have been at times. You know, especially going through what you were going through and then you know, always wondering in the back of your mind is this going to work, is this going to be okay, is this going to be my life? But it sounds like from what you just said that when you do struggle with the FSGS that there is another alternative out there. That seems to make this. Not that this is going to make it easier because of what you're going through, but it kind of takes the edge off of what you were doing compared to what opportunities you have now in the medical industry. So how tell me how that transpired? Like you know, what's the difference now with what you have now compared to what was happening then?

Speaker 2:

Yeah, so as a kid, when they at the time they'd call it Childhood and Product Syndrome, but they're identical to my understanding and knowledge. Again, I'm not a doctor and I am in nursing school, but I haven't completed so I can't say anything on that end. But they're both. Fsgs and Childhood and Product Syndrome are the same, it sounds like, and as a kid the doctors didn't have this Rituximab medicine. It was. We're gonna pump you full of prednisone, which is a steroid, and that's gonna just your kidneys. It's gonna help your kidney At the end of the day. All of these medications, these immune suppressant medications whether it's tacalimus, prednisone, mycortech, which are the medications that are given and there's others, I'm sure, out there, marianne, I took as a kid which is disgusting vial oil that you I kind of I could still taste, and it's been 30 years they they hurt, they choke off the kidney. They end up the thing that's keeping you alive and keeping you able to do things is what ultimately is what takes out your kidney. But as a kid, they, they would give you these medications and the side effects of prednisone alone. I was looking at some photos of my dad gave me for Christmas a box of photos and I. I looked at photos of me before my kidney transplant, before being on any medication, and then me when I was on a high dose of prednisone, pre kidney transplant and then one after the transplant, about a year after. And the difference that it changes your, your face and it changes your appearance. The medication prednisone gives what's called moon face. You get really puffy. You know, as a kid everybody said, oh, you look so cute because you have the puffy, puffy cheeks. But they don't realize those cheeks were because I was on this, this really terrible medication. It wasn't until recently I was taken off of prednisone. I've been on that my whole life and finally, after 30 year, 34 years, whatever it is, I've been taken off the medication prednisone, which has been great. But I've noticed that there's a change in my mood as well. I'm it's a steroid and steroids can make you aggressive and grumpy and I'm already kind of a grumpy person. I, it's just I'm, that's, I guess who I am, but I'd say that ingest, I guess I love people and I love helping, but it and the medication was making me a little grumpy and a little aggressive and I never knew that until I've been off of it, and as a kid I was always had little temper tantrum, but not the normal childhood temper tantrum like my kids, even though they're little angels, they have temper tantrums. They're not angels at all, they they have temper tantrums and you just look at them you're like what in the world? But what I would have was very different, and it was. It was from aggression which I was lucky enough to wrestle growing up and through some of high school. But I couldn't finish wrestling because my FSGS, when anytime I get really active, especially through adolescence, it'd come back and destroy my kidney. So I wasn't able to continue my career in wrestling or in sports because the FSGS just was always activated that way and the the medication was always let's put them on more prednisone and make me more aggressive. So if you can imagine there's a guy, a high school or a developing man that wants to wrestle because that's a good, healthy outlet to get that aggression out there. And then I couldn't and so I had to put all my that energy and that aggression into other healthy outlets. So I got into leadership and I was in high school ASB and then I ran, help run my youth. I ran my youth group, help run my youth group. Depends who you ask. Some people would say I ran it. Some people would say they, you know, as someone else, but I'll always contest that I was the one pulling the strings there and. But I had to find a better outlet for that aggression. And it wasn't always perfect and I felt, you know a different, because I'd be super thin. But then I'd get on the prednisone at high doses and all sudden I got big, because it makes you feel like you're hungry all the time. So you need and and on top of that you're probably a little. I was probably a little depressed without knowing it and I I know for a fact now, as I'm older, I like to eat my feelings and that that's not good for a kidney patient to just, oh, I'm, I'm depressed, I'm gonna eat, or you got to have that healthy balance. So these medications really did change a lot. They changed my appearance and I mean everybody. You kind of got, I got used to it and grow some thick skin and. But I got used to people saying, oh man, you're super hairy because the medications would cause facial hair and they I mean I was in kindergarten, I was shaving more than my dad and I just got used to people like, oh my goodness, that's, you're really hairy and that sounds super personal and super weird, but at the same time, those, those are the realities of these medications are. They change your, your body. They change certain things. These are the side effects, and so I'm glad I am out of the op-apprentice zone that one I am, and recently I've lost a hundred and I think I'm at 125 pounds that I've lost and I've been able to come off with some of the medications and not not, I should say I've been. They've been able to lower those medications and the milligrams because I'm at a healthier weight, and that's one thing that, no, the doctors are so focused on your kidney that they sometimes forget to tell you hey, you got to eat healthy, you got to watch for these things, because that also will destroy your kidney quickly yeah, I think there's a balance, especially for what you were you're going through and then having to to work with that, plus, I'm assuming, all of those medications that you're on.

Speaker 1:

Like you said, one medication might, you know, present one issue and then another one might be another side effect. So you're, you know, here's your body trying to take care of a kidney that is in, you know, in your body, and then all of a sudden, you've got these medications that are not only maybe undoing this good kidney but also causing all these other issues. Which leads me to the next question that I have, and I had an opportunity to research and and see this program and this is why I'm very excited to have you on. I want to move on to your interaction and what happened and occurred with Dr Jeffrey veal, because this is so inspiring and groundbreaking and and I this is, I know that made the difference not only in your life, but also many of the people I had seen. So can we?

Speaker 2:

I like to hear a little bit about that, that interaction oh, oh man, there's not enough to say about UCLA, but there's. I mean, I could talk about them forever. But Dr veal, our interaction first started with just me in the UCLA clinic. He was going over, okay, I'm gonna be your transplant surgeon and he was, but he was a funny guy, great, personable, everything you would want in a doctor. And I got my kidney transplant and I saw him maybe once or twice after that and because he's he's again, he's a kidney transplant doctor, he's not doing my, my care in the sense of my labs and that. That. That that's Dr Gabriel Danovich. Well, I randomly I don't know what it was, I think it was just a combination of being tired of being on these medications and a combination of just there's one day the medical world has come so incredibly far. I mean, the doctor when I was a kid, told my mom, hey, and dad, hey, if this was 12 years earlier, we would be telling you, like you probably should go and look for a cotton, and I know that's grim and I know that's, but that's the reality of at the time. Well, so that was kind of I don't know how to put it, but yeah, dr Beal, like he. So I put in my Google alert. If there's ever just something about something that could save the be a cure, I wanna know. Well, about end of October of this year, alert came up and it was about FSGS and a what's called the Tolerance Program or the Immune Unsuppressing Kidney, free Kidney Transplant, and but that's what UCLA is doing. But what first came up I guess I should back up a little was this article about a guy who's now and it's somewhere in his 20s and he. He had the same things as me. He had a, he had FSGS and he got a kidney donation from his mom at the age of five or six, maybe a little older, from Stanford University. But the difference was FSGS ruined that kidney and by within what sounds like weeks and he was on dialysis until he was 20, 19, 20 years old and he finally got to the point and this happened. Dialysis isn't a long-term cure. It can last a while, but eventually you you could pass away from it. There's just dialysis is just. It's kind of a bandaid trying to plug, kind of hold things together while we're getting to that, getting that transplant. Well, the gentleman and I know he's since passed I don't know the doctor's name off the top of my head, he presented an idea that, hey, why don't we take some of the bone marrow out of the dad and we'll give you a bone marrow transplant and then the kidney transplant. So they did the transplant, and long story short, because it's a great story, it worked. But it didn't just work. He never needed to be on the immune suppressant drugs that I've talked about. He, his FSGS is, has never come back, and things that this. This is never. I don't think any transplant patient would ever have thought this is possible. A lot of transplant patients I've talked to over the years have always kind of held hope in terms of 3D printed kidneys or washed kidneys, where they take a kidney and they wash it in terms of DNA and everything and they put your genetics in there. But now there's this point what? So? That was what Stanford did, and it was a simultaneous. But me being just very interested in medical but also wanting, I want to cure, I want, I want to get off this for not just myself but for my family, for my friends, and I started going down the rabbit hole and just randomly found out that UCLA Dr Veal had been working on a immune, an unsuppressant transplant tolerance program for 10 plus years, but they hadn't done it until recently. And what the, the tolerance, is important thing to understand. Not only is tolerance important across the board with people and, but with medicine it's a very important thing. And with the first kidney transplant it was, it was identical twins and the reason they were able to do it was they were able to have the tolerance. And the doctor who did that transplant, he's honestly one of the great. He's a great doctor and I know Dr Veal would agree. But he he broke, he had to break his, his, his oath to that with the Hippocratic oaths, because he didn't know was he going to cause harm? Was he not going to cause harm? He didn't know any of this and it worked and that's great. But do it sometimes doctors to to get to that? I mean I'm not, I'm not wanting doctors to run around and and do bad medicine and and break their Hippocratic oath, but sometimes they this doctor had to to to save this patient's life and he did, and Dr Veal and his team. There's a doctor I haven't met, some of them and Dr Nassai, I think is how and and, and I mean this isn't just a kidney thing, this is a huge undertaking multiple. There's radiology, there's urology, there's multiple facets that have to come together and work together to get this to work. And so what, dr Veal? What they're doing over there? They're the only, they're the only ones that can do this right now. They, they take the bone marrow and it's not the. What we know is back in the day they would drill and then they pull it out, they give, give the donor a shot. The donor has to be a match and they give the donor a shot, and then the donor goes on what's kind of like plasma pharesis or or dialysis machine for four hours, five hours something, something like that and they pull out that that very much needed, life saving bone marrow and then they cryo freeze it and then when you get your transplant, they do they, they give you, they're able to do the transplant of the kidney and then they'll do the, the bone marrow. And right now, the greatest thing this is this is, if anything gets taken away, forget about me Dr Beal's team's batting a thousand. So they've done 10 plus cases and they're batting a thousand. There's the, the first, I believe. Talking to Dr Beal, who some of this? The reason, I know, is I, I reached out to some podcasters and prior to this pod, just trying to, I wanted to get the word out because I felt like once I read it, I just said I need the word out so that I can get this. I had called UCLA and I talked to what I would say is Dr Beal's right hand lady and she said she took all my information and she said call us back in June, we'll see where we're at, because at the time they were at siblings, so the brother, sister, sister, sister, whatever it would be, they were at that part of the trials and they weren't at my that part of the trials where it's a father and a son who are 18 plus years out, and so I said okay, and that was the end of it. That was in November. And then, dr Beal, it was December 26 and I'm sitting there, kids are playing with their brand new toys and we're just kind of relaxing and my phone goes off and I see the 310 number for UCLA, for Los Angeles area, and he said, huh, well, that's, that's weird. And I picked up in his Dr Beal. We talked for probably an hour and a half about and he didn't call to talk about the tolerance program. In fact, he called just to say hi. According to him, he may have just that, may have been a cover, I don't know, but I'd like to believe in my heart that he was just saying hi to me and seeing how he's doing. So he said he saw my name and he said that I'm going to. So he but I mean we're talking, the 26th is the day after Christmas and he's back at work, hard at work, and probably all of these guys are back at work trying to get the next step for the tolerance program. And we talked and I told him this is super random, but I sent out some hope, that's okay. I sent out some emails. I said this has got to get to known, podcast wise, or whatever. The word has to get out. And he said you know, if you you did that a few months ago, I would have said no, no, no, we're not ready. But now the word needs to get out, the word about the tolerance program needs to get out and how it works. We need to educate people. We need not and it's not just educate the kidney transplant patients. We're hard enough to educate because we're kind of stubborn anyways. It's their families, it's their friends, it's the, the, it's, it's the masses per se. We need to educate and let them know. A UCLA has a program now that is working, that not only is it working, it's getting people off of their immune suppressant drugs all the drugs and it's getting they won't need another kidney transplant unless there's some type of event that happens outside of their original disease, such as they got a car accident, something like that. And I said, okay, and we talked about it. And the, the origin, the guys I believe it's the first two guys that got it done the, the, the recipient. So there's something called the chimerism and I'm probably not saying that correctly and that's what they're watching. They want you in the thirties plus and that's that's just. It's basically. It's showing them hey, like the donor cells are still working really well. Well, they don't know why. This is what's great. Doctors are brilliant and sometimes they can't even answer the questions. They don't understand why. But the first gentleman that received this has zero. He's not in the thirties, he has zero chimerism and he still doesn't need any of the drugs. His kidney is working amazingly. He's living a life with immune, without any of the immune suppressant drugs, and that's amazing. That's one of those things that I think should make everybody, because, if you just look at it, oh well, this is just kidney related. No, no, no, no. This is a huge breakthrough for the medical community because, yeah, right now UCLA is only doing it for the kidney, but Dr Veal and his team, they're not going to just say, okay, well, we're going to stop there. They, they're going to figure out how do we get this to, just how do we do this for liver patients, lung patients, heart, because those all require a deceased donor, and I know that they are working on that and it's going to take some time. But there's not that they don't understand that science. It's just how do we do it ethically and and they're going to get there and it goes on beyond that. I'm sure this is going to impact far reaches in every corner of the medical community is going to see how this could be. I mean, my disease is an autoimmune disease. Maybe this will help other autoimmune diseases out there that are really harsh and, who knows, it could help cancers in some sense. I mean we already know that cancer patients some cancer patients get stem cell and they so I mean this is a huge breakthrough and I mean this is worthy. In my opinion it's worthy of that the team at UCLA and getting a Nobel Prize, because ultimately, what my problem is I don't know why I can't get it done right now is I'm 18 years out from my transplant. So are they waiting for my kidney to fail? No, they in fact don't want that at all. They're waiting to get through the trial. So then part they're on now are like a child and their parent. Now, I say child in the sense of someone older than 17, because you don't want to radiate a child, because you have to take a small dose of radiation. They don't want to do that. That messes with their bones and different things. So they're now doing and it's kind of simultaneous but they're transplanting and there, but I guess it's more retroactive and simultaneous, but which means they're taking, they're performing, the kidney transplant before the they put in the stem cells, which, if I, if you remember, I talked about the Stanford, it was opposite it was stem cells, then the kidney transplant, this one. They're doing it retroactively and with me it would be a very retroactive because I'm 18 years out of my when I had my transplant. So they're, they're. They just. I mean, like I said, they just started the next part of the trial, fda has approved them and there's some great programs that they're. I mean a big thing is it's finances. I mean this is not a cheap thing for anyone that, like in my position, it would be $70,000 for myself and my, my dad, who would be my donor of the stem cells, because medical insurances don't cover this yet. It's a big deal. But it's believed that I mean I truly believe, and I think Dr Beal and probably everyone at UCLA would say that this is going to be the gold standard. You go in for transplant for a kidney and then you're going to have this as well, so that you never have to do anything in terms of drugs. You just that's what you get, and I've been on these drugs for 30 plus years and they cause nasty side effects cancers, all that, as I've said, and and you kind of feel like you can't complain and to some extent I think I've done a good job at not complaining. But there are definitely days I feel like, do I really want to take this fistful of medicine in the morning and at night? And with kids running around, I always have to make sure that I take my medicine a certain way, so nothing falls on the ground, and it's just all these different things that I would like to not have to do anymore, because I just want to live a normal life. I told my parents when I read about Dr Beal's what they're about the tolerance program. I told my parents and I choked up. Then I've actually choked up and cried about this a few times because it's that amazing. But I also now I can say it without choking up I hope If I ever get this tolerance program, if I ever get the get to come off of my medications, everything I'll feel normal. Now my parents instantly said well, you are normal, but they don't understand a kidney transplant patients and other transplant patients and would understand that, well, yes, I am normal, but I would like to. I don't feel normal all the time I have to take I have to take different medications that mess with me. I can't. I mean for me it was really hard because I think, would you want to be an employer and of me, I would hate to employ me because I would literally, oh, I have to miss some days because my kidney or I woke up. I didn't feel like I'm so lucky that my wife that she's, I'm a stay at home dad. And that was the decision we made. We, we, we fostered, we started to foster children and when we started that, my wife said you, you stay at home, you, you take care of the kids, you work with the kids and I'm going to go and I'm going to work. And she actually worked at UCLA at the time. And she, she did that not only because she knew like I really wanted to be a stay at home dad, because I love children, I love youth. She knew like in her mind was it was a way to keep me healthy longer, because she's always in her back of the mind is is he going to make it another year? I mean, this, is kidney going to be OK? And she would see how tired I was after work and as someone that I would get frustrated because I would have to call out work because I was sick or I had to go get Rituxinab, all these different things and and I know I've been talking a lot and I got more you have more questions, but one. When my wife and I first got married, instantly, within the first month or two of our marriage, my, I got sick and had to be on Rituxinab and my legs locked up and I was getting and I couldn't move off the couch. And I remember I was just going to sleep on the couch and and she went and I turned off all the lights. I thought she went to bed and all of a sudden I I feel this hand trying to and she hates the story, but trying to find my hand and she was sleeping on the ground because we had a small couch where newlyweds and she was she's lack of a better words and I want to make this very clear to everybody she was groping for my hand, even though we're newlyweds. I wasn't feeling good. So she she was looking for my hand there's a better way to put it and she found it and it just right then. I mean, I've always known she's the one. But that was like a huge moment in our marriage, like I knew that I had a partner that was going to stand by me and not only do what's best for me but for the family. But she was going to always look out for me, just as I would look out for her.

Speaker 1:

You know, because I've had an opportunity to interview Teresa and I've heard her story, you know, and now I'm hearing yours. I have to tell you, blake, I don't think I have ever met a more compassionate, loving, kinder, generous couple than the two of you, knowing Teresa's story and what she's been through. And then also I know you guys have adopted children, plus you have also. You have your own children and then you've got your own challenges that you go through. And still both of you can always seem to find the positive and the light. And hearing this story about the kidney and this promise and like this, this hope that something down the road for you can be so positive and change, completely change your life, you know, good things happen to good people and it sounds like you have completely surrounded yourself with people that truly can do the job but also care and can bring this to you. And again, I'm just, I'm going to say and coming from me and in my humble opinion and from what I see, I truly believe that positive and something amazing is down the road for you. I watched those videos about Dr Veal and I saw the stories and I heard what was happening and this doctor sounds like he is the type of person that you know. Like you said, he was at work the day after Christmas and it's his passion, it's his life, it's his life, it's everything that he is trying to do. So, while you were down the line a little bit, because you know, because of where you stand, you know, especially with the stem cells and how long it's been, but I truly believe if anybody is going to do this, it's going to be this Dr Veal, because he's, he really is on something that's groundbreaking. But also for you. You're a, you're a fighter and you and you, you see life in a different way and you've gone this far. So for you down the road and for what's going to happen, I really really, genuinely, truly hope that that this is found and can produce I'm so, I'm getting choked up produce a life for you. That is just absolutely amazing. I really really hope this for you. I do.

Speaker 2:

Oh, thank you. Yeah, I mean, this is one of those programs that's life changing. It really is. And I mean, and the cool thing is, I, this isn't. Oh, man, I got to go get radiation. Everything's an outpatient procedure and it's, it's not. It's not what I think we imagine and I think that needs to be very clear as we're trying to educate. It's when when I might when your donor goes to get his, his part, you go and get your radiation and then you're both your home the next day you go and get your stem cell infusion and or whenever they would assume it's the next day, and Then they just watch, they. It's almost like a waiting game. Is this going to work? Is is Are they gonna get crime eras them? Is are they going to Not have? I think it's called graft donor, graft recipient Rejection. I could be wrong on how that and they have to watch all these things. But again, they're batting a thousand and that's not. Oh well, we're batting a thousand because we're beating. They are probably being picky, but they're also picking people that really need it. They're not just saying that. And the fact is there's 80,000 plus people on the kidney Waiting list to get a kidney, the kid and out of that, 80,000 plus, that's 20% that are people who have already received a kidney transplant, like myself and I'm. I'm lucky I have Two parents that said, hey, I'll give you. I mean that I don't even know what their thought process was, because there wasn't one. I think they both. They both said they'd give me a kidney when I was a kid and they both tested and Even though my mom said not to tell the story, I'm going to they tested and they were gonna go with my, my dad. And Then this is the part my mom's like don't tell that story. Haha, suffer, my my doctor told my, my dad Clearly like you're not the dad. This is like the doctor was looking at the, the labs and something and was like, well, you're not the dad. And it's like, well, he is my dad. There's no doubt about that. And they Were. It was down to the final. I mean we're supposed to have it done in February of 92, I believe it was, and the, the surgeon was well, why aren't we talking about the mom? And Well, I mean, she has O negative blood. And the surgeon kind of laughed. He's like that's a universal blood, why won't? And she was a perfect match across the board, a perfect match. So I Mean just again, like I was lucky that at the time I had a wonderful doctors and surgeons that just got behind it and then Knew what was best, that my mom was the best at the time because she was a perfect match and a lot of people don't have that. I have a Friends who have had kidney transplants and I had a friend who's he uh he was on dialysis for a long time. I mean I was a kid when he was still on dialysis and, or when he was on, just got on dialysis, I should say and and and watching, watching him through that process was hard. And when I got my Transplant in July my second transplant, I think about a week or two later he got his transplant. So we're at both at UCLA and he and he's doing well. From what I I mean from what I know he's in China or Japan or something with his family right now and I'm sure he would have. He would probably agree that it would be great to just go there without taking medicine and having to worry about that. But he's able to travel, he's able to do things because he has that life-saving transplant. Now again, you don't want to be on dialysis a long time. It's. It's brutal and Dependent, like for me, I I've done both. I've done the, the hemo dialysis when I was a kid and then I did um, what's called peritoneal dialysis, where they you get to do at home there's just they. I think it's just sugar water. They basically pump you up with them and it it takes out all the thing, toxins, and you do that while you're sleeping. So I was lucky enough to do that when I was older. But you don't want to be on. I've only been on dialysis probably a total of six months in my life. So and but again, like these people, like, if that list is 80,000 and 20% of those people are waiting for their first or their second, third or fourth kidney, that's, that's a lot of people. And if you can get that 20% gone because now they're doing the tolerance program, that's amazing. I mean that would be now. Now we're just focusing on the 80,000 and every person you do through that 80,000 in theory and and in hope I guess is Is getting tolerance because we're doing their UCLA and and this isn't just UCLA UCLA, I guarantee you doesn't want to be the only medical group that does this. They, they want everybody, the every Hospital that can do this, do it, because it takes, I mean it, like I said, it takes a lot of people from To to do this. It's not just a oh, it takes nephrology, it takes urology, it takes Radiology, hematology. I mean it takes a massive amount of support from all these different Areas. And if you can get, if you can get the pressure off of the UCLA eventually and get others to do this, and then the pressure of you know, okay, well, we don't have 80,000 people anymore, we have 10,000 people on the waiting list. That's amazing. But again, that's hard because people, you people don't know the facts. You do, you do better without two kidneys. Actually, you actually Confunction a lot better with just one kidney. That's a benefit of being a donor. So, and yeah, you have to there has to be some lifestyle changes and scent probably, but not not big ones, more or less. You're probably not gonna take. You're gonna take Tylenol instead of IV profan, because you have one kidney and one kid Kidneys don't filter IV profan that well. So certainly you know that's a silly one, but there's nothing big. You can just live your life perfectly fine and that's amazing. I mean that there's so many benefits to being a donor that it's silly that more people aren't donors. But I, I I guess I understand that's a that that it's a scary. Well, I don't want to go under and possibly lose my life, but you know, at the end of the day I don't it's I don't know. I've never heard of many stories of people losing their their lives because they do a full-on workup before you even get to that point of Going under to donate a kidney. So they they make sure you're healthy and you could. You could survive everything.

Speaker 1:

Well, it sounds like also with this breakthrough, you know, for people, especially if it's family members. You know, from the, from the information that I saw with dr Veal, that was two brothers and they were perfect match and then to take, you know, his stem cells and be able to put it into the brother that needed the kidney and then have a take. I mean, that's very promising and and I'm sure you know, and which led it up to you know, same thing, even though yours is your father's. It's just the time frame, but I'm, I'm guessing that, you know, as time goes along and more of these breakthroughs come, you know, happen, you know, let's say, you find another match from the person that is not a family member and you know you have to, and that you have that kidney, but then also, now you need those, those stem cells. I can see why the and again, maybe this is these are. These are questions that dr Veal could answer, but I'm assuming the whole point is that, because you are related, that DNA is so close compared to you know, maybe, and someone you know that's halfway around the world donating a kidney. You know so, and again, these are medical questions. I'd have to, you know, you'd have to ask a doctor, but I'm assuming they probably will find that breakthrough in the near future. I mean, stem cells are an Amazing breakthrough in themselves, but finding them to collaborate with an organ transplant Is really going to open up many doors, like you said, whether it's live or heart, kidney, you know, or any other organ that needs to be transplanted. So you know, it's very, it's a very promising, promising thing that are happening in the near future, or maybe, you know, not so distant future, and, and I think whatever Doctors are working on this is. And then, like you said, teaching for other hospitals is going to open up a whole new, whole new avenue for people that are on this waiting list. And you know we keep them all in our you know Positive vibes and thoughts to say. You know we really hope this happens sooner than later.

Speaker 2:

Yeah, and and again, I don't know. I'm sure there's somewhere Medicine so vast. I'm sure there's some doctors that are trying to figure out how do we? Stem cells are dime, it does. I mean. They're important, but you have to have a perfect match or you can't. How do we do this so that we can? And I don't know I that would be a great question for Dr Beal and any doctor that we could get on. But I do know, for what they're doing now is they, like I said they did, civilians. Now they're doing parent to the children and that's what the the theory is. So I think they go about nine, ten years out. And if they can go, dr Beal, when we were on the phone and we were talking, the the the theory is if we can go that far out with the after transplant. So some of the people have already had transplant for, you know, nine or ten years in terms of their kidney. Now we're just doing the stem cell. If we can go that far out, then you know, anything after that we can definitely do so after that. It's almost as if they restart the but and further out. So it'll go after this part of the transplant, this part of the trial will go to a siblings, but it'll be further out. So 18 years, whatever. And I I know, um, I can't remember who I was talking to at UCLA may have been dr Beal, and because I've talked to a handful of people that are part of the tolerance program and there they, they have a lady and her she's I don't know how old she is, but her dad's 95. We donated his kidney of what sounded to be a while back and that kidney's been running strong and that's a main. I mean, your kidneys Can run a long time. They're not, you know. Oh well, your 50, 60, your kidneys can run hundreds of. You know, in theory, they can run a long, long, long long time. It's just, can your body withstand that long, that length of time? So, um, you know, usually, usually, if people's kidneys fail at a certain age, there's other factors, not just, oh, the kidney, but also, you know, if you look at the people when they get to that age, it's they're all sorts of things in their 80s, 90s that take them out besides the kidney, and. But you know, kidneys are a wonderful, amazing thing. But, again, like you said, this is a big, this could be big for liver, because liver you can't have, but you can't have a living donor, same with lungs or heart. And I have, uh, a friend who had a lung transplant. I have a cousin who His name is Blake as well. So it gets really confusing. Um, he had a kidney transplant, and then we have a family friend who, their daughter, who is three, she just um got her a liver transplant and and she got it at UCLA. And if that right now she couldn't I mean, she's too young, they couldn't do a tolerance program and but that's not saying in the future they can't do some sort of tolerance program Um, and that's kind of where I'd like to be in medicine, in some sense of researching how, how can we get this further along to to children? But also, she can't, but they have, like, they have to figure out. You know, this young, this girl, she got a deceased donor liver. There's nothing, I mean, if that, that deceased donor's liver, um, bone marrow, would have been probably a match, or it could have been a match, I should say, and if it was a match, they it would have been great. But again, she was too young. But there's a lot of people that Are of age 17, 16, 17 of age to get a Tolerance, go through the tolerance program, um, but it's also education. I I talked to A lot of people that don't know about it and some are patients at UCLA. Um, like I said I, my friend, he had no clue about it and I was Kind of shocked. But again, then again I was like, well, I didn't know about it and it's been around for a few years. I Was talking to my nephrologist a couple of nephrologists, but my nephrologist down down here, uh, in orange county that I go to, she just monitors my medicine and everything, and I I mentioned it to him and he had no clue about, which was kind of a weird that he didn't know, because that medical group had A handful of patients that had done the tolerance program, so you would have thought they should know. So doctors need to know. I know that UCLA kind of sent out a huge email and message to Hospitals say it taught it kind of, hey, here's this tolerance program. If you have patients that, um, you know could benefit from this and that you think would be a good candidate, like syndomar way. And so I mean UCLA again, they're trying to do everything they can to to get this off the ground. It's hard because it's expensive. It's a very expensive program. They have to get funding. I know that they got funding from different organizations I wish I remembered their names off top of my head, but I mean it's not. And I know right now they're trying to get funding through California grants, federal grants and things of that nature. But it's an expensive. Any time you're doing a breakthrough, it's not gonna be cheap, it's gonna be expensive and it's gonna be time consuming. And I, as you and I both have mentioned Dr Veal, we know, was there on the 26th, but I can only imagine the rest of the doctors that have been part of this tolerance program. Probably they're working there working just as hard because they want this to work. They want the UCLA is not looking just for okay, like we got a kid. They want everybody to live their best life. They want them to live their life to the fullest, and if that what that looks like is, let's get them off. These really really, really bad immune suppressive drugs Like they're not good because in the day, heart problem, like I said, heart problems and cancer and all these other things, just that. I mean, I'm already when I heard, when I kind of put it all together in my head, I'm like, oh man, I've been on these for 30 plus years. This is gonna be aging, it's not gonna be fun. But if I get the, if I can get off of them, I'll be fine with that.

Speaker 1:

Yeah, and that's the whole goal. The whole goal is to get you off those things and have you move on with your life, living like you said in quotation marks a normal life based on without all the medications. We are at a time, blake, I could sit here and talk for hours with you about this and you have been a plethora of information. I really hope that this brings some kind of hope and insight to some other somebody that might be going through this. Is there anything else you'd like to share before we wrap this up?

Speaker 2:

You know I would share a couple of things and I'll keep it brief. To families that their son or daughter have been born with kidney problems or liver, whatever the problem may be, and they know in the future they're gonna have to have a transplant, there's hope and whether that's the tolerance program later on in that child's life or getting a transplant, it's tough. I can't speak as a parent from that end. I've had, like we be foster kids, but my wife and I had a daughter who passed away and that's tough. I understand the medical side is very tough and it's scary because you never know. But at the end of the day you don't know. Even if they're healthy, if they're gonna, everything's gonna always work well Well, so get into a group, find people that you can talk with. One of the greatest pieces of advice is Dr Opus gave my parents and I would echo that to any parent what it was. When I was my parents. They took me to USC and Dr Opus, he explained everything to my parents, what was going on, what they needed to know, and he looked at them and he said okay, now you know what's wrong with Blake. I want you to forget it. I want you to parent him. I want you to do what you need to do as parents. Let me take care of the medical I'm the best and he is at what I do in the nation, so let me do the kidney stuff, you do the parenting. And also to take that further, he said to stay dating and my parents have been married for 40, I think, almost 47 years I wanna say 46, 47 years now and they remembered okay, we need to take walks together. The kids are important and that's obvious. But kids need a stable home and the only way to do that is remember you married each other because you loved each other. You have fun with each other. The kid's just a byproduct of that fun, no pun intended. So the other part is, if you're older, you're in 20s, you're in college and you're man, this is tough, like I wanna go through school or keep my job because I keep getting sick. People are understanding. If you're open and honest and if you're open with your employer, you're open with your teacher, professors, whatever it may be, they're gonna be fine. But also be your advocate. You need to be your own advocate. You need to do the research. You need to call UCLA and talk to them about the tolerance program and get on the list, get your name out there, get them to know it, remember your name. Part of the reason I said hmm, I should do these podcasts and start wasn't just because I want. They're selfish motives. I want UCLA to remember my name and they'll. Oh, when it comes time they'll say let's look at Blake, because they've remembered, they know my story, they know every. So be your advocate, be involved with the kidney and help others that are going through the process, because it is lonely and it does get a little bit annoying when you hear people that have never been through the process telling you how to do it and you're like, well, okay, you have a kidney problem, see how you like being poked at and jabbed at and all sorts of things. So be an advocate and be patient with people, because it's a learning curve, especially if you have siblings. I know my siblings had to learn a lot through me growing up with kidney problems and I probably can't probably can't thank them enough for what they put up with, because I was definitely a little rascal and definitely got a little more attention at times than I should have.

Speaker 1:

So, yeah, Well, thank you so much, Blake, for being with us and thank you for sharing your story, and I know you're gonna send me the links for you know to embed into this podcast, and I really truly believe that your words and your insight, and I know your message, is gonna reach somebody who really needs this, and that's why it's been my pleasure having you on as my guest today, and I think it takes a lot of courage to go out there and share a personal story like this, but it also takes a lot to be able to let someone know that they're not alone, and I think you portrayed that very well to someone who may be going through this or has a child or someone going through this. So thank you again for being here today.

Speaker 2:

No, thank you so much for having me on and I hope we can do more in the future.

Speaker 1:

Absolutely. I would love to have you back and Phyllis, and on what's happening with you, especially if things start to change and you come in as a candidate for this and we wanna hear how your life is going. And then it's a welcome you know invitation for any of the doctors that you've worked if they wanna come on and share their story and their insight. They have got an open invitation on my podcast at any time, any day, and I wanna thank UCLA for doing the great work that they're doing and making these changes and these groundbreaking events. And then also, even though I don't know him personally, but saw the information that and what he's doing, dr Veal sounds like an amazing, amazing person and I wish him nothing but an abundance of success in all of this so he can make these positive changes in these people's lives, especially yours, blake, especially yours.

Speaker 2:

Thank you. Yeah, I know he has amazing.

Speaker 1:

All right, you guys. Thank you again for being with us. I look forward to seeing you soon. I highly recommend that if you know anybody, or if you know and send someone who needs this, please share this podcast. And if you don't even wanna share the podcast, just share the links. Share the links to UCLA or the other links that Blake is gonna send me, just because you just never know, and if you feel the compassion and it's something maybe that you would like to do, maybe you even wanna reach out to UCLA because maybe you would wanna be a donor. Maybe that is something that just falls into your lifestyle or who you are and that can make a difference in someone's life. You guys are awesome. I always love you as my circle of friends. You guys know that and I will look forward to seeing you soon. Remember, the most courageous thing you can do is be yourself. I love you and I will see you next week. Bye.

Blake's Kidney Transplant Journey
Prednisone Challenges and Life-Changing Interaction
New Advances in Kidney Transplant Tolerance
Living With Chronic Illness and Support
Promising Kidney Transplant Breakthroughs
Organ Donation and Stem Cell Benefits
Parenting and Advocacy for Kidney Health