Coach Mikki and Friends

Navigating Love, Health, and Dual Kidney Transplants - Blake Fessenden - S4E9

March 05, 2024 Coach Mikki Season 4 Episode 10
Coach Mikki and Friends
Navigating Love, Health, and Dual Kidney Transplants - Blake Fessenden - S4E9
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When love and medicine intertwine, the result is nothing short of a miraculous tapestry woven by the hands of a devoted family. Today, we welcome back Blake, alongside his heroic parents Scott and Karen, and his supportive wife Terese, as we traverse their incredible journey through not one but two kidney transplants. As a child, Blake's health challenges were met with an immeasurable gift from his mother—a gift that years later his father would match. Their tale is a profound chronicle of sacrifice, hope, and the advancements in medical technology that have turned the tide in organ transplantation.

The heartbeat of our discussion pulsates with the strength of familial bonds. Karen and her husband reveal the contrasting experiences of their surgeries—one traditional, one laparoscopic—and the evolution of medical procedures that have shaped their family's story.  We also step into the shoes of Terese, who shares the complexities of building a life with Blake.

As we turn the final pages of this chapter, the conversation shines a light on the relentless determination of a mother, the compassion of a spouse, and the survivor's spirit of a son. Karen's reflections on parenting through transplants, Therese's insights on embracing the unknown, and Blake's optimism for future medical breakthroughs like the UCLA Kidney Tolerance Program, all converge to offer a beacon of hope. This is more than just a podcast episode; it's a celebration of the human spirit, the unwavering power of love, and the remarkable courage that comes with facing life's most daunting challenges head-on. Join us as we bear witness to a family's testament to life, love, and the pursuit of health against all odds.

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Speaker 1:

Hey, I'm Coach Mickey and I'm so glad that you've joined us and if this is your first time joining us, come on in and make yourself comfortable.

Speaker 1:

And for those of you that join us on a regular basis, I am so glad that you do. And I really do appreciate the fact that many of you reach out to all my guests and to me personally with your comments, your questions and your suggestions with some of the guests that we've had on, and I really, really am excited to have Blake back, because many of you have reached out to me from when we did the podcast a while ago with Blake in regards to kidney transplants and the upcoming things that are happening, and I'm really touched and honored that Blake's family was willing to come on and be on this podcast to not only share with me but to also share with many of you what it's like as a family, not only as the person that is going through what Blake has to go through, but how his family's had to go through it and how it affects and this is gonna be really inspiring, so welcome. Thank you so much for everybody to be here. Thank you so much.

Speaker 2:

Yeah, no, thank you for having us again.

Speaker 1:

Yeah. So, blake, I'm gonna start with you. I know I'm just gonna have you recap real quick on what had transpired, just to kind of refresh everybody. Just a quick 30 second thing. And then I'm gonna jump in because I really feel strongly about knowing how this has worked with you, between your parents, and then also having the lovely wife that you have. I mean, this is an everyday thing that you have to address.

Speaker 2:

Yeah, no, I was born with bad kidneys and at age five my mom donated her kidney to me and it got me throughout a less since, which, from everything I understand, that was pretty much the goal. It would have been nicer to go longer, but it got me throughout a less since. And then I received my second kidney transplant at UCLA, and that was I was 20, my dad donated his kidney to me at the time and my kidney's been going strong pretty much strong, I should say ever since. There's been hiccups every once in a while and different things, and it didn't start out smooth, but yeah, it's been going well and we just started doing the podcast so we can get the UCLA's Kidney Tolerance Program out there so that people can hear about that.

Speaker 1:

Yeah, and that's pretty exciting and hopefully we can keep elaborating on that and have you keep coming back to fill us in on what's transpiring. I know that's something that's gotten quite a few questions about. So I'm gonna start with you, scott, which is Blake's dad. But first of all, having a child that needs a kidney. I mean, what was that like with this child as a parent when you discovered this?

Speaker 3:

Gosh, that's a long answer, but I think part of it and I'm looking to Karen for nods and input also. It was kind of a process because when Blake's a twin and so when they were born he was held back in the hospital in intensive care they actually discovered he had a pleurisy on his lung and so they were concerned about that. They brought him. You know he stayed back. After running some tests they found there were problems with the kidneys. We didn't know exactly what it was and I think when he was a couple of weeks old I'm looking to Karen for a nod we were referred to and went to USC and that's the first time we had met Dr Opass and through testing and that's basically when we found out that the kidneys were insufficient, certainly for his lifetime.

Speaker 3:

I wanna say he had less than 15% kidney function at that point. So I think that some of it was probably at that time it kind of sunk in a little bit. But there's just so much that goes on. You know, having being new parents of twins, you know having three others at home and just the blur of doctors, it took a little bit to sink in that you know Blake had kidney problems. Gosh, I'm just trying to. You know it was hard, but I'm not sure. Sometimes it kind of felt like you didn't have enough time to slow down to really at least early on, to really even think about it. That much you just you had so much to do, so many appointments.

Speaker 4:

That's so fun.

Speaker 3:

Yeah, yeah, it was. It just seemed like there was, early on, different than you know. Four years, four and a half years later, you know, when Blake had the first transplant, you were just kind of running on adrenaline and getting things done. Yeah.

Speaker 1:

Karen, if you wouldn't mind me asking. I mean if you wouldn't mind. I mean, first of all, as a parent. You know I've got children on my own. But the thought of I mean you would do anything for your children, but for you as parents, you really had to go to another whole extreme because both of you donated kidneys, you know, to your child. So how you know, how did that happen? Because you have other children that you were working with. First of all, I want to say how remarkable you all are as a family. I mean this is this is something that is very intense and serious. But also from the things I'm reading here that Blake sent me, I can't wait to get into some of the fun stuff. But but how was that for you, karen? I mean, because that's that's a lot to you know to do that. What were your thoughts on that? How were your feelings?

Speaker 4:

I was kind of overwhelmed. I had his twin sister, kara and him. In the first 10 days he was in he was in the hospital.

Speaker 2:

You hit some. Well, she's crying because I'm her favorite child. So it's not the hospital part, it's the favorite part.

Speaker 4:

Well, it's that I had to leave him at the hospital because I had his sister and Jake Kara, plus his siblings, his other siblings we had three others, so it was just a lot to process.

Speaker 3:

He was going down, let's put it, in the first two, three weeks and I had a lot of sleep trying to. I had a lot of sleep trying to take care of the twins, which was new for us, and trying to, she was just physically kind of going down. So the first time, I guess on not really a funny sense, but we had to move Noel to a formula and Karen had nursed the other kids and so now, for the first time, I had the night feeding duty with Noel. So because it was just too much for Karen to try to manage all that. So, yeah, so I, she took care of everything and I just took care of a little piece of Noel.

Speaker 4:

Yeah, I was very tired and I knew it when I dressed Blake in a dress. So I said I need some help here. I'm very tired.

Speaker 1:

Well, I don't know, karen. I think that's pretty good track record considering what you were going through. So you know what that was okay.

Speaker 4:

Well, the fact that I figured it out, that worked out. I didn't take him out of the house that way.

Speaker 1:

So I know this is such a difficult thing. I can't even imagine, like I said, going through this and Blake has been extraordinary, coming in and sharing his journey and what's gone on, and that's why I wanted to talk to you as parents. But I'm looking at some of these things, the stories that Blake had sent me, and one of them he has on here was tell me about McDonald's. I guess apparently something had happened with this, with Dialysis, so I want to hear this story.

Speaker 3:

I think that's probably his, I'm assuming that would be Dialysis would be his grandfather. We, I mean it was challenging. But then Blake, you know, rolled forward quite a bit of time and before the transplant, blake then went on to hemodialysis at Children's, which required it was, you know, three-ish times, you know, two and a half three-ish times a week, every couple days. So he had to drive, he had to drive into. It was just a, you know, by the time everything was done it was probably a seven-hour-ish day because you'd have to drive down there. By the time you got there, by the time they got Blake hooked up, he'd be on Dialysis for a couple hours. But it took, you know, 40 minutes to an hour to get him hooked up, 40 minutes to an hour to take, you know, to get him off the equipment.

Speaker 3:

And so we were blessed, very blessed, in that, you know, we did have family that was able to help, and so Karen would take him. You know, many times I would take him, but a number of times my dad, blake's grandfather, who they had a great relationship, he would take Blake and when we just, you know, karen needed whatever it was. Maybe there was something at school that she needed to be there for the other kids and I couldn't get. You know, it was a tough time for me to get away at work, and so my dad would take him. Well, my dad would take him down to McDonald's and they'd eat french fries, which wasn't exactly.

Speaker 4:

It was a Not on the no no for a.

Speaker 3:

Dialysis? Yeah, not a Dialysis thing.

Speaker 2:

But my dad, yeah you can't have that too much potassium.

Speaker 3:

Yeah, so my dad would take him.

Speaker 1:

Yeah, I'm sure there's probably a lot of dietary restrictions, especially for what you're going through, but I have to ask you if you wouldn't mind. So I mean experiencing and being a kidney donor. I mean, what was the influence and the perspective like on your life and family, and then you know, and your health, because these are all all things that have to be taken into consideration. I mean, usually you go through and you know, you have these structured things that you do, but now you feel this other element of having to be not only with a child that you have to keep healthy, based on his kidney function, but also because both of you were kidney donors. So how did that affect your perspective on your family?

Speaker 3:

You know, I think. And then Karen and I you know we're talking about this for us kind of the overriding top. You know how did we get through everything all the time? It was just our faith, our faith in the Lord and that he was going to take care of us. You know, a verse that came up for us was in Philippians and be anxious for nothing and everything, prayer and supplication with thanksgiving, take your request to the Lord and that you know his peace, that was kind of the overriding principle. And then you just kind of worked.

Speaker 3:

Everything else worked its way out from that. Whatever those difficulties were managing dialysis for the Blake, managing when you donate a kidney there is a pretty extensive testing that you have to go through for them to say, yes, you can donate which. You were first Basically testing everything and I was actually when Blake was that first transplant, I actually went through all of the testing completely and that's a very long story. But through some things that came up they found that Karen I mean literally like three months of testing that Karen may have been a little better donor.

Speaker 4:

That was a week before surgery.

Speaker 3:

Yeah.

Speaker 1:

Wow, that's not much time to prepare.

Speaker 3:

Yeah, that's a whole different issue and story. And so then Karen went through the testing, but I don't think for either of us that wasn't an issue you know Blake needed a kidney. It was more an issue of going through the testing and are we, you know, was our kidney going to be a good, you know match for Blake, and it was more looking at that. I don't know that either one of us really spent a lot of time on that. It's what needed to be done. And even prior to that, while we, while I was going through the testing, blake was put on a transplant list and we actually were called one time for a, you know, with a cadaver donor and it didn't work out. But there's a long process, you know, leading up to that. And then, you know, donating the kidney. You know, simple, they had told us that you, as long as you're healthy, as long as which is why they do all of that testing that you can, you know, live perfectly fine with one kidney. You know there was very few things that we had to modify in our lifestyle to donate that kidney. Now, in fairness, I guess I can give a quick snapshot of two kidney transplants. Or, you know, karen did the first one when Blake was five, which we were just so blessed to have the medical technology there.

Speaker 3:

But Karen had the I guess you would say early, more traditional surgery where she was, you know, incision from the outside. She has, I think, like a 12-inch incision and was in the hospital for a couple weeks and you can imagine, opening yourself up with a 12 to 14-inch incision Takes a pretty significant recovery. Then you roll, for which both Blake and Karen harassed me about now you roll forward 15 years Blake's now 20, and I'm up to bat per se to donate the kidney. My surgery technology had come along.

Speaker 3:

My surgery was a laparoscopic surgery, so the entire removal of the kidney, or at least detaching it per se, and, you know, redoing all the vascular structure. All that was all done laparoscopically and they just, I just have a little like a four-inch incision that they obviously have to get the kidney out, and so that's all I had. Karen was in the hospital, I think, for close to two weeks, something like that. I went in on Blake, I think, a Thursday. The surgery started like six in the morning. I was released at 12 o'clock the following day. So she has a 12 inch scar. They just both harass me and say I've got a wimpy scar.

Speaker 1:

Karen's got a warrior scar.

Speaker 3:

I have a wimpy scar.

Speaker 1:

Right.

Speaker 3:

So it's a long response to a simple question.

Speaker 1:

You guys are both very amazing and I cannot even imagine how it must have felt, especially as a husband and a father, watching your wife and your son both go into surgery and then to turn it around and do it the other way. You know, karen, for you to watch your husband and your son go into surgery, I mean, that's that in itself. But you kind of covered that. You said you're the hope and your faith, and just having that just, I think, sometimes is what we need to get us through the most challenging times, you know, when we really just don't know what we're doing, what's going to happen.

Speaker 3:

Yeah, you don't want to get me crying on that one.

Speaker 1:

And.

Speaker 3:

I would say, you know, yeah, that was our overriding for ourselves and our family, no question about that. Just not to say that there aren't still those difficult things and challenges and anxiety and all that. Blake, as you know, as you know a little bit about Blake, he's stubborn and that's a good thing. He's very determined and you know you could use whatever he comes by. That you know definitely from his mom and dad.

Speaker 3:

And letting I distinctly remember, you know, dreading that moment, walking Karen down the hallway as they went to the operating doors and letting go of her. And it was one of those times where really the Lord kind of speaks to you. And I'm not saying there was some burning bush in the hallway, but I was by myself at that point, knowing that I've got to get over to my son because Blake's surgery trailed Karen's by about 40 minutes to an hour, but it was one of those. Are you going to let go and trust me and to take care of them? I provided amazing doctors which he had. We were so blessed to have the surgical team and Dr Opas through the whole point of that. And then just that piece of being able to go and be with Blake as he went into the operating room. But yeah, that's one of those tough things to let go.

Speaker 1:

That's kind of an understatement, but oh, I bet, I mean I bet just anything that has to do with your child, you know, it just kind of hits the heart string. So what you went through is a whirlwind of emotions, especially with both of them, you know, going in at the same time. I want to skip ahead a little bit because we're so lucky to have on Therese Blake's wife, and this is something I got a lot of questions, you know, after Blake did the podcast with me and I can't tell you how many of my we call them our circle of friends. You know our listeners, because I've got listeners all over the world and so many people have followed your story, Blake and I was, like I said, I'm so appreciative that everybody was able to come on today to kind of give their insight. But, Therese, I want to skip ahead a little bit to you when did you meet Blake and then how did all this transpire? When you found out about, you know his situation?

Speaker 5:

Yeah, so we met, long story short, we met online. And I think I'm just trying to think back a little bit. You know, I had, like I had wanted to be in a serious relationship at the time. So I had sort of asked my best friend at the time hey, like you know, how do I ask this guy? You know, if he's, you know, we go on a date and if it leads to marriage, that it's something serious, if it doesn't, fine. And so I sort of asked my friend like what do you suggest? I say, because I don't want to just keep texting this guy who I'm never going to meet or it's just, you know, nothing comes of it.

Speaker 5:

So my friend had suggested well, just send him a text message and tell him, do and ask him, say, like you know, I don't really date around and if you're interested, I would like this to be serious and potentially in marriage. So I wrote him and I said exactly that and he wrote back and he said I'm really glad you said that, because I'm interested in marriage too. And so then that was before we had even met, and so that's sort of how it all began. And then he I think you know he had shared with me over just text message about his kidney and then I don't remember the exact conversation but I just was sort of I you know, I didn't, I didn't mind much at the time, it just was what it was. But I think once we had gotten married because we didn't date long once we had been married I think it was more difficult because I think it was probably like within within six months after our big, you know, our wedding day, or yeah, we had. He had gotten, he had been requested to do chemotherapy again.

Speaker 1:

Yeah, there was three months.

Speaker 5:

Just like a round of Rituxan for his chemotherapy, which sort of helps when his kidney disease flares up. That sort of keeps it at bay, the chemotherapy. So it's not that it's cancerous, they just use that as an alternative method. So so he had done that and that was really scary for me because obviously the word chemotherapy and everyone you know has such a reaction to it. And then one time I had gone into work, still I remember, and I was just so tired and stressed, and then the, and then I was in the other time Because the family had asked me. Oh, you know, I told him, told him I think I need to leave early because I have to pick my husband up from Kaiser because he's doing this, you know, all day infusion chemotherapy. And they were like, oh my gosh, why didn't you share that with us? You should have taken the day off. And you know, of course we were newly wed so we needed the money.

Speaker 5:

So but you know, I've, the longer we've been married, I've learned and we've had other, you know, situations Health related in our marriage. I think that it sort of helped me learn and just how to navigate it, because I don't think I had a healthy understanding either of just you know health complications and how to manage them. You know I've growing up. I was generally healthy still am and no one in my family had major health complications. Everyone lived through their nineties so it was very, very all new to me. Anything health related meant that it was bad in my head. So yeah, I've learned a lot, but it's been a lot of processing and still, you know, has it's difficult times. But you know you just have to move forward with the information you have and sort of just learn what you can do to fix the problem at hand.

Speaker 1:

Now you have. You have children and one of the questions that has been brought up in Blake, I'm glad you wrote this down to address this how do your children handle some of these health hurdles that you have to go through? You know, because this is like is this an everyday thing or is this something that just happens? You know, you know it's going to transpire like every two or three months, and any other Teresa Blake can answer that.

Speaker 2:

Yeah, I mean our kids. I mean they had gone through their fair share. We've adopted them prior to us then coming into our home. So I'm pretty sure my medical stuff doesn't even it pales in comparison to what they have gone through. But kind of how we? I don't even know. We never had a conversation. It was just. This is how things are.

Speaker 2:

My daughter, ashley, loves to watch me do my medication, in terms of I have all my medication out and I put them in their boxes and that's. It takes about an hour. That's how much medication there is and she loves to watch it and she doesn't touch the medicine, she just likes to see because she's very interested in wow, why does that? And we've talked about it as they got older. I can't speak to what, how they're like when I'm doing chemotherapy, but it's not even called chemo anymore. It was originally. Now it's just an infusion, but the now we know, oh, every 13 to 15 months I will be getting this treatment done. And the kids, I think they're kind of just used to it. They're oh, okay, dad's going to go do that. And I think in their brain is well, dad can take care of anything. So we don't need to worry, but I know I have had other medical things that have happened and I had to, you know, stay over the night in the hospital and our daughter, Ashley was didn't handle it very well.

Speaker 5:

She was very, very worried, very concerned, very empathetic.

Speaker 2:

She was very concerned. But just the regular everyday kidney stuff and the, the, the Rataxan, they seem to be oh okay, whatever, but if something big happens it's, that's out of the ordinary. That's when they kind of are you know, oh, what's going on? The, why is dad, what's going on with that? And get very because both of the kids are very empathetic and they, they get worried and they, they get worried, especially when you know times are off in terms of wait, dad's not home at night. What's going on? Or you know, I just I'm in school and they're. It's thrown them off considerably that I'm not home in the in the morning and the afternoon anymore.

Speaker 1:

So your whole life has probably changed. I mean, then you throw children into the mix, you know, and it's their everyday life, so they see it and they understand it and at least they're willing to be able to come to you and ask the questions and see what's going on and the fact that you're in tune to what they're feeling and what they're seeing. You know that's gonna help them through the process. I've talked to you multiple times, blake, and we've had opportunities, not only on there but off there. We've conversed and you know, and now you know you're telling me, you've told me and now your dad's saying you know that you're stubborn, but I gotta ask, there's gotta be some times, because you said, some of these events that you've been through and some of these situations, one of the things I've discovered is at least you've kind of keep your sense of humor through this. So do you have a anybody have a story that they wanna share that you've had to use as your safety net to get through this?

Speaker 2:

I mean I like to play pranks on my nurses at any given time, which is kind of I'm, you know, in school to be a nurse, so I'm sure it's gonna back at me at some point, but I have no problem. I've done Plasma Phoresis and I've played pranks on my nurses and I've had nurses like actually, okay, I'm not gonna be, they don't like the pranks and I, you know, I find out later and I, oh, I took it too far. But for the most part I think that most of my stubbornness and my humor just comes from you can't get like, you can't get through this medical, all the medical stuff, without having you know any anything funny. Like you have to have a sense of humor. My doctor when I was a kid, he thought they have to fill your kidneys and liver and everything. Well, he did it by tickling. Well, I don't like tickling and I just grabbed his tie and choked him and that was my, and so he learned quickly to throw his tie or not have a tie on with me. Dr Opus learned that.

Speaker 2:

And Dr Danovich, great, great, he's amazing. He sees me as probably more of a son than anything at times. I mean, I've been with him for 21 years and he one time came in and he kind of quickly tapped me on the face and he oh, that was a patient. And we both laughed. I'm the tie, I didn't, he doesn't it didn't. We both laughed, it was not, it was. And he was like oh my goodness, I can't believe I did that. And I was like it's fine, like we have a lot of funny moments like that. But I know my parents, they brought one up and I don't know, I don't remember it, so I can't really say this tell the story. So I'll let them tell it if they want. Oh, there's, there's bunches of them.

Speaker 3:

I think one of the yeah, one of the one of the things when I say stubborn, tough, whatever words you want to use, god created him that way is what's got him through this, because so many of the many of the children that we saw over the years became very oh, they kind of meld into the background. You could see them kind of feeling defeated, where Blake was just like a little firecracker all the time. But and that was you know, I'll tell that quick story on one thing in the hospital. But Blake came home from the hospital after his first transplant and I think was it that day or the next day, something like that went out and learned. The kids were out in front and he's rollerblading, which most people would have had a heart attack.

Speaker 1:

You never had done that before.

Speaker 3:

But you know that was just Blake, I'm going to go after it. But he was in the hospital with that first transplant and being at children's hospital. It's a teaching hospital, so you have residents and by this point, at the young age of five which was a good thing Blake had been poked, prodded, stuck all the time and it become, even at five years old, starting to own or understand some of his medical care. So you know, he'd tell, you know he'd had to give blood all the time, so he would tell his nurses you know, use such and such size you know, butterfly needle on.

Speaker 3:

You know, give him on the count of three or something. Well, when he was in for his transplant, still in the hospital, post-surgery, there was a resident that came in and Blake asked her, the doctor, to not touch the incision, that area, because they're wanting to look around and see if they're swelling. But he said, you know, basically it said you need to let me know. Well, she ignored Blake and we almost had two problems because she went ahead and touched it, hurt, and Blake also has reflexes that are kind of like. You know, his reflexes are faster than rattlesnakes. Well, he popped her one.

Speaker 3:

So now you have a doctor that's just been punched by a five-year-old. But he had told her, he warned her very clearly. Well, that was the one thing. But she decided it would be a good idea to kind of pop him back. That was not a good idea with mama close by. You know now you look at it afterwards and everyone laughed at it. But that was just Blake, I'm gonna tell you, you're gonna listen to me. And it was reasonable for the things that he asked and when you didn't, he'd grab your tie, or you know, you heard him. I sound very violent.

Speaker 2:

But I'm not violent anymore. I would never harm a doctor. Oh he was.

Speaker 3:

I just want to make that clear.

Speaker 2:

At a five-year-old. I just very different.

Speaker 1:

Well, yeah, I mean, I can understand that, I can understand that.

Speaker 3:

Needless to say, that resident never called on him again. I guess she did, but Karen said she brought him a piece of offering, a piece of pizza. He probably steered the clear of mom.

Speaker 1:

Well, good for you. I'm proud of you, karen, for standing up. I mean, I would do the same thing if it was my kid. I can't blame you on that, you don't, you, don't, you don't you hurt the cob. Mama bear comes out, that's just the way it is.

Speaker 4:

Yeah, that makes me proud, that makes you a good mom. That's my job.

Speaker 1:

So we got to know. We got about three minutes to wrap up, or so I'll give you a little guys, a little bit more, but I'd like to hear from each and every one of you Is there something you would like to to share or say you know, either as a parent or as a wife, or what you're going through, that for someone who may be going through this, and just to give them some kind of insight, I mean. So I'm going to start with you, karen. Is there something you'd like to say as a mom?

Speaker 3:

Oh, gosh, oh good, or crying again, yeah.

Speaker 4:

Oh, just sweet, I just you know, you just I just kind of went through it with, just you know, as I didn't, I didn't really I didn't think about it, I just had to, had to do it, and so you know, but I did. I was very appreciative of, when we met Therese, that she was willing to knowing that someday they need another transplant and did have health problems, that she was okay with that. And so you know, when it's your kids, you want all the best for them, and so she was an answer to prayer.

Speaker 4:

She definitely was.

Speaker 3:

You know that she just For a lot of years.

Speaker 4:

I mean we talked to her right at friend about you know he had kidney transplant. She goes well, so we could get married and three weeks later he could have, you know, kidney. We could find out he needed kidney transplant. That just happened.

Speaker 5:

So yeah, I remember Blake and I had that conversation, sort of he was like well, I mean I can get in a car accident tomorrow, I can. Anything can happen, you know.

Speaker 4:

Yeah, exactly so, and you know it just you know. There's just all sorts of emotions that you go through as a parent from birth to you know 36.

Speaker 3:

You know something that I've wanted to share and I think, karen, I talked about this quickly because you said you know what some advice you'd give and really it was advice that was given to us. We were phenomenally blessed with Blake's doctors, and first being Dr O'Paths. Sorry, but he gave us some advice early on and we trusted him and he earned that trust because it is your kid, he earned that A caring, extremely capable doctor, but he cared about us, he cared about Blake and that built our trust but he had shared, I'd say anyone going through that and it was a confidence but not an arrogance by any stretch was really let me take care of the physical part of Blake, all the things that have to be done, you know, leading up to a transplant, you know transplant, all those things. I need you to take care of Blake, which means I need you and your wife together, because he sees lots of families that this breaks them up. I need Blake to lead a normal as possible life.

Speaker 3:

I can't fix those things, those emotional, mental things, and I think we really we trusted him, so he did that and we did the other. And you know, and I would say you know, dr Danovich did a lot of really the same things. So that was when Blake was older and so that relationship built. But I think that that was important. We did everything we could to make sure that Blake had as normal a childhood as possible. Obviously there were some you know most children who went for dialysis or transplants, but Blake waterski, blake backpacks, blake was not allowed to play football, although he probably would have wanted to.

Speaker 2:

But I mean, that was a thing he tried hard.

Speaker 3:

Yeah, he did wrestle and he was a heck of a wrestler. So anyway, we probably put the right limit. Sorry for that.

Speaker 1:

No, no, no, you're fine. Actually, I want to go. I want to actually have a give you quality time, because I think what you have to offer is very valuable and, like I said, I've had so many people reach out to me to with a lot of these questions and that you've been so kind to address. You know, as a family, as parents, but also as a family, teres, what about you? I mean, what's something I mean as a wife, as a mom? I mean, how is that worked? I'm going to finish up with you, blake, because I know we got some kind of inspiring things that are coming your way and I'd like you to be able to finish off with that. But first, teres, how, what are your thoughts? I mean, what if you got to say, for insight for anybody that's going through this Be nice, I know where you are right now.

Speaker 3:

Wait what Be polite?

Speaker 5:

Oh, I think, as I'm just thinking, I mean I feel like it sounds cliche, but I feel like knowledge is power. I think a lot of times you want to close your eyes and, just, you know, wish that the problem wasn't there. But I think if you really lean into it and just learn, you know different ways of doing things or how to adjust your home life, just giving yourself grace on the day to day, that every day might look different, and we probably don't have much of a structured household as other families do, just because we don't know Like sometimes Blake has a rough morning, a lot, you know, and he's not feeling well, so he gets out of bed later, or you know just so many different things. So I think we've just learned to sort of have realistic expectations.

Speaker 1:

I'm saying and so, blake, I'm going to wrap it up with you. I know you and I have talked about the Tolerance Program. We know that is like cutting edge. It's got to be on its way. I know you're just waiting for that. If you can share something about that, you can share about insight, whatever you feel is going to be the most beneficial and that you can offer, I'm going to just let you have the last five minutes to talk about whatever you want to talk about.

Speaker 2:

Okay, yeah, I would be remiss if I didn't tell one quick story about my you know, going in to after surgery and stuff my siblings. They did a great job at coming in and seeing me and supporting me, except one of my siblings did not support me so well because she ran out probably crying because she doesn't like ET and they had a little red dot on my finger that lit up and me, being the youngest brother, I still to this day will harass my sister Donnell, and the only reason I'm telling this story is because if she listens to this podcast, she knows now everybody knows she is not a fan of ET, but the Tolerance Program it is. It really is. I've had a lot of conversations with UCLA over the last. I mean again, I got a call randomly on December 26 from Dr Beal and it's snowed bald fairly quickly into a podcast with just myself and you, and then I thought okay, and then we've talked about other podcasts and now we're doing this one and we have you know, without giving too much away because we can't yet I know that you and I had discussed and we are, we're working on something big, a really really, really big event that with obviously yourself, mickey and UCLA and other. There's going to be a lot. We have a great ideas, we have a great marketing team that Tres and I are working with, and UCLA is working with us on a lot of things. But I think that just the fact that you know there is a program that's out there that needs more attention, that's exciting to be a part of this, especially.

Speaker 2:

But as a someone that I never, I always say I'll take the medicine, fine. The biggest problem with the medication besides the side effects and we just Tres and I have met someone recently that her father-in-law passed away and he got a kidney transplant and 10 years later he passed away with cancer that was caused by the immune suppressant drugs and I mean that's something you don't think about. It's also one of those. Well, I got it. I have to take them. Either I do that or I'm on dialysis until I can't do that anymore. So I always was like, oh, I have to take them. But there's also the other side of the coin is, sometimes you forget to take your medicine, so you always have to. I always have a box in the car, whether it's my truck or my car, and I have one and built all my binders so if I go to school and I forget I have it, it's planning things out and that's just part of getting used to being a kidney transplant patient or any transplant patient that's on a drug regimen.

Speaker 2:

But I am excited. I think the tolerance program is going to bring it can and I truly believe it will bring a lot of amazing things, not just in the kidney world. I think once the program is finally approved and insurance companies, and I think it can become the gold standard. Dr Veal and I have talked about that. This is what UCLA, this is what Dr Veal's desire is to make this the gold standard of. You get your kidney, you get tolerance and you won't need to get on the immune system. You'll need to get your blood pressure and drugs because you'll have the tolerance.

Speaker 2:

That has been again the gentleman who did the first kidney transplant with the identical twins. He said the next big frontier is tolerance at his Nobel Prize speech and I think that's what we're seeing is kind of the next big frontier being tackled in terms of tolerance. I truly do believe it will change medicine and I know there's also other things that are being researched for kidneys and but I think tolerance is the most practical. I also think it's the most that can become readily available with little controversy, where the other ones are a little more controversial. But yeah, I truly am excited to see what we have down the road as we continue to do more podcasts and we have this event that will be kind of slowly talking about every once in a while, getting people's interest, and I truly believe that, if we can, that UCLA is on to something and what we're doing here can really help out, and it really just comes down to getting the information out, getting people that are family members or have had the kidney transplant to call UCLA and it's on their website.

Speaker 2:

You call and you just you ask about tolerance and you see if you're a candidate. I mean, that's the biggest thing anyone can do right now is just if you need, you're interested in the tolerance program or whether it's I want to help, I want to donate money, whatever it may be. Call UCLA's tolerance program. It's on UCLA's website. Just put in Kidney Tolerance Program and it'll pop right up and you call and they'll kind of guide you from there and Mags, who is probably the one you'll get a hold of, she's, I'm pretty sure, secretly running the whole thing, but she's amazing. Like I said last time, she's Dr Reel's right hand and she truly is one of the best people I've met at UCLA in a long time.

Speaker 1:

Well, I want to thank you so much.

Speaker 1:

I want to thank everybody for being here and sharing your stories and your insight and I know this is not an everyday conversation that most people have, but I do know there's other people out there that are going through this same situation and to hear it from a full family unit, including your wife, terese to see that there is hope and you can go on and live a normal life and do these incredible things and have a family, I think this is really important and probably very inspiring to quite a few of the people that have reached out to me, so I want to thank you all for that.

Speaker 1:

I'm going to embed the link to UCLA down in the podcast so everybody can reach out to that, and I know you and I will be talking more, blake, as we go on this journey, and I really, really hope and I pray every day that you are going to see this light at the end of the tunnel with this tolerance program within your lifetime, to be able to have you be part of this, because I know what you've been through and how important this is, not only for you but for other people, and Karen and Scott. I want to thank you so much. I mean you're extraordinary parents, extraordinary. And yeah, I mean, karen, wear that tattoo, wear the scar. I was going to say it's like a tattoo, it's like a battle it is what do you think about it?

Speaker 1:

I mean it is, it's like a Viking scar, but it is. I mean it says something about you and makes you one of a kind, and that scar, I guess, is like that. It's the same thing. And in both of you and Scott, thank you so much I mean coming as a perspective, as a dad. I mean that really is. I mean as a dad and a husband. So, thank you again for being on and Trice, thank you. You are an extraordinary person. I mean we've had an opportunity to connect in multiple ways, but hearing your side of the story, too, is definitely lighting and inspiring. You guys are incredible. Thank you so much. I wish all of you the best you know, with an abundance of health, whatever you do. So thank you so much, thank you so much.

Speaker 2:

Thank you so much.

Speaker 1:

All right, you guys.

Speaker 4:

Well, thank you, oh, you're welcome.

Speaker 3:

Thank you for taking your time.

Speaker 1:

You're welcome, are you guys? Thank you so much for being with us. I will look forward to seeing you again. Please, please, please, reach out. If you know anybody that would need to hear this podcast or has any questions, I'm going to put the links in for UCLA, you know. If you needed to help anybody, or even for yourself, I'm sure Blake will be back with me again. We're in touch quite often, so if there's anything or any questions you have, feel free to contact me. I'll be more than happy to pass that on to him or any other information that you may need. But until then, remember, the most courageous thing you can do is be yourself, and until our next podcast, see ya.

Family's Journey Through Kidney Transplants
Family's Journey Through Kidney Transplants
Health Challenges and Family Support
Parenting Through Transplants