Grateful Guilt

Hello and welcome to the Gifted Life Podcast where we have conversations about Oregon, tissue, and ionation. Thanks so much for tuning in guys. We certainly appreciate you. We're trying to make life happen.

I'm Lori Steele. I'm Adam Keaton. Hello. What?

Wait, who are you? What? Yes, not Joey Bujreux. Alright, sound a little bit different.

We appreciate you being here. Thank you. What's Joey doing? We'll find out.

Let's get a quick question. Okay. And I'm Sarah Blake Warren. Alright guys, again, thank you so much for joining us here on the Gifted Life Podcast.

What a show coming up for you today. What are we talking about? That's right. We're talking about grateful guilt.

Okay. And we're going to talk about how vulnerability can lead to better connections. Alright, we're trying to spur those healthy conversations about organ tissue and iodine and our goal, your goal, our team goal is to make life happen. You guys ready to do that?

Let's do it. Let's go. Here on the Gifted Life, we are so proud to introduce you to Steven Tegebi. How are you?

Hey, how are you doing? I feel like we're old friends, Steven. Old friends. I met many a year ago, almost a decade ago.

Are you still looking the same? Ten years. I got better looking at this. That was ever even awful.

No doubt. I like it, Steven. So that was part of a transplant speakers conference that we had here in Louisiana. We'll talk about that.

But we had to get Steven on the podcast. He's the author of Grateful Guilt Living in the Shadow of My Heart. Grateful Guilt Living in the Shadow of My Heart. That is deep.

So you wrote this. What is your goal? Your mission? What are you trying to tell folks?

Well, I wrote the book because so many people told me I had to. And because I have survived things that, you know, I was the first in the world to live through two operations for AFD repair when I was a child at Atrial 7D Effect. When I had my first operation, the survival rate was 50% when I had my second operation. I was the first.

So I was until then, no one had lived through two. And starting out from that very young age, I had my first surgeries when I was on the day. I was born. I had a near fatal heart incident on my 17th birthday.

I was told I was never going to get passed. I was never going to get passed out of my 20th. And then I just kept fighting and fighting and next thing you know, the doctors are telling me you'd be to go out and live. And then I quote a virus that killed my heart.

So it's been a lifelong thing. But even since I was a child, I used strategies to stay alive, even as a child. And that's partly what the book is about. So that others, if they're facing serious health issues, they really don't have to do that.

They can realize that they need to use strategies too. And by using strategies, you can get through these things successfully, but you have to fight for yourself. And that's what a lot of the book is about, but not all of the book of course. You mentioned you use strategies to stay alive.

Do you mind sharing with us one or two of those things that you did in order to cope and to get through all the stress and trauma that you've been through? All right. Well, after I had my two operations, I was told that I wouldn't get out of my teens. And when I was around, no, 10 to 12, I used to do this technique called bullying my heart.

And every time I'd be doing something, I'd start my, and I would feel that my heart was feeling funny. I would sit down in an Indian position, you know, that, you cross your legs, and I would just bully my heart. I would yell at it, you know, internally, of course. I would yell at it to go back to work, and I would just really lay into it and tell it was lazy and all that.

And then I'd get up and go back and do the thing I was doing that made me feel bad in the first place. And I just kept doing that over and over again for a couple of years. That was one of the things I did. One of the things I do now is I won't go into a hospital.

You know, I won't be a patient in a hospital and wear a gown. You can't get me to wear a gown unless I'm in a hospital. I'm not going to wear a gown unless I'm in a recovery or something. When I got my second heart at theaters three years ago, they found me in street clothes.

And one of the doctors came up to me and said, you know, this is brilliant. He goes, I know the doctor's street you differently when you're in street clothes versus when you're in a gown. And he was, I actually wanted to do a study on this, but he was commending me on doing it, but I had already ascertained that on my own. So I wear a button down shirt.

I was basically talking about heart patients now and I'm a heart patient. So I wear a button down shirt with a pocket so that the monitor, you know, for the telemetry can go in my pocket to hang around my neck. And I wear sweatpants. And it's amazing how differently the doctor is for you.

Steven, that's another one. This is Adam. Going back to where you were talking about bullying your heart and you sit in a certain position and I guess you're basically trying to wheel your body out of a certain state. It's very similar to biofeedback.

And I think you mentioned that as well, maybe in the book. Yes. I don't know if they had biofeedback then, but I kind of invented it for myself. That's what I was going to say is kind of a form of biofeedback that you were doing probably as a kid before you knew what biofeedback was.

Right. On my 17th birthday, I had a severe heart incident. And the next day I was brought in. They didn't bring me in the first day because they didn't think I could travel successfully and not die because I was so fragile.

So the next day they brought me in and that night they were telling my parents that they should make arrangements. But when they were bringing me into the room, I saw an EKG machine, not an EKG, a heart monitor in the hallway. And back then they were the size of the original microwave oven, which I can't do it a little more in too, but as a readout. And I saw that machine and I don't know what, something made me know that I had to have that machine.

I demanded that machine. I had to fight for it. I brought it to my room. They put it next to me.

And I spent the next four days staring at that machine, willing my heart to beat because sometimes the screen would go blank for four and a half times, four and a half weeks without a single heartbeat. And I would just sit there and it would be my heart to beat. And afterwards, my doctor told me he thinks I'm the reason. He said the only reason you're alive today is because of you.

So for our listeners who don't know what biofeedback is, and I threw that word out there, do you have a simple explanation you can tell them or what that is or? Yeah, it's like, you know, you're looking at this heart monitor and you're looking at this beat and you're willing yourself to change the way that read out looks by telling your mind is telling your heart to do something differently, to beat better, to make the pattern that it's supposed to be making. I think that's the best way. If you have a better way of explaining it, you know, I'm just a lay person.

I would say it's probably mind over matter. It's that power that our brain and our mind has over our physical well-being, which the connection is newly made that it does matter and it does help. Yeah, it does. I have a motto that I made up.

It's called it's in the book. It's called mind over matter, mind over heart, mind over life. Oh, wow. That's cool.

I think it's, like Sarah said, it is biofeedback is a method of being in tune to your own senses and your own physical feelings in your body and making small mental changes and looking for the change in your physical response. It simply is very like mind over matter. Listen to esteem. I believe you can do it, man.

I'm just listening to you. We could hear the passion, but I had the pleasure of watching you in action. You also talk about guilt, a lot of our recipients cover guilt. You are alive.

Thanks to someone who said yes to hero. I've watched you coach recipients, helping them come to terms with guilt, using their story for positivity to pay it forward, to help save more lives, just so passionate about it and it works. Yeah. I mean, I think that when I first had my transplant and I was traveling around with transplant speakers, I would come home with such a wrap.

I was wrapped with such guilt. I would make me lay down for days. I mean, honestly, with three days, I couldn't even function with a guilt with so bad. But like you said, I've converted the guilt into an action and the action is that, all right, somebody gave you their heart and you know, all the platitudes, they were going to die anyway and all that stuff.

It just drives me nuts when people say that stuff. But the fact is that you have to honor that heart and that family. The family is involved too. And you'll have to honor that.

And the best way to honor it is to be as productive as you can be with that organ, that you make sure that you honor the family and the donor by being as productive as you can and being as helpful as you can. And I think that's a good way to help handle guilt. Yeah. You know, Stephen, I work with a lot of our donor families.

So, and I know a lot of times what you're saying is the epitome of what every donor family wants to hear from their recipients. You've really transitioned from guilt to gratitude. So I'd like to know how it went when you did meet your donor family. Oh, first I want to say that gratitude is what got me through everything in the first place.

Yeah. So when I was waiting for my heart, when the whole thing, all I was was grateful and great gratitude is the key to, I think it's the key to life. Honestly, I think it's the key to life. You have to be grateful in all things at all times.

And I live that way. You know, I'm sorry. What was the second part of that? I'd like to know how it was when you met your donor family.

What was that? My second donor family, the first donor family did not answer and which is common as you know. And one legacy which is OPO and LA said that only about 3% of the family's response is the recipients. And this family responded after about a year and a half and we met.

And then I just saw them again recently. I saw them in September. And we're actually all very close. And they tell me I'm family now and I'm very proud that I wrote the book.

It was a little difficult for some of them. In the beginning, it was difficult for me. I mean, it's a really bizarre thing. You know, I was walking around the house where the guy had his brain aneurysm.

His name was David Jockoboke. And he's a hero. But his mother Susan who said yes is a hero. And I mean, the whole family is a hero family as far as I'm concerned.

But I'm aware that I'm walking around in his house with his heart. And the mother actually wanted to take a picture of me holding the ashes which was difficult but I did for her. And of course everybody wanted to listen to the heart. So a whole condyline of people listened to the heart with a stethoscope.

And the reactions were pretty intense. Oddly enough, none of them else listened. Only the female. Which I thought was interesting.

Yeah. And how did that make you feel being a part of that for them? It sounds like you talk a lot about them but I want to know how it made you feel because we have a lot of recipients who struggle with the same things. Well going there was of course it's really odd.

I mean, there's no way around the fact that it's odd. And I remember saying to the mother the second time I said, you know, this is really strange for me. And she goes, you know, it's really strange for us. And it is.

And I tell you that the kind of guilt that I was having from the first part, I didn't have with this heart for some reason. But this is a different guilt that's coming now. I don't know if guilt is the right word of sorrow, maybe. The mother is vivacious.

You know, wonderful light woman. She's one of these people with a wonderful spirit. And she tries to act like everything is fine and she's all smiling and everything. But it's easy for me to see that just under the surface, she's falling apart.

She's crying. She's hurt. She misses her son and and on the one walking around with his heart. And that makes me feel very, very strange to be honest with you.

And I'm having to deal with that right now. More I'm dealing with, I wish I could do something for the mother. But I don't know if there is anything that I can do to be honest. But acknowledging these things is a good thing in the first place though.

I mean, that's a step. Coming from the recipients side, your side, do you feel that the experience overall after you, you know, embrace these feelings of discomfort and went into the situation to meet this hero's family? Do you feel it's a positive experience for you? Is this something you're glad that you did or are you glad you were able to meet that?

I'm thrilled I did it. Yeah, absolutely. I love this family. They love me.

They are incredible with me. Exactly. It took the father couldn't warm up to me the first time but this time he really did. And I've met almost the entire family and I mean, they're hugging me and, you know, and a crying while they're hugging me and they're telling me we're so glad you got it hard.

And you know, the thing I've always heard when I was doing that, when I was with transplant speakers was the donor families. Oh, we said it was the only thing being donating was the only thing that made sense out of tragedy. And I guess I see that now in the first hand basis in a way I never saw before. And I saw you at transplant speakers and these folks came and they weren't really sure it was going to happen.

And so you kind of took recipients into a room, you sat them down and it was like everybody was holding their breath like, what is going to happen? And then you just kind of listen to everyone's story. You show the similarities and then you kind of let them know how they can use that to save more lives. When they left that room I could just feel like relief.

So everybody loves that experience, right? Like that's one that they say, oh, we need to start that back up. We need to do more of that. But I just saw it with that room full of people that you impacted.

And now it seems like you're on a larger scale trying to impact more. So what's the kind of feedback that you're getting opening up and sharing your story, your journey? Well, you know, the book is certainly the biggest way of doing that that I've done. And I've been getting amazing feedback from it.

It's really weird. I mean, nobody does letters that you for. They hunt you down on Facebook and leave me on that. That's what they do.

And I've gotten some really, really heartwarming letters. You know, one woman wrote me telling me she never understood what her brother went through because he went through open heart surgery as a child. And she said she never understood what he went through until she read my book. Another one, a mother got in touch with me to tell me that because I talk about how it's a real problem with a lot of mothers.

They get a child as sick. They get overbearing on the child. They abandon the family trying to save the child. And they end up getting divorced and hurting the child more.

And this woman wrote me saying that she had an autistic son and she was doing that. Her husband had already left. And she realized what she went, oh my gosh, that's what I'm doing. And she realized what she did.

She called her husband back in the back together again, which makes me feel thrilled. So all these different, you know, people reacting different ways. But, you know, I've gotten a lot of people who've had heart things getting in touch with me, whether they were transplants or they've had valve replacements or they have a really bad situation with their heart. And they write me and they tell me how much the books help them.

And that is beyond satisfying to me. That's exactly what I wanted to happen. Man, in your journey, it sounds like you're meant to help others in any way, shape or form. You talk to us, we can hear your passion, we want to follow you.

I'm sure more people will want to follow you, get in touch with you. So tell us those avenues besides stalking you on Facebook. We don't recommend anyone. But tell us how to find you.

They can find me on my website, www.gratefulgilt.com. And you can message me there. If you need to, you can find me on Facebook. My regular Facebook page or my author page, Stephen, Stephen, Heidi author is my Facebook page for the book.

So those are the, I'm also on Twitter. So I can be found in all those ways. You know, and I'm open to talking to anybody. I mean, I go all the time, someone's always needing a heart transplant.

Can they speak to you? And, yeah, of course you can. And I look forward to doing those kind of things. I've actually got a lot of calls for people and people are just really sick.

And they just want somebody who can help their loved one get through an illness. And that's fine with me too. I don't care what it is. You know, if you're facing something, if I can help, I'm there.

Wow. And we appreciate you. We know that that is a comfort to a lot of folks, just a mentor. Somebody who's been there, done that and is now on the other side and is so passionate and filled with life that we can hear coming through the mic.

So again, grateful guilt, living in the shadow of my heart. We hope that you check it out. Stephen, Ty, I guess you're on the gift of life. And we hope that you continue to keep us up to date on what it is that you're doing.

And we'd love to visit with you again. That would be my pleasure. All right. Go out and change the world, man.

One person making a difference. I love it. Thank you. Here on the gift of life, we like to take a moment for mental health.

Sarah, what are we going to talk about today? Okay. So today we're going to go ahead and talk about something that's pretty popular and based off of a researcher who I'm very obsessed with. And you should all go by her books and read her blog, Vah and Instagram.

I'm going to be uncomfortable. Yes. Her name is Renee Brown. And if you haven't seen her TED Talk, it's one of the top five in the YouTube world.

And she talks about vulnerability and connection. She has a special Netflix as well. Yes, she does. She's very popular.

She's a PhD social worker. So of course I love her because that's what I do. Right. But she really had some groundbreaking research in the last 10 years or so about vulnerability, which can, for a lot of people, translate to weakness, being very very popular.

But really what she found was the more you are vulnerable, the more it leads to better connections with people and truly a happier life. So have you ever had a moment where you had? Why did she look at me? I'm looking at you.

I've never seen you be vulnerable. Oh my gosh. None of you. I've been surrounded by people.

I like it. People like trust. It's hard. It's very hard.

But have you ever had a moment where you're talking with someone and you are so uncomfortable about something you want to say or conversation you want to have. But then you do it. You make yourself vulnerable and the outcome is very good. It's very positive and you just walk away feeling so much better.

Does that happen? Always feel better after that you did it. Yeah, but it's still so hard because you have to share a piece of yourself that's not comfortable. If you're angry about something or if someone has done it, has hurt you.

I know what you're talking about. It's a stomach hurt. It's a little better after. Yeah.

It's tough conversations, but it's also just being more vulnerable in your daily life too and being authentic. It's hard because it's hard to know yourself fully too. And we want to protect ourselves. That's right.

And that's the thing is we have this innate human thing of protecting ourselves from getting hurt and suffering. So that's why it's so scary to be vulnerable. It seems counterintuitive. That's right.

But the research shows what we're going to discover is that actually if you do open yourself up to being vulnerable and to being more authentic, you really will have a better connection with anyone. And I'll say three more times you'll be so much happier. Say again. So much happier.

Can you just give me a push? Just give me a push over the line. I'll force you. Ask me some uncomfortable questions if you want.

You do all the time. No, it's good. We're learning. We're growing.

It's just tough to get there and it's tough to kind of get out of the habit of people seeing me in this light. I continue walking this trek. Right. So take a side road.

Yeah. You don't have to put that very face on all the time. You can be vulnerable and open. Yeah.

I think it's good to have a daily reminder to yourself as well that I'm going to start this day out by doing something that puts me out of my comfort zone. Yeah. And then you can start to build that into your life. Right.

That's a good one. Learn to take risks and put yourself out there. All right, Adam, do you want to take over the segment? No, it's all really all right.

So go out there and make a change, guys. You have a topic you want Mr. To Handle Info at thegiftedlife.org. We'd love to hear from you.

In every episode of the Gifted Life, we take a moment to honor a hero. Today, we learn about Travis Buzzard from his mother. Travis is my oldest child. I was a young single mother when I had him, so he grew up without any luxuries except he was very loved.

Later, I had another son who specialized in pushing Travis's buttons, but they grew up and developed a special bond. Travis lived life on his own terms. Eventually, he landed in New Orleans, and although he wasn't a native, the city seemed to embrace him the minute he set foot inside the city. Travis was a loyal friend, and if he saw someone in need, he was trying, he would jump in to help.

He loved to travel and went to Ireland in Spain. Ireland was his favorite. Travis was not an angel by any stretch of the imagination, but he was well-intentioned, a great person to have in your corner in good times or bad. His love was always unconditional.

A fire took his life unexpectedly, believing his brother and I forever changed. Donating his organs was one of the hardest things I have ever had to do, but I know it was what he wanted to do. Travis, we love you, and miss you, to the moon, and back. Now we pause and say thank you to Travis Joel Buzzard for the gift of life.

In today's question and answer segment, oh, Adam, this is for you. How are you able to keep a patient alive when you take the old heart out, but the new heart is not in yet? That's a great question. That's a great question.

And I think probably a pretty common one, because how are you alive if you don't have a heart in your chest to beat and pump blood around the body? So if you think about what the heart does, it pumps blood both to the lungs, to exchange oxygen and carbon dioxide, and then back to the heart, and then the heart pumps out to the body to get oxygenated blood out to your body organs and your arms and legs and your brain and all that important stuff that we use in a day of life. Kind of important. So people probably are familiar with the term bypass or cardiac bypass or heart lung machine and all the same thing.

So when they're removing an old heart, basically need to oxygenate the blood and keep it circulating through the body. So in, I guess, a short way of explaining would be they would attach a tube to the major blood vein, providing blood back to the heart. And so it makes a continuous connection that tube goes into a machine. The blood goes into the machine, is circulated, and CO2 is pulled out of the blood, oxygen is put in the blood, and then the tube coming out of the machine goes back to the body.

So the machine goes back to the aorta, which pumps blood to your brain and the rest of your body. Technology, y'all. Yeah. So it's just a centrifugal pump and an oxygenator to oxygenate the blood.

And as long as those are hooked up, they can artificially pump blood oxygenated blood around the body until they get ready to put the new hardy in. And then when they're ready to put the new hardy in, they unhook those tubes quickly so the vessels back to the heart. So everything's back in anatomical position. Wow.

And then sometimes the heart can restart on its own. Sometimes it takes a little jolt of electricity to get the heart pumping again. And once everything's connected and the heart is pumping, you're good to go with your new heart. Oh, miracle.

That's pretty neat. You make it sound so simple. Yeah. Connected to oxygenate blood, that's how you go.

Yeah. Guys, if y'all have questions for us, please email us at info at thegiftedlife.org. Great podcast today, guys. We appreciate you sticking with us, listening to the end.

We have to thank Stephen. We learned so much from him, right, guys? Amazing. We hope to have him back on the podcast in the future.

Should we thank this guy, Sarah? Yeah, he did okay. Oh, well, then only Adam Keaton. Lopez advanced to practice coordinators sitting in for Joe.

Ha, we found Joe. No, where is he? Is he practicing vulnerabilities on way? Yeah.

What are we doing? I hope he is. Adam's looking at me like, what is happening on this podcast? But we appreciate you stepping up Adam and helping us learn today.

And then guys, you can always find us at thegiftedlife.org. That's where you can find all the episodes. Our goal is to make life happen. Or listen to us wherever you listen to your podcast on Apple, Google, Spotify, iHeartRadio, and leave us at five star ratings so other people can find us.

Or find us on social media and like our Facebook page, the Gifted Life Podcast, and follow us on Twitter and Instagram at Gifted LifePod. You can also give us a call, 5046483477. We may even play your message on the podcast. But I thought you were going to sing it.

Like I was like, hope and born Adam. But not yet. One day guys here on the Gifted Life, we appreciate you staying with us. Okay.

That's a no, I think, right. All right. So I appreciate you following the Gifted Life. We hope that you spread the word.

Our goal is to make life happen. Save more lives. You're part of our team, and we appreciate you. We hope that you go out today and do something you would normally do to help us make life happen.

Talk soon. This is a production of LOPA, or the Louisiana Organ Procurement Agency. The Gifted Life is hosted by Lori Steele, Joey Buudro and Sarah Blakemore. Our executive producer is Kirsten Heinz.

Producer Ishelon Caraway. In turn is Rebecca Rannam and we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.