Hello and welcome to the Gifted Life podcast where we have conversations about organ tissue and ideonation and transplantation. You can always find us at thegiftedlife.org. I'm Roy Steele. I'm Joey Boudreau.
I'm Sarah Beward. Coming up on the Gifted Life today. We'll be talking to a lope employee who's inspired by this podcast to create her own in order to help others affected by congenital heart defects. And we're going to talk about how to use self-doubt as an advantage.
All that more right here, thegiftedlife.org. All right here on the Gifted Life. We are so happy to have Ms. Lana Stevens live in the studio.
Hey girl. Hey girl. Hey. We've been knowing Lana here at Lopea.
Way back actually 19 years we classed in 2002. She myself and a couple others that are still here. Knock on wood. And I can remember when I first met Lana, I knew she had to be something in community because they said that's a loud new allen's accent back there.
Well what's your excuse? Mr. Coppola. I'm the Dean.
Excuse is being cajed. So welcome aboard. Lana is our community educator and volunteer specialist. Like I said, she's been doing for the most part doing that for 19 years for Lopea.
So welcome aboard. Thanks for having me. All right. So we have you here because we know that you have a new venture that you started.
But it's all about education. It's like your whole life. Let's talk. Let's learn.
Let's teach. I love it. And we're going to bring in these experts who know and we're going to just have a talk about it. So let's talk about your podcast and maybe where you got an inspiration started.
So I would be lying if I said that I was not inspired by the gifted life podcast because I did not know what a podcast was until the gifted life podcast. So you guys are doing really great work. If nothing else, educating people out what podcasts are along the way about working to show an eye donation. So obviously got into listening to you guys and just really realized that it's just a great platform to be able to educate and for some of us maybe more than others, maybe like a therapy session.
Yeah. That's how it was for me. It is for us. Yeah.
I could tell just from being here. It's very therapeutic. Yes. And it's a great learning tool.
Like you say, I learn every time we come in the studio and talk to our guests. And so I hope to do that today too with you. We have a little girl named Harley. You had her when you were here at Lopea.
Yes. So I always say I've been married to Lopea longer than I've been married to Kevin. So Joe, Joe, you and I go way back further than Kevin has married a year after I was with Lopea. And about a few years later, Harley came along and I had been an educator with Lopea and talking to people about organ tissue and eye donation.
And when she was 24 hours old, we were given this diagnosis of congenital heart defects called tetralogy of phlo. And when I'll never forget being in the hospital room and the nurse from the nursery calling me saying that she had been diagnosed with this, and because of the line of work that we do and what we are used to hearing about, my mind immediately went to the Bay of Need to Heart Transplant because that's what you think and that's what you hear. And it's like you know, it's fearful. Yeah.
It's what you know. And sometimes it's like a double-edged sword of knowing too much and those types of things. But unfortunately for Harley, that was not the case. She has had three open heart surgeries and one of those being a valve replacement.
And then she had another valve replacement just a couple of years ago, but it was you know, with the with modern medicine being so great. She was able to do that in a cath lab and not have to have an open heart surgery for that. So she has had two heart valve replacements. And that's something that's not foreign to us either.
We know that pretty well through tissue donation and things like that. So it just was kind of one of those things that, you know, after she was diagnosed and then once we kind of got into that whole CHD parent world, I was like, you know, I'm a big, I'm a big believer in God-winks. And I kind of feel like that was one of those things where I was like, okay, I get it. This is where I'm supposed to be.
This is the education I was supposed to be doing, but I always felt like that there was more with that that I should have been doing. And so just kind of it just evolved over the years. She's almost 16 now. So we didn't have a beautiful on stage live in life.
And I like that you social media to show like having gone through all that look where she is and it's an inspiration for us. She's awesome. She's awesome. Yeah.
Can I ask what kind of valve she received? Was it from a deceased donor? It was not actually. And of course, when she had her first valve replacement and I like interviewed the surgeon.
And I remember him looking back at her chart like, who is this woman? He goes, oh, that's right. They did tell me you worked for a little fun, but it was the last two surgeons choices to not use deceased donor valve because of the specific valve that she was having replaced and the age that she was. They felt it was best to use valves made from cow pericardium.
And so I'm just supportive of whatever can help anybody. And if that's what works best for her, that's what works best for her. Does that mean that it won't happen in the future? She's probably not done.
So could be in her future? Maybe not. But I know that some children do receive donor valve. And so we're just open to all kind of things that can save lives through.
Yeah. The good thing is you've seen the progression. This is what, so 15 years ago, with a major open heart surgery on an infant, on a newborn, and then progressing till now, doing it in a cath lab, it's almost like a day surgery type thing. It's so crazy to see.
That's the difference that we're talking about. It's so crazy to see what has happened in 15 years. And Sue and I always talk about this on the podcast is just to, I mean, 15 years is not long. It's really not.
But in the medical world, a lot has happened. A lot of it has happened. You wonder what's going to happen in the next 15 years now? So what's the name of your podcast?
So the name of our podcast is Nolahotz, H-A-W-T-S. We are two New Orleans girls with attitude, with a little bit of an owl's face. I'm from Madery and she's from the West Bank. I'm not going to hold it against her, but she is from the West Bank.
And we, it was one of those things, another God link, I guess you could say that so many people are like, you need to meet my friend, Susan. You need to meet my friend, Susan. Her son is 12 years old. So he was born a little bit after Harley, but we had a lot of mutual friends and she and her husband started a foundation to help with CHD families called the Henry Oakland Foundation.
And my husband and I got involved with that because we wanted to give back to local families. And so we met through that and I just clicked and realized that she, Joey, is very similar to me if she was, did not do the work that she does as an eight to five. She would be an educator of some sort as well. She's a talker.
So she and I kept telling her, we need to do this. And she was like, okay. And of course both of our husbands were like, when are y'all fitting this in? But you seem like you have fun doing it.
We do. Yeah. And you had the kids on. We did.
That was interesting. We had Henry and Harley, Henry is a man of few words. Harley is usually a woman of many words, but she like me, got behind the microphone and kind of, she tends to stop. But she did well.
We had both dads on to look at the dads perspective. We've had physicians. Just kind of different perspectives of the CHD world and didn't realize until we got into it how much there was to dig into it. Much like you guys do probably.
I mean, you've been around for years and you always find a new subject to talk about. You talk about Noloharts, Harts. Yeah. Say it right.
So we do say our ores in Lafayette. Right. But I'm sure you had an idea of some of the things that you were planning to get into as far as education and learning, digging more. And just like here, we've started going in one direction and you find so many other things.
I'm curious as to what were the most engaging, what were the things that the nugget that you found by doing the podcast that was like, wow, you know, didn't expect that. So we really hope to feature other organizations within the CHD world that can help other families to offer resources to other families that are new in this game. Because I say that because as I've been around for almost 16 years, there's somebody who was just born this morning and this is a whole new world of navigation for them. And so we wanted to be able to be a library of resources to give to these families and questions that maybe they wouldn't think.
So some episodes we've had physicians on, we've had our really great feedback sessions have been when we've had a pediatric cardiologist on, we recently interviewed a pediatric cardiac surgeon who was also a heart dad. So he kind of had a little bit of both sides of the perspectives. We've talked to both of our kids attend a summer away camp, which is four cardiac kids. And so we had that group come on and talk about that resource that's available to families.
We've talked about PTSD. We've talked about we'd like to get into maybe talking to siblings of CHD kids because that's, you know, those kids are affected as well. Some subjects we'd like to see in the future are like talking about pregnancy and CHD females because that wasn't a thing years ago. It was highly discouraged.
And now it's more doable. Like you're talking about specifically the surgery in utero. So is that what you're talking about? No, no, no, I'm talking about, for example, Harley, she's 16.
And the next 10 years or so can she get pregnant? I thought you meant during the pregnancy if you found the congenital. No, but that's a good one too. I'll mark that down.
That's well now. That's become more and more likely that's kind of in pregnancy. Well and what's another thing is Harley was diagnosed when she was a day old and now the same defects are being diagnosed at 20 weeks long. So that's, you know, all new too.
So there's a plethora of information to be had and it's always changing and evolving and you're learning more. Yeah. That's really exciting. And I'm going to talk about some of the comments that you guys have on your page.
So check out the page, which is Nola and in spell it. Nola hots in LAHAS. H-A-W-T-S. We're on Facebook and Instagram and you can email us at NolaHots at gmail.com and O-L-A-H-A-W-T-S.com.
So I saw mom, he said, oh, we're going through this and I'm so glad you brought that to everyone's attention. So do you get a lot of that response? We've had some families, private messages and say that they really enjoyed the podcast or they liked really hearing from their physician and more of a casual conversation atmosphere and not such a, you know, sitting in the ICU and just hearing kind of like Charlie Brown will comment to you from the doctor. So we've had a lot of compliments about that.
We have been told that they like that we are so candid and raw. No. I think that they like that we usually start our episode with the clink of a champagne glass. It makes everybody feel like it's okay to do that.
So yeah, families have been really great. We have started a new thing called Lanyap episodes because we found so many families wanted to share their story whether it be therapeutic or just to get the word out. So we've done a Lanyap episode, which is a recording of that mom or dad or grandparent or whoever, basically reading their personal story. And it's an opportunity for families to say that on their own.
Yeah, like honoring here. Yeah, like that. So just getting into the podcast world. We know that some podcasters kind of tune in.
They ask questions. Joy, who's our IT guru gets a lot of questions. Was that hard? Was it overwhelming or was it kind of simple?
Like what was it like for you guys getting into it? Well, we still we started in December and we still are like every time we get an interview with somebody. We're like, have you ever heard of a podcast? Oh, yeah, no, no, no, no.
Okay, don't worry about it. We don't know what we're doing. So we assure everybody that we do not know. We're still six, eight months in and have no clue what's happening.
And we just keep showing up and doing it. I can tell you that we are nowhere near as professional as this fabulous studio here. So you just got like two mics, a computer, a computer. We got a mic in the computer.
That's it. And a zoom. That's it. And you guys still mic each other all these months and we do.
We tend to do this on Sunday evenings because that's the best time for both of us. And so it's a good time for us to be able to like come down from the craziness of the family on the weekend. And you know, sometimes it's a cup of coffee, sometimes it's a glass of wine. It depends on the weekend.
So do you guys have like a schedule as to when y'all put it out or? So every other Tuesday, every other Tuesday we drop a new episode and then you know, you can randomly get a surprise treat with a landing episode whenever we decide to get that together. But sometime that month as well, June was, um, was one of those three Tuesday months. So we had a lot of fathers that were coming into celebrate fathers in June.
So was this a COVID? Let's do something fun idea since you started the idea was there before COVID and, um, I don't, I have no idea what really I really don't know and still. Yeah. Probably champagne involved here.
Yeah. I agree. And our tagline is no judgment here. It's all about survival.
So that's how we feel. And we feel like this is just an opportunity for moms and dads and siblings and adults, the HDers to just survive through the craziness of this. Yeah. And just to connect with each other.
And to do any podcast as you find common grand in connection with people who have gone through something similar. So it sounds like y'all found an audience and sharing your stories has to help you too. It absolutely does. We always laugh because we're like, we realize that we should be in therapy, but instead we started a podcast.
So let's just do that. Can I ask, what does Harley, how does she communicate about her part defect? How does she talk about it or does she not share with other people? She, um, I know that you'll be shocked to hear this from my daughter.
She tends to turn to comedy. Yeah. And that's her way of dealing with it. Yeah.
I don't know if it's the healthiest way. Yeah. She's. And you can do that.
You take something that you've gone through and you turn it into something that's like for other people. I think that's, I think that's fine. Yeah. She's come a long way with that though.
I will tell you, you know, I mean, when she was much younger and really the, the trauma of hospitals and doctors were there and I'm not saying that's not still there, but she, she is definitely better about dealing with it. Yeah. And as she continues to blossom into this beautiful young lady and I don't know if you want to talk more about that, but there's a scar we're wearing dresses for dances and costumes for, she's on stage and stuff. And how does that?
She has gotten so great with her scar. She's gotten so great with her scar. Um, she really was never terrible with it. Um, I think it's because she's always, she doesn't know, we hardly know her without it.
She was 10 days old for her first surgery. She was like, we're not really not much of anything else. And you know, over the years you have kids, well, what's that on your chest? And she's like, oh, it's a hard surgery.
And then we go on to the next thing. But, um, I think she's kind of come to appreciate it. Definitely as she gets older, she's definitely more embracing it than she ever was before, though. That's great.
Especially being a female being that age, you know, that would definitely be a concern as a parent. Yeah. Yeah. Yeah.
Well, I love that that you're dabbling in that and it makes you a better community educator. I hope it does. I hope it does. And we're good.
So we like it. No, let's us do, like a, like a two. Yeah. I mean, you say hard.
You say hot. Come on. There's no hots. No, no, we can find you again.
You can find us on all the platforms for our podcasting where, um, let me think, Amazon Music, Apple Podcast, I need a check on that. I think we might be on Google Podcasts, Stitcher. I need to look at all that stuff again, but we're mostly where everybody listens to your podcast, mostly of course, probably not my heart rate. And so somebody is listening.
They're like, Oh, I have a great story to share. Yes, we would love for you to email your personal stories to no hots at gmail.com. So, Lina, if you had one piece of advice for families who are affected by CHD, what would it be? I would be cheating to listen back on some of my podcasts to listen because we ask everybody that's who comes on and I think it's a valid and very important question.
For me personally, what my one piece of advice would be is to lean on your people. Find your people and lean on. If your people are your spouse, your husband, wife, whoever it may be, lean on your person, your people and take help. I had a conversation with somebody earlier about we are typically helpers and so we find it hard to take help but you have to do that.
You have to do that and you have to see that you can be better for your child to take the help that you can get it because the resources like us are out there and people are willing to help with other families or your own family. So, lean on your people. Great. Your tagline, I think, applies to.
Absolutely. We don't judge. She said that was such an evener facial expression. Because everybody deals with it so differently.
So, like, if you're going to deal with it and, like I said, if it's comedy, we're not going to judge on that. If you're going to go and hide in your closet and eat six leaves of Oreo cookies, I'm not going to judge on that. I was like, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew, phew. So, really the first thing I want to say is that doubting things isn't bad and doubting yourself can be positive if you do it to just check in every now and then.
Is this really realistic for my capabilities? When it's bad is when you start avoiding risk too much, because risk can be a good thing. With risk, you get a lot of advantage. So, it's really when you're avoiding risk and you have this fear of making mistakes that just changes how you even interact with people, what you attempt or what you want to do at work or with friends.
So, this is really when it goes a little too far self-doubt. But the first thing is to know that it can be good and that it can help you regulate your choices. So, doubting something and going in with a clear head and thinking about all the choices you have, self-doubt is really there to try to save you and protect you from humiliation. So, it's okay as long as it doesn't go too far.
The next is it just needs to be challenged. We talk about this all the time, like just recognize what you're doing and challenge it. Think things through. So, if you're doubting your abilities, stop, challenge it and see if this is coming from an objective place or is this, you know, harmful?
Are you just being really down on yourself for no reason? For example, so, you know, I as a social worker, I know my capabilities. I know what I can do. I also know what I can't do.
So, when I challenge that self-doubt, I just bring it to that. I think, what do I know about myself objectively? And is this just something that I'm being way too hard on myself? I can't do this when I know I can.
Just kind of take the feelings and emotions out of it. Don't be so hard on yourself and try really hard to think about your true capabilities. As I'm getting older, I think there's more confidence that comes with it. Like, probably have no business doing that, but here I am.
Go and try this. Yeah, and that's okay. Because I worry about getting hurt, but other than that, it's okay. Right.
Well, I'm not saying go hike up a mountain if you've never done it before. But really think about what you can't do. And like you said, the older you get, the more you know yourself. So that's another part of this is knowing yourself.
Yeah. You learn if you don't try. That's exactly right. Risk isn't bad.
You can push yourself sometimes and get to the next level if you need to. But when you don't know yourself or if you're struggling, like I don't know if, like really I can't get there about whether the self-doubt is realistic or not. Talk to others who know you. Because we don't know ourselves fully, but others can be objective.
If you go to someone who you trust, someone who's supportive and you ask them and get feedback and let them know how you're feeling they'll help you. I've got really good friends. That'll definitely tell me. No, Joey, you suck at that.
They check your e-mail of it. Yeah. But just so we just podcast where you are pretty confident we can do it or. I mean starting this podcast and doing anything with a mic in my face, it was beyond doubt.
There's no way, you know. And then I finally got to a point where, you know, I was like, well, I mean, it becomes a little more second. It was uncomfortable. Those were absolutely.
This is definitely an arena for me that has carried the most doubt. Like, sure. And I'm not just a podcast, but anything where I'm speaking in public, you know, or addressing any type of issues, especially looking at, you know, seriously, all seriousness, you know, I have a very thick accent. I mean, I know y'all can't tell.
No, we can't tell. It's very thick. And so I do have it. They kind of resonates.
There's a lot of doubt that resonates when I'm having any type of public speaking where I know it's not going to be a bunch of Cajuns listen to me, a bunch of South Louisianaans. But you know, I think you're unique too. Yeah, but I think that's that comes with it. And I'm not saying you're insecure, but is it doubting your abilities to communicate effectively?
Are you insecure about the way your voice out? You know, I think break it down. Look at it objectively. Like just because you have an accent doesn't mean you can't have.
I can't listen to myself. I can't listen to myself. So I don't know if it's probably a little bit of my voice, my accent. But I don't have a problem though.
I don't have a concern. I don't have a doubt about not knowing whatever information that I'm speaking about because I don't speak unless I know the information. Like I'm one that I don't like to. Come on.
Your guy. Can't tell your stories. Come on. It's true.
I mean, I'll say I have no idea if there's something else. So I know whatever information I'm talking about, you know, usually I have a good idea. So it's more to self doubt on how I articulate and how words come out and how it's hurt. Yeah.
And what your people, you always do a great job. Like from our perspective. I think it's a perfect. Wow.
That's why you're part of the leadership of the team. Okay. But I think this is a perfect example of this exact thing. You had a little bit of self doubt.
You thought about it. You regulated your choices. You thought whether you could do this or not do it. You tried to think objectively about what your actual abilities are.
You broke it down and then you came to us right now and you're telling us. And I think this is a perfect example when you are feeling doubtful about yourself. Just try to be objective or go to somebody who can be objective and supportive. And it'll do wonders.
It's funny. So in the moment, I have to actually cognitively tell myself that I've got to like give myself a pep talk in the moment. Yeah. Because Joey, what's the reason why you guys speak on obviously you came up on Channel 10, I watched you on KLF Y back in Lafayette and for you being in a camera on live TV is nothing.
To me, as long as it was recorded, it was fine. Any time I had to go on live TV, I froze in with COVID, I had to do it a lot. And so self doubt crept in every single time. And each and every time I had to say, look, this is the same.
It's the same thing, same information. I knew my information. I knew exactly what I wanted to get across. So I gave myself this little quick pep talk and then of course the lights come on.
I'm an expert, yeah. Just dive a little deeper. Why am I doubting myself? What is this really about?
And then go for it, I think. But you know, fun fact, I was on TV in Cajun Country and got letters saying that I need to improve my speech, my accent. Wow. So yeah, Cajun Country.
I never heard you with an accent. I mean, as far as being in Lafayette, Louisiana with Cajun Country, you had a lot less of a thick accent, obviously than most of you from New York. But you know when you're younger, all those negative things are thinking, OK, how can I transform? But that was just part of growing up with them.
All right, awesome. Maybe you have a topic you'd like Sarah to cover, email us info at thegivedlife.org. And our question and answer segment, how does a person on the waiting list get chosen for an organ? Joey?
It's a complicated question and answer. But the simplest way to answer it is, when you are on the waiting list, you have a score of some sort. It tells you how it's an objective look at how sick you are. Because obviously the sickest person gets the first choice.
And as far as kidneys, because you have dialysis, it's a little different. It's the person who's been on dialysis the lungs. So for all other organs, though, the sickest by the scoring system. And so what happens is when someone passes that has certain matches of yours, like blood type, certain antigens size.
So that all gets input into donor net, into the national database. And the sickest patient comes up first, that's in a close proximity, and then the next sickest, and so forth and so on. So in the LOPA, the organ procurement organization, has to abide by that list. So we can't just jump down if we see ant marching at sequence number 200.
We have to go to one and two and three and four. So we then notify the transplant center that you, in this case, are the first person that comes up. And at that point, that's where they'll make the decision based on the information that they've gotten, that to make sure that you would be a good match with this donor and make the decision whether that organ's good for you. All right, that's it.
In a nutshell, obviously a lot goes into the process. Good question. Maybe you have a question for us. You can give us a call 504-648-34-34.
77. In every episode of the gift of life, we honor a hero. Today, we honor Cameron Marcella Harness. And we learn about Cameron from her family.
Cameron was a junior at Louisiana Tech, majoring in elementary education when she left us in October of 2019. She was incredibly smart, funny, loving, and beautiful. We miss her every day and always will, but they'll comfort knowing her gift of donation has made a difference in the world. And now we pause and say thank you to Cameron for the gift of life.
And that is episode 166 of the gift of life. Thanks for listening guys. And remember, you can always register as an organ, eye, and tissue donor anytime, register me.org. Huge thank you to our own, Lana Stevens.
You know, of course, she mentioned that she was inspired by this podcast to create her own, taking what she learned through the experiences with her beautiful and talented daughter Harley, and helping others with congenital heart defects. Plus, you just wanted to talk to her. Fun hang out with. All right, the best place to find us guys is at our website, thegiftedlife.org.
You can listen to any of our episodes on our website or wherever you like to listen in, whether it's iHeartRadio, Google, Spotify, or Apple. If you do listen on Apple, go ahead and leave us a five-star rating and a review so that others can find our podcast. On social, like our page on Facebook, the Gifted Life podcast, you can also follow us on both Twitter and Instagram at GiftedLifePod. And our ask is that you go out and do something you would normally do to help us make life happen.
Until next time. This is a production of LOPA, or the Louisiana Organ Procurement Agency. The Gifted Life is hosted by Lori Steele, Joey Boudreau, and Sarah Blakemore, our executive producer is Kirsten Heis, producer Ishelon Caraway. Intern is Rebecca Rannam, and we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.