Hello and welcome to the Get to Life podcast where we have conversations about organ, tissue and ideonation. You can always find us at thegiftedlife.org. I'm Lori Steele. I'm Joey Boudreau.
I'm Sarah Blickmore. On the episode today, we'll be discussing the hidden challenges that all families encounter while waiting on a transplant. And we're going to give you some tips to be your most authentic self. All that more right here on the Get to Life, you guys ready?
Yep. Let's do it. Here on the Get to Life, we are honored to be able to talk to Bob and Mary Evans. Welcome to the program.
Thank you. Thank you very much. So we know that you guys are the driving force behind the Jeffrey Campbell Evans Foundation. So we want to get into that and what great things the foundation is able to do these days.
And we want to start by learning more about who Jeffrey Campbell Evans was. So Mom, Dad, can you tell us? Okay, I'd be happy to tell you that. Jeff's story started as far as the transplant goes when he was 23 years old.
He was actually a four-star chef in the city of Atlanta. And he loved everything to do with cooking. He loved even cleaning the grills or washing the floors or cooking, whatever. And the restaurant that he worked for, the owner loved to do charitable events.
And Jeff, being Jeff with the big cart that he had, always volunteered his time to go on these charitable events. So they were in South Georgia on a Saturday afternoon. And as we understand it, the weather was pretty bad and it was an outdoor event. And so when Jeff came home, he just felt like he maybe had the flu.
So he came and stayed with us for a few days. And after a few days, we realized that this was more than the flu. So Bob took him to the local hospital to the emergency room and they took x-rays of his chest. They thought maybe he had pneumonia or whatever they thought he might have had.
And what Bob heard after someone looked at Jeff's x-ray hanging on the wall was, oh my God, whose heart is this? As it turned out, they determined that an unknown virus had attacked Jeff's heart and in that short amount of time, destroyed 80% of its function. So he was immediately transferred to St. Joseph's Hospital in Atlanta back in those days.
That's where they did heart transplants. And he was in the hospital for a full month being evaluated and then he was put on the heart transplant list. And he lived on the heart transplant list for three years. And at the end of three years, he lost his battle with the heart disease and he passed away at age 26.
So that was his story. And that is why we do what we do about, I'm going to say eight or nine years later, I was sitting at my kitchen table having a cup of coffee one morning and I just turned my head up to heaven and I said, God, you have got to show me some way to make sense of losing my boy because of this mom, it makes no sense that he's gone. And what came to my mind was when he was first diagnosed, he was told he would have to move from Atlanta to Birmingham to get the heart transplant because of the health insurance he had at the time. Well, fortunately for us, they worked that out and we did not have to make that move, but it would have just sent us into a financial tailskin if we had had to do it because that's basically it's hard to keep two households going financially.
But anyway, they worked that out for us and we didn't have to do it, but I thought back to that and I thought there's people coming into Atlanta under those same circumstances because Emory and Piedmont and Children's are all transplant hospitals in Atlanta. And so the idea came to build a transplant house. And so that night I came home from work and I had our son Brad come over and I explained to them what I'd now call my vision and they said, let's go for it. And so that's one of my work out and I thought, okay, now what do I do?
Yeah. And my only reference was the heart transplant unit, as St. Joseph, so I called there and I found out that all of that had been transferred to Emory Hospital. So I called Emory their heart transplant unit and I was lucky enough to get a nurse answer to answer the phone and she was so excited about this concept of the transplant house.
And she said, I'll have one of our doctors call you as soon as I can. And I was a little skeptical thinking what doctor is going to call me when they don't know me and this is all brand new, but wouldn't you know, 20 minutes later, Dr. Andy Sniff, heart transplant surgeon at Emory Hospital called me and talked to me about what we were going to do and just gave me some ideas on how to get started. So that's how the whole thing started.
And when we formed our first board of directors, someone said, let's start smaller and just do apartments. So that's how we got into the apartment concept. So on July 1st of 2017, we opened our first fully furnished two bedroom, two bathroom apartment, all with everything donated from a community. All of the furniture was donated.
Wow. You guys have a great community there, huh? Good community school. Yeah, exactly.
It was amazing what happened. And someone moved in that very day. Our first station. Oh my goodness.
Oh, so let's talk about this. So since then, we now have opened five more apartments. So we have a total of six and our seventh one will be opened right at the beginning of September of this year. So that's our story.
And that's why we do the Transfine House. You guys are rocking and rolling. So seven and it came up with just an idea. So Bob, when she comes to you and she has this idea, what's going through your head?
A lot of things go through it, especially over so many years now that we've been in a general sense working on this kind of an idea. But at large, the idea really of doing something on a grander scale is imminent and it has to be done because the people generally speaking, if they're listening in and have no real understanding of the trans-life world. Here in the state of Georgia, all by its lonesome, there's over 4,200 people having to have a trans-plant. The number is very high and what's very, very low in the public doesn't know this either.
It was last year of 2019 between Emory Children's Hospital Atlanta and people. They only did 1130 trans-plants. They're booked. So if you look at the relationship between that and the number of people leading one, it's hard to say, but I always say maybe 70% of the people will never be fortunate enough, even even have trans-plants.
And having our son go through this world and he really was in and out of the hospital for many different, very, very important reasons to sustain his life. The fact is we just decided ourselves that we've got to give a gift, very, and I really believe this in our heart. We've got to give a gift back to society. And our gift is taking care of the people really, that we once were ourselves, which the public doesn't understand either, called the caregiver.
As the two sides of the situation, there's the patient, which is the critical part. But another part that gets totally lost and has been lost is the caregiver who's has a normal life, but then has to put things more or less on hold and is caught up with a patient who's not healthy. You just don't be put on a transplant list and nothing happens. You're constantly taking heavy medications to sustain your life.
And people go through boot swings and things like that. And so somebody has to be with them basically 24-7 to make it possible to be on the transplant list as well too. We like to refer to ourselves as caretaker advocates. I don't even know if that's a topic.
No, that sounds exactly what y'all are doing. So I wanted to ask, so there's all these burdens almost and all these difficulties when you are listed for a transplant. So how did y'all focus in on housing for transplant recipients and their families? Well, we just focused on it because we almost had to do this ourselves.
And if we had to go to Birmingham and Jeff and I maybe would have lived in an apartment, I would have had to quit my job at the time. And we had a son in college at the time. So Bob would have stayed here. And it would have just been a financial burden that we would have sunk under.
We would have done it. There are actually caregivers that live in their cars because they cannot afford a place to stay and they have to be close to the hospital. So that's why we focused on that. Just to make my goal is just to make, I call them my caregivers as comfortable as possible and to make their journey as easy as possible because I've walked in their shoes and I know what it's like.
And they are, they have to be so strong at the hospital and they have to be strong around their families. And inside they're just falling apart. They're worried about everything possible. And I will tell you that when I greet them at our apartments and turn over the keys, but I always tell them as this.
I said, I've walked in your shoes. I know it's in your heart and I know it's in your head. But more importantly, I know what you're not saying. And I said, if you want to just let loose right now, I've got big shoulders and you just go ahead and get it off your shoulders.
And a lot of times it just ends up with me holding them in my arms and just letting them cry it out. That's how frustrated caregivers are. That's why my heart lies with the caregiver. Well, Mary and Bob, go ahead.
Well, no, I'm just going to simply just make a simple statement to it. We all look at the situation is called a transplant. But again, it's very, very complex. The surgery itself is some of the most critical surgery performed on Earth.
And yes, that's critical in the eyes of what we're doing. Really true, the other side of it is there's family type to everything happening too. And they get the medical industry has, regretfully, at large overlooked that side of that completely. Yeah.
And I was going to say, Mary and Bob, I applaud you both for your foresight. Obviously, you guys went through it. You lived through it. You saw the challenges on a daily basis and how that impacted you guys as a family.
And Bob, you had mentioned it goes somewhat unnoticed. That family, the challenges, especially with the housing. And I can assure you, you know, by that Dr. Smith calling you back by that nurse being so excited.
And that Dr. Smith calling you guys back within 20 minutes, clearly they knew that something in the medical, on the medical side, you may not get that feeling from a day to day interaction with the medical staff of the transplant units. But they know that how much of a challenge it is to families. And that it's not just that patient, that transplant patient that they're trying to work with, it's the families that have to burden so much of the stress and responsibility to keep things positive and to keep things moving in the right direction.
And I guess I just want to say I applaud both of you guys for taking that on. And then clearly it didn't go unnoticed by it was something that they jumped on, obviously, very quickly. Well, I'll tell you where that this topic leads to is the social workers at the hospitals. And that's my contact at the hospital.
My patients call them their angels on earth. They are the ones that take care of that, the personal side of the, rather than the medical side of it, the social worker is early in on the personal side of it. And just what you said is true, because a lot of that care comes from the social workers. I can't send their praises enough for what I see them do.
It's not an easy job. You're dealing with people that are just in crisis and they're just experts at it. Like all kudos to social workers at the hospitals. Oh, I love that.
And listening to you guys, it's like the more you expand. I know you're going to your, your seventh. It sounds like the more you want to do it, the more you need to do it. Do you guys become part of these families that come and stay in your apartment?
Do you keep up with them? Tell us. I get way too close to my family. Oh, it's part of the job that I did not really anticipate, how emotional it would be.
I get very close to the caregivers. I love my caregivers. Yes. I go down this road and we're on the road now more so than ever before.
This is if we can't stop for real. And there's no there's so much yet undone that it's possible to be done. And that's where we're pushing. And things are now surfacing on a very, very large or positive mode.
And I like the other side of the whole thing is too is we can't stop. We've been fortunate to watch people survive surgeries and we've been unfortunate. Even watch or not watch, but to have a small child age of six months not pull through. So transplants cover all ages.
Most people assume it's adults, but the children are caught up in this world too. There's much collection. Our patients have ranged from newborns to 72 year old gentlemen. And we've had 80 families live in our apartments over the last three years.
And a really good statistic is it's sad, but it's true. We've only lost five, which is pretty good odds for the story of a transplant. And when you ask me if I get close to them, yes, I do. My son and I have gone to all five of those funerals just to show our support for that.
You know, for the one that didn't end well because we've also lived that experience. Yeah. Your mission is such a valuable one in the transplant world. I certainly hope that a gained traction, not only there at Emory and Piedmont and children in Atlanta, but throughout the country.
I know of one or two that I've heard of similar to the transplant house that you guys started, but I would love to see that gained traction throughout pretty much in each state. It would be great. Do you guys have any future plans with that? Well, just yesterday we had a meeting that was very important with Emory Hospital and University with the transplant doctors and administrative people.
And it looks like it's very hopeful that we will have a transplant house built on Emory's campus. We have an architect in Atlanta who has designed a house for us at no cost to us, by the way, which is unbelievable. And it will contain 22 bedroom apartments plus common areas. And we're very unique, like in the country.
I don't know that there's even another one like what we are planning to do. And interestingly enough, during this COVID-19 situation, we have become the only option in Atlanta for transplant patients. Because all other hospitality houses are built on a model of like the patient has a room, but everything else is communal. So they had just closed them down.
So we are the only ones right now receiving transplant patients. So we are 100% occupancy at all times. And now we're going forward with this bigger plan with this wonderful transplant house. And hopefully within the next, I'm going to say two or three years, I hope maybe I'm too hopeful about that, but that we'll have that built and it will be somewhere near the Emory campus.
So that's exciting news for us. It just happened yesterday. Is there an average stay for families or just all over the border? The average stay is two months.
We have had as short as two weeks and we've had as long as seven months. So it's just you just never know. I have an expression for transplants that probably isn't the most romantic idea. I call transplants a crapshoot.
You just never know. You don't know when you're going to get the donor. You don't know when you're going to get the surgery, how the recovery's going to go. It's all just a big mystery from beginning to end.
And you guys ever sent over dinner and just say, huh, that was just a little idea, wild hair that came to me one night. And here we are. Like when you sit back, what do you think about? Well, I can answer that one pretty soon.
We're having a conversation with your group. Yeah. And that's a good question. It's a definite yes.
We laugh at ourselves. And we started this. We literally jumped off of a cliff, not knowing where we would land. But we just kind of pride ourselves that we took the leap.
Yeah. And I think it's where we are now. And I think it's absolutely incredible that through your family's tragedy, your son did not receive the gift that he needed. And you're still willing and motivated to help others in similar situations.
I think it's incredible. I really do. Yeah. I should mention to you that some years ago when Jeff was still with us, it even through his crisis part, I had the opportunity to actually kind of work with the gentleman and having lunch with him one afternoon, he expressed to me that his name was Tommy Smith, born and raised in Duluth, Georgia.
But he had to go through a kidney transplant and the circumstances that brought that on were beyond belief. But he ran into a situation when he had to do this many years ago, there was no information even available in the state of Georgia that he could gleam to tell him how to get around and do what he had to do or take care of himself. And he fortunately birthed another foundation here called the Georgia transplant foundation. And he has since passed on because of his injuries too.
But because of the down and our son Jeff, we've got that window that look into what the world is really all about. And that's never gotten out of our heads, quite frankly. And it's all we can do to try to keep things together here for the transplant world. There's a reason why we really are motivated.
We're sons lost and other fortunate people that have been on our path that have helped us through the journey where we're going and we're still going down that road. So we know that you want to do more. We know that people are donating time, talents, funds. So if people want to follow your journey, they want to help.
They want to be a part of it. Where do we send them? What's your ask? We have a webpage.
It's the JC Evans Foundation.org. And if people want to make donations, they can do it through that with a credit card. We have a Facebook that's Jeffrey Campbell Evans Foundation is the name of the and also you can look at my personal on Mary Evans and I keep that updated. That's really all that we have for people to look at, but I keep it up to date pretty well.
So lots of folks have been lending their time and talents and there is a firm out there that's doing work for free? Yes, there is. It's called Richmond Honen. They are a company that designs and builds medical buildings.
And one of their architects, his name is Kevin Glade, has designed our future transplant house for us at no cost to us. Mary, I heard you describe yourself as a caretaker advocate, which I think is a beautiful way of putting it. We hear from a lot of recipient families that it is a very difficult time to be a caretaker when you have a loved one waiting for a life saving transplant. So my question for you is, what advice do you have for those family members who are dealing with those challenges and the stress of it all?
Oh, I think the only advice I have is that you just have to learn to go with the flow. I know that's hard to do, but you never know from day to day what's going to happen with your loved one and especially if you're waiting for a donor, it's just a very stressful time because you have no idea when this is going to happen. And you just have to learn to go with the flow and be very patient with your care, your patient, because they're obviously not feeling good in the first place. And then if they're on medications to help them just keep them alive while they're during this waiting period, that can cause a lot of problems for them as well.
They can really almost turn into a different kind of person, but you just have to be patient and understand that they're the ones that are hurting and you're just there to take care of them. Just get into that mind frame. That's your job. That would be my advice.
Well, Bob and Mary, we appreciate the visit. We certainly enjoyed learning more about Jeffrey Campbell Evans. Check out the foundation, JC Evans Foundation.org. I think we all agree that your leap has definitely paid off for lots of families who are waiting on that second chance.
So thank you for joining us and thank you for what you do. Well, thank you really. We appreciate it. Thank you very much.
On the gifted life, we'd like to take a moment for mental health. Yeah, Sarah, see this mental health moment. You'll be talking about your most authentic self. Give me before we get into that.
What's an example of authenticity versus in authenticity? Yeah, definitely. So I think right now, there's a lot of social pressure, especially with social media, and there's a lot of really good social movements that are happening right now. So it can be very easy to get caught up in things and not be who you are.
So there's pressures to maybe conform to a way of thinking or to a value, and that'll lead you to not being true to yourself, which causes internal discomfort. You know, when you say something that's not true to who you are, you feel that almost ick in your stomach, right? You feel this isn't true. I'm lying in a way about who I am and what I believe in.
So what I wanted to share with you is some tips on how to not do that and to be more authentic and to know that it's okay to be who you are and to believe what you believe. So we're all going through a pretty difficult time right now, collectively on our planet. Right. So it's a pretty difficult time.
So, you know, I think there's a lot of comfort and living authentically. If you can be your true self, if you can know your true self, it pulls away a lot of stress and especially social stress and social pressures. So I want to give some tips on how we can be a little bit more authentically ourselves. All right.
All right. Let's hear it. So not only are we going through difficult time now, but in general, we have all of us, our own commitments, our own conditions, our own attachments that make it difficult to be truly yourself. There's a lot that we have to give of ourselves to others, especially if you have a family, if you have a job, a career.
So how can we, in all of these difficult times with all of our difficult attachments and everything we have to do, how do we be ourselves and find comfort in ourselves? So our first tip is that I want you to remember that no one knows you better than you. I know that's on simple, but it's really actually a big comfort to know that you know yourself better than anyone and to just reflect on yourself. My wife would argue that's funny, but I agree with you.
It's true that when you're in a partnership, you do know your partner is really, really well, but truly no one's inside your mind but yourself. So you really do know yourself the best. So know that and find comfort that you have your own back and away. Always have home back in every situation.
That's good. You should. You have to look out for number one sometimes. The next little tip I want to give is to not let other people's expectations limit yourself or stress you out or stress you out because we do have a lot of expectations and you know from your boss, from your family members, from your kids, I'm sure they expect a lot out of you.
So know that you can still have all those expectations met and still be your true self. Next I want to say to take a little bit of risk. Don't be afraid to speak up for yourself. If you feel like something is wrong or something doesn't feel right to you or something is compromising who you are, don't feel afraid to speak up.
Again, no one can advocate for yourself better than you can and only you are going to know what's right for you. And last but not least, of course, we always talk about having a purpose. I'm not one of those people who believes your job is your identity, but I do believe purpose brings you a lot of comfort and a lot of drive. And if you can match your purpose to match who you are and what you believe in, it can bring you so much comfort and just meaning in your life.
I mean, I think we all know that, especially with what we do for a living, our purpose is clear. Our purpose in my, for me at least over my 18 years, the purpose that we have, that's such a job driven purpose has shaped me in a lot of ways. I know it doesn't, it doesn't identify me, but it's shaped me to focus on being more selfless as we say, selfless, authentic and passionate person in other realms and other avenues, other aspects of my life, instead of just focusing on those things when I'm at LOBA. Right.
And being selfless, that is one of your ways of being authentic because that's who you are. And so if you find a purpose that matches some of your values and your inherent personality traits, it's just going to bring you a lot of joy and meaning. And then especially during COVID and a lot of transplant patients that we work with, there's higher anxiety as you step outside of your comfort zone, your home. So that's kind of been a shift for me and just my area and having these conversations and talking.
I think we all feel the same way, you know, especially those with kids or those who are immunocompromised and those kinds of things. So those conversations and communicating that's been kind of helping me and we're able to take more time to do that during these times. So it's a work in progress though. No, absolutely.
And you're right. When you're out of your comfort zone, you can lose yourself really quickly. But if you just remember to know yourself, be yourself and to continue to reflect on who you are and what your values are, it'll make it a little bit easier to be uncomfortable, especially during these times. Be yourself in every moment.
Yeah, that's right. All right. Great tips there. Maybe you have a topic you'd like us to cover info at thegiftedlife.org.
We'd love to hear from you. We have reached our question and answer segment on this episode of The Gifted Life. All right, guys, here's our question. How many people die waiting for an organ transplant?
I get that question a lot out in the community pre-COVID. We'd love to get back out into the community. But on average, about 20 people die per day. And when you're in a classroom that's filled with 30 kids or 26 kids and you give them those numbers, you get the wide eyeballs looking back at you like, I didn't understand that or realize that.
There are a lot of variables that go into that. And we try as much as we can from a policy standpoint to maximize those opportunities for those that are the sickest. In other words, the sickest patient, even though they might not be the closest geographically, they get that opportunity for that life-saving organ. But even with that, it is such a rare opportunity, which is why it's so important, especially here at the Give the Life podcast, that we get the word out.
We spread the education so that no opportunities are missed. So that this number obviously goes down to ultimately what we like to see is zero. Right, because our main mission is to make life happen. Unfortunately, there are more people who are waiting than those who can give the gift of life.
So that's why our mission is so important and that's why our decisions for organ donation are so important. So that was a great question. If you have another question for us, you want answered on the podcast, you can give us a call at 504-648-3477. And we might even play your message on the podcast.
In every episode of the Give the Life, we honor a hero. Today's hero is Dylan Weber. And we learn about Dylan from his family. Dylan had a tough exterior, but a soft heart of gold.
He cared more than anyone I know, but get it hidden at times. He was never one to forget who he loved and who loved him. He cherished his daughter and he lived his life his way. He is my hero now and forever.
When we made the decision to donate his organs, they came back and said that he had already signed up to be a donor. That was his hidden softness and love for everyone. I know how much love he gave and how caring he was, now the world and his recipients know. And now we pause and say thank you to Dylan for the gift of life.
And that is episode 143 of the gift of life. Enjoyed visiting with Bob and Mary, right? No doubt. Very special thanks to Bob and Mary for sharing Jeff with us and also for starting the Jeffrey Campbell Evans Foundation.
There's a huge need that there is in that area and for them to see that and have the foresight. And hopefully others can be inspired by what they're hearing today and maybe start focusing on that area as well. Yes, we love to learn about Jeff and his passion for cooking. We're sure there's so many families out there who are cooking in those apartments right now and just trying to do the best they can to bring some joy in.
And I can just feel the love they have for him and these families. That's my part. That's what inspires me. Their goal is to have one transplant house in every state across the country.
So as they grow, we definitely want to have them back here on the gift of life podcast. Our ask for you is to spread the word, help us spread the information here on the gift of life podcast. You can find us at thegiftedlife.org and maybe you weren't inspired to register as an organ tissue and eye donor. You can do that anytime at register me dot org.
You can listen to any of our episodes on our website or anywhere you listen to your podcasts, whether it's Apple, Google, Spotify or iHeartRadio. If you do listen on Apple podcast, please leave us a five star rating and subscribe so that others can help find our podcasts. And if you're on social media, please like our page on Facebook, the Gifted Life Podcast and follow us on both Twitter and Instagram at Gifted LifePod. Now go out and do something you would normally do to help us make life happen.
We're one big team. This is a production of LOBA, or the Louisiana Organ Procurement Agency. The Gifted Life is hosted by Lori Steele, Joey Buudrow and Sarah Blakemore, our executive producer is Kirsten Hines, producer is Shalom Caraway. Intern is Rebecca Rannam and we are recorded, engineered and mixed in our Covington, Louisiana studio by Troy Perez.