Hello and welcome to the Gifted Life Podcast where we have conversations about organ, tissue, eye donation and transplantation. You can always find us at thegiftedlife.org. I'm Lori Steele. Hi, I'm Joey Boudreau.
I'm Sarah Blake Moore. Coming up on this episode of the Gifted Life, Hope. Hope. And how one organization is offering hope and support through connecting pediatric transplant caregivers.
And we're going to talk about how to fight loneliness by using wisdom. Alright, you guys hang tight. Here we go. Here on the Gifted Life Podcast, we are excited to introduce you to our two new friends, Joseph Hillenburg, K Joseph, and Melissa McQueen.
How are you? Good. We are great. We are smiling.
We have lots to learn from you guys. We both know that you guys are transplant families in separate states and so we're excited to hear your stories. And then you started on a new venture to help other caregivers of pediatric transplants recipients. And we just think that's all incredible.
But on the podcast, we like to dig a little further to talk about your particular journeys and how you get there. So Melissa, I don't know if you want to kick us off and tell us about your son, the heart transplant and your journey. Certainly. I'd be happy to start off.
Our journey kind of started in 2008 when we were expecting our third child, Dylan. He was supposed to be perfect and normal and we had a great pregnancy. The day he was born, he came out in a dramatic fashion. We discovered that he was born with cardiomyopathy.
He had enlarged hearts and he was immediately light-flited over to Phoenix Children's Hospital. My husband followed him there and I came as soon as I can, could afterwards. He was on ventilator for about a month and they wanted to transplant him right away. But we're afraid that he would not make it enough light because there was no transplant center in our area at the time.
They were able to get him a little bit better on meds and we went home on medical therapies after a while and then we did this kind of shuffle in and out of the hospital whenever he would get worse and better and worse and better. And finally, about six months or like you, you got to go. It's time for him to be listed. So I had done enough research by that time.
I went to Children's Medical Center in Dallas and they did a transplant evaluation and welcomed us into their family there. Two months later on January 13th, he got his hero heart and we were just so grateful. He was actually planned to get the Berlin Heart the day that we got the call, but we got the call instead. And we were just grateful that he had that second chance of life and that's kind of what kicked off my journey.
Wow. Okay. As a mom following your story and whoa, that's a lot to take it. A lot of like to take it.
But I like how you use your story to help others. And Joseph, you're doing the same. Where are you, Joseph? And tell us your story.
So I'm in. Suburban Chicago, basically the Western suburbs, Libertyville and our story is very similar to Melissa's and one of the things you learn in PDF to transplant especially is that really very few stories of the same, but our story is very similar. Same diagnosis. We have two older kids that I would quote unquote healthy.
I use quotes there because you know what kid is normal and healthy. There's always something but relative to diabetic cardiomyopathy and needing to transplant everything is, everybody else is in pretty good sense. So he was done with kind of normal pregnancy and we had expectations that he would not have any major complications for the first month went pretty well. He was a little lethargic and that was should have been an early symptom that we should have noticed, but we didn't pick up on it because we didn't know what to look for.
He just got sleepy, right? And so then it is about one month. Marquis, so I can deteriorate pretty rapidly within the course of one day and my work took him in for a sick visit, our pediatrician. The pediatrician took a few looks out of a notice.
Everything was off and fortunately, punted right away to the local emergency room in Liverpool and took the emergency room and asked me to pretty quickly. I haven't done that. I got a cardiogram notice to his heart rate about twice the size of a million. I'm not going to do that much.
His level was also larger and he was in a cardiogenic shot. And so he was also transported by a cardiogram, sorry, to what was then children's memorial hospital, now they're children's hospital. And because for some reason, he wouldn't probably have survived the flight. Not all hard kids or kids of other organs deteriorate so quickly.
It's also systematic shut down is not so quick in the case of what we saw was pretty noticeable. And so then he was having, you know, we noticed that he was having some of the lexivives and that's what kind of drove us in. So children's memorial got a handle on things pretty quickly within about within a few hours of having been brought in, made in patients. He was, he got him kind of under control and that doesn't mean he was anything resolved.
He was able to make it through a day. And so that became a, each day was his own journey. We were just waiting for one day of the ecstasy, what would happen. And then the transplant team kind of broke to us gently the possibility of transplant.
They probably knew we were headed. This is a very experienced team very involved in the community. And, but they've also seen parents who probably kind of mentally shut down. And that's to be part of what we had trans-law families are trying to help other parents with.
But anyway, so they then mentioned a couple days later that you would be, need to be listed for transplant. And so after basically after three days he was listed in the physical holidays. So there's no lone near place that pediatric ward during Christmas time, obviously right now, for a lot of reasons. So fortunately we had been told to expect a three to six month wait for her.
In our particular region, and this is various from Reed into region and city city. But fortunately we didn't 19, usually almost 19 days and we received the offer. Our taking care of our two daughters and my wife was Stacy, who was also reacting in the community. She was with him and I, she got our cardiologist walking in, gave her the word that we got to call.
And she called me and all of a sudden it was like a scramble to find out figure out what to do with our kids. And I know I'm telling a little bit more than what most have told you. Her story has probably got similar track. And so we basically made sure that the next couple days somebody could watch the other kids.
And then which is a big challenge for parents that are in this situation. Even more so with COVID, I just want to stress that COVID has made this a very interesting problem. But we were trying to find someone to watch our kids and we got the zone in struggle. So then we had an interesting conversation with my oldest daughter that morning that we told them what was happening.
They were only three and four. They kind of kind of understood what was happening. And they said, Daddy, where did the new heart come from? And I was like, what's your breakfast?
And I'm over right now conversation with a three and four year old yet. And fortunately, the child life specialist at the hospital had ways to break that to the siblings about how that works. The books and other sorts of medication materials. So he had a pretty routine transplant.
Not every transplant is routine. Kids do, I think, better than adults. That's, I just think I'll look at the study that's pretty clear that because of their immune system and their ability to bounce back and also come other things, they do really well. That's crucial that kids get transmitted as early as possible when they're undergoing severe issues because of organ failure.
And that's because they need that capacity to grow. And so having a healthy heart, healthy liver, healthy kidneys will allow them to resume a normal life and do things like where my son is, he just took one a couple times a week and was a son as a wrestler. And I think as a state champion or something, what's the one in my life? He's fit in state.
He was. He was wrestling in state. OK, all right. Yeah, so it's a bit of a close enough.
But I'm leading a relatively normal life and not having what they call with the box called failure to thrive. It's important for them because it's as quick as possible. And so then his recovery was pretty normal after that. He had physical therapy and occupational therapy after that.
And then that's pretty much more into the nine year old during the whole week. You can choose to be fast and free things and you haven't been able to hear it. But at least being a nine year old. Normal.
Yeah. That's our story in a nutshell. That's amazing. It really is.
You know, but it has to be scary. You know, hearing you, Joseph, talk about it in such detail and clearly you guys did receive a fair amount, at least, of support through it and and understanding. I'm curious, Melissa, you know, I know he said you guys have similar story in that. What did you know about transplant at the time that you were told that Dylan would need a transplant?
And how scary was that? Oh, my gosh, I'm so glad you asked that question. It's quite a shock. So when I first, you know, walked in the room, you know, after he was, you know, on the bench and I had a transplant coordinator walk in who is now very close friend of the family and it's like a punch to the gut.
You know, you're in there. You're child sick. You've never been in any kind of situation like this before, most likely. And they come in and it's straight to transplant.
It's not. We can do this other surgery or we can do this other thing. It's straight to transplant. You're like, whoa, how did we get here?
So my knowledge to this was nil coming up to this point and I was scrambling. Like Joseph, we both have background information technology and we have a, you know, a level learning. So I immediately just delved into learning as much as I possibly could about what was going on, his condition, what possible outcomes were, any kind of alternative treatments that were possibly out there. And we finally were after many months of research came to the same conclusion.
So yeah, this is the only way this is the best way for him. I want to add in, you know, those supports are so important. I know you'd just asked about that as well. And I'm going to echo what Joseph said.
You kind of need that community at a time because you feel really isolated and alone. And we had to travel for care. So we were in that unique situation where we went out of state, although I did have family in the Dallas area where we were. My stepmother came up from Corpus to come and help us because I had two other kids.
I had three kids, three and under the one with my youngest in the hospital. So crazy times, right? And I know just those kids are the same fan of parts. And we often like to call my stepmom as my elder, our fairy, stepmother, just came up after retirement and she helped out with the two kids.
I could stay in the hospital all day and then come back to the other two kids at night. So you always kind of feel like you're failing someone. But as a psychologist there sold us and she was just, thank God for her. She helped us so much.
She said, you know, you're doing the best you can and you kids know you're there for them. And that's what really matters that you're there for your kids and the love is shown and that you have that community support, lean on anyone that will let you lean on them. So with that being said, you know, I hear a lot of there's so many feelings involved when a child becomes sick. There's guilt, there's stress, there's fear.
So tell us about transplant families and how that was created and what is y'all's mission? Oh, certainly. So transplant families kind of came out as a side project after Dylan was got his heart and his gift of life. We came home after three months of being in the Dallas area.
I was supposed to go back to work, but as many transplant parents know, that's quite impossible with them, any clinic appointments and therapy visits, post transplant isn't quite the cure. It's just trading in one set of issues for another short term and that often becomes all consuming and there's nothing to be shameful in that. It's just the way it is. So my hats off to all the new moms and dads that are going through this right now and just know however you're keeping your head above water.
It is OK. Post transplant, I started a website because that's what I know to do is programming code. So and after a while, that was kind of like my way of keeping my sanity amidst all this and kind of keeping that tie back to what I found normal. It evolves and I ended up going to a lot of support groups and talking to a lot of other parents and I found that they agreed and we said, hey, let's make this official.
We made it a 501 and we decided to make this a nonprofit that was out there that supported families in our situation. We found that there were a lot of organizations that supported diagnosis that led to transplant, but nothing for post transplant because we had that tag of being cured, which wasn't quite the case. So we kind of take a different approach. It's part support, part celebration because we have so much to be thankful for.
Our big push is often with education and advocacy. So we join a lot of quality improvement groups to help, you know, prove some of the documents there sending out to new families and help out in their efforts as well. It's a really great community. If you ever had something you're getting to be sick of and, you know, be cured of or so to speak, quote unquote, transplant staff made a community to be in because it's such a welcoming, warm, grateful group.
So we came to this life by accident, but I'm glad we're here now and I'm hoping that we can welcome other parents into this, um, our group and help them find answers in us very frame time. I would have to put most of that and I mentioned, you know, there's a lot of, there are a lot of trans-Americans out there. There's, um, we almost 40,000 people per year that receive a transplant or I should say 40,000 trans-Americans are not the same number. There has to be a lot of rather large adult communities.
And that's the key thing is that there really is no cohesive community for children, for parents. And there might be some for individual organs that mostly as most of us had addressed the pre-transplant journey, but not so much for post-transplant support. And there's some on the regional level, but that's really what we're trying to do is to address post-transplant across all organ types, including stem cell and cartesian and other sort of similar issues, whether you have immunosuppressants involved. But in addition to what Melissa said about advocacy and support, we've actually sort of grashed a little bit into doing interpossimaking.
We're privileged to have several people that are either the heads of some of these more regional support groups and support organizations or are on the board of OPTN units, like I am a board and mostly is entering its own or on other similar organizations. And that's what we just try to advocate for parents when an issue that pertains to pediatric transplants, such as pediatric priority and liver transplant or something like that, and just fight for our parents. And in addition to just making them aware of the issues that may be faced in policy decisions that are really the pediatric communities have been shielded from, in a sense, and we want them to know what these things are happening in the general transplant world effect as well. And guys, to kind of follow what they're talking about, it's transplantfamilies.org.
And I love this. And we are hoping that any stories we can find strength, courage and resolve. So sharing your stories, that connectivity, what, what would you consider successes when it comes to the transplant family's movement that you guys created? And what are you hoping to create with it?
That's a great question. We're hoping to give families peace, peace in knowledge, peace and connections, peace and supports. I want to echo, kind of just a side about, you know, our focus is pediatric. So it's definitely for the caregivers and parents of those, you know, are 18 and younger transplant recipients.
And we want a special place for them because it's very different world that they grow up in. Kudos and hats off to the adults, support groups that are out there and that are absolutely wonderful. But we found that there were some pieces that adults don't have to go through. They don't have to go to school and explain kind of their situation and say, hey, I need these accommodations because my kids are immune suppressed and they might not be able to sit next to someone who, you know, my measles or chicken pups or anything like that, or they might need certain accommodations for their medications or activities.
So we had kind of special situations that we hope to help parents with. And, you know, parent-to-parent groups are fantastic because we can all kind of share our experiences. It's been a very robust and supportive group. And we've seen other local groups pop up and, you know, we love to support them too.
So if you're a local support group at a hospital and you want to connect with us, we definitely welcome that as well because we like to share with you. And hopefully you can share with us again, very supportive. It's amazing. You know, you said that Melissa with the accommodating part, you know, we don't even think about that.
And I can tell you, so I'm a clinician. And of course I work on the recovery side, but it's not something you think about on a regular basis after you're working with a child that is immunocompromised and that you've got to watch, you know, who's with that child, who's, you know, the friends and all that. Those are things you know, you say it and it kind of resonates because, you know, I wouldn't have normally thought, you know, well, you know, how much support is needed. Obviously you need to understand, you know, what medicines that he's got to take or you've got to give on a certain regimen and you get in some of that from the physician.
But all of these extraneous things, you know, you just as a general public and I count myself in that, you know, in a way, because I'm not on the transplant side, we just don't think about this really. Yeah, I think it's amazing that you guys had the foresight to create this and and support so many people to build on that. You know, it's so much information giving, but it's also, it can be so isolating. I'm sure to have a child who's sick and, you know, you probably feel like you're alone in this world and to have that community and that connection and it's probably brought so much light to people and there's so much caregiver fatigue that we know about.
And I'm sure there's families who you speak with, who you can share in that with and reduce guilt. Even. No, I agree. I'm sorry to me to cut you off.
There are caregivers there exhausted. And, you know, especially when you have babies like Ben and Dylan that are, it just happened to birthing this all their milestones. So that's a whole other thing is coming into early intervention programs to make sure that he doesn't never learn how to eat properly. You know, he was, they were afraid he would die if he nursed it all.
So we had to teach him how to eat all over again. It took three years on a G2. Those are the things that, you know, that aren't often talked about, but that families silently suffer through. Joseph, I know you want to make a point.
I'll let you jump into. Oh, no, I was just going to say that, you know, especially with as a community, we do that information sharing and it started off, there's actually a Facebook group for pediatric heart transplant parents that was formed after both Parkinson's and trans plus and it's got 2500 people in the bank, something like that. It's a large number of parents. And it's, I think it's the largest pediatric transplant Facebook page out there.
But, you know, we, we, in conjunction with family, the group has sort of been able to be a resource for each other during these trying times. And you know what I'm talking about COVID. And so we share strategies for and frustrations with dealing with how do we deal with going on public and if we have to and dealing with masking situations or other sorts of COVID precautions. And so we kind of are able to vent to each other and it has sort of a sense of comfort and agility.
And that's what that support is all about. Conversely, when COVID hit, everybody was talking about what you need to mask up, you need to handle all those sorts of things. These are all second major to a trans-parent parent. We already knew the drill and actually, so I've heard more than once.
From pediatric practitioners that they really weren't as worried about recipient parents and family's adjusting to the times because we already, it was our normal. Every else is normal, it was our normal in that sense. So anyway, yeah, I love working with our volunteers and we have some parents of pediatric transplant recipients. And I said, we should just slap a PhD after your name because you guys know so much, but they do act as mentors to others who are joining our teams.
And I just love to watch that because it's so easy and they're so comfortable talking to each other to know that there is support. There is knowledge. There is a friend who knows and that you guys have had the forethought to let me help others. I just think that's fantastic.
So if you're listening out there, you need a friend, you just want to ask a question that, you know, we say, can I ask a stupid question? You know, this is a safe place to be able to do that. Now, earlier, you guys mentioned a kids conference, which was coming up, a pediatric transplant conference. It's virtual this year.
It's on April 22nd. If you want more, all you have to do is go to transplantfamilies.org. Joseph and Melissa, thanks for doing this. Thanks for sharing it with us here on the podcast.
And we hope to have you back again. Thank you for having us. Thank you very much. Here on the Get to Life podcast, we take a moment for mental health.
I'm always looking forward to hearing what Sarah's got to talk about. What is it? All right, guys. So today we're going to talk about loneliness, which a lot of, you know, families and people are experiencing right now in our country, but also how to fight it and how to combat it.
And there was some recent research done that showed that people who show higher signs of wisdom. So let me be clear, not intelligence, but wisdom have less show less signs and symptoms for loneliness. So we're going to talk about kind of how do we increase our wisdom? How do we make ourselves more wise, which can be difficult because a lot of times, wisdom comes from age and experience.
But that doesn't mean that we can't do it at all stages of our lives. Work on how we view the world and broaden our perspective. Ready to learn. Let's do this.
Okay. So the first thing to increase your wisdom and this will help you fight loneliness is don't define yourself in one moment. What I mean by that is if you're feeling lonely, don't define yourself in that moment as I'm always lonely. I'm a lonely person chronically.
You're not. And those down times I know can feel like they last forever and it's never ending and you can feel hopeless, but it doesn't define you and you can find little moments of connection that will make you feel less lonely. So that's the first one. The next one is find ways to connect in small ways, whether that's shooting someone a text or listening to a podcast about people who are experiencing something similar to you.
We know that connection really is like the number one antidote cure for loneliness. I was thinking, I noticed on social media, especially during the pandemic, a lot more of my friends were being creative and then like, I did this, you don't know how I did it. And then they would do videos or their magnificent plates of food that they had just baked or cooked and putting that out there. And I said, oh, that's different because you wouldn't expect that content from them.
But I guess it was how they were coping and I enjoyed the, you know, yes, yeah. Yeah. And you know, there's so much content out there. Like you're saying that can just make you feel connected or wow, that person's doing it.
I want to try that too. And then you feel less lonely. It just, it is connection really just decreases your loneliness. So connect in small ways.
You can even try the 1980s style of connection and make a phone call to someone. What? Mail a letter. Do that off in these days.
It's text or Facebook or social media. But some of the little moms in our groups said, you know, everything is technological these days. And so she said, I want to teach my kid how to mail someone a letter. And so we did like little pin pals during the pandemic and camp, like my little boy was so excited to do that.
And I was filled with joy watching that. And it was just like a little, little active kind of something different. Little small acts of kind of small ways to connect those little things where you are just engaged with something or someone else really, really help. And what it does is it, which is my next point, which is to look at the bigger picture.
You aren't alone. Remind yourself. And that's how we increase our wisdom is when you look at the bigger picture of your life and your family and your friends and what your purpose is and who you connect with, you will feel less lonely. So when you're in those dark moments of loneliness, when you feel hopeless, like you're never going to get out of it, connect to someone, look at yourself in the grand scheme of things, the big picture, find something that brings you joy and you will feel less lonely.
I think it's always important. Whatever. And we talk about loneliness, but it's a lot of things, feelings that you might have that the bigger picture is always the better way to approach things. We need because in the moment, it's easy to say always, you know, I never feel this way always just because you're in that moment.
And it's so important to just take a step back and think about the bigger picture and, you know, in this situation, how many connections that you have, how many connections that you can have today. If you go ahead, like you said, put something on social media or connect with a friend, you know, it's always that opportunity out there. Just you have to open your eyes to it. Yeah.
And I think, you know, for like you're saying, when you are in those dark moments, it does feel like it's going to last forever. But that's why reaching out to somebody. And also remembering that when you're not in a dark moment, maybe telling someone, reminding them, Hey, let's look at the big picture of the grand scheme of your life. How many people you have that love you, you know, be that reminder for someone else because you might need that when it's your turn.
Right. So let's just all look out for each other. And it's a lonely time right now, but we can also do better and we can increase our wisdom and our bigger perspective to reduce our loneliness. Drive to be a better human.
Yes. I try every day. Try, try, try, try again. All right.
So let's just go ahead and recover. Email us info at thegiptidlife.org. And our question and answer segment today, Joe, I'm going to kick this over to you. Can transplanted organs grow with the person considering what we're talking about today, pediatric transplants that sometimes comes up?
And so just a little bit of clarity on that. Yes. So that's actually a question that I've gotten often, you know, over my years at LOPA and the answer is yes. In most situations, you know, as we all know, we've talked about it before, livers regenerate.
So, you know, we've also talked about splitting livers and I'll kind of spread it out over the couple of few organ types, but we've talked about splitting livers and oftentimes a small segment will go into a child or a small adult. And that grows actually within about six weeks or so to the size that's needed. Which is fascinating. So, and I said before, you know, God knew what he was doing with a bunch of cajens and alcohol, understanding that we would have to regenerate.
So that's from from the liver standpoint, the hearts also grow back. And the kidneys grow back a certain amount, but mainly adapt is how my surgeon friends put it. Which is incredible. Like to say better, it has to.
But how does that work? And so in a previous episode, we talked about sometime back, we talked about a pediatric that we recover tiny kidneys from from like a 10 pound baby, double kidneys and transplant them into an adult. We've done that from here. A guy from California, UC Davis was kind of world renowned for doing it.
He's they're still doing it. So so my point is we're able to do that. And those little bit of kidneys are functioning in 60 year old adults. So so they can adapt, you know, even though they don't grow completely to fit the same size as what the person's normal size would have been.
They adapt as though there's no difference. So it's amazing, you know, what your body can, even though it's a transplanted organ, you know, and it's from someone else, give from someone else, it'll still adapt and or change exactly the size it needs to be. And function needs to be so incredible. If you have a question for us, why don't you give us a call at 5046483477.
In every episode of the gifted life, we honor a hero, today's hero, Gavin Schillett. And we learn about Gavin from his mother. April of 2015 changed our lives forever. My son, one of my twins, Gavin, was rushed to the hospital after an accident at home.
After a week in the hospital, where every lifesaving measure was attempted, we had to say goodbye for now. He left behind a twin brother, a 16 year old sister and a three year old brother. He left behind countless family members, friends and a community of people who adored him. My baby made a huge impact in his 13 years of life.
He lived every day with such joy, passion and humbling love. He has forever missed. Gavin was an organ and a tissue donor. He was 13 years old when he became a hero.
His beautiful spirit and heart impacted so many while he shared this life on Earth. And with his passing, he gave others the opportunity to share in the joy of living. As his mother, I pray his recipients have had the opportunity to enjoy a second chance with a little less pain in this life. I know my baby boy would have really loved to know he was able to spare others hurt or pain.
At this time we pause and say, thank you to Gavin for the gift of life. And that will do it for the get to life podcast episode 159. Thanks for listening guys. And remember you can register as an organ and tissue and eye donor anytime, register me dot org.
And thanks also to Joseph and Melissa for sharing their stories and for helping support so many families of pediatric transplants. To learn more, go to transplantfamilies.org. Remember guys, the best place to find us, the gifted life is on our website, the giftedlife.org. You can listen there or anywhere you like to listen to your podcasts, whether it's Apple, Google, Spotify or iHeartRadio.
If you do listen on Apple, go ahead and give us a five star reading so that others can find the podcast. And if you're on social media, go ahead and like our page on Facebook, the gifted life podcast and follow us on both Twitter and Instagram at gifted life pod. Thanks for listening and hanging with us. Our goal is to spread donation information, your part of our team.
And we appreciate you for doing that. We hope that you go out and do something you would normally do to help us make life. Happen.