Hello and welcome to the Gifted Life Podcast where we have conversations about organ tissue and eye donation and transplantation. Thank you for listening. Tell your friends to find us at thegiftedlife.org. I'm Lori Steele.
I'm Joey Boudreau. I'm Sarah Blakemore. On this episode, we'll be talking to someone who knows all the common challenges associated with being a transplant patient. And we're going to talk about how to effectively pre-share child.
Ooh, all that more right here, the Gifted Life, you guys ready? Yum. Here we go. Here on the Gifted Life Podcast, we are so honored to introduce you to Mr.
John Hoffman. Hi, John. Hey, there. How's it going?
John is a two-time liver recipient. He's working on a memoir and he's helping others through this journey of donation and transplant ation. John, we just love your story and we know for you it started when you were just a tiny infant way back then. And so we have lots of questions for you.
But we know that you're married, you have three children, you have a new perspective. But for you being a transplant recipient, what does donation mean to you? Well, it's on the side of it. But it really means helping out your fellow human beings when you have something to give to do that, and to hopefully help someone like me continue to live healthy full lives.
And we love that you're here and you're wanting to pay it forward. And I do want you to take us back to when you were born. We do that many yesterday, guys. But 1981, and then I know that John has a blog for those of you who are interested, John's transplant journey.com.
One of the pictures was your mom, your dad, you as a tiny little boy. I love, love, love pictures. And as I was listening to you and reading your blogs, this whole picture was coming together. So if you could take us back to when this all started for you and your family.
Sure. So, Billy, aren't you treated? I don't know how much you know about it. But I was mistaken and it was genetic, but really it's a virus that attacks the wildeck to the liver.
So it's very, mostly an infant and they really still don't know what causes it. But after about four months after I was born, my parents were starting to notice that although I was eating, I wasn't really gaining weight. So they did the basics about their went to pediatricians, did all those basic tests and then they eventually referred me to a pediatric gastroenterologist who was Jeffrey Heinz in H-Y-E-M-S. And he did all those digestive tests and things like that.
And they finally, you know, it's one of those things here in the world. You know, it could be anything but at the worst case it's this and that's where it ended up being, which is Billy and Regent. So from about six months on, I was under the care of Dr. Knives and his team.
So from that point, you understand, of course, you're a baby but your family understood, Billy area, Trezia, you know, it's something bad. At what point did they then have to transition to the fact that if you didn't get a lifesaving liver, you weren't going to be able to live much longer? Yeah. Well, right from the onset, I mean, from the cases they had, they knew that eventually I would need a transplant and there was no real cure except for replacing the liver.
They had a few stop gaps. They did reports called CFI procedures, the KSAI, which is named after a Japanese surgeon, but that basically takes pieces of urine testins and tries to put them in there to kind of stop gap. But ultimately, the transplant is what I was going to need. I've actually talked to people who have had several of those for five procedures to say they're temporary.
But it became real, I'm sure for them very quick that without a transplant, I wasn't going to be able to grow up and live to an adult. And this was back in 1981 is when you were born. So you'll tell me different in the transplant world, right? Right.
I was going to mention that. So, you know, so this would have been, so your first transplant was in 1982? 83. So, you know, so to those out there who aren't familiar, obviously with the transplants transition throughout the years, that was pretty much at the beginning of the immunosuppressant time.
They had just developed them over the previous couple of years. So you were actually fortunate in that from a timing standpoint, had it been four or five years earlier that hadn't been anything that was FDA approved. And so you were one of the first to not only get the transplant, but to start on these immunosuppressant therapy. So one of the other things, you know, I saw kind of look back at your, you know, at your journey.
So Dr. Thomas Starzel was a transplant surgeon, right? So to those out there, he's he has been, you know, a pretty much a rock star in the industry for years when we learned up in the industry for 18 years. But throughout that timeframe, you learn when you go read about history, pretty much Dr.
Starzel's name was involved in one of the works, one of the papers. And it's because he was such, he was a pioneer. He had done the first delivery transplant and done, you know, kidney transplants and such much before everyone else. So it's a very interesting that you had him as your surgeon.
So if you can just tell me a little bit about, you know, your interactions with him. I mean, as a baby, you know, ironically, there's, there's a documentary out about him. It's called Burden Genius. And it's only being, it was only being screened in Pittsburgh.
This was about a year and a half ago. And my mom actually took a trip to Pittsburgh to see it, you know, and we got all sorts of insight as to what his life was like back then when he was working on the early transplantation process. And unfortunately, I never, never, you know, got to speak to him as a child or, you know, I was a baby, but my parents had very vivid interactions with him. He was, he was no, no nonsense.
You know, he came right in and, you know, one time he, you know, put his hand on my stomach and the lower goes that he said this child is in rejection. And that's all he had to do. You know, it's just amazing stuff. And he would come in with his wife sometimes from dinner and come in and check out of it and things like that.
He was extremely dedicated. So John, of course, you had that transplant as a baby and then, you know, and it allowed you to live some time, obviously with that life-saving transplant. So tell me about your later years when you were in high school and, you know, in Dionne. Sure.
As far as, as far as medically, I was, I did pretty well, you know, throughout grade school and into, into middle school. I started to have some issues where my, my liver numbers were kind of skyrocketed and they bring me in and, you know, put me on higher doses of big, you know, suppression and do biopsies and things like that. But, um, overall, and even when I was in there, I felt fine. You know, it was nothing that I felt.
It was more just, you know, what showed up in the blood work and they were being cautious. So all, all in all, I mean, I had a, you know, pretty normal childhood. I didn't, I didn't share with many people what had gone on it. You know, even my sorrows were very self-conscious about it.
I tried not to show it, you know, go swimming with a t-shirt, things like that. It wasn't until, you know, middle school and getting into high school that, that they really told us that, you know, something's not going the way it should be. One analogy, my, the surgeons at Children's Hospital, Pittsburgh, my second time around, when I went for my evaluation, they said, you know, they give it as a car firing on eight cylinders, yours is firing on probably four or five. So it was functioning, but definitely things were starting to decline.
I can't exactly explain it, but it seems like because of my size, I was so small because of the experimental surgery, it just seems like things were kind of breaking down and they were growing with me the way it should. And so that's what eventually happened. I developed cirrhosis, the scarring of the liver. So this is all when you are in middle school, high school.
Tell us how that felt emotionally to go through that process of your body starting to not function the way it should. Yeah. I mean, as I said, I mean, most of the time I didn't feel anything at all. So all of a sudden my life would be interrupted and I'd be in the hospital for a week.
And I was definitely extremely frustrating. And there was no, no social media, no way to connect and do schooling at home like they're doing now. So I was pretty much isolated with my parents and kind of going through that. But it was also, there were times where I did get sick.
My eyes would yell out and I'd feel feverish and things like that. So that was scary. I mean, it's not something like I said, most of my life I had experienced any kind of actual sickness with that. So it was definitely something different and definitely kind of a sense of something coming on.
So of course, your first transplant, you know, you were an infant. So this was the first time, you know, from an understanding standpoint that you knew what was going on, you knew that your body was failing and you knew that if you didn't get a transplant at some point in the near future, that, you know, that your life would be short. So take us through those, you know, those high school years and through the transplant, if you can. Sure.
So I had my second transplant evaluation as a freshman in high school. It was kind of a weekend trip to Pittsburgh. So they could, you know, do some testing and keep me in overnight and get an idea and to be able to look at me because they had all day beginning all day statistics from Dr. Himes.
So to be able to get a look at me, evaluate me and think like that. So they warned me of all the things that could happen in one of them. It's called the Sausagea Lberesis, which actually, you know, grown your Sausageasica. And it's actually delivers way of trying to increase well, but they're actually blood vessels.
They could, they could pop at any time, which could cause me to throw a blood and things like that. That's really, you know, really scary. That was definitely something that I was, was weird about. Thankfully never happened, but, you know, always something looming.
I also, as a side effect of liver failure, you have rising ammonia levels. You start to be, you know, kind of cranky and irritable and things like that. Unfortunately, I couldn't really see outside of myself, but I was, I was definitely not always a joy to be around during my, during the, which are supposed to be some of the most fun years of your life, unfortunately. You know, we see it that way, which was unfortunate.
But you know what I took from my story. You're very, you know, I was reading your stories like a camp following a following. So when you were little and your parents couldn't stay with you overnight, chills to me, you know, that has to impact you. Despite you not being very fun to be around, you had a tight circle of friends that would travel hours just to be with you and music.
Absolutely. That was, that was my saving grace. I mean, they were with me through it all. I was never, you know, the guy, the popular kid who had, you know, 20, 30 friends or acquaintances, I had a real tight-knit group and that was it and they carried me through high school.
Yeah, it's good. Yeah, because you know, with children and with young adults who are sick, there is that element of isolation, of feeling different from others. So to have that group that made you feel welcome and comfort and supported is really important. Absolutely.
And I actually married one of them, one of them, my girlfriend, too much throughout high school, and now she's my wife. So she really stuck by me. Well, you said my mother-in-law would put these, or what would be your mother-in-law would put these teenagers in a car and travel and I'm like, man, that is one dedicated mama. Right there.
You're a kid. The other thing that... She didn't even know if I was sticking around then. We were investing and we were hoping.
So amazing. And then so we're right here in and then you have Grace who's nine, Grant who's six. And Garrett who's three, which is amazing. One of the things that made me chuckle too and I was learning about your story was that you said when you were a junior and you got the call, like it was time.
It was a beeper. Yes. Yeah. The day issued is all beepers.
Mine was like a clear purple shell. So I had to get special permission to carry that in school. And of course, the connotation with kids at that age was I was drug-y. It was all in jet.
Thankfully, I never got treated any different. But yeah, so they were beepers. And I had several false alarms. That was always fun.
Running out of a school assembly to find a phone to call my parents if you want it up. I was just thinking, my, how times have changed. We talked about how times have changed since we started the podcast a couple of years ago. But then I saw beeper and I was like, oh, I haven't seen that for a while.
The other thing that I love was you said music. I think it was one of your blogs like that. Kind of helped. It was like a therapy for you or a calmer.
Sure. Absolutely. Well, I was always in the music. I played the trumpet since from elementary school all the way through high school.
So I was in the marching band. It's the way my friends were trying to find the other. But music in general, my parents were big music fans in the classic rock. So I was always, I was always into that as well, which definitely helps.
Yeah. So you're blogging, you're working on a book. Like what's changed? Why do you do that?
What are you hoping to accomplish? Well, I spent a lot of time and this is all post-transplant. A lot of frustration and a lot of depression. I've been given this amazing gift.
After my transplant, I went into college. I wasn't really prepared per se. I went into a declare. I kind of did it because you're graduating high school and that's what normal kids do.
So that's what I did. I didn't really have a direction and that just frustrated me more. I should be doing more with my life and things like that. So through therapy and things like that, I persevered and got jobs and moved on with my life.
But it really didn't hit me until a couple of years ago that I really, my best way to live to the fullest and to give back is to share what I've been through and to put it to paper and to hope that others can read it and say, yeah, somebody who definitely experienced the worst and made it through. That's really what I'm hoping to accomplish. My dream someday is to be able to go to hospitals and to speak about it and to give hope and encouragement to others that are in similar situations. Well, I think that's amazing.
And a lot of people, mental health is getting a little bit less stigmatized. But to hear somebody talk about their struggles, it's so common with people who have chronic illnesses who have surgeries to have this anxiety about living their life to the fullest and doing everything. And it can cause this negative reaction to life in a way. And so it's, and for you, especially when you talked about the isolation and you didn't have those support groups of people who were there who went through similar things, I think it's incredible that that's your mission now is to help others feel not so alone.
And if there's someone who is listening right now who's going through something similar, who's waiting for a life-saving transplant, what would you write? What advice to them be? How do you get through it? There are always a couple of things that really stuck with me now and taking back and one of them was too.
There were things that I didn't do. I was self-conscious about my scar, I wasn't feeling great. I wasn't there. I kind of got in my own way.
But one of the things is just to live. It sounds silly, but it's really a mantra. It's just to live like, you know, you're going to live for the next 100 years. I didn't go out for like a tennis team because I don't want to take off my shirt.
I did a lot of journalism class in high school and I didn't pursue it because I thought, you know, that kind of stuff. It's just to really take each day one day at a time and to really do the best you can. The other thing which always carried me through with my parents also is this, the fine machine when you can. There were always things that, you know, at the time it's like, oh my God, it's just the worst.
But when you look back on it, you know, you can laugh about it because we did. We spent a lot of time in hospital rooms together and that's all you can do is try to laugh at yourself and try to see the positive. You must really enjoy your time in those hospital rooms as I understand you now work at the hospital that you spent so much time in, right? Yeah.
So I wouldn't say I enjoyed it but it was definitely a place where I spent a lot of time and I grew very comfortable. I've always told people I'm much more comfortable at the time being in high school. I was much more comfortable talking to adults than I ever was with kids. I felt like I had more in common.
I had more to speak about and that came from all those times, all those nurses, all those doctors. And I was talking about everything kind of, everything kind of clicking for me and that was one of the things that happened. I interviewed for this job at Connecticut Children's which is where my pediatric gastroenterologist works. So I was, and there were a lot of people.
I had a lot of funny stories. But I interviewed for it. It was pretty much a slam dunk I think for that. I mean, naturally I was qualified for it but also I had a former patient at the incredible story.
True testimonial came back. Yeah. Yeah. I have one anecdote I was, because in the first month or two that I got hired.
And my manager wanted to take it around the hospital as an IT person to see where everything was. It worked. And he brought me into one of these, we have daily huddles, one of them is called Triple Island Triple T but they basically took over things that happened overnight and tried to get a direction for the day. So at the end of the hot old he introduced me and he says, you know many of you may not know but he was actually a patient and I swear to God at that point there was a gasp from across the room.
She said, I was your dietitian. When I was a baby on the floor she was there as my dietitian and she hadn't seen me since then. So she was pretty overconfident. It was a pretty amazing thing to have happened.
Right. And as I was going around the hospital there were several moments where people would see my name and say, are you the John Nuss? Yeah, yeah, I am. Superstar.
I was dead. And every day I still encounter people that I back them. And that would be a boost for them. Like back then doing a job.
Yeah, absolutely. This piece, this piece of the little lukory is right to see your patient thriving and succeeding. And you know, yours is truly a story of coming full circle of life and you know now you're a parent and I'm sure that brought a lot of perspective on what it was like for your parents to have a child who is going through a sickness. So for our parents who are listening, what would be something you would tell them?
Well, I mean, at that time there was nobody else to talk to. So they would trust their nurses, trust their doctors, develop rapport. Things like that and really keep an eye and there were several times that they noticed things they would report to the doctors and sure enough, there was something to watch very closely. And same thing, just take a day by day.
That's all I could really give as advice. I actually had a we had a scare with our daughter, our first child. She was actually five weeks early. So she spent two and a half weeks in the NICU.
So I was at that point I was intimately familiar with having your child in the hospital and feeling very helpless. Right. So it was definitely a moment for me. Oh, goodness.
Well, we love your story obviously. I want to ask you about your book. But I want to tell people again, John's transplant journey.com. I love that because I love the pictures and I love seeing the updated pictures of you and mom and your sister who seems super cool.
You know, you try to make your not sound. But I love that you bring this into your life. You don't mind sharing. You're taking these nuggets where we can all learn from.
I felt the music and I felt when your parents are allowed to stay there and your circle of front like that was amazing. So I can't wait to get more. So are we close on this book? Like where are we?
Yeah, we are actually it's been a long process. I mean, I think I started January of, I want to say 2017 or 2018. So it's been a while, but at the same time we've been very conscientious to talk to as many people as we could. And people I've encountered recently, I said, you know, would you mind speaking about on the book and to have your quotes put in there?
And they said, oh, not at all. But it's been a really, you know, it's been a real labor of love to get this to where it is. Right now I'm actually in the developmental editing stage where you send it off to somebody and they kind of pull out that content. You know, they say, well, what about this?
And can you explain more about this and things like that? We've done that. My parents have put in a lot more detail. I put in a lot more detail.
And we're getting close to getting a final manuscript. I'm actually talking to graphic design right now about the cover and things like that. I would hope optimistically by the end of the year that I would have something both online and in print, you know, I'd probably go to self publishing route. I would ultimately someday like to have a big publishing house do mass production other.
But I think while I'm on this momentum, you know, roller coaster, I need to get this out there and get people to see it. Well, I love it. I love you nuggets. Keep it up and let us know when that book comes out.
We'll be rooting for you. Absolutely. John's transplantjourney.com. That's where you can find his blogs, see pictures.
I love that on Facebook. It's John's liver transplant journey. Also on Twitter, John. Twitter, it's my personal account still.
I haven't gotten everything to Twitter. It's JWH12181. Oh, it's on Twitter. It sounds very IT of you, John.
There you go. Well, thank you for sharing your story. You're kind of a pioneer when it comes to this from the recipient side. So thank you for sharing.
Thank you for being open and honest. And thanks for joining us here on the Gifted Life. On the Gifted Life podcast, we'd like to take a moment for mental health. Yes, Sarah.
And this one certainly is one that I'm very interested in learning a little bit more. So can you tell us a little bit about what we're going to be talking about next? Yeah. So today we're going to talk about how to effectively praise your child.
Okay. Let me give you a paper so I can't write. Okay, ready. Well, not just for parents, but for anyone who has children or teenagers in their life.
Okay. So the phrase I'm proud of you. When you first hear that, there's nothing wrong with that, right? And truly they're right to hear it.
I am proud of you, Lawrence. Thanks, John. So saying I'm proud of you is a really great thing. This is how we're going to separate it to where it's really effective for your child or for the teenager in your life.
So when it's based off of performance or outcome versus when it's based off of your effort or your preparation. So this is where it can be a little bit damaging for kids. When you are only praising them and saying I'm proud of you because they won or only based off of the outcome of it. You made me.
Yes. Oh my God, just did this. Hey, okay. And there's nothing wrong with letting your kid know that you're proud of their outcomes and their achievements.
But when it's only about their outcome and achievements, that's when it can cause a lot of anxiety and a lot of helplessness in kids. So that's the main point of this is we want to make sure you are not only praising your kid based off of their positive outcomes, but focus on the efforts it took to get where they're going regardless of how their outcome was. I'm a big effort guy. Yeah.
I think even in our industry, you know, with colleagues or with family to me effort is the big thing. It's much more important. It's a lot of outcomes that kind of parallely effort. But most importantly, it's about the effort given the effort, putting the energy.
Right. Well, because we all know that you can put so much effort into something and still fail or still not do as well because there's so many outcomes. We all do. It's just the truth.
Yeah. So when you're only praising your child based off of their outcomes, what can happen is that they start to avoid challenges. They start to set goals that are easily attainable rather than something that is takes hard work or will challenge them in the long run. So we want to make sure that we talk about how much effort they're putting into something.
Or you know, if there's a something that they have to go through that's scary for them or that causes them anxiety, you praise them for the effort it took to get through those challenges. And another really good point is that we want to make sure that when we are raising children, their identities are not wrapped solely in their outcomes. Because like we said, you can try as hard as you want for anything and you can still fail and we know that as adults. So we want to make sure their identities are wrapped up in good things like their efforts and not just how they did on a test or how they finished in a track race.
I mean, three little ones in there. So different different personalities, different learning types, all that stuff. So we work with that. And we're not only still learning that, but to recognize that and appreciate their efforts.
And Laura, you mentioned the growth that comes with failure and things like that. You know, and obviously the goal of all this is to raise an outstanding young man or young woman. It's a good unit. And for them to understand that it's okay to fail, there'll be a lot more apt to want to try different things that they know, okay, it's okay that I feel as opposed to those that are just focused on the outcome, just focused on I have to win, I have to be great at this.
They don't try as many things. They don't have as fulfilling a life as a young man or a woman because of that's everything. Right. So it's going to cause some really low self esteem if you only focus on their outcomes, their achievements, instead focus on who they are and what it took to get where they are.
All good points. Yeah. And a lot of times I think back like, Oh man, when I was in that grade, like I shouldn't bring home all A's right. So just do your best.
You're not going to be perfect. Just give it your best shot though. Right. Yeah.
Do you think that Joanna will be good? I think yeah, not together. Okay. Not together.
As separate parents, I think you are both doing a great job. And if you focus on your child and how much you love them and how much you want them to be a good outstanding citizen like you said, a good person in their community. All of them, they're doing a great job and they're trying really hard and you're proud of them for their efforts. Not trying really hard to.
Yes. It's hard as a parent. It's the effort, right? All right.
All right. All good points there. Thank you. Maybe have a topic you'd like Sarah to cover.
Right to us. Info at the get to life dot org. And our question and answer segment. We have a good question that relates to our topic or earlier interview.
When was the first liver transplant performed? So the first actual liver transplant was performed in 1963 and coincidentally by John's surgeon, Dr. Thomas Starso he was the first guy who he did the first liver transplant. And of course at first it wasn't successful.
They didn't understand the immunosuppression issues at the time. So then but he was also involved in the first successful liver transplant which was in 1967. As a side note, the same Dr. Thomas Starso he is a very famous guy among of course in the industry.
He did the first successful kidney transplants with identical twins. That's kind of when they started realizing I think the issues there. And he also did the first kidney transplant from a deceased donor. So which paid the way of course for the lopas of the world.
Wow. You're passionate about that answer. I like that. This is good history lesson here.
So what question do you want answered 5046483477? We'd love to hear from you. In every episode of the gift in life we honor a hero. Today's hero is Xander Anthony Leoto.
We learn about Xander from grandparent. The moment my grandson Xander was born all our lives changed in so many ways. A beautiful little blonde haired blue-eyed baby that brought so much happiness the second we laid eyes on him. Xander was the epitome of all things little boy.
He left to play with squishy toys, monster trucks, rocks, sticks, anything outdoors was his thing. He took into our camp in the swamp when he turned a year old and spent countless days out there with us. He adored his mama. He loved her so much.
Just cuddling with her made his day. He was daddy's little boy and loved to do everything that he did. On Father's Day in 2019 we got a call that there had been a terrible accident. We raced to our Lady of the Lake Hospital in Baton Rouge.
We spent the next two days literally taking over the halls and waiting rooms of the third floor. The amount of family and friends there with us praying was astounding. On June 18th the devastating news came from the doctors that Xander was praying dead and would not recover. How could this be?
How could God take such a precious soul from us? How would we go on without him? The Lopa personnel came to talk to us about organ donation. We all agreed that in our loss maybe we can help save another.
The next two days were spent with an amazing team of Lopa doctors and nurses. On June 20th we watched in tears as the doctors took Xander to surgery. In death a small hero was born. We are so thankful for the care and compassion our families received from Lopa, the nurses, and doctors at our Lady of the Lake.
We're even more thankful knowing that our sweet child has been able to save others. Now we pause and say thank you to Xander for the gift of life. And that'll do it for episode 145 of The Gifted Life. Remember, tell your friends the Gifted Life.org.
Yes, we want to thank our guests, John Hoffman, for sharing his story, especially the emotional struggles that he had during his time, especially as a teenager. Can't imagine how that would have been. But oftentimes we as men don't really share that part, that side, we try to give that tough exterior. So it was very nice of him to share that with us.
I mean, different memories too that you don't think about when it comes to the transplant journey. So I appreciated that. And in the beeper, I think I heard that from you one time. But that's about it.
Yeah, back in the 80s. My how times have changed. All right, hopefully we inspired you to sign up as an organ tissue and eye donor. You can do that anytime.
Register me.org. And guys, the best place to find us is at our website, thegiftedlife.org. You can listen to any of our episodes on our website or anywhere you like to listen, whether it's Apple, Google, or iHeartRadio. If you do listen on Apple Podcast, please subscribe and leave us a five star reading so that others can find us.
Remember, spread the word please. We're trying to make life happen and we're doing it together as a team. Now we hope that you go out and do something you would normally do to help us make life happen. Have a good one.
This is a production of LOPA, or the Louisiana Organ Procurement Agency. The gift of life is hosted by Lori Steele, Joey Boudreau, and Sarah Blakemore. Our executive producer is Kirsten Heis, producer ishilant Caraway. Intern is Rebecca Rannam, and we are recorded, engineered, and mixed in our Covington, Louisiana studio by Troy Perez.