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Greetings, friends. As you all know, Last week we ended season 12 of heart to heart with ANA, with an excellent program about having an Elvis or left ventricular assist device as a bridge to transplant. It seems like after I finish a season, I always had people suggesting other shows I should have on that topic. Of course, that happened again, and I decided to let some awesome guest host to a few bonus shows for us today. We're definitely enjoying a global program. Jordan is joining us today from Canada, and Megan is hosting from Australia. Thes two adults who were born with congenital heart defects have a very interesting conversation about Jordan's experience. Enjoy today's episode. My Friends
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Way Welcome, Teoh Heart to Heart with Anna I'm Making Times and the guest host of today's program. This is the first bonus episode of Season 12 of Heart to Heart with Anna Thing. This season is organ donation and transplantation. So I'm very excited for today showed a feature. A seasoned traveler. He is here today to share his story with us about his heart journey and to help us better understand what he endured him, what he needed a heart transplant today shows entitled Surviving Plastic Bronc Artists. Thanks to a heart transplant, Jordan Marcia was born with transposition off the Great Arteries, or T g A. He had multiple open heart surgeries attempting to repair the problems his heart had, but unfortunately they were not successful. And to complicate matters more, he developed a rare lung problem known as plastic bronchitis. Having both heart and lung problems. It became apparent that Jordan had to have a new heart, anything less, and he just wouldn't make it. Luckily for Jordan, he received his heart transplant and the plastic bronchitis disappeared, making him the first known survivor off that potentially life threatening illness. Which is the reason he's on our program today. In addition to surviving plastic bronchitis, he has had to deal with cancer as well. He has a philosophy on life that he will share with us. That is probably the key to how he cheated death overnight for again. Welcome to heart to heart with Anna Jordan.
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Thanks so much. I'm happy to be here,
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Jordan. You've had an awful lot to deal with, especially in your early childhood. Can you tell us a little bit about surviving both plastic bronchitis in cancer.
spk_3: 2:33
To be completely honest, it was a roller coaster. When I was diagnosed with plastic bronchitis. There were no survivors of the disease are pretty much a death sentence. So, uh, at that time, my doctors didn't even know what to do or what to tell my parents. So they put a note out to London and some of the doctors out there asking them what to do about this as they had the majority of the plastic bronchitis cases. When they received that note, they simply told our doctors to send an autopsy report. And like I said, uh, no, No, like he's still alive. So they just sent all er doctors from all around the world to come and check me help basically, just pick my brain, asked me questions, figure out what it was like and what I was doing. But the reality of it was me just telling my mom and my doctors I have a cast on my throat and they would have to put me help, which happened every 2 to 3 hours. And you a bronchoscopy regarding the cancer was about 10 years old when that happens. And it was like a lot of cancer. That was a whirlwind as well. My parents didn't want me to miss anymore school. And I had to get a central line and I was at home doing treatments.
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Wow. Because you're only very young when all of this happened. So five with the plastic bronchitis. Is that right?
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It was. It was three and 1/2 with the blast, bronchitis and then 10 with cancer.
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Oh, okay. Okay. Sorry. Say was still extremely young men. But I understand that your story still doesn't stop there. Seven years of good health. So can you tell us a little bit about cancer?
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Absolutely. So I did. I had seven amazing years before I contracted cancer. It was because of me being immune, suppressed house 10 years old, I had to be taken out of school. They found out that it was cancer of the appendix. They will move my appendix, but it didn't stop. It's, uh it's better than my lymph nodes. And because of the immune suppression, like, I couldn't go on normal chemo. So I had to go on ganciclovir, which was, like most little brother had to be given a central line days, weeks of them trying to inject it into my veins in my arms, in my hands. I vein just blew up. It couldn't handle the robust can cycle There. They threw me onto a central line, flooded my system with can cycle there to try to kill the the lymphoma, the cancer. My mom got fed up with it because I had spent my entire life in the hospital. Prior, she demanded that I actually got to go to school inside the hospital. So I spent half of Grade five in the hospital going to classes in the hospital so I could graduate. Then after that, she went and took courses so that I could actually get administered at home, and I wouldn't want to pay more school. It was just It was a roller coaster of a ride, to say the least.
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Yeah, so that's amazing what your mom did for you there and behave managed to get through so much, you know, Look, giving up
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takes this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy my father promised me. A golden dressed twirling held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor. Heart to heart With Michael Please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments. Anna Dworsky has written several books to empower the congenital heart Defect, or CHD community. These books could be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for Women in the CHD community. Ana's other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic Left Heart Syndrome. A Handbook for Parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more. You are listening to heart to heart with Anna. If you have a question or comment that you would like to address the show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with them.
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How did surviving these two very dangerous conditions affect your outlook on life?
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To be completely honest at a young age, I sort of realized that I was going to die. Not in that moment as I had far too much life to live, and I'm actually really stubborn. So I decided that that was gonna happen and I was just going to continue to live as much as I could as long as I could. Without fear. When you're exposed to that at a young age, death people around you not really making it, you can do two things. One. Crawl up into a ball and suffer. Or to understand that, you know death is a parent. That's going to happen. And you just live every moment to the fullest while you can.
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That's right said. That's really amazing. You know, I couldn't remember Being in hospital is a five year old. When I had my first major operation in, I only remember little things, but for May, I can remember just being focused on getting out of there and getting back home and getting back into the things that I love. It's a lot to go through at a young age, for sure. I've seen a few of your videos, um, and blog's. And on their you've said that you were thinking that you would make it too. 40 years of age, what, 40?
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I say that a lot. And it's because the average age of a heart transplant recipients, on average, 10 years post transplant. And then after that, complications kick out real fast, and it goes down the old quite quickly. I have somehow doubled it, probably with my outlook on life that I have at 22 years now. And the way that I look at things is if the average life span was 10 and I doubled its the chances of me living to 80 is almost unrealistic. I kind of cut that in half and gave myself 40 which gives me 40 years to get out and do all the things that I want to do. And that puts ah, like a fire behind your pressure to really go on, get after life.
spk_5: 9:14
That's great. You know, I remember meeting and an older man in the hospital one time, and he'd had a transplant as a teen. Agers, it's wonderful that you've been able to do so much post transplant
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and make 22 years, and, you know, I really hope you seeing another funny too, to
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keep doing what you're doing
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forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's
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many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify.
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I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects
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join music Home
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Tonight forever,
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huh? Heart to Heart With Anna is a presentation of hearts, Unite the Globe and is part of the Hug Podcast Network Hearts Unite The Globe is a nonprofit organization devoted to providing resource is to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free resource, is pretending to the C H T community, please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.
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Stewart and I understand that you're born with a G a. But you had
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a lot to deal with when you were young. So I understand when you were only three you developed plastic bronc Artis eso Can you tell us a little bit about that?
spk_0: 11:13
Absolutely. So when I develop plastic bronchitis At the time, there were no living survivors when my, uh, my doctors tried to figure out what itwas or what was going on because they had no idea they contact the doctors in London which were the only it was the only hospital that had dealt with it. They asked them what we could do. London said, Send us the autopsy reports and my doctor said, You still life. So that immediately started an entire thing. They started contacting doctors from all over the world. China U. S. Canada, London They came into trouble, sick kids just so they could look at me, asked me, You know, how are you feeling? What's going on? Try to figure out how I was managed, how I managed to live so long afterwards because the oldest living transplant recipient are the oldest living person at that time with class of bronchitis, they weren't even living. He was three weeks that they had went before they passed away. And then there was lead who had managed to go six months.
spk_5: 12:16
Wow. And so you're only three as well. When all of this was happening,
spk_0: 12:21
I was I was pretty much bed written. My bronchoscopy team or the NT team we're doing bronchoscopy is every three hours ourselves having to get put down, anesthetic, the bronchoscopy, woken back up. And then, by that time, I was pretty much gonna put down again. I had chest tubes well, and I couldn't really speak, So I would try to get the words out to my mom and say, Cast, There's a cast. But most of what I did was just take my hands and point to my throat. My mom, noona, telly and team. They got two point, though, where they were coming too fast, and they had actually been not my entire in T team had just said, no, we're not doing this anymore. He's not gonna make it s o. They walked away. My doctor, who was the head of emergency at the time, Dr Peter Cox. He grabbed the bronchoscopy machine and said, I'm not giving up And he stayed in the room with me and he put me under every time, every three hours he did. The bronchoscopy is he just wouldn't let me go.
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Well, that's that's amazing. And I understand that there's a neighbor more amazing thing right around the corner with this story. Is that right?
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Yeah. There is super transplant heart. Uh, that's a story in itself. My doctors, because of the plastic bronchitis, had basically told my parents that you should probably say your goodbyes. I wasn't going to make it. They have taken me off the transplant list just because it wasn't gonna happen. He had pretty much given up. My parents had spent days, weeks, months in the hospital at this time, and they're absolutely exhausted. And then there was this news, which was tragic. My dad told my mom to go back to the wrong McDonald house and just get some sleep. I was resting. My dad went into the errant room he had actually, because we were there for so long. He created entire little nook, a little bed for himself, behind the coaches so that no one was to see him, that he could go sleep for 5 10 25 40 minutes at a time before you have to come back in the room to check on me. I got really lucky while this was all happening after my doctors had said, It's not gonna happen. They're taking me off the list My parents were. They understood that they were waiting for me to die. There was an unfortunate accident and, ah, little boy gone toe car accident and was brain dead. The mother of that child was upstairs in that parent room, and there was a grandmother in there who was consoling her and told her that her niece was alive because there was a kidney transplant that was done just a week ago, and she's living right now because of that transplant. They had previously asked that that woman do you want to do this? And she's absolutely not. But after having that conversation, she went back to the doctors, her husband and they had said, Yeah, Okay, This is something we want to do just because of that grandmother who had that? That story. The doctors told my dad who was there, who was like, feet away from the entire conversation. Look, we have a heart, but we have to check to see if anyone can receive it before your son, because legally, he's not on the list. And my dad said Okay. Yeah, check it. And he didn't want to call my mom because you don't want to get her hopes up. Mmm. So they kept the list and they found out that nobody needed that heart. So the doctors went back and told my dad. Okay, look, nobody needs this heart. We could do this, but it's no guarantee. So he called my mom. My mom rushed over from wrong MacDonald's house and they sat. They sat together, having a conversation with the doctors who said, There's no guarantee, you know, he's really weak. Is the only reason we're doing this is because this heart can go to anybody. And my parents said, OK, yeah, we understand. Um, we understood there's no guarantees. We understood he was going to die. We understood that he wasn't gonna make it. But my dad Ah, and my mom, I knew that I never gave up. I fought through everything from the time that I was born, until I was about three and 1/2 years old, to classic bronchitis, through to everything that I did. So they said, Look, he's not giving up, are not giving up just yet. Transplant ended up being body the body. So it went from that young boy into me without that heart skipping a beat, which was an incredible surgery. As it was. I don't even know how long it took, I think was 14 hours, wound up surgery. The heart was so big that it stuck out of my chest. I was actually in a coma for about three weeks afterwards for my body to sort of feel around it. And when they finally woke me up, my doctor had asked me prior to the transplant and he said, A what do you want to eat? What's the first thing you want when you wake up? It's a lot bigger river. So during uh, during the waiting period while I was waiting to wake up, nobody knew if I was gonna wake up. Nobody knew how good my brain activity was gonna be because I was out for a really long time. Mm. How things were going to happen. There were nurses from my ward that had known me since I was a kid. People flew in from British Columbia to Toronto to see me to see what was gonna happen. I have nurses from emergency parents. My entire room was just littered with people asking the question because you gonna wake up. And when I woke up, the first thing that he said was Mom, where are you? She turned on the corner. She hugged me. My dad was there, and then Peter walked up. My doctor and his hands were behind his back, and he said, Uh, hey, how are you feeling? Like I'm good. Where's my Big Mac when he pulled it out?
spk_5: 18:34
Oh, wow. OK, so, Jordan, I understand that you've got a, um, a Facebook page or a Web page where you share some of your travel stories and make a few videos about your trips that you've been on. So would you like to share that with us?
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Absolutely. So just got Ah, it's on Facebook. It's a watch channel, sort of like a TV show, and it's called Jordan Deem Arcia Jordan within a and then M a R C I. A
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awesome Will anyone at their with CHD or who is a heart transplant recipient? Make sure you check that page out if you want to go somewhere and and see the world. So thanks so much Jordan for coming on the show today. It's been really inspirational for us to hear about how someone who had plastic broom Kostas and cancer and received a heart transplant has been able to travel and do so much and live life to the fullest like you have.
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Thanks so much for having me on this on the show today.
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You know, it's been been a pleasure. So that concludes this bonus episode of heart to heart With Anna. Thanks so much for listening today. So fun. You confined the show on YouTube. Just look up and his name. That's Anna Dworsky. That J W O R s K I and subscribe.
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Remember, my friends, you are not a line. I
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want to thank Megan and Jordan for sharing their experiences with us in this special bonus episode today. Jordan and Megan will join us again next week when we discover even more about Jordan school to visit more countries than any other heart transplant survivor. Come back next week to enjoy another heart to heart with an episode featuring mega towns and Jordan Garcia.
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Thank you again for joining us this week way. Hope you have been inspired on, Empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna With your hose down, Dworsky can be heard every Tuesday at 12 noon Eastern time.