Heart to Heart LIVE : An Open Mic with Anna and Her Community

How do families navigate the uncharted waters of raising children with congenital heart disease (CHD)? Join us on a groundbreaking episode of Heart to Heart with Anna, where we host our very first live show with a studio audience! With guests like Amanda, Joey, Michael, Ayrton, Regina, Rachel, and Chris, you'll hear raw and honest conversations about everything from recent surgeries to the complexities of living with DiGeorge syndrome and HLHS. The live audience format brings an unscripted, spontaneous energy that's sure to engage and inspire.

Ever wondered what it takes to grow a podcast network dedicated to CHD? We share our ambitious plans for the next five years, including launching podcasts in multiple languages such as Spanish, Urdu, and even an African language. You’ll laugh along with us as we recount some of the humorous mishaps we've encountered—like losing an internet connection during a live show from a coffee shop! Our journey is a testament to the passion and community effort behind each episode, evolving from personal contacts to listener-generated suggestions.

This episode also offers a deep dive into the emotional landscape of CHD families. Special guests Meg Didier and Annie Ulchek, HLHS survivors, discuss the unique challenges they face. We cover a range of sensitive topics such as the role of fathers, the experiences of career moms, and the emotional toll on siblings. Discover how CBD and THC are being used for anxiety and pain management, and meet a father who opens up about the scars left by navigating the challenge of raising a child with a CHD while also parenting two heart-healthy children. We cap off by emphasizing the importance of awareness initiatives like placing AEDs in schools and invite you, our listeners, to contribute your stories and feedback for future projects.

Previous episodes mentioned in this podcast episode:

The Courageous Chronicle of HOpe: From Heart Surgery to Self-Discovery https://www.buzzsprout.com/62761/episodes/15027473

Congenital Heart Defects and Gender Identity: https://www.buzzsprout.com/62761/11506572

LBGTQ+ and the CHD Community:
https://www.buzzsprout.com/62761/episodes/11968012

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Chapters

• 0:00 September 24, 2024 H2HwAnna LIVE Episode
• 28:14 Segment Two
• 44:13 Segment Three

Transcript

[00:00:00] I am super excited because this is the first time I've done a live show in a long time. Michael, when is the last time we did a live show? I don't even remember. 

Michael Liben: Years and years and years and years. 

Anna Jaworski: And there are reasons for that. And hopefully none of those reasons will become apparent today.

Anna Jaworski: But I am super excited to welcome you. 

Michael Liben: I'll try to keep all my clothes on. 

Anna Jaworski: I am Anna Jaworski and the mother of Joseph Jaworski, who is here today, and his sister Hope, who was born with a single ventricle heart. And that's reason I'm the host of your program. Today's show is a huge departure from the kind of "Heart to Heart with Anna" show that we normally do.

Anna Jaworski: So after attending Podcast Movement, Friends, in 2024, we decided to shake things up a bit. And once a month I'm going to [00:01:00] start doing a live episode with a studio audience that allows for questions and answers and honest conversation and "Heart to Heart with Anna" usually only features one or two guests.

Anna Jaworski: So to have a whole studio full, this is super exciting. And it'll be fun to see how it goes. I have a wonderful producer today. Spencer wave your hand at everybody. There we go. Spencer is here. Spencer is also in Texas, but not in Temple, all the way over in Austin, Texas. And Spencer will be the producer today.

Anna Jaworski: Aside opening and the closing of the show, everything else is unscripted, folks. We're going rogue. So this is going to be putting all of my Toastmastering skills to the test.

Anna Jaworski: And for those of you who are Toastmasters, basically this is going to be one gigantic Table Topics [00:02:00] session. But it'll be a lot of fun. There's Lauren! Hi Lauren! Oh my goodness. And Veronica, I have not had a chance to meet Veronica yet. Veronica is Regina's sister. So welcome, Veronica. We have amazing people here today.

Anna Jaworski: I would like to say a quick welcome to everybody. See, I'm going off script already, Spencer. I just want to say a quick recognition Hello to everybody in my studio audience. And I know some of you can only stay for a short time and you have to go, so I do want to be able to say, "hello" and welcome you for what time you are here.

Anna Jaworski: So is it Ana or Anna Tanveer? 

Ana Tanveer: Hi, it's Ana Tanveer. 

Anna Jaworski: Hi, Ana. Welcome. And this is your first time on "Heart to Heart with Anna". So welcome, welcome, welcome.

Ana Tanveer: Thank you so much for having me here tonight. 

Anna Jaworski: Well, I'm super excited. I'm hoping this will just be the first time and that Ana [00:03:00] will be coming back again soon.

Anna Jaworski: She has offered to help me make our very first program in Urdu. 

Ana Tanveer: Yes, of course. 

Anna Jaworski: Isn't that awesome? I'm super excited. 

Michael Liben: That's amazing. Yeah, 

Anna Jaworski: I know. Michael's a little green over there with envy because he doesn't have a show in Urdu for "Bereaved But Still Me" yet, but that's okay. 

Michael Liben: No, but I do have another language.

Michael Liben: I mean, 

Anna Jaworski: you do. 

Michael Liben: I have two 

Michael Liben: programs in Hebrew. Yeah. 

Anna Jaworski: So, welcome to Michael Liben, who is the host of "Bereaved But Still Me." It was a "Heart to Heart with Anna" spinoff, used to be "Heart to Heart with Michael," now it's "Bereaved But Still Me," so people in the Bereaved community can find it, and Michael just recently had open-heart surgery.

Anna Jaworski: So welcome to the program, I'm glad to see you're well enough to be here today, Michael. 

Michael Liben: Well, I'm well enough to sit down. That's something.

Michael Liben: Okay. It hurts when 

Michael Liben: I laugh. 

Anna Jaworski: [00:04:00] But we're going to make you laugh to keep those lungs open. It'll be a good thing, Michael. 

Michael Liben: It hurts. Okay. 

Anna Jaworski: All the way from Scotland, we have Ayrton Beatty, who I absolutely adore. They help me with so many things with "The CHC Podcast," but I just had a little bird planted seed saying, "Hey, what about a show for me on Heart to Heart with Anna"?

Anna Jaworski: And I think that's an awesome idea. So we're probably in 2025 going to be doing an episode on drug-induced long QT syndrome, which I had never heard of until I met Ayrton. Welcome to "Heart to Heart with Anna" today, Ayrton. 

Ayrton Beatty: Thanks for having me back 

Ayrton Beatty: on it.

Anna Jaworski: Love

Anna Jaworski: having you here. And then we have Regina. Regina, I'm going to let you introduce yourself while I get a sip of water because my throat is icky. 

Regina Lawrence: Hi, I'm Regina, and I have a three year old daughter named Aubrey [00:05:00] that was born in Toledo that, had DiGeorge Syndrome, and she has TFO APV. , and I've been just recently on, on "Heart to Heart with Anna" for, DiGeorge Syndrome.

Anna Jaworski: Yep. And I think that's the first episode I did completely devoted to DiGeorge Syndrome. So thank you for doing that. Thank you for being here today, Rachel, Rachel, all the way from Indiana head was also on a show recently. Gosh, I think you girls were almost back-to-back shows. So, Rachel, do you want to introduce yourself, sweetie?

Rachael Gott: Yeah. Hi, my name is Rachel. I was previously on "Heart to Heart with Anna", but back in August, we did complex HLHS with a little broader spectrum of topics and it was so much fun. 

Anna Jaworski: You were amazing. I loved having you on the program. [00:06:00] And Chris Atherton, my dear friend. Oh my gosh, Chris, how long have we known each other, love?

Anna Jaworski: I think it's been over 20 years. 

Chris Atherton: A long time. 

Anna Jaworski: I'm so happy to have you back on the program. Do you want to tell us a little bit about yourself? 

Chris Atherton: Well, my name is Chris Atherton and we have a large adoptive family and six of our children were born with heart defects. And we've lost two. We had a baby that we were adopting, who died at eight weeks old.

Chris Atherton: And our daughter Becca died when she was 26 years old, almost six years ago. 

Anna Jaworski: And Becca. was amazing. I loved Becca so much. She was on Facebook. She was very active on her blog and on spreading awareness of congenital heart disease. She and I had in common that we both loved American Sign Language and she contributed several pieces to my latest book, "The Heart of a Heart Warrior."

Anna Jaworski: [00:07:00] And we actually chose to feature one of her pieces at the front of the book. So I'm so happy to have you here today, Chris. 

Chris Atherton: Thank you. 

Anna Jaworski: And the person who helped me so much with the book is Lauren Elizabeth. Oh my goodness, I don't know what I would have done without Lauren. She is the one who did all the interior design and she made the cover for the book when we had three separate books out of the one big one.

Anna Jaworski: And so welcome. Lauren, do you want to tell a little bit about yourself, honey? 

Lauren Elizabeth: Yes. So as Anna said, I help Anna with a lot of the Heart United the Globe things, whether it's website or podcast work. And, I am 32 with HLHS. 

Anna Jaworski: We have a lot of HLHS people here today. So that's really exciting.

Anna Jaworski: Tracy, this is your first time to be on the program. Welcome to "Heart to Heart with Anna". And do you want to tell us a little bit about yourself? 

Tracy Ripley: Hi. So thanks for [00:08:00] inviting me.

Tracy Ripley: This is awesome. And I love hearing all of your guests and how they're all also heart warriors themselves. I am a mom of a heart warrior. My son was born with aortic stenosis. And then ended up with , a leak because they did the balloon cath, which caused other problems. So he's now 11 and has had three heart surgeries, two open-heart.

Tracy Ripley: I recently wrote a book and I, that's how met Anna about his journey from a mom's perspective on going through that with him. 

Anna Jaworski: Yeah, and I'm hoping that Tracy will come on the podcast and we can learn more about her book. That'd be so exciting. 

Tracy Ripley: That'd be awesome. 

Anna Jaworski: Okay. So welcome Tracy, Joey.

Anna Jaworski: You're next baby. Tell everybody who you are. 

Joey Jaworski: Hello. My name is Joseph Jaworski. I'm Anna's son. So I've been witness to all of her activities in the heart community for [00:09:00] pretty much my whole life. My little sister was born with HLHS and I've just had a ringside seat this entire time. So I'm here currently learning more about podcasting myself. So my mom invited me on so I could see all the cool stuff she's got going on and hopefully glean a little bit of knowledge about how to progress myself. 

Anna Jaworski: Yes. I'm super excited friends because Joey is going to start his own podcast. Is that not the coolest thing?

Anna Jaworski: Joey's been on "Heart to Heart with Anna". Gosh, Joe. Two, three, four. 

Joey Jaworski: , I think two times, two times I've been on, 

Anna Jaworski: yeah. Talking about being a sibling of someone with a congenital heart defect.

Anna Jaworski: And he always is so well spoken. Poor baby, not only has he had to ring side seat to all the hard stuff I've been doing, he got dragged to all my Toastmasters meetings when he was a kid because I was a homeschool mom. So Joey knows a lot about Toastmasters as well. [00:10:00] 

Anna Jaworski: Welcome. 

Michael Liben: Um, um, um, sorry. 

Anna Jaworski: Michael has not been to my Toastmasters meetings. 

Michael Liben: I'm gonna get me a clicker. . 

Anna Jaworski: Amy Cunningham. Welcome to "Heart to Heart with Anna" Sweetie. 

Amy Erhart: Hi. Thanks for having me. I am Amy. I'm from Ohio, and I am 40 with HLHS. I've got to speak to Anna A little bit previously and. I also have my own podcast called "Diaries of a Heart Warrior." I just started, January of 2024.

Amy Erhart: So it's been exciting getting to meet new people and see new faces and learn about other people's stories and their journeys. It's just been really eyeopening and really enlightening. 

Anna Jaworski: And I can't wait to be a guest on your show. Amy, 

Amy Erhart: I know we got to get that done. 

Anna Jaworski: I know it's going to be so much fun.

Anna Jaworski: Okay. Amanda, can you turn your camera on, sweetie? I want to see your face. I'm so excited. The last time I saw Amanda, she was in the hospital waiting for [00:11:00] her transplants and I was praying so hard for you. So I'm so happy. Look at her! Yay! Post-transplant! Congratulations! I know. I know. Oh my gosh. You were so pale.

Anna Jaworski: You were so pale when I saw you. 

Amanda Harper: Yeah. My name is Amanda. I live in Ohio, and I'm still recovering from heart and liver transplant. I am exactly five months out now. And I have a bad foot now. A lot of things had happened during transplant that just kept going wrong and, now recovering at home's been a little more difficult.

Amanda Harper: But I'm here. 

Anna Jaworski: You're here and you're smiling, which I love to see and I'm just so happy that we're on the other side now. And 

Amanda Harper: yes, 

Anna Jaworski: you'll recover 'cause you are a strong, resilient woman. So I'm super excited to see you today. Alright. Veronica, I haven't really had a chance to meet you [00:12:00] as much as I would like to.

Anna Jaworski: So, are you able to turn your camera on or not? Veronica? 

Veronica Gilbert: Hello. 

Anna Jaworski: There we go. Hey, Veronica. Welcome. Can you introduce yourself to us, sweetie? 

Veronica Gilbert: I'm Veronica, Regina's sister. My niece. It has DiGeorge Syndrome and I'm just trying to learn more. 

Anna Jaworski: That's awesome. That's awesome. And she actually listens to "Heart to Heart with Anna", which, yay!

Anna Jaworski: I love it when other family members listen so they can learn more about congenital heart disease and become an even greater advocate for the cause. So now we've met everybody who's here right now. We will probably be having a couple of other people who will join us as they are able.

Anna Jaworski: Annie Ulchak will be joining us. I'm super excited about that. And oh my goodness, I think we have maybe one or two others who might be joining us. Not everybody's been a [00:13:00] guest. Some of you have been a guest. Maybe now that you have been, you have a question. Joey's talking about starting his own podcast so he may have a question as well. Now is the time for Q& A. I know Regina has a question, so I'm going to call on Regina first.

Anna Jaworski: Regina!

Regina Lawrence: Okay. Question one. What is your favorite thing about "Heart to Heart with Anna"? 

Anna Jaworski: Okay. What is my favorite thing about "Heart to Heart with Anna"? It's this. It's getting a chance to talk to so many fabulous people from all around the world, doing all different kinds of things in the heart community, learning so much from all of you.

Anna Jaworski: You all teach me so much. And then there are people like Michael who make me laugh. Every time we get together. I know I'm going to have a chance to laugh. I also know sometimes when I get together with you [00:14:00] I might be doing a little bit of crying and that's okay because Michael and I believe that tears shared or sorrow shared is divided and that joy shared is multiplied and I love that about "Heart to Heart with Anna".

Anna Jaworski: I get a chance to hear the most amazing stories and meet the most amazing people. So that is definitely my favorite thing. 

Anna Jaworski: Chris raised her hand. 

Chris Atherton: I wondered how doing the podcast has changed you. 

Anna Jaworski: Oh, wow. Joey may be better at answering that than I am. . I think one of the ways that has really changed me and Joey can confirm or deny this is when I started 11 years ago, I knew nothing about podcasting.

Anna Jaworski: In fact, I didn't even know I had a podcast. That may sound really stupid, but when Josh Bernstein called me, he said, "Hey, Anna, have you ever thought about having your own internet [00:15:00] radio show?" So that's what I thought I had. I thought I had an internet radio show. And then a couple of years after I had been podcasting, I found out that it wasn't really a radio show because I'm not associated with any radio station, that it was actually a podcast.

Anna Jaworski: So I learned a new vocabulary term and a whole new world opened up to me.

Anna Jaworski: What do you think, Joe? 

Joey Jaworski: Yeah, I think, definitely what I've seen is a crazy level of commitment. I mean, you've always been committed to your cause, but watching you be committed to this process and constantly having new content and being able to engage with a lot of different people has been a big change that I've seen in you.

Anna Jaworski: Thank you, Joey Did you have another question, Chris? 

Chris Atherton: I just wondered, is there a podcast or a guest or a topic that surprised you the most that you thought, wow, something like that? Yeah. 

Anna Jaworski: Oh gosh. She's really putting me to the test. I [00:16:00] just released episode 461, and I've been doing this for 11 years.

Anna Jaworski: So what has surprised me? You know, what I think surprised me the most, Chris is when people like Dr. Edward Bove and Dr. Fred Wu came on my program and they were so down to earth and so excited about sharing their knowledge with the whole community. I mean, these men make a lot of money per hour and they came on my show free just to be there for all of us.

Anna Jaworski: I've had amazing doctors. Those are just two that popped to the front of my mind, but I've had way more than that. And some of the nurses, I'm sure you can agree with this, that we have way more contact with the nurses when we're in the hospital than we do with the doctors and to see how they too were willing to give me their time and to come forward and be so loving and so giving on the podcast that has really warmed my heart. So I think that [00:17:00] kind of surprised me. I didn't think it was going to be hard to get parents on the program. I was delighted to see so many adults with CHD who were willing to come on a program. I always learn from them and it's always been inspiring to me because that was my big dream was to see my baby grow up to be an adult.

Anna Jaworski: But to see the doctors, the nurses. I've had a pharmacist on the program and, all of these other related areas to have them come on the show. I had a great guy come on one time that works with medical devices. And he came on and talked to me about all the medical devices that his company has created and that was really exciting to me to see so much sharing that has gone on. I think that's been a little surprising to me -- the depth of compassion that people have shown has just been heartwarming. Good question. Really [00:18:00] good question. Amanda, Amanda has a question. 

Amanda Harper: I'm going to agree with your son on this one.

Amanda Harper: You do have crazy commitment. Like, off the rails crazy commitment. And, , I got two questions, actually. The first one is, where do you see yourself in five years of, like, different projects? What would you like to accomplish in five years? 

Anna Jaworski: Oh my gosh. Five years. You know, usually I have a five year plan, don't I, Joey?

Anna Jaworski: But I haven't made a five year plan recently. I Okay, this may be pie in the sky, but I dream big and that's why all of you are here. I would love to see me being a head of not just three podcasts like I am right now, but I would love to have a real network with more foreign language shows. We have a Spanish podcast. It's on hiatus right now because unfortunately one of the hosts lives in Puerto Rico [00:19:00] And poor Puerto Rico has been hit by one natural disaster after another.

Anna Jaworski: And she doesn't have reliable internet. So we haven't been able to do any recordings in a while, but we're hoping to come back next year. I'm keeping my fingers crossed that we can put together a reliable team and come back. Ana was here, but she had to leave because she was exhausted. But Ana is wanting to do a show in Urdu with me.

Anna Jaworski: And I just think it would be amazing to have a podcast. Oh no, Ana is still here. So Ana, not trying to put you on the spot honey since you haven't even been on the show yet, but I think it would be amazing to have a show that's just dedicated to Urdu. It's one of the most spoken languages and yet I've never done a show in Urdu before and to maybe be the executive producer of a program in Urdu.

Anna Jaworski: I would love to have one in one of the African languages and I'm super excited that I am [00:20:00] going to be producing an episode here soon. If not, by the end of this year, early next year, that will be in my first African language. So I'm super excited about that. We have been talking about doing that for, oh my goodness.

Anna Jaworski: We have talked about that for 2 or 3 years and it just has never come to fruition, but it's going to happen and again, you know, this is another language that's widely spoken on another continent. They have very little in the way of educational opportunities for them or having a platform to share their stories. So I think In five years, I would love to say that the HUG Network, which is Hearts Unite the Globe, that we're really uniting the globe by producing more podcasts in foreign languages.

Anna Jaworski: Thank you for stretching me. That was a real stretch to make me talk about that.

Anna Jaworski: And did you say you had another question? 

Amanda Harper: [00:21:00] Yes. What is the craziest episode you had that you wished that you didn't do. 

Anna Jaworski: Oh my gosh. Hands down. I did a live episode. This is why I haven't done live episodes in a long time. Oh my goodness. I was traveling with Frank and we were on the West coast. And I said to Frank, I have to do my podcast.

Anna Jaworski: So this was in Season Two. , I was using BlogTalkRadio to produce my episodes, so I couldn't schedule anything. Way back then, you couldn't produce something and then schedule it to go out. You had to be there. You had to push the button. I was doing a live show. I was in a coffee shop and we lost internet.

Anna Jaworski: It was awful. So yeah, that was definitely hands down the worst episode. I wish I hadn't tried to do it, but I can laugh about it now. I was not laughing about it then. I was mortified. 

Michael Liben: That's when you have to send in the interpretive [00:22:00] dancers. 

Anna Jaworski: Yeah, there were no interpretive dancers.

Michael Liben: Well, see, you just weren't prepared. One of the things you learn by doing what you have to be prepared. Right? So now if there's dead air, we just snap and the dancers come in and till we get it back. 

Anna Jaworski: There you go, Michael. Amy has a question. 

Amy Erhart: So I kind of have two questions as well. The first one is how do you choose your guests and your topics?

Anna Jaworski: Okay, that's a great question. And when I first started a million years ago, and I was in Season One, when Josh Bernstein called me and asked me if I wanted my own internet radio show, he said, "What would your topics be? And who would your guests be?" At that time I was writing a regular blog and it was really easy for me to come up with topics because I chose the topics that I wrote about on my blog and immediately certain people's names were coming [00:23:00] to the forefront of my mind.

Anna Jaworski: So, that was really exciting. For Season One, I just reached out to some of the many wonderful people that I've known over the years. But as time went on, the exciting thing was people started coming to me and saying, "Anna, I heard this episode. Have you ever considered, like Regina, doing a show on DiGeorge syndrome?"

Anna Jaworski: And I hadn't done one on DiGeorge syndrome. So it was so excited to me when she reached out to me and said, "Have you ever thought about doing this?" I was super excited to have her on the program to talk about her. daughter, and not only her daughter, but her husband, who also has DiGeorge Syndrome. So I thought that was really interesting and unique.

Anna Jaworski: Ayrton just reached out to me and said, "Hey, have you ever thought about doing a program about drug-induced long QT syndrome?" No, but guess what? Now I will be doing an episode on that because I know the perfect guest to come on the program. So think I've just been super blessed, Amy, that I've [00:24:00] had absolutely wonderful friends like Chris, like Michael, like so many other people, Lauren and Amanda, who I've had the pleasure of meeting in person.

Anna Jaworski: And when I've asked them if they would like to be guests on the program, I very, very seldom receive a "no" as a response. Almost always it's "Yes. When can I do it?" And that has just been one of the great joys of my life.

Amy Erhart: Yeah. So my second one is kind of a follow up. So after like 400 and some odd episodes that you've done, how do you continue to keep your content fresh? 

Anna Jaworski: That's an excellent question. And Michael can verify this or deny it if I'm wrong, but I've been going to Podcast Movement, which is one of the largest podcasting conferences, I think in the world every year for the last eight years.

Anna Jaworski: And that for me is my [00:25:00] continuing education. I go to it every year. I come away with a million ideas. In fact, that's how Ayrton and Annie and other people have come to help me with "The CHC Podcast", because while I was at Podcast Movement, I decided 'Hey, I need to do a new podcast with a different format than what I'm doing with "Heart to Heart with Anna"' and "The CHC Podcast" was born.

Anna Jaworski: So going to Podcast Movement helps me to stay abreast of what's new in the podcasting universe because things are always changing. I'm sure you've seen that even though you just started at the beginning of this year. Things are always changing in the podcasting realm and I need to be on top of that. I don't do a whole lot beyond Podcast Movement except one of the hosts for "Heart to Heart with Anna" is Buzzsprout.

Anna Jaworski: And every two weeks, Buzzsprout puts out a podcast called Buzzcast. And in that podcast, [00:26:00] they talk about what's new and up and coming in Buzzsprout as well as what is new and up and coming in the podcasting universe, and I also listen to Joanna Penn's podcast which is about writing, but she's also a podcaster and she talks about podcasting so those are the ways that I keep on top of what's happening in the podcasting world and I'm always getting ideas for how to improve my episodes of my show and I also have a wonderful Facebook page that is devoted to "Heart to Heart with Anna", and I have the best guests and I have the best listeners in the world.

Anna Jaworski: I will throw polls out there and ask them, what do you guys want to see come up next year? , I'm struggling here, can you guys help me? And they're so good at answering my questions and taking polls to let me know what they would like. And that's why you guys are here today, too, because in the second segment, you'll be telling me what you would like to hear more [00:27:00] about.

 I'm going to take a short break and when we come back, I am going to be talking to you about the topics that you want to hear in 2025 and then in a third segment I'll answer any other questions. So although this is a live show, I am going to thank our newest "Heart to Heart with Anna" sponsor.

Anna Jaworski: Thank you to HeartWorks. For those of you who don't know about HeartWorks, it's a non profit organization whose mission is to find a cure

Anna Jaworski: for congenital heart disease. So stay tuned because later this year, we'll be featuring an episode where you can learn even more about HeartWorks. 

Anna Jaworski: As most of you know, "Heart to Heart with Anna is not intended to be a substitute for professional medical advice, diagnosis, or treatment. This is just a live discussion by members of the Congenital Heart Defect community. And the opinions expressed in this episode are not those of Hearts Unite the Globe, but of me and my guests and our discussion today is just to help me in planning 2025. [00:28:00] and to answer questions that you all may have about the podcast. That's a rendition of the disclaimer that the Board likes me to put on every episode because we don't want people to think that what we're talking about is medical advice. 

Segment Two

Anna Jaworski: I do want to know what topic she would like for me to address in 2025. I have my yellow tablet here. I am ready to take notes. So Ayrton, I'm going to let you go first. 

Michael Liben: Here comes the to do list. Be careful. 

Ayrton Beatty: Yeah, as you know, especially if you listen to the CHC Podcast, I have drug-induced Long QT syndrome and not a lot is known about that. And I was wondering if you'd be interested in doing an episode on that. 

Anna Jaworski: I absolutely would. So my question for you would be, 'Would you like to come on as a solo guest, or would you like me to try to find a doctor who could come on with you to maybe answer some questions you may have [00:29:00] about drug-induced LQTS?'

Ayrton Beatty: I'd be happy to do it, whichever way you felt would work best. 

Anna Jaworski: Do you have some questions that your doctors have not been able to answer for you? 

Ayrton Beatty: None of my doctors have answered questions about it. 

Anna Jaworski: Okay. So with your permission, I would like to try and find a cardiologist who understands drug-induced Long QT syndrome.

Anna Jaworski: I'll reach out to my medical advisory board and see if they have a recommendation on who would be an excellent cardiologist to come on and maybe give us some education about this condition and what can be done about it. 

Ayrton Beatty: Yeah, because all I know is that it can be a side effect for a lot of medication, but a lot of people don't know it can happen.

Ayrton Beatty: But I also know it does have a genetic component as well. 

Anna Jaworski: Absolutely. Oh, you know what, since you said that, I have two really great geneticists. who have been on my show in the past. [00:30:00] I'll reach out to both of them. Super. Does anyone else have a suggestion for a different kind of show? And let me welcome Meg Didier.

Anna Jaworski: Yes, Meg Didier made it to the program, and so is Annie Ulchak. So welcome, ladies. 

Annie Ulchak: Hello. Sorry, I'm a little late. 

Anna Jaworski: That's okay. I'm so happy you're here. Welcome Meg. 

Meg Didier: Hi there. How are you? 

Meg Didier: I'm excited. How's Lucy? She is quiet in the background right now, which is why I am off camera and muted. So if you hear her, I apologize.

Meg Didier: But she's doing great. 

Anna Jaworski: Oh, that's so awesome. Okay, so two more HLHS survivors here with us.. I am looking for topics for 2025. Can you believe that we're already in autumn? I just can't believe it. Time has just flown. Okay, Tracy. 

Tracy Ripley: Okay, so I , am new to your podcast, so I don't know [00:31:00] if you've already maybe done something, , but was curious if you would be interested in doing a podcast dedicated towards career moms that are raising CHD children. 

Anna Jaworski: That is an excellent suggestion. 

Tracy Ripley: That's been my experience. And like I said, I wrote the book from my perspective and literally the same month that my son was born, I was promoted to a higher level position.

Tracy Ripley: And so his whole CHD journey, I was climbing that career ladder and all of the things that come with that along with his battle. So, I'm sure I'm not the only experience is that. 

Anna Jaworski: That's an excellent subject. And believe it or not, even though I have done, yes, 461 episodes, I've never done one on that specific topic.

Anna Jaworski: So see, Amy, this is how guests and my topics end up coming to my podcast. This is awesome. Yeah, [00:32:00] that's brilliant. I would love to do that. And I would love for you to be the guest if you don't mind. Do you want to be the only one? Or do you want me to try to find a couple of others? Because like you said, I'm sure you're not the only one.

Tracy Ripley: Yeah. , I would be honored and if there are others, it would be wonderful because I know when I was starting out, that was something that I looked for and couldn't find, you know, and you're always trying to find support and others that have been through it. And so it's always good to hear like, how did they get through it?

Anna Jaworski: Yeah, and it might be fun to have you on there and a dad, because this is something that the dads struggle with so much is I have to be the provider for the family. I'm providing the insurance. How can I do that? And my kid's in the hospital. It really is a great challenge. There are times like with you where the mom is also the provider, but in my situation, my husband was the provider.

Anna Jaworski: And the worst part is that he had [00:33:00] just taken paternal leave because we had a new baby. We didn't know in utero. We didn't know immediately after birth. So he took the maximum time he could to be home with the baby. And then two months later, we found out we had a baby who needed open-heart surgery. So that was a real challenge for my husband.

Anna Jaworski: In fact, Frank might be the perfect person. 

Tracy Ripley: Well, and that's very true because like my husband, the job that he had, they didn't pay for vacation and we had older children. And so we had to always divide and conquer. 1 was at the hospital, 1 was at home, you know, so it's a battle,

Tracy Ripley: and then I know some parents, it becomes too much and it breaks their marriage. Yeah. 

Anna Jaworski: Yes, I have seen that so much over the years. It breaks my heart. But yeah, it's a great stressor. Amanda! Amanda has an idea for a show.

Amanda Harper: I've got two actually. This one came from another CHDer that had reached [00:34:00] out. One about transgender in CHD world.

Amanda Harper: And then the other one was CBD and THC. 

Anna Jaworski: Okay, 

Amanda Harper: honey, I 

Anna Jaworski: know you and Joey know what this means and probably everybody else does but me. Is that marijuana? Or? Okay. So see, I kind of almost thought, all right, Michael, don't look like that.

Anna Jaworski: Okay. What aspect of that is like, something as healing as recreational or, 

Amanda Harper: To help with like anxiety and, pain. 

Anna Jaworski: Okay. Anxiety and pain. Okay. I'm taking notes. That's good. I have done a transgender episode because I actually have done two because my daughter is transgender. And she actually came out on my program to the whole universe. In fact, she came out where she hadn't even told some of my family members. [00:35:00] !

Anna Jaworski: Yeah, that was something. I probably can't do enough episodes. In fact, that may be something in the future is having a program that deals with CHD and the LBGTQ community. They could definitely have their own program. They have their own concerns, especially when they're going through the transition process.

Anna Jaworski: Not just people that are trans though. Also people that are gay or lesbian. I know I did an episode with a doctor who was gay. And he came on the program and talked about how he was told he couldn't be a pediatric cardiologist because he was gay. And if you haven't heard his episode, it was very, very touching.

Anna Jaworski: I just wanted to bawl through a good part of that episode because I couldn't believe people would be so unkind to him when he had such a noble aspiration and he did it despite them. And he's just [00:36:00] phenomenal. I'll make a note to put those episodes in the show notes, because I think those are two of my better episodes, so thank you.

Anna Jaworski: Those are excellent suggestions, Michael. 

Michael Liben: Yeah, we talked about siblings before that's not new, but I think what we didn't talk enough about was from a parent's perspective. You have a child with CHD, or more, and you may have other children, and what it means to them. I think, speaking personally, I think we, in some sense, robbed my other two children of a piece of their childhood.

Michael Liben: I think we grew them up very early to help out, because we needed help. There was a point where I could no longer help with Liel; I could no longer bathe her. Sapir and Liel went to school together, so it meant that Sapir couldn't go home with friends, but she had to come home every day to be with Liel.

Michael Liben: So she missed a lot of her own personal friendships and relationships [00:37:00] that kids in elementary school and in junior high school need. And as a parent, we did that. Now, the upshot is it has a happy ending. Today, both of my other children are adults. One of whom is already a father. They're both married and they're both marvelous adults.

Michael Liben: And that, you can't take away from them. They're just amazing people. But I feel that getting there as a parent may not have been the best way to do it, but we had no other choice. , I'd like to talk about that from a parent's perspective. 

Anna Jaworski: I love that idea. I think one of the things as an educator and you were a teacher as well, so you know what I'm talking about.

Anna Jaworski: You worry about what the long term effect of some of your actions are going to be on your children. And unfortunately, we don't find out for 20, 30 years. 

Michael Liben: I wish I had the luxury of time. 

Michael Liben: I wish I had the luxury of time to worry about that. I couldn't worry about it. I said, "You do this and you do that and you have to be home and you have to be home."

Michael Liben: And sometimes one of them was more [00:38:00] compliant than the other, but they did what they could. They did what they could. And then there were episodes where they were home alone with her, where they dropped the ball. Right. They were home alone with her. They're not a lot older than her and things started going on in another room that they didn't notice.

Michael Liben: And that was sometimes very dangerous. But as a parent, we haven't talked much about this. I know my kids were on talking about that as siblings, what it meant to them. 

Anna Jaworski: They did. They were wonderful. 

Michael Liben: Well, thank you. But I think as a father, I need to, um, 

Anna Jaworski: Share your story? 

Michael Liben: Share the story, but I think I also need in some sense,

Michael Liben: and I have over the years apologized to my other children. I mean, I'm very happy with the results and I'm very happy that they are who they are. And part of who they are and part of how they got this way was our doing what we did. But I believe, at the time that we were stealing a piece of their childhood.

Michael Liben: We needed them to grow up faster. We needed help. In some sense, that's a very noble thing, but in some sense, I feel really bad about it. 

Anna Jaworski: Okay. I would definitely love [00:39:00] to do that episode. I think that would be amazing. Amanda. 

Amanda Harper: Medical 

Anna Jaworski: From what perspective, would you like that? Would you like for me to have a psychologist or psychiatrist come on and talk about that? Or would you like for me to have people like you who have experienced it and maybe talk about what your situation has been like? 

Amanda Harper: I think, parents and patients and then maybe do another episode with a psychiatrist.

Amanda Harper: Or you can bring them all three on the same time. 

Anna Jaworski: Oh, no. I think your idea to begin with having two separate shows would be, yeah. Yeah. Cause then you can get into it a little bit deeper. 

Amanda Harper: Yeah. 

Anna Jaworski: Especially if I could get. Lisa Morton or Tracy Livecchy to come on. They're heart warriors who are [00:40:00] also practicing in that space.

Anna Jaworski: So I think they could give a really unique perspective to dealing with medical PTSD. What do y'all think of that? And they just wrote an amazing book that deals with that topic. Maybe I can get them both on. I tried to do that before, but they were out promoting their book, and they weren't able to do it.

Anna Jaworski: It's really hard, and Ayrton can appreciate this, because Lisa's in Scotland, and Tracy's in Connecticut, I think it is. 

Anna Jaworski: I think that would be great. What do y'all think about that? Does that sound good? I'll reach out to them. Okay. One more thought ton, and I have to take a quick break, Love. 

Ayrton Beatty: Sudden Arrhythmic or sudden cardiac death syndrome. 

Anna Jaworski: Yes, I did do an episode on that a million years ago, so yes, it is time. Yes, but I did one with a gentleman who had experienced. [00:41:00] sudden cardiac death of his mother. And then he ended up having a heart attack. He ended up having multiple heart attacks. He started a nonprofit organization to try to determine what the gene is that may be causing this problem.

Anna Jaworski: But that was years ago. So yes, sudden cardiac death. That's actually an excellent topic for me to revisit. 

Ayrton Beatty: Yeah. Cause the episode I'm on talking about my brother because he was a sudden cardiac death syndrome. 

Anna Jaworski: Yeah. It's something that we have to continue to promote awareness.

Anna Jaworski: In addition to doing the one with Ben, I also did an episode where I talked to somebody who started a nonprofit organization to put AEDs in schools. in Texas. And that has been something that there are other nonprofits out there who have that same goal. And I just think we can't applaud those [00:42:00] people enough.

Anna Jaworski: We can't put enough light on those organizations because what they're doing is so critically important. So yes, excellent suggestion. I will definitely take that into consideration. I just discovered recently a new non profit that's doing that. So maybe I'll reach out to them and give them a chance to tell their story.

Anna Jaworski: Okay, friends, this has been awesome. I have a whole page of notes. This is great. So, we are going to take a really super quick break. And then when we come back, we'll have a little bit more conversation. This has been so much fun. So, I love it when you all give me feedback about "Heart to Heart with Anna" episodes.

Anna Jaworski: It helps me to improve the programming for all of you. You can always send me a message on Facebook. There is a "Heart to Heart with Anna" page or I'm on Facebook. Just find me Anna Marie Daigneault Jaworski. I'm the only Anna Marie Daigneault Jaworski. You can also find me on Instagram, LinkedIn, and you can send me an email to Anna at "Heart to Heart with Anna". com. [00:43:00] Or you can always submit a message on our website, which is HeartUniteTheGlobe. com. 

Anna Jaworski: One of Hearts Unite the Globe's biggest supporters over the years has been Baby Hearts Press, a publishing company devoted to the congenital heart defect community.

Anna Jaworski: We have a series of books that are anthologies of stories by members of the CHD community. I'm trying to twist Michael's arm to write for the new Heart of a Father. I would love for all of you to consider submitting an essay for one of our upcoming books. Our books are "The Heart of a Mother," "The Heart of a Father," "The Heart of a Heart Warrior," and they have essays by people just like you.

Anna Jaworski: And these are inspirational stories sure to make you feel a sense of kinship with other people who have traveled in your shoes. So check out Baby Hearts Press. There is a submissions area, and you can learn about the upcoming books that we are working on. And I'm sorry to see that Chris left, because one [00:44:00] of the new books that we'll be working on is "The Heart of a CHD Angel," and it sounds like she has two CHD angels that she could tell us about.

Anna Jaworski: So I'll be reaching out to Chris now. So now back to the show. 

Segment Three

Anna Jaworski: In this last segment, I would love to invite any of the audience members to go ahead and share a topic or question if you didn't get that answered earlier, but I would love to also give you a chance to talk about "Heart to Heart with Anna", maybe what your favorite show was or what your experience was like being a guest or maybe a suggestion on something you think I can do that would make the show even better. This is your last chance to say something before we conclude the show. Is there anyone who'd like to share something with us? 

Annie Ulchak: Can I? 

Anna Jaworski: Yes, Annie. 

Annie Ulchak: I know I've been a guest a couple of times on your show, well, maybe more than a couple, but I wanted to say that one of the things I really love [00:45:00] about your show, and you continuously do, is that you make me feel comfortable. Even when I'm in a crabby mood, or I'm realizing that something that I'm talking about has altered how I feel . You're able to sort of talk me down and get me back onto the platform so that I'm able to continue with the direction we had hoped to go into or change direction.

Annie Ulchak: And you being the kind of host that you are and everything else, has been great and so great. That's why I chose to continue working with you in other ways because I know that you put out a wonderful podcast that a lot of people, as they find they just become so amazed and happy that they have somewhere to listen and go to, as a parent, as a family member, as a patient, and anything else in between. So [00:46:00] thank you for all that you've done and continue to do. 

Anna Jaworski: Thank you. And it's been such a joy to work with you and Ayrton on "The CHC Podcast" and all the other amazing volunteers we have working with that podcast as well.

Anna Jaworski: I have absolutely loved every minute that I've worked with you guys, you are so much fun to work with. I have to give a plug to Toastmasters because I was painfully shy as a kid and even as an adult, I was really, really shy. I know most of you probably don't believe that, but Toastmasters really helped to bring me out of my shell.

Anna Jaworski: Hey, Aubrey! Aubrey's joining us. And I've been in Toastmasters now for 23 years. That is what helped me to find my voice, and it taught me about active listening, and just let me know that I had something worth saying, something worth sharing. So thank you. Thank you so much for saying that. That really is kudos to Toastmasters probably more [00:47:00] than anything.

Anna Jaworski: Ayrton, now it's your turn, Love. 

Ayrton Beatty: "Heart to Heart with Anna" was the first chance I had to talk to anyone properly, publicly, about Edward and losing him. And you just made the experience so nice and welcoming. And you were just a random person I met on Facebook.

Anna Jaworski: I know, and now we've met in person. I've actually been able to give Ayrton a hug in real life, which is just awesome. And I feel like you're one of my dearest friends. So in fact, I know I was going to say I've adopted you. You're my heart kid. Not that I wanted that. And I really hope that we find a cure for this drug-induced LQTS so you don't have to deal with it anymore.

Anna Jaworski: And then you can just be a dear, dear friend. So thank you for saying that. I absolutely [00:48:00] have loved getting a chance to visit with you and to work with you on "The CHC Podcast". So that's just lovely. Michael... 

Michael Liben: You mentioned having something to say and I wanted to talk about that. When I was a kid, I was in college. I did radio. So I had a little bit of background. played music, I edited, dramatic programs, directed dramatic programs, did the news. I had some experience. So when the idea of podcasting came around, I said, "Well, this is really something that I should be doing.

Michael Liben: And I really want to. "And I had a lot of technical capability here. I've got a lot of machinery, but what I didn't have was something to say. And being on "Heart to Heart with Anna", which then led subsequently to "Bereaved But Still Me,"-- you gave me something to say, and I thank you for that because I haven't shut up now for almost eight years.

Anna Jaworski: And look at all the lives you have touched, Michael. You have been amazing and look at what you've taught me. [00:49:00] I think one of the things I love best about our partnership is that we continue to learn from one another. And that has been really, really special for me. So thank you for being a consummate guest.

Anna Jaworski: And... 

Michael Liben: It has been a good give and take. 

Anna Jaworski: Yeah, it's been wonderful. It really, really has. I mean, you've been able to explain some of the technical aspects of podcasting, I really didn't know about. You've given me jargon. You've given me vocabulary and I appreciate that. 

Michael Liben: Thank you. 

Anna Jaworski: Yeah. You're amazing. 

Michael Liben: No, 

Anna Jaworski: you know, you're amazing.

Michael Liben: That's not for me to say that is not for me to say. 

Anna Jaworski: Well, I want to thank all of you again for being here. You all are so amazing. You took an hour out of your busy life. Annie's driving and she's still here with us. I mean, you guys are just fabulous. I love you all so much and I was really scared to do a live [00:50:00] show because like I shared, I have had some disasters with live shows.

Anna Jaworski: I wasn't sure that I really wanted to do this, but I thought it's time to shake things up. And you guys have made me a fan again of doing a live show, having a big studio audience like this. This has just been so much fun. I can't wait to do next month's. And I will do a live show the third Tuesday of the month in October, and November and December.

Anna Jaworski: And I hope that you all will join me for that again. It would be so much fun. And Joey, I hope you start your own podcast, baby. I know you can do it. You will be amazing. You have such a fantastic personality and I know you have things to share with the world that the world needs to hear. 

Joey Jaworski: Well, thank you so much for saying that because you've been very successful yourself.

Joey Jaworski: So that means a lot coming from you. 

Anna Jaworski: I love you, baby.

Joey Jaworski: I love you, too.

Anna Jaworski: Thank you so [00:51:00] much, everybody for coming today. That does conclude this episode of "Heart to Heart with Anna". Thanks for listening today. I'd like to take a moment again to thank our newest sponsor, HeartWorks. We're so excited to work alongside you as we all envision a world without congenital heart defects. Until that time, remember my friends, you are not alone.