Celebrating 11 Years: Heartfelt Reflections and Future Innovations in Heart to Heart with Anna

After an unexpected illness during a trip to Poland, I found myself in a reflective state, pondering the journey of "Heart to Heart with Anna" and what lies ahead. This episode is a heartfelt celebration of our 11-year milestone, filled with gratitude for the community that has grown alongside us. I introduce you to some key figures who've enriched our podcast, including producer Rita Scoggins, who shares her family's connection to the congenital heart defect (CHD) community, and Michael Liben, who reflects on his daughter's legacy through a grief-focused podcast. My husband, Frank Jaworski, Ayrton Beatty from Scotland, and Megan Tones from Australia also join us, highlighting the personal stories that have become the backbone of our show. 

Looking towards 2025, there's an exciting shift on the horizon as we explore genetics and heart conditions in new ways. The community's input is invaluable as we consider themes like children's perspectives on parental scars and embark on bilingual episodes for CHD families in South Africa. We also chat about potential guest experts, including cardiologists who specialize in electrophysiology and transplants, and an intriguing idea about Lyme disease's impact on heart health. These diverse topics promise to enrich our conversations and expand our understanding of the heart's mysteries.

Experimentation and innovation are at the heart of our future plans. I'm contemplating format changes, such as integrating personal stories and community news segments to keep our listeners engaged. The idea of varying the podcast's frequency presents its own challenges and opportunities, and I share reflections on the experience of running a daily podcast. With the potential for live shows and guest hosts, we're excited to keep the spirit of collaboration alive, ensuring our podcast remains a vibrant and dynamic space for shared experiences and support. Join us in celebrating the power of community and the exciting journey ahead!

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Chapters

• 0:00 November 2024 H2HwAnna Live Show
• 3:51 Introducing Our Producer
• 4:17 Meet the Studio Audience
• 14:34 Time to Brainstorm!
• 19:46 [Ad] TPMG Health Talk - A medical podcast
• 20:24 (Cont.) Time to Brainstorm!
• 26:36 Thank You to our sponsor, HeartWorks, and Disclaimer
• 29:04 Segment 2 Possible Changes to Heart to Heart with Anna
• 41:53 Short Break -Get in Touch with Us!
• 42:17 Segment 3

Transcript

[00:00:00] Merry Christmas and Happy New Years to all of my "Heart to Heart with Anna" listeners. Today I have finally finished editing this live show that I did in November with an amazing studio audience. And I'm going to get to that in a minute. I just thought I'd bring you up to speed on why it's been so quiet in the "Heart to Heart with Anna" world lately, I try to get a podcast posted weekly, but I decided to give myself a break when my husband and I went to Poland earlier this month, and it was a magical vacation. 

However, we both got sick. And, we're both now just starting to feel better. This is the last episode to be published in 2024, but I hope you'll come back next week. When I talk about what I learned in 2024, and I share with you some of the upcoming episodes for 2025, and you'll learn in this episode, some of the changes that I'll be making in 2025, [00:01:00] which is really exciting to me. When you're sick though, it gives you time to pause and reflect. And sometimes you wonder if you're ever going to get better. 

And if the things that you were worrying about really even matters. So it's easy to get apathetic and to lose enthusiasm. So while I was recovering, it made me think about what I'd like to do with "Heart to Heart with Anna" next year and if I was even going to continue podcasting. November 11th marked 11 years of podcasting for me, and there aren't a lot of podcasts out there that have been going strong for as long as we have. 

So I decided when I recorded this episode in November to focus on what I'm thankful for. And friends, I am thankful for all of you and all of the volunteers I work with regularly. (And sometimes not so regularly.) And for my patrons. And I had another thing to be thankful for this year, and that was our [00:02:00] very first Hearts Unite the Globe sponsor--HeartWorks. In this episode, you'll meet some people who work behind the scenes, a dear friend and a loyal listener that I've been trying to get onto the podcasts for years, and some CHD friends that I've known for a decade or longer. I hope you enjoy this fun podcast. And I hope you'll tune in on Tuesday as I take time to reflect on the awesome episodes that I recorded in 2024 and what's to come in 2025. Happy New Year! Now onto the show. 

Anna Jaworski: Welcome friends. I'm Anna Jaworski and the mother of an adult with a critical congenital heart defect. That's the reason I am the host of your program. Today's episode, just like the last two live episodes that we did, [00:03:00] is done basically on an unscripted show.

Anna Jaworski: That's, gonna put all of my Toastmaster skills to the test. For those of you who don't know what Toastmasters is, it's an international non profit organization designed to help people become better communicators. And Frank and I have both been members of Texas Stars Toastmasters for over two decades.

Anna Jaworski: That really makes me feel old. If any of you would like to visit our virtual only club right now, Let me know. Send me a note. We meet at 6 p. m. on Wednesday nights. That's a little late for you, Michael. And too late for you, Raadhiyah, but it might work for some other people. Let me know.

Anna Jaworski: We meet on Zoom, just like we're meeting here right now, and we would love to have visitors at any time. I'm so lucky to have some very dear friends with me here today, and I can't wait to get started.

Introducing Our Producer

Anna Jaworski: But I'm going to start by introducing my producer today, who is Rita Scoggins. Rita and I figured out today we have known each other for over 26 [00:04:00] years. So she's going to be the producer today. Rita, tell us a little bit about your connection to the CHD community, please. 

Rita Scoggins: My daughter and my granddaughter both have CHD.

Rita Scoggins: My daughter was born with a single ventricle and my granddaughter was born with PAPVR.

Meet the Studio Audience

Anna Jaworski: Thank you, Rita. And we became friends a long time ago, thanks to a LISTSERV, which most people who are younger than what, 40?, don't even know what that is. Another LISTSERV member who was a friend of my way back then is Michael Liben.

Anna Jaworski: Michael, introduce yourself and tell us your connection to the CHD community, please. 

Michael Liben: I am Michael and, I had a daughter with double outlet right ventricle. She was also autistic and she succumbed to epilepsy, sudden unexpected death in epilepsy. She was 15 and that was 12 years ago. And about that time, somebody came up with the idea that we needed a podcast on grief and somebody thought I should do it.[00:05:00] 

Michael Liben: And somebody was right, and we are finishing our 8th year, which is pretty cool. 

Anna Jaworski: It is super cool, and you've done a great job. Frank Jaworski is in the house. Frank is my better half.

Anna Jaworski: Frank, do you want to tell everyone your connection to the CHD community? 

Frank Jaworski: Well, my connection to the CHD community is legal because I'm married to Anna,

Frank Jaworski: but also I'm a father to an adult with a CHD and all the issues that go along with that, and I have been able to help in her pursuit of developing this wonderful communication extravaganza. I don't even know what you call it because there are podcasts and books and all kinds of stuff. I'm the guy that runs to the post office at the last minute to mail books.

Frank Jaworski: I'm the guy that makes sure that she has. Food to eat my connection is very personal. 

Anna Jaworski: It is. Thank you. All the way from Scotland hails Ayrton Beatty. Ayrton, please tell us your connection to the CHD community.

Ayrton Beatty: I'm Ayrton and I [00:06:00] lost my brother suddenly to an undiagnosed heart defect at age 19, 21 years ago. And I met Anna through a random friend suggestion. 

Anna Jaworski: Was it random? 

Ayrton Beatty: I think it was, yeah. 

Ayrton Beatty: And that was over ten years ago now.

Ayrton Beatty: And through Anna I've been able to work with "The CHC Podcast" and learn a lot more about the CHD community and talk about Edward a lot more, which is something I've never really done before. 

Anna Jaworski: And sadly, she also has an acquired condition, which is usually congenital. Ayrton's really the only person I know who has acquired Long Q-T syndrome, and she'll be coming on my podcast in 2025 to talk about that, which I'm super excited about. Okay, and all the way from South Africa is Raadhiyah Matthews. Raadhiyah, would you like to tell us a little bit about your connection to the CHD community? 

Raadhiyah Matthews: Hi, my name is Raadhiyah, and [00:07:00] my daughter has CHD. She DORV, TGA, PS, and VSD. And we started a nonprofit in South Africa, Brave Little Hearts South Africa.

Raadhiyah Matthews: And my daughter will be 14 in two weeks. 

Anna Jaworski: Oh my gosh, she's going to be 14 in two weeks. Wow, that's amazing. Well, thank you for coming all the way from South Africa. We've got Scotland. We've got Israel. It's really a global podcast today. And then Tracie Salgado, tell us where you're from and what your connection is.  

Tracie Salgado: Actually, I'm in Arizona. So yeah, I'm Tracie and it's me who's got the heart defect.

Tracie Salgado: I have a rare heart condition. High grade AV block, intermittent between type 2 and 3, and I'm managed with a pacemaker, but, yeah, found accidentally when I passed out driving 60 miles an hour down a highway with a child in my car, 

Anna Jaworski: Which is a terrifying story. Tracie actually wrote an essay for "The Heart of a Heart Warrior," our latest book [00:08:00] published by Baby Hearts Press. And yes, my heart was racing when I was reading your essay, because I could just imagine what it would be like to have my little one in a car and I pass out from a diagnosed condition.

Anna Jaworski: Just amazing. 

Tracie Salgado: He was great. He was eight years old and he knew exactly what to do and he got the help that we needed and we ended up both okay. He's the real hero of the story. 

Anna Jaworski: Nancy Jensen hails from Arizona as well. Nancy, tell us about your connection to the CHD community. 

Nancy Jensen: Well, I met Anna and Michael many, many years ago on that listserv and also Rita. I was on that because my daughter, Jessica was born with many heart defects, pulmonary atresia, tetralogy of Fallot, and quite a few other things. She also had ischemia of the bowels, DiGeorge syndrome. She had five heart surgeries and two strokes. And we found out that she [00:09:00] was not going to survive her heart defects all by the time she was seven. And she survived to celebrate her 22nd birthday.

Nancy Jensen: She remained at the level of a young child, was on oxygen and in a motorized wheelchair for about 17 of those years. And she was just the light in our lives and quite the joy. Two years later, when Liel passed away, Michael's daughter, I was able to help Michael update the groups. And we developed an even stronger friendship at that time.

Nancy Jensen: And when Anna asked Michael to do the bereavement podcast, he said, only if Nancy would be my first guest. And then I was helping Anna with the digital artwork and ended up producing for we're going on. Year nine. 

Anna Jaworski: I know. Yeah. And here we are. It's just a super crack [00:10:00] team. I'm so, so blessed to work with both of them.

Anna Jaworski: And I have Ayrton helping out with "The CHC Podcast." It's really been a joy to work on all of these different podcasts. But one of my favorite script writers in the entire universe is Megan Tones, who hails all the way from Australia. And she is the reason why we're meeting at four o'clock today, central time, instead of our usual 11 a.m. Central Time, because I wanted Megan on the show. So welcome, Megan. Tell us about your connection to the CHD community. 

Megan Tones: Thanks, Anna. Hello, everybody. I think I've met most of you before. I'm Megan Tones. I'm from Australia and I met Anna in, I think it was 2015 when I first appeared on the show as a guest on "Heart to Heart with Anna" with one of my friends. So I'm 41, nearly 42. I was born in [00:11:00] 1983 in Brisbane, Australia, and my heart condition was picked up when I was about a week old. My mom noticed that I was falling asleep, feeding and still gaining quite a lot of weight, which didn't make sense.

Megan Tones: Doctors at the hospital had a look at me and sent me straight off to Prince Charles, which is the big heart hospital where I live. There they found out that I have a large VSD. So I've had a few surgeries over the years for that, three open-heart surgeries in total. 

Anna Jaworski: And Megan also wrote for the book that Tracie wrote for. And Megan was my co-editor, which is really awesome because she helped me with transition material and she submitted four essays. We worked on that book for four years, so we kind of became really close family, didn't we? 

Megan Tones: Yeah, yeah, we did. And I've had a lot of good [00:12:00] feedback about the book as well. My cousin is actually a medical doctor and when I saw her recently, I gave her a copy of the book and she has a nine-year-old daughter and she just snatched the book out of my cousin's hand and started reading it. So, yeah, I guess, she couldn't put it down and then she brought it back and asked me to sign it and put a message in the front and everything. So that was really nice. 

Anna Jaworski: That's very sweet. 

Megan Tones: Yeah. And my cousin's actually a pediatrician, down in Newcastle so I'm sure that she would actually meet a lot of families with young children with CHD. So, yeah...  

Anna Jaworski: Hopefully these essays will provide some support and inspiration to maybe some of the patient's parents that she meets if they need a little dose of inspiration. So many different conditions are actually covered in that book, just like we have so many different conditions that are covered here. And last but [00:13:00] not least, but actually the first time on "Heart to Heart with Anna" so I am super excited... Cindy, please introduce yourself and tell us about your connection to the CHD community.

Cindy Moreland: I didn't realize I was going to have to talk. I'm Cindy Moreland. I live in Lockhart, Texas, born with tetralogy of Fallot in 1955. In March, I will be 70 years old, which is hard to believe. I also had a sister with aortic stenosis and she passed away when she was 59 and my mother also had heart problems all her life.

Cindy Moreland: And I do think that she probably had a heart defect that was never detected. I have two kiddos that are, great. We haven't passed down any more of that gene. But, anyway, that's my story. 

Anna Jaworski: Yeah. It's amazing because you had [00:14:00] your children naturally and you're a grandmother.

Cindy Moreland: Yes. Yes. I have two children and they're old because I'm old. So I have three grandchildren. My daughter has three children and the oldest one will be 18 this week, and she's graduating and going to college. That is mind boggling to me. 

Anna Jaworski: That is mind boggling to me as well. And I've been so blessed to know Cindy.

Anna Jaworski: We've had a chance to get together and have dinner together, and it's been a lot of fun. 

Time to Brainstorm!

Anna Jaworski: Okay, folks! It's almost 2025. I cannot believe how fast 2024 has gone.

Anna Jaworski: It's just flown. And I am picking people's brains to find out what kind of shows you think we need to do in 2025, and especially if there's a show that you would like to be a guest on. Ayrton has already offered. She's already on my list. I just need to get her script written.

Anna Jaworski: So Megan, that's one of the scripts [00:15:00] we need to write is one for Ayrton. And Michael suggested a show, but we might need to find some guests. So I might have you go ahead and suggest that again on this show. So if somebody is listening and they say, "Wait a minute, that's me!" they can reach out to me or go to our website, which is https://www.heartsunitetheglobe.com.

Anna Jaworski: And go to Be a Guest and then you can fill out the form and we'll create a script for you. So Michael, let's go ahead and start with you so you can hopefully find somebody for your great idea. 

Michael Liben: I've recently had my heart surgery. My first, maybe more, who knows. I've had heart surgery, and of course, Liel's been gone now for 12 years, and she was autistic, but I would love to have seen her reaction to my one day not having a scar, and one day having a scar.

Michael Liben: And to see what she thought about it. And I thought maybe we could widen that out a little bit. It doesn't need to be an autistic child. Just a child who's had a scar since being a [00:16:00] baby and suddenly a parent comes home with the same thing. What does that do? What do you think? Do you want to talk about it?

Michael Liben: Or I don't know, but I think it might be interesting to look at that angle. No, one's done that before. 

Anna Jaworski: No, I definitely have not done that show before. So if you're listening to this show and you fit the bill or you know, somebody who does, please let me know. Is there anybody else who has a suggestion?

Anna Jaworski: And while you're thinking about that, I'm really excited that Raadhiyah is here because she is going to help me with some programs for 2025. We're actually going to have some episodes that are bilingual. They will be both in English and in Afrikaans. Do you want to talk just a little bit about that, Raadhiyah? 

Raadhiyah Matthews: Yes, in South Africa, we have 12 official languages. So we're going to try and do one of the languages, which is Afrikaans to reach another, group of people that are not reached who don't really understand English, which is our main language.[00:17:00] 

Raadhiyah Matthews: So we're just trying to reach more CHD families out there to try and give them some help and advice. 

Anna Jaworski: Exactly. And we're working with some of the volunteers that Raadhiyah works with at Brave Little Hearts South Africa. So we're super excited about that. And we even have a doctor lined up. Once we have a couple of shows under our belt, then we're going to invite one of the doctors to come on the program and Raadhiyah will be the guest host, which I'm super excited to see you do that, Raadhiyah. So thank you for offering to help. This is going to be a lot of fun.

Raadhiyah Matthews: Yeah. It's going to be a lot of fun.

Anna Jaworski: Frank, do you have any suggestions for episodes that we should do in 2025?

Frank Jaworski: I'm sure I will, but I can't think of anything right now. 

Anna Jaworski: Okay. So on Saturday, we went to one of the doctors that you work with, we went to his house for a Christmas party and he offered to come on my Spanish show to talk in Spanish about electrophysiology.

Anna Jaworski: Do you think I should have him on [00:18:00] "Heart to Heart with Anna" as well? 

Frank Jaworski: He's not a pediatric cardiologist, so I don't know if that would be appropriate or not. If you want to, sure, I think he'd be willing to go with whatever you wanted to, and he would relate to your audience.

Anna Jaworski: Well, my audience is pediatric and adult, so a lot of adults end up with electrophysiology problems, even if they didn't have them as children. As poor Rita knows, because her daughter, Victoria, certainly has had her share. Hasn't she, Rita?

Rita Scoggins: She just had another one about a month ago, 

Anna Jaworski: Tracie, I saw you raise your hand. 

Tracie Salgado: Yeah, I had an idea. So actually I have two. My sister works in cardiology. She works with a team who does transplants, all organs, but cardiology is kind of their specialty area. And I wonder if she would be interested in talking with you about transplants and for people who've had heart issues and then have gone on to a transplant or a transplant and then have had heart issues.

Tracie Salgado: [00:19:00] She deals with both actually. Her main responsibility is long-term care afterwards to make sure that patients have the best outcomes with their heart condition and/or their heart transplant. So that was it. Cindy had said that the genetics came and went and there's been nothing else down the line. There's never ever been a history of anything heart-related in my family ever. I'm not sure how that works, but there's a theory though that it's not quite genetic and that it might have been caused by undiagnosed Lyme disease.

Tracie Salgado: And I'm wondering if you have somebody in your world that specializes in that and that could come on your show and talk about how undiagnosed Lyme disease can cause heart conditions. 

Anna Jaworski: Okay, Tracie, you are the first person to talk to me about that. So genetics and/or Lyme disease and heart connections, Dr. Paul Grossfeld will be coming on my program in [00:20:00] 2025. And he has been doing extensive research into the genetics of hypoplastic left heart syndrome. But since he is working in genetics, I can see if he knows anything about this, especially Lyme disease and a congenital heart defect. That's fascinating. It makes sense. Especially if the mother is pregnant and has Lyme disease, then perhaps that would cause a problem because I know it attacks the autoimmune system. 

Tracie Salgado: Or the other theory was that there's an underlying genetic component and, the Lyme sort of wakes it up because it affects your immune system and it's just all-encompassing.

Tracie Salgado: And then it sort of wakes it up is the words that they used with me that, okay, maybe it's not fully genetic. It never came out until you got sick and then your body was weak and then the heart condition made itself known. 

Anna Jaworski: I like those kind of shows because a lot of times it'll be the first time I've ever heard of [00:21:00] that. And then it's just like when you get a new car, once you have a new car, you see all these new cars on the road. A lot of times when I have somebody who comes on the show and it's the first time I ever heard of that, after that I have two or three other people who come to me with the same condition and I realize it's not quite as rare as I thought. Yeah. And sometimes it just takes us having that first conversation to open that up. So yeah, I wrote those down. Those are awesome. 

Rita Scoggins: We kind of wondered with our granddaughter, because of Victoria having a heart defect, if it was genetic. But the doctors have said 'no.' But you kind of wonder. I mean... 

Anna Jaworski: I still think there's a lot that they don't know about genetics, and I'm really eager to have Dr. Grossfeld on the show because I don't think I've had a geneticist on the program for at least five years, and I just find genetics fascinating.

Anna Jaworski: I think it'll be really interesting. 

Nancy Jensen: So speaking of genetics, if I could real quick... when Jessica was about a year [00:22:00] old, we were approached by the pediatric cardiologist and they said that they had noticed that five or six of their children kind of looked alike. So they did a double-blind study with genetics and we were the ones that were here in town and they had to go around southern Arizona to work with some of the other parents.

Nancy Jensen: We were the only ones to do the genetics test. And that's when we found out that Jessica had DiGeorge syndrome. And because of us, they went to the other families and the five that looked similar all had DiGeorge syndrome. And they didn't know about it because only some of the symptoms were there.

Nancy Jensen: So then they tested Carl and I to see if she got it from one of us and on the fish test, they kind [00:23:00] of lined up on top of each other and one chromosome, I think it's, 22. Anyway, it looks like I only had one or maybe my mom and dad's were on top of each other. So the next time my parents came to town, they did their blood tests.

Nancy Jensen: And my mom and dad both have one that are on the same line So most likely I don't have it. I did not pass it on to Jessica but there's no way to confirm it for sure. But they said that Jessica would have had a 50% chance of passing on that deletion to her child. It was a very interesting study. 

Anna Jaworski: Yeah, that does sound interesting.

Anna Jaworski: Cindy, did you have a suggestion for a show? 

Cindy Moreland: I just wanted to clarify that genetics is what I've always said just because of my sister and me thinking that my mother had some kind of heart defect, but I asked my doctor to do a genetic [00:24:00] test on me and there was no genetic factor.

Cindy Moreland: I don't know if it's strange to happen in two out of three kiddos in one family... 

Anna Jaworski: Doesn't it make you wonder, Cindy, though, if maybe the test just isn't sophisticated enough right now to pick it up? Because if you look at genetic testing that was done 20 years ago, that looks completely different from the genetic testing that they're doing today.

Anna Jaworski: And for those of you who don't know, Cindy is a nurse, so she knows a lot more about medical stuff than I do. 

Cindy Moreland: Yes, I mean, who knows? It may not be able to be recognized at this point, and maybe later, it will, I don't know, but my daughter had, fetal echoes when she was pregnant and my son and his wife don't have kids yet, but I think when that time comes, they will probably want to do that also. 

Rita Scoggins: My [00:25:00] daughter-in-law had fetal echoes, too, but they didn't find her defect until she was 18, actually, or 16. 

Tracie Salgado: Wow. My son just had his first child and, his wife, her brother has a very interesting heart defect and they had to do fetal echoes with the baby just because of mine. And then she has it on her side. So the doctors were really worried about it. And then when he was born five months ago, he spent a week/ 10 days, something like that in the hospital. He wasn't breathing on his own. And they were saying that his respiration was being affected by something with his heart.

Tracie Salgado: I didn't get quite all the right information. They're very young. They're learning all of the medical language and all that stuff, remember back then when you guys were there, too? So it'll be interesting to see. I pray to God that this little guy doesn't have any issues. 

Anna Jaworski: Yeah, me too. Absolutely. 

Thank You to our sponsor, HeartWorks, and Disclaimer

Anna Jaworski: Although [00:26:00] this is a live show, I'd like to take a brief moment to thank our newest "Heart to Heart with Anna" sponsor. So thank you to HeartWorks. And for those of you who don't know about HeartWorks, it is a nonprofit organization whose mission is to find a cure for congenital heart disease. I think the most important thing for everyone to know about HeartWorks right now is that #1) they want to find a cure for congenital heart defects, which is great.

Anna Jaworski: They want to get to the root of the problem. And #2) in order to do this, they have created a co-op, which is also called the Matrix. This is something that most of us in the CHD community can actually help with because it will be a repository of data shared by members of the CHD community. So are you the parents of a young child who has a congenital heart defect?

Anna Jaworski: You can join the co-op. Are you a bereaved parent of a child who was born with a congenital heart defect? You can join the co-op. Are you an adult with a congenital heart defect? [00:27:00] You can join the co-op. So the only people who can't join that co-op are Frank and me right now because our child is an adult.

Anna Jaworski: We can encourage our child to join, but we can't do it. So they take the medical data that is given to them. They have this great program that they can use to analyze millions of pieces of data and then they see what the commonalities are and they create the research projects based on their patients.

Anna Jaworski: This is revolutionary. This is not the way it's normally done. Normally a bunch of scientists will say, 'Hey, why don't we do a study about this?' And then they have to go find the people. Instead, they already have the people. They're finding out what kinds of problems there are, and then they're creating the research to try and solve those problems.

Anna Jaworski: If you want to help find a cure for CHDs, join the co-op and all you have to do is visit https://www.webuildhearts.org [00:28:00].

Disclaimer: 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 CHD community, and the opinions expressed in this episode are not those of Hearts Unite the Globe, but of me, the host, and our guests. And our discussion today is just to help me plan for 2025 and to answer questions my friends here might have, and to share stories.

Segment 2 Possible Changes to "Heart to Heart with Anna"

Anna Jaworski: In this segment. Let's talk about three changes I'm thinking about making to Heart to Heart with Anna. I'm just starting to record episodes for 2025 and I think I'm going to do some different things but I need your feedback to help me. Three changes-- #1) I'm thinking about doing a completely new opening. I've been listening to another podcast and the host told us that one of the big changes she made after a while was that she started [00:29:00] sharing personal stories at the top of her show.

Anna Jaworski: And then after that, she would do a little bit of news. And then her third segment was always the interview. When I first conceived of the idea for this podcast, I thought about doing something very similar to that, and then ended up changing my mind before I recorded the first episode. So my question to those of you who are here: Do you think it's a good idea, number one, for me to share personal stories, and if so, what? And number two: What do you think about me sharing little tidbits of news in the CHD community? Should I do something like that, or should I just leave it the way it is? 

Rita Scoggins: What kind of news are you talking about, Anna? 

Anna Jaworski: I would be talking about, like today... I was a guest speaker at a cardiology conference, so when I find out about conferences that are going on, I could put that in the news. If there are summer camps that have opened their registration, any kind of [00:30:00] heart news like that. And also if there's a news article, if somebody famous is born with a heart defect or somebody has surgery or there's some other kind of newsworthy item. So I would always be perusing the news to see what kind of information might be of interest to our community. 

Nancy Jensen: That sounds really good because a lot of us don't know that kind of thing. And also I absolutely love hearing other people's stories. That's one thing that I really enjoy being the producer of "Bereaved But Still Me" is hearing people's personal stories. So I always love hearing that. 

Anna Jaworski: What kind of stories? Only heart stories or would you care about my garden? 

Tracie Salgado: I like your flowers. 

Michael Liben: There are dinosaurs in that garden.

Nancy Jensen: Yes, there are. 

Michael Liben: I'm going to just let that sit there for anyone who doesn't know what that means. There are dinosaurs in that garden. 

Ayrton Beatty: Yeah, I've heard all about the dinosaurs in the garden. 

Anna Jaworski: You just need to come to Texas [00:31:00] Ayrton and get your picture taken with some of the dinosaurs. They don't bite.

Michael Liben: I'm totally for that. I'm totally for that. 

Anna Jaworski: Okay, so you like the idea of changing it up and having some news and maybe a little personal story at the top. It's interesting because this other podcast I listened to is Joanna Penn, and I absolutely love her. And she will talk about places that she's going on vacation or cool things that she has seen or done, or if she's having a book signing, because, like me, she's also an author. And she said that she has had people write to her who have said, 'I really didn't care about the guests you had that week, but I had to tune in to see what you said at the top of the show.' And I thought, 'I never really thought about it that way.' If I'm talking about transplant or if we're talking about genetics or something like that, that somebody's not interested in, they may still want to tune in to hear what the news is and to maybe hear a little personal story. 

Nancy Jensen: That's a really good point. 

Michael Liben: That's a kind of double-edged sword though. Because if someone doesn't want to hear a personal story, then you've lost them for the [00:32:00] entire half hour. If they do want to hear a personal story, they'll probably stay to the end.

Michael Liben: Same thing with news. If they're interested in the news, they'll hang around. If they're not, they're gone. That's a hard thing to gauge because you can't please everybody and there will always be somebody who wants everything. 

Anna Jaworski: Yeah, that's true. So, Buzzsprout and I think Spreaker both now allow us to put chapters in our show. I could put Chapter One: Anna's Stories, Chapter Two: CHD News, and then Chapter Three: The Interview. And then I think that if they're on their phone, they can hit the forward button and it'll take them to the next chapter. So they don't actually have to listen to the whole thing if they're not interested.

Michael Liben: Yeah, that's amazing that people can't listen to a half hour now. We've gone down from a half hour to a third. 

Nancy Jensen: 30 seconds is about my limit. No, I'm joking, but Anna, over the years that we've worked together, I have truly enjoyed getting to know [00:33:00] you. So I think that having a host put a little bit of a personal touch on it, that might be kind of cool. 

Anna Jaworski: Thank you, Nancy. Tracie wants to say something first. 

Tracie Salgado: Yeah, do you, um, did you know that you can do a Google alert for different topics so you don't have to peruse on your own, it'll come to you.

Anna Jaworski: Yes, ma'am. I absolutely do. 

Tracie Salgado: Makes your life a little easier. 

Anna Jaworski: I absolutely do. And yes, I do get those alerts. So yes, I was excited about that because, I thought this would give me something to do with all of that information because I'm constantly gathering information and I'm glad you brought that up because I used to get all of that information and when my webmaster was Brenda Vignaroli, we had a page on our website that was devoted to news.

Anna Jaworski: And anytime I came across interesting articles or we would hear of another interview that would be done on another podcast or television program or a movie that we thought was important, we would put all of that [00:34:00] on the website. Well, guess what happened to the website? It just exploded. There was so much data that it was really hard to organize it.

Anna Jaworski: And she and I struggled multiple times trying to put different categories to make it easier. And then finally we both decided, most people today know how to use a search engine and they can find that information themselves, but I think just giving a short five-minute or 10-minute news segment at the top of a show and then putting the links in the show notes,

Anna Jaworski: I think that might be a way that if people are interested, especially brand new people to the CHD community, who maybe haven't heard of some of this stuff, that might be an easier way for them to find the information. Raadhiyah, I'd like your take on that because we're right now trying to create some resources for those in South Africa.

Anna Jaworski: Do you think that that would be something that they would find helpful with the episode that we want to do for you?

Raadhiyah Matthews: I [00:35:00] do. And, also, I think the personal touch, personal stories that works very well, especially in South Africa, because we like to hear personal stories from other parents as well. So I think that will work very well. 

Anna Jaworski: That means that you get to share a personal story since you'll be the guest host.

Anna Jaworski: You get to share a story about your sweet daughter and I think that'll be fun for you too, won't it? 

Raadhiyah Matthews: Yes, it will. 

Anna Jaworski: Awesome. Potential change #2: I've been thinking about changing my podcast from a weekly to either a monthly or a daily, and I know it's crazy to think about a daily, but I would not do a daily unless I had a core group of volunteers who offered to help me and we could do batch recordings.

Anna Jaworski: So for those of you who think 'Anna, you're crazy.' I know Michael thinks I'm crazy. I have done daily podcasts before-- 

Michael Liben: In a good way 

Anna Jaworski: --only for the month of February as a means to promote congenital heart defect [00:36:00] awareness. And when I did that, I had a theme for each day. So I remember Thursdays were Tasty Thursdays and we covered recipes. Sundays were Heart Dad Sundays and Frank was the guest host, and as a dad, he interviewed other dads, which was really interesting. Mondays were Medical Mondays. I interviewed doctors and other people who worked on the medical side of CHD. Tuesday was still "Heart to Heart with Anna." Wednesday was Mental Health Wednesday.

Anna Jaworski: So every day of the week had a special theme. And what I would do is I would batch record. In a week, I would record all of the episodes for that month. So if I were going to do it, I would need a team to help me because that's a lot of editing. And that's a lot to promote. 

Nancy Jensen: Girlfriend, you already have so many things on your plate.

Nancy Jensen: I think... 

Anna Jaworski: Yeah 

Nancy Jensen: ...that a daily would just be way too overwhelming. I would support, and I've already encouraged you, to go to [00:37:00] monthly or maybe twice a month or every other week because... of all the things you do. 

Anna Jaworski: As a weekly podcast, I get about a thousand hits a month. Well, anywhere from 500 to 3000.

Anna Jaworski: It's crazy. I have great variability in "Heart to Heart with Anna." When I was doing a daily show, I had 3000 hits that month. When I do a monthly show, the number of hits that I get on my show drops dramatically. It's a huge decrease and what we're trying to do is promote awareness. So I worry that if I go to less than weekly, that we just won't be found.

Anna Jaworski: We just won't be listened to. 

Michael Liben: We know from our own experience... I do a monthly. It's difficult enough for me to balance when I am working or when I'm recovering, with recording and editing and whatever else goes on. We also know that when it's just the three of us, it's really a lot of work.

Michael Liben: We [00:38:00] also know that you can't always hold on to volunteers for whatever reason and we talked about this. When your volunteer has a congenital heart defect, as most of our volunteers do, then you're going to have to accept that once in a while, they're going to disappear for a while just because they need to, and I think the quality also suffers for it because when you have a month or actually we take a year to find guests ahead of time, we get to know them and we're prepped and (a lot of people don't know this, but we do a pre-interview, which means we do a whole mock-up show before we record by at least a week.

Michael Liben: You're not going to have the time to do that on a weekly. You're just not going to have it. 

Anna Jaworski: I already have a weekly show, Michael. I've done a weekly show for 11 years.

Michael Liben: I know, I know, but I'm sorry, I meant daily, I meant daily. 

Tracie Salgado: I guess, Anna, I would tell you, your passion is this, and your heart--no pun intended is in this-- you would have to decide. I think 'Would people like more information?' Obviously, because they tune in [00:39:00] more with your show when it's weekly, statistics showed, than when you did it monthly, but that would have to be your decision. Would everyone like more information?

Tracie Salgado: Yeah. But can you do that? And can you do it to the caliber that you're doing it now? That's something to consider. 

Michael Liben: And consistently hold on to that caliber. That's the thing. 

Ayrton Beatty: Yeah. Yeah. 

Anna Jaworski: It's tough. But I wanted to hear what people had to say. 

Michael Liben: If you were a television, if you were a television news organization with a staff as long as my arm and everyone was getting paid, then yeah, I think you could probably do it.

Michael Liben: And that would be your job. And everything else would have to fall away. And if you're not willing to do that, and if you can't pay for a staff, then I don't really think you can do a daily program. You would quickly fall into that, I'm-not-impressed category, because at some point, people would be speaking to have something to say to keep it on the air, and that's not good enough. 

Anna Jaworski: Right. 

Michael Liben: That's not good enough. 

Anna Jaworski: That's true. 

Michael Liben: Yeah. 

Anna Jaworski: So, stick with the weekly, maybe consider going to a monthly?

Michael Liben: I definitely recommend monthly just for your health. 

Anna Jaworski: Well, what do you guys think about this live show? I'm [00:40:00] having so much fun. This is the third one for me to do in 2024. And I was wondering if it's something I should continue in 2025. 

Michael Liben: Yeah, live is great. 

Ayrton Beatty: Yeah, it's fun. 

Michael Liben: As an editor, I'm telling you live is fun. 

Nancy Jensen: This is fun.

Anna Jaworski: Okay. You guys have given me something to think about. Okay. So number three potential change: way back when, (and Rita, you will remember this), way back when, in season two and season three, I used to have guest hosts every now and then, and lately I haven't done that. What do you guys think about having some guest hosts in every now and then, or for a particular person to be a guest host?

Anna Jaworski: What do you guys think about that? 

Michael Liben: That really for your health is a good thing. You should take a break once in a while. 

Nancy Jensen: Yes, I agree. 

Michael Liben: Thank God, when I was home recovering, Nancy was able to step in and guest host two episodes. And that was the first time I was out. The second time, it's been working, but, [00:41:00] it's really hard.

Michael Liben: It's really hard. And even if I were healthier, I think I would be very happy to take a month or two off. Maybe in the summer, or maybe connect it with some kind of real-life vacation. Who knows? But it's good to step away for a while. I, definitely, think so. 

Anna Jaworski: Thank you. 

Short Break -Get in Touch with Us! 

Friends, I love it when you give me feedback on "Heart to Heart with Anna," just like these wonderful people are giving me feedback right now.

Anna Jaworski: You can always send me messages on Facebook, Instagram, LinkedIn, or via email at Anna@hearttoheartwithanna.com, or you can send me a message on our website, which is https://www.heartsunitetheglobe.com and there's a box there where you can send a message, and I actually do get those. 

Segment 3

Anna Jaworski: And now in this third segment, I would love to invite people to share a favorite episode, make a comment about an episode, or share a story with us.

Anna Jaworski: And if you want to share a story, let's share a story about thankfulness, because I have so much to be thankful for. So I'm going to go first. and I am thankful for all of you [00:42:00] being here and for being part of my life. You all enrich my life in so many ways. I look forward every Sunday to seeing Ayrton and Alfie. Her sweet cat gets annoyed every week when we work on "The CHC Podcast." Every Thursday, I love seeing Michael and Nancy working on "Bereaved but Still Me."

Anna Jaworski: All of you have meant so much to me, and I just want you to know that I feel very, very blessed to be working with all of you. Does anybody else have something they'd like to share? Michael? 

Michael Liben: Yeah, my roots were in radio. When I was in college, I started doing radio and, when podcasting became a thing, I said, "Gee, I really would love to do that, but I don't have anything to talk about that anybody would want to hear. I don't have anything to say of any value." And you gave me something to talk about. So thank you for that. For that, I am extraordinarily grateful. This I think is meaningful and I know it is because people come up to me and tell me it's meaningful. So [00:43:00] I'm very pleased about that. Yeah. 

Anna Jaworski: Thank you, Michael. Megan has her hand raised.

Megan Tones: Yes, yeah, I just wanted to say that I'm grateful for the opportunity to have worked on putting that book together, and getting people's stories out there because I think if I was just trying to do it by myself, it wouldn't have happened. So thank you, Anna, and everyone who supported us to get that done because it was a huge lot of work and we couldn't have done it without the support of everyone who was behind us.

Megan Tones: So thank you. 

Anna Jaworski: Yes, absolutely. All the contributors, the parents of the contributors whose arms I twisted to get their kids to write for the book. All of the people who participated in the Kickstarter. You're right. It really did take a village. 

Megan Tones: Our families, you know, 'cause we spent a lot of time working on it. So... 

Anna Jaworski: Yes, Frank feeding me while I was meeting with you and we were editing. [00:44:00] Absolutely. Ayrton, did you have something you wanted to share? 

Ayrton Beatty: Yeah. I'm thankful for the opportunity to meet you and Frank that time in Edinburgh and I'm thankful for the chance to work with you on "The CHC Podcast." It's meant a lot to me to work with an amazing group of people, spreading awareness, and it helps to talk more about Edward.

Anna Jaworski: Yeah, it's been really nice to learn more about you and your family and to get to know Alfie a little bit better. It was so much fun to meet you in Edinburgh. And every time I see you, I say to Frank, "It's been a while since we've been to Edinburgh. I think we need to go back to Edinburgh" and he agrees with me. Thank you for saying that. You've been a joy to work with as well. Nancy?

Nancy Jensen: Yes. So Jessica was my full-time job for over 22 years. [00:45:00] She needed me 24/seven. We both had separation anxiety and after she passed away, I had a really, really, really difficult time.

Nancy Jensen: It was just really wonderful to be able to work with you and Michael on the bereavement podcast, hear other people's stories, hear how they were able to turn their pain into helping others. Jessica's biggest fear was that she would be forgotten and you've given me the space to talk about her, to share her amazing spirit, tenacity joy, love, innocence, and you've really given me that space.

Nancy Jensen: Being on the "Bereaved But Still Me" podcast has given me something very productive to do. I love helping others. I was also a guest on "Heart to Heart with Anna" a couple of [00:46:00] times before "Bereaved But Still Me." 

Anna Jaworski: Yes 

Nancy Jensen: And the relationships that I have developed through the podcasts are just incredible so I'm extremely grateful for this opportunity. Not only to develop and help myself, but to also help others. 

Anna Jaworski: I love that servant's heart. I think that's one of the things that makes you so special and really everybody here. I think we all fall into that. Well, friends, I can't believe that our time is up already. I have loved every minute talking with all of you. This has been so much fun, and I so appreciate the feedback that you have given me.

Anna Jaworski: I am going to be making some changes in 2025, and I think it'll be a lot of fun. I hope you'll be coming to some of these live programs because it looks like, yes, people do enjoy the live shows. I meant to tell you the statistics for the live shows are comparable to the statistics for the interview shows, so I think people do enjoy listening to the live shows [00:47:00] as well. So I hope everyone has a wonderful week. Cindy, I'm so happy that you finally came on the podcast. I didn't know what it was going to take to twist your arm to get you on the program. So yeah. Yay! I'm so glad you made it. 

Cindy Moreland: Surprise, surprise. 

Anna Jaworski: It was a delightful surprise, and I will be seeing all of you, I hope, sometime in the near future, certainly before 2025.

Anna Jaworski: I hope all of you have a wonderful day.

Anna Jaworski: That concludes this episode of "Heart to Heart with Anna." Thanks to all of the people who took time to be part of our live studio audience. And special thanks to my producer, who had to leave because we ran a little bit long. But I so appreciate Rita. She's been amazing throughout this entire podcast journey. Rita has stuck with me through the whole 11 years.

Anna Jaworski: She has just been amazing. And she offered to be the producer today because Rachael, who was my producer last month, unfortunately, is ill today and wasn't able to do it. So I [00:48:00] want to thank Rita. I want to thank all of you who are here in the studio today and all of you who took the time to listen to the program.

Anna Jaworski: Please send me feedback. I really do care what you have to say. Thanks again to our newest sponsor, HeartWorks. Nancy asked a question. Does the CHD child who died have to have died as a child? And the answer to that is 'no.' In fact, the more data they get, the better.

Anna Jaworski: So if you have a child with a CHD who died as an adult, that does not mean you cannot be part of the program. You certainly can be part of the co-op. And I recommend that you check out webuildhearts.org and sign up to be part of the co-op. We are so excited to be working with HeartWorks and their vision of having a world without congenital heart defects.

Anna Jaworski: I think that's wonderful, but until that time, my friends, remember you are not alone.