Heart to Heart with Anna
Revitalize your spirit and connect with the vibrant congenital heart defect (CHD) community through 'Heart to Heart with Anna,' the pioneering podcast that has been inspiring and informing listeners since 11-12-13. Join us as we dive deep into the personal journeys, triumphs, and challenges of Survivors, their loved ones, esteemed medical professionals, and other remarkable individuals within the CHD community.
With unwavering dedication, our heartfelt conversations bring to light the stories that need to be heard. Gain invaluable insights, expert advice, and a sense of empowerment as we explore the multifaceted world of CHD. Our mission is to uplift, educate, and enrich the lives of every member of this incredible community.
Embark on a transformative listening experience where compassion and understanding thrive. Discover the resilience and unwavering spirit that resides within each person touched by CHD. Together, let's build a community where support and knowledge flourish, bringing hope to the forefront.
Tune in to 'Heart to Heart with Anna' and embark on a remarkable journey that will leave you inspired, enlightened, and connected to the beating heart of the CHD community.
Heart to Heart with Anna
Navigating Personal Advocacy: Empowering Journeys in Heart Health with Emily Falcon and Anna Jaworski
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I was born in 1982 and I had a heart attack at seven weeks old, and although one in 100 babies in the US are born with a heart condition, mine occurs in one in 300,000 babies, so it's pretty rare happy heartband to all of my wonderful listeners I am super excited today to say that I had a chance to take part in an interview with emily falcon and jenn Dimas from the Fort Worth Public Library.
Speaker 2:These ladies were absolutely delightful to talk to and so perfect for us to do it right at the beginning of apartment. This is the first week of February and Jennifer Dimas told me that I could use this recording and share it on my podcast For 2025,. I've been sharing a little bit of a personal story and then a little news and then the interview, so I wanted to share that. Today I will be leaving to go on a cruise with my sister. Not everybody knows this, but my mother passed away in 2018. After she passed away, my sister and I decided that every year around my mother's birthday, we would get together to have some sister time. We would go to Galveston to visit mom's grave and just have some quiet, quality time together. We're both such busy professionals that we don't often make time for each other, but we felt this was something important and this was something mom would want us to do. This is our first time to go on a cruise together and we're super excited about it, so I am happy that I can share Emily and me talking about chronic illness and how literary devices, such as books, can be helpful to people who are living with chronic illness. I think that this is perfect for Heart Month. So that's my little story and as far as news, it's Heart Month. We're going to have so many interesting interviews this month. We'll be starting next week with an interview with Dr Paul Roosevelt and he's going to be talking about the genetics behind hope, of fonsic, left short syndrome and what they have discovered. I'm really really excited about that. If everything goes according to plan, we will be having, at the end of the month, our very first discord experience.
Speaker 2:I've been working with a couple of volunteers to help me create a discord channel that will not only be for Heart to Heart with Anna, but it will be for all of the podcasts in the Hub Podcast Network. It will give us our own server and place where we can listen to episodes of the podcast together with you, our listeners. But what's very amazing is we will have our guests in the studio with us. So, those of you who are listening to the show, if you have a question that you would like to ask the guest, you can do that. We'll be starting with my daughter, hope, and I'm very happy that we'll have a chance to do this because I think we'll be able to reach some people that maybe we haven't reached before. How awesome is it that we can talk to people who have been on the program before and maybe you listened to an episode and you thought why didn't Anna ask this question or that question? Well, now is your chance. Play the Interviewer. Now is your chance to ask your question and get it answered by the guest.
Speaker 2:Some of the people who have told me that they're willing to learn Discord and come into Discord with me are Hope, my daughter, and she's the one who got me interested in Discord to begin with. Rita Stoggins, who is a longtime volunteer with Hearts Unite the Club. She has been on the program multiple times, so we'll be picking one of her episodes to do. And Megan Towns, my amazing script writer from Australia. She will be coming into the Discord server and we'll be listening to one of her episodes and people will be able to ask her questions.
Speaker 2:If you have been again some hard to part with Anna and you would like to come into the Discord server with us, let me know. I think it would be awesome. The plan right now is to do one a month. I intended to do one in January, but setting up this surfer is really more challenging than I thought it would be. I think now that we almost have it completely set up it won't be so bad, but just trying to wrap my brain around how Discord works has been a bit of a challenge. So that's the days, and that's a little story from me. And now on to the interview. I really hope you all enjoyed this Happy Heart Month and I look forward to hearing from all of you. Please reach out to me on Facebook or through my email. You know about the Heart Genetic Love website, heartgeneticlovecom. Have a great Heart Month. Talk to you later.
Speaker 1:Bye.
Speaker 3:Welcome everyone. Thank you for joining us today. I'm excited to have author Emily Falcon and publisher Anna Jaworski here to talk about Emily's book From the Sidelines to the Finish Lines, and how books can help advocate for people with chronic illnesses. Let me start by introducing Anna and Emily. At seven weeks old, emily Falcon had a heart attack and was diagnosed with an anomalous origin of the left coronary artery from the pulmonary artery called Alkapa. This led to two open heart surgeries at six and 35. She loves travel and animals, both of which have helped get her through difficult times. Emily is now an athlete who participates in a weekly run club and runs 5k races throughout the year. She hopes to inspire others who have had health limitations to never waste a moment and not let life pass them by.
Speaker 3:Anna Jaworski is a heart mom to a single ventricle survivor. Her first piece as a paid author was in critical care nurse. After writing her first book, hypoplastic Left Heart Syndrome, a handbook for parents, she was unable to find a publisher willing to take it on. So she and her husband Frank started Baby Hearts Press, a publishing company devoted to providing resources for the congenital heart defect community. When not writing, helping other people write their stories or podcasting. You can find Anna in her garden tending her roses or other flowers, or maybe you'll find her with Frank drinking some iced tea in their dinosaur garden with their fur baby buck. Wherever you find her, you'll be sure to be invited to stay for tea and a chance to play a game or tell a story. So welcome. I'm so happy to have both of you with us. I wanted to start with Emily talking about her journey with Alkapa and why you wanted to get it out to others.
Speaker 1:Thank you, jennifer, for having me on this great opportunity. You already gave some of my history, but I've been around a while so it's a little long, but I'll try and keep it short. As you mentioned, I was born in 1982 and I had a heart attack at seven weeks old, and although one in 100 babies in the US are born with a heart condition, mine occurs in one in 300,000 babies, so it's pretty rare. Doctors weren't so sure how to treat me, so they waited to do my first open-heart surgery until I was six. I lived a pretty limited life, but I did lots of normal stuff too. I went to school, but there was no sports with other people. I had trouble with stairs and hills all the time I took medication. I went to school, but there was no sports with other people. I had trouble with stairs and hills all the time I took medication. I went on family vacations and I participated in things I was interested in with restrictions and tried the best I could, and things were pretty normal for me. I was 28 and I came back from a trip to Morocco and I experienced an abnormal heart rhythm called AFib. That kind of started my adult journey with more heart problems than I already had. I had a few minor surgeries to keep that away, but it came back.
Speaker 1:When I was 35 in 2018, doctors decided I needed to have a second open-heart surgery. They replaced my valve and that changed everything. Once I was recovered, I could do more than ever before. Stairs were a little bit easier, my neighborhood hill was so much easier. I could go up without becoming so breathless, which was totally new to me, and these are things people have experienced their entire lives without difficulty, but I was just learning about.
Speaker 1:I was able to start running for long distances, and I'd never been able to do that before. I decided I'd like to run in a 5K race in Boston. The big deal is the Boston Marathon, but of course, I could never do that the same weekend, the same association that puts that on does a 5K. So eight months after my surgery, I ran in that race. I never stopped to walk or rest, which I'm most proud of. From then on, I just keep trying everything new and seeing if I can do it, and from doing that, I realized I should write a book to try to inspire others so that they don't take their health for granted, and try when they can and not let opportunities pass them by. I love that.
Speaker 3:Anna, do you want to talk about your journey and your publishing company?
Speaker 2:Yes, thank you. You did tell a little bit about it at the opening, like Emily said, which is great, but my child was born with a single ventricle heart, so a condition that's considerably different than Emily's. It's the fourth most common heart defect. As a matter of fact, than Emily's it's the fourth most common heart defect. As a matter of fact, my child had to have surgery within the first couple months of life or else my baby would have died. So my child has had three open heart surgery and has had some of the same situations that Emily had with the arrhythmias. Emily had AFib. My child had a different kind of problem, but, just like Emily, my child has deflations and it's very common in the congenital heart defect world for people to need certain medications or other procedures, aside from just the open heart surgery. But my child's a little bit younger than Emily not much.
Speaker 2:She just turned 30 in August, so she's doing great, just like Emily, she's an inspiration and I felt that her story needed to be out there, just the same way Emily did. It could inspire other people. It could give people an opportunity to know that these people can grow up. They can grow to have happy, productive lives. Sadly, even today, in 2025, it's hard to believe, but there are still women who find out in utero that their baby will have a single ventricle and they're encouraged to abort them. I wanted people to know that these people can grow up and live happy lives and give people a chance for life.
Speaker 3:All right. Can both of you talk about why literature helps in the process of advocating for specific communities and in this case people fighting chronic illnesses?
Speaker 1:From my point of view, I think invisible illness isn't talked about much, and there's often stories about people with cancer or other illnesses that are more common, or an adult who's had a sudden life-changing event, and not so many who have grown up with chronic illness, like I have and Anna's child. You often feel very isolated and alone, and I think this is the best way to get our stories out without having the pressure of sharing things we don't want to, because we're writing what we want to say and we're in control of it. I hope it empowers people to get our voices heard.
Speaker 2:I love that Emily, and Emily wrote for the last book that I published, called the Heart of a Heart Warrior, which my daughter also wrote for. I love that book because it's all stories only by adults who were born with heart defects, and I agree with Emily it's an invisible illness for the most part, unless you're at the beach. People can see your chest and, as a mom who had a baby 30 years ago, there were no resources.
Speaker 5:There was no internet.
Speaker 2:It's hard to believe that I had a baby before the internet was really popular.
Speaker 2:Aside from with the United States government by putting together my first book, A Kypoplastic Left Heart Syndrome, for Parents which did not become a bestseller, but it gave me a chance who wrote her child's story? My child had a staged surgical procedure, but her child had a transplant, which is another option for babies who are born with single ventricle hearts, and so I wanted to have both of those perspectives in the book. I received so many cards and letters and photos of children. I think probably the cards that mean the most to me are the ones from the women who told me I was encouraged to abort. Your book gave me hope. My child's doing great. I've received graduation pictures and cards throughout the year seeing him grow up. At Christmas my husband and I said when we decided to self-publish the first book, if it helps only one family, it'll be worth any expense, because we just wanted to give that picture of hope to somebody else.
Speaker 3:And I think it's really important that it's all about visibility. It's not something you see. One of the girls I was friends with in junior high and high school she had had open heart surgery. We all knew it because she had a scar, but I'm going to be honest to say it was nothing we ever talked about with her, it was just. This is the thing that she's gone through. I think visibility is how you get information out and how people actually understand, not something we talk about a lot, Even when those chronic illnesses or something like asthma, we as a culture keep those things personal.
Speaker 2:I think everybody wants everyone to be fine. So I know, when I brought my baby home after the first open heart surgery, we knew that there would be a second surgery within months to a year. It was not going to be a long time, like Emily went six years, but just wow, that means my baby wouldn't have survived that long. But I remember after the first surgery he told our family there will be one plus there'll be two more surgeries um, coming up. Everybody said, yeah, but the baby's fine, now right, and I think that's so true.
Speaker 2:I have a friend whose child had asthma another invisible illness, and that's the way people would treat her. She would go to the emergency what she mean and then she would come home and everyone would say, but but now she's fine, right, and it's a lifelong condition, just like congenital heart defects. They're okay for today, but something could happen and we just have to be alert. We're talking about this, jennifer.
Speaker 2:Yes, it is an invisible condition, but it's a lifelong condition and if we don't talk about it we miss opportunity to educate ourselves and we might miss an opportunity to save a life. And that's a pity, because anybody can learn CPR and there are chances that you might need to use it when you never think you would like in a school or at a football game and we've all heard tragic stories where people are not paid. Thankfully, because enough of these situations have occurred, there are now nonprofit organizations providing AEDs everywhere. You see them in the airport, you see them all over the place, even in the churches, and it's very simple to use. You turn it on and there's a little voice that speaks to you. So we are becoming a more literate society about jungle hunting.
Speaker 1:I always say my conditions can be managed, not cured, because they want you to be better, and I think in television and movies there's no accurate portrayal, because even a show as popular as Grey's Anatomy one of the main characters had a heart surgery. She had a scar for one episode and then never again. Everything was for her. And then recently the other doctor had a valve replacement. Just like me, she had some restrictions at work, but then she was back lifting people and doing crazy things that I know were not allowed after my surgery.
Speaker 3:That's called some lack of research.
Speaker 2:That's too bad, because that's a missed opportunity to let people know that it's okay to have this valve surgery, to let people know that it's okay to have this valve surgery, it's okay to have these restrictions and you're not expected to go back to exactly the way you were right away. That disappoints me that that happens. I know there was one popular TV show about 25 years ago or so where they contacted me and they told me that they had bought a copy of my book and they were portraying a child with hypoplastic clipped heart syndrome. But I lived in the country and I didn't have cable. I never got to see the program, but I'm hoping that they did it accurately. I don't know, it was such a long time ago. It's funny that you saw that, emily. I'm sure that really caught your attention.
Speaker 1:Yes, especially because the doctor who had developed surgery was a heart surgeon in the show and she doesn't want to follow any of the rules or do anything. She tells all the patients.
Speaker 2:Doctors and nurses make the worst patients. I'm married to a nurse, so I can totally say that.
Speaker 3:Oh, that's great, but it is interesting how there's always this conversation about how inaccurate those shows are and for some people that is the only visibility that they see for these kinds of things. We had an author visit last week with someone who works at the Crimeland in Fort Worth. She writes very gritty murder mysteries. We were talking about how people's understanding of what happens in a crime lab is CSI and how unrealistic that is. They don't solve cases in 30 minutes and that most of the crime lab work is not the flashy stuff that's on CSI. So it's very similar, right. What we consume as media around health are these shows that while maybe they're saying all the right word, it's not always accurate, and it's why other forms of media are important, right? Why biographies and those sorts of things, which tend to be a bit more easier to understand than just straight nonfiction you're getting to know a person and those sorts of things are really important for people to relate to and understand but also help if you're suffering from those sorts of things.
Speaker 2:I think that's what makes Emily's memoir so important is she gives us a sneak peek not at 30 minutes of her life. We get to see years and we get to see how she was affected as a child and a teenager. We all know when kids go through those teenage years that there can be some challenges. But when you have a child with a chronic illness, those challenges are exacerbated. And then to see her go into young adulthood and to blossom the way she has as a parent of a child with a heart defect, a memoir like Emily is pure.
Speaker 1:Thank you, anna, that's so nice.
Speaker 5:Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more question or comment that you would like addressed on our show. Please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.
Speaker 3:What can our audience do in their communities to advocate for themselves and their loved ones if they're dealing with these types of illnesses, and what can those of us who don't have this struggle also do to help.
Speaker 1:I had two ideas about how to help.
Speaker 1:The best thing I did as a kid was go to Open Hearts Camp where I got to meet a lot of other kids who had heart surgery or had heart conditions, and it was great to not feel different and feel included and not even have to talk about anything.
Speaker 1:If I didn't want to, or if I did, I didn't have to explain because they totally knew everything I was saying without having to say much.
Speaker 1:If you're in a community, you could set up an event maybe, or a group where people can just come together and talk about their condition or not and just know that everyone there can understand if they want to talk about it.
Speaker 1:It could be as simple as just going to the movies together and then going out for coffee after, or a day in the park, and you could go on a walk if you feel like, or you could just sit if you don't feel up to it, but you'd still feel everybody around you and maybe make a friend or two. And the other thing I thought of more directly if you know someone is to join them at an appointment if they ask or if they don't ask, maybe offer Because it can be really overwhelming at those appointments when you're alone and it's hard to listen and take everything in and speak up and ask questions if you're nervous or just confused, so your partner or friend could take notes for you or ask the questions you're too afraid to ask, if you prepare ahead or just sit there and be there with you so the person knows they're not alone and they can ask them if they remember something. They might later help them write an email with follow-up questions later if that's helpful to them.
Speaker 2:Those are all such great suggestions, and if you're the parent of a child who has a chronic illness or a condition that's an invisible illness, I think that there are support groups now like never before. I actually helped start a support group in Austin, texas. Even though I live outside of Austin, that was the closest big city where children were treated. I had to drive there for my child's pediatric cardiologist and that's why Another Heart Mom and I started a support group there. Not everybody has the wherewithal to start a support group, but luckily you don't have to, because now, thanks to Facebook, reddit and so many other online platforms, you can find support. If you want support, you can find it. So many more of the hospitals offer support groups for parents and families, but in addition to that, there are also nonprofit organizations. Like Emily said, there are camps for children. There are also camps that the whole family can go to, which is awesome, because if you're the sibling of somebody like Emily or my daughter, hope, sometimes those siblings feel left out, especially if their sibling is having multiple surgeries or they're dealing with long hospital stays. The healthy children often get overlooked, not because they're not important, but because they're not facing a life-threatening condition, and so it's lovely that there are nonprofits that put on camps for the whole family and then now siblings go off and, just like Emily was saying, you don't feel alone because they're with other people who also have a sibling who has a condition and they can talk and they can have fun together. There's so many different organizations and I have a nonprofit website that has a list of some of the different nonprofits that provide those opportunities for children with congenital heart defects.
Speaker 2:So, yeah, I think, just reaching out to others so you don't feel alone, so you can do the best job you can raising a child. We don't want to raise our children wrapped in bubble wrap. That is not the way we want to do things. And in fact it's funny because my child's surgeon said to me when I asked about restrictions way back in the early 1990s. He said to me Anna, we did not save your child's life so that you can wrap her in bubble wrap. We saved her life so she can live a full, meaningful life, and that means letting her go out and do taekwondo and do the things that other kids her age would do. That's what we do.
Speaker 3:I love all that. The biggest thing is connection right. It's about finding your people and connecting with them and figuring out ways to create relationships. And, emily, you were about having someone go and take notes. It made me think of some things that you had written in the book about how, when you were a kid, the doctors really wouldn't talk to you and so you didn't really understand, and then, as you got to be an adult, trying to navigate that because you didn't have all the historical information. Can you talk about that, and do you wish that things had occurred a little differently when you were younger?
Speaker 1:That's a hard question. In the beginning, my parents were at every single appointment, every single test and all those kind of things. So doctors just spoke to them and I might have heard it and paid attention, but not really known much of what it meant, and I wouldn't have known to ask a question or anything, because my parents didn't ask very much either, because people just don't question doctors because they're in charge, right, you do what they say. Unless it was something they had to ask, of course they did. Also, there weren't really that many big emergencies after my first surgery, so there wasn't really anything to discuss except sure'll have this test and we'll stay on this medicine.
Speaker 1:I feel like I became more conscious about what was going on maybe in middle school, and that doctor I had was, like very important. He was constantly interrupted with phone calls and knocks on the door, so it was very intimidating to want to talk to him and ask anything. He also just went through a checklist every appointment without really looking at me, being like you're not doing drugs, you're not smoking, instead of seeing me as a person like well, what do you want to do? How can I help you? Those kind of questions were never asked. I wasn't going to say anything, but if he tried to have me have a blood test or something, I might have said why? Because I didn't want that. After college started, I started going to these appointments alone, and he had less student doctors in the room, so it wasn't so much of a show of look at what she can do, look what she's doing. So I started to be able to talk to him more because there wasn't as many people in the room, which helped a lot, but he never rushed us out of that room or made us feel our appointment time was too short, which I'd highly appreciate, and I wish doctors did more of today, because everything is so much more overworked.
Speaker 1:I have a new doctor now, though, because he retired, and she knows I don't like any of that stuff. So the student doctor comes in for 10 minutes in the beginning to do quick whatever, and then they're gone and it's just us. From then on, I feel much braver to be able to talk to her and ask her things, and I still feel that fear to ask, but I also know that she's much more willing to answer and she tries not to rush me. I want our relationship to be good, because this is another thing. It's not like I can just walk down the street, go to any hospital and get any other doctor. I have to have her. There's no one else who can help me. So you have to build the two-way street and make sure everybody's happy with the relationships. If it was a more common illness and you could go anywhere, maybe I'd be much more defensive and do things differently. But you just can't. When you have a rare illness you have to stick with what you've got.
Speaker 3:It is what you want from any relationship with a doctor, whether that chronic illness or not. You want to be able to have that two-way street. You want to be able to talk to people. I'm an asthmatic, so I am very unhappy when I have to go to urgent care for a cold, because I understand that the cold is different for me than it is for most people and sometimes my insurance is like no, you have to do the Teladoc and I'm like I don't want to do the Teladoc because they are not going to give me what I need because they don't have my file. We haven't built that relationship. I agree that's something that's missing these days. You need to be able to have that relationship and that understanding with any doctor that you see, because otherwise they don't get all the information that they need and otherwise they don't get all the information that they need and you also don't get all the information that you need.
Speaker 2:We live in a difficult time right now. At our hospital you have a quote, unquote PCP, a primary care physician. However, because people are so busy, it's very common for you not to see the same person twice, and when you are like me and you're relatively healthy, it's not a big deal. Yeah, I had my tonsils taken out. I broke my arm when I was seven. That doesn't really matter. You're talking about open heart surgery and different medications and other procedures you've had.
Speaker 2:It's only different situation and those kind of people need to have the same doctor, not just from appointment to appointment, but from year to year, and I'm thankful that now, with the electronic record system that we have, it's easier for doctors to share information than ever before.
Speaker 2:But even that is a problem for people like Emily because, guess what? They were born before there were electronic files and so a lot of those old files may be gone or they have binders of information at one particular hospital, but to try to get that at another hospital is a real nightmare. It's really difficult and any parents who are listening to this, if you can get a copy when your children are young, keep a copy of just not every single visit, but certainly surgical notes and any special things that happen, like pacemaker insert or an ablation. Keep a file of that because if they don't have it electronically you may be the one to bring the information to another facility, especially if you travel. Emily loves to travel. It's like it's my daughter home. It's scary to think about going to Japan or going really far away from home, when something could happen.
Speaker 3:How do you handle that, Emily, since you do travel a lot and you do have that?
Speaker 1:So I'm a big researcher and I do a lot of research. On a trip I don't really go on a whim. I usually take about a year to prepare and I make sure that there's some kind of hospital there. I ask the cardiologist if they know anyone or where they want me to go. I bring with me a copy of my EKG and if you don't know me and you look at my EKG you'd think I was very sick. But that's normal for me and a random doctor is not going to know that and they're going to freak out.
Speaker 1:So I bring the EKG and then the most recent after visit summary which lists my medications and what the doctor has just said, and it has my weight and all that. So if something terrible is going on, they can see what's going on. I also wear a medic alert necklace which any person can call for free anywhere in the world and get all my history or connect to the doctor if I can't talk. I also carry a to-do list of what I want to do for fun. But on that same list I have all my doctor's phone numbers and what to do. If I'm with a friend, I point to it and if something happens and I can't talk, just point to this.
Speaker 2:You're so well prepared. That's impressive. You know, Continental Heart Association has on their website a list of places where other specialists are in the world, so that definitely helps. Again, it's those connections, Jennifer. Knowing where you can find that information, it does make a huge difference. I have a thumb drive for my daughter that has her last surgical notes on it and I sent her to college with that, Wanted to make sure that they had when she had just had surgery just the October before she went to college, and so everything was still fresh and that made it easy that information.
Speaker 3:I know you like to solo travel, Emily, so talk about why you do that, why you want to do that other than just enjoying travel.
Speaker 1:I used to go with my sister, but now my adventures are a bit too much for her, so I go alone rather than not go at all. Because it's like I say don't waste a minute. You don't want to miss out on something when you could have done it. And I would definitely regret not going on these trips even if I'm alone. I go for a few reasons.
Speaker 1:Besides learning about new cultures and seeing new animals and all those fun things and foods, it's like a break from being near the hospital, knowing that I'm not 30 minutes away. I'm actually away from them for a while and they're away from me, which is nice for both of us. It's like testing myself, proving to myself I don't need them for a little bit and I can do it. If something should happen, I think I can trust myself to take care of myself the best I can, which is also a nice test. So after procedures, I go on little mini trips to New York, which is four hours away, by bus. Then I go on the overseas plane trips, because that's not as easy to get home from. I always text it first to make sure, but it's really like the feeling of freedom and living, do you?
Speaker 3:have a destination that you would say has been your favorite to visit.
Speaker 1:No, I think everywhere I go has something special. So I never say there's a favorite, because there's always something that's more special at one place than the other that you can't compare.
Speaker 4:I love that this content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.
Speaker 3:All right, let's switch gears a little bit. We know we always have a few aspiring writers in the audience and since we have both a writer and a publisher, it's a perfect time to talk about both processes. So, Emily, why don't you start talking about your writing and research process and then talk about what a publisher is looking for and what you need to know when trying to submit your work?
Speaker 1:I never kept a journal. My father did when I was a child. A lot of his memories are what start the book and after that I wrote down everything I could remember at once and all the details and it was the weeding it and making it more of a story and dialogue. My workplace has an editing center so I went there for writing help with different people so I could get different opinions, my family and friends help, and then I tried to find a publisher. I sent out query letters where you should try and get them interested in your story, and that didn't go so well because it's such a niche audience, it's not mainstream.
Speaker 1:I kept trying to make connections with people and then one of my connections directed me to Anna. So that's how I met her and she helped edit and she made the great suggestion that everyone loves the best is the inner voice in the book and without that not as many people would connect to this story. She was one of the editors. She helped after I rewrote with the inner voice and then I had like a paid editor and all the professional graphics and all those things to put it together.
Speaker 2:So if you're interested in what publishers are looking for, we owe Mary Kay Klein all the props for bringing us together. She's a dear friend of mine and her daughter was born with a congenital heart defect and she knew that I had written some books and published books. I had decided, right before Emily reached out to me, to change my publishing company to a hybrid publishing company where I could help other people with their books. It was such a delight to get Emily's book. She had exactly what I was looking for, which was somebody who was passionate about their story and somebody who was willing to work with publisher. So many times people write a story and they think, okay, that's it, I'm done, I'm not going to make any changes, that's it, but don't ask me any more questions about it. And if it doesn't draw you in and if it doesn't feel authentic, then people aren't going to want to read it. And that's one of the things I love about Emily was, when she reached out to me, I saw she had such a great story. I just needed some reframing. And it was scary for her because I talked about her completely rewriting her book. It's a completely different way. And she said well, some of the other editors suggested something kind of like that, but we just didn't know how to do it and so, with her permission, I dissected her book and helped to put it back together and for a ton of questions in a unique position position because I had raised somebody with a heart defect I could ask her questions that maybe another publisher wouldn't think to ask.
Speaker 2:If you're writing a book and you have a great story and you have asthma, don't come to me because my specialty is congenital heart defects. But there are resources in the library that you can use that will help point you in the right direction for another publisher who deals with fast books. So that's the kind of publisher that you would want to reach out to. Or other medical conditions. You want to make sure, first of all, that you're writing a great story. Secondly, don't be married to your book. Be willing to be flexible with it, because the people who are helping you, they have your best interests at heart, but they also have the audience best interests at heart. You want to make this a team effort and then take the book to the right place. You wouldn't ask somebody like a university press to publish a mystery. That's just not where you would go. So you want to make sure that you're querying the right publishers, and I think that's what made Emily's and my working relationship so perfect.
Speaker 3:That's all great advice, emily. Are you more of a right by the seat of your pants sort of person, instead of plotting everything out? Is that safe to say?
Speaker 1:I think. So I just wrote it chronologically. I also kept thinking of Anne of Green Gables, which is a movie I really liked in the book, where she always says write what you know. So that's what I just kept telling myself.
Speaker 3:I love that. That is absolutely the best advice Write what you know. Is there something you'd like to mention that we haven't talked about so far?
Speaker 1:I would just say be open to people you meet, and you never know what someone's going through. Be kind and listen and don't judge. If you know anyone that would appreciate my book, please spread the word.
Speaker 3:We definitely have copies to check out at the library. Anna, do you have anything?
Speaker 2:Well, it's February 1st when we're recording this, which means it's the beginning of Heart Month here in the United States. For anybody who is applied to the United States maybe not, but here in the United States during February, we celebrate Heart Month and I'm trying to say it's special to a lot of people. But in the heart world, because you have a heart defect, I think it's perfect, jennifer, that you're doing this interview on a first day apartment, because this book is particularly important for people who want to know more about heart defects.
Speaker 3:I will say that the rescheduled date worked out better for us. We were supposed to do this a couple of months ago. I'm going to just remind. If you have questions for those of us in the audience, you can put them in the chat. We haven't gotten any so far. My final question always is is there something that you're currently working on that you'd like to talk about, whether that be a new book or just a new endeavor.
Speaker 1:I don't have a new book, but I do have a big event coming up at the Boston Museum of Science where I'm going to be on a panel with an astronaut, because I thought it'd be nice, because we can discuss overcoming challenges together. So that's been taking a lot of my time working on that and it's in May.
Speaker 2:I love that. That would be fun, awesome. I will be doing a presentation for Cardio Hub 2025. I'm super excited about that. It's a virtual cardiology conference, so I will be presenting to cardiologists and my presentation is called Beyond the Pump and it's to give the doctors a sneak peek at what it's like for their patients long after surgery and considerations they need to keep in mind. And I'm going to be on a panel in Austin in April where we're going to be talking advocacy and technology, which I think will be fascinating because I'm also a podcaster and so theologist is going to be talking about different ways we inform our community about information. I'm super excited about that. And I'm writing a memoir about my daughter. My daughter hope is trans, and I'm writing about what it's like to be the mother of a trans woman who was born with a congenital heart defect. We're all keeping busy, which is super exciting.
Speaker 3:I think 2025 is an exciting year for all of us I love that it doesn't look like we have any questions from the audience. I wanted to add earlier when we were talking and I should have put this on my slideshow of what's coming up and I'd forgotten about it You'd mentioned about the importance of people knowing how to do CPR, so for those of you in the audience, I'm going to drop a link in the chat. We are offering CPR classes at the library this month, since it's Heart Month, and I've forgotten to put that on my slide, so that was a reminder to me. The link that I've put in the chat is a list of all the classes that we have going on in the library this month. We'd love for you to come and get some great skills. They're taught by the Fort Worth Fire Department and you should get lots of great information.
Speaker 3:I want to thank Emily and Anna for spending some time with us today. I hope you enjoyed the conversation and it gave you some food for thought and maybe some things that you think you can take away and do. Thanks again, Anna and Emily.
Speaker 2:Thank you so much, Jennifer. This has been such a pleasure.
Speaker 3:Thank you have a great day.
Speaker 5:Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.
