Congenital Heart Defect Awareness at Podcast Movement 2019

Anna Jaworski, the Host of "Heart to Heart with Anna" attended Podcast Movement 2019 -- a conference, especially for podcasters. While at the conference, Anna met a number of people who had been touched by congenital heart defects, a fact she became aware of after she met new people and talked about the different podcasts each person made. This spawned an idea in Anna's mind -- to actually record people's stories about how congenital heart defects has impacted their lives thanks to the friends and relatives who have been touched by congenital heart defects. Unlike most of Anna's episodes, this one was completely spontaneous and impromptu. Take a look at how people in the podcasting community have been affected by congenital heart defects in this interesting and informative interview.

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Transcript

spk_1:   0:00
tell me about your friends who have had problems with their hearts.

spk_2:   0:03
One is my sister in law. She was always kind of lethargic and low energy. Her entire life was a school teacher in the D C. Area, and she changed doctors. And the doctor is giving her physical and listen to her heart. It goes, you have a problem. And he sent her to a heart specialist immediately, and he took X rays and did whatever. And he said, You have a hole in your lower chamber and you need to get this taken care off. And she does well on the school teacher. I need to finish the year he goes. You won't make it.

spk_3:   0:45
Welcome to heart to heart With Deanna. I am Anna Dworsky and the host of your program. I'm excited to bring to you yet another podcast from Podcast Movement 2019. This is a conference that is held every year in a different city, which is really exciting, and it is for podcasters from around the world. This year was in Orlando, Florida, and I believe there were around 3000 people at the conference. The title of today's program is congenital heart defect awareness at podcast movement 2019. And the reason this show came to be is because as I was walking around the conference, I would talk to people about what their podcasts were about, and, of course they would turn to me and asked me what my podcast was about. Well, this

spk_0:   1:42
podcast is for the congenital heart defect community, and I'm always quick to tell people that congenital heart defects are the number one birth defect. And most people don't even realize that an amazing thing happened to me at the podcast conference this year. I was walking out of the rest room when I was talking with a fellow podcaster, and she asked me what my podcast was about. After I told her that my podcast was for the congenital heart defect community, she told me that her husband's first wife, who also happened to be a dear friend of hers, had been born with a very complex heart defect. She went on to tell me that she couldn't remember the name of the heart defect, but she remembered that her friend had had a Fontane procedure. I was amazed that she knew that much and told her that meant that she probably had a single ventricle heart. And when I said that she agreed with me that, yes, that was her friend's heart condition. Her friend lived until she was in her forties before she passed away due to complications from her congenital heart defect. I was so touched that this woman was willing to share this information with May. But I didn't get a chance to get any more information from her, and we parted ways. The next day, as I was coming back to the podcast movement conference, I was on an escalator when I turned around and talk to the gentleman behind me. I asked him what his podcast was about, and he told me, and of course, he asked me about mine when I told him that my podcasts was for the congenital heart defect community and that my son had been born with a heart defect and head three open heart surgeries, he said, My nephew has had open heart surgeries. We proceeded on the escalator to talk about his nephew, who was born with a court ation of the aorta. He went on to tell me that his nephew had had surgery and was able to live a very healthy life and was now a teenager. It was after I had the second conversation that it dawned on me that I should be bringing these stories straight from the mouths of the people who were sharing their stories to the ears of my fellow listeners. The next day I brought back my road portable podcasting recording device, which is an amazing, teeny tiny device with two lava lier Mike's that I can attach to the lapel of my speaker and a touch to myself, and I'm able to record directly to my iPhone. I had already practiced doing this with a friend of mine, and so I was excited to try it out in a noisier environment to see if the microphones would work out well enough to be able to hear the participants. And it actually worked out really well. So the rest of this podcast will be me talking to one podcaster and two fenders who also had been touched by congenital heart disease. I'm really said that I wasn't able to reconnect with those 1st 2 people who gave me the idea to do this, but I'm thankful that it happened early enough for me to go back and be able to record three different interviews with people who had been touched by congenital heart disease. My friends. This just shows us how prevalent congenital heart disease is and that we could help spread congenital heart defect awareness wherever we go, even

spk_3:   5:37
at a podcasting conference, I hope you enjoy this special episode of Heart to Heart with Anna.

spk_4:   5:46
Hi, My name is Jaime Al Croft, and I just published my new book, The Tin Man Diaries. It's an amazing story of my sudden change of heart as I went through a heart liver transplant. I can think of no better way to read it's in man diaries than to cuddle up in your favorite hearts. Unite the Globe sweatshirt and your favorite hot beverage, of course, in your hearts Unite Blow mug, both of which are available. The Hug podcast network, online store or visit hearts unite theglobe dot

spk_5:   6:18
You are listening to heart to heart with AMA. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with him.

spk_1:   6:37
I am here at the podcast movement 2019 with Bob Breimyer and Bob. Yesterday we were talking and you told me that you were touched by congenital heart defects. Tell me how you've been touched by congenital heart defects.

spk_6:   6:50
Well, someone very near and dear to me, my brother in law. My sister's husband came down with heart problems probably 10 or 12 years ago, which is quite a long time. And they ended up having to put a pump electric pump in his heart and that was attached through an external tube to a battery. So he now had to wear a battery vest. He had to be connected at night, even in the shower, and he was put on a heart transplant list in Denver and period time went by and they did a variety of tests and things. One thing led to another, and it didn't go well. His body was rejecting everything, and unfortunately they had to put a second pumping on. So for probably the last 89 years, he's had two pumps in his heart, both attached through external electrical tubes, again, wearing a battery pack and all that. And he was put on a second heart transplant list. And he came out to Los Angeles, where I live, and spent two weeks at Cedar Sinai, where they did more tests, and they I don't know exactly what they do, but they filter the blood and they test you to see. But if you're gonna reject things and in the meantime you're on a list. But as long as your body is rejecting things, they can't risk wasting a heart, so to speak. So by the time you went back to Colorado, they realized the test, so he's no longer on a heart transplant list, and that was probably five years ago.

spk_1:   8:33
What is amazing to me, Bob, is that he has lived for this long on an external pump, and years and years ago, when they first created these pumps, you had to stay in a room. I mean, it was a big box that you were attached to, and now they make it so you can wear it on a backpack and you're able to be mobile and he's been able to survive for how many years,

spk_6:   8:59
a long time, starting to develop congenital heart failure, which is not good because there's nothing they could do. And they also can't go in and replace the pumps because of scar tissue. And the doctors don't want to take a chance. And all those kinds of medical issues that do arrive. So his name is Sam, and we call him Super Sam says he just keeps ticking, just like the Energizer buddy. This past week, he was able with my sister. They went up into the mountains when he was able to go on a bit of a walk by a lake that they go to outside of Boulder. And that's the first time he's been able to go up into the mountains and nine years

spk_1:   9:42
my way higher up you go, the harder it is to free. The fact that he was even able to do that is pretty amazing,

spk_6:   9:50
Pretty special. I know it's real hard for my sister and all that. He did have a stroke about two years ago that complicated things, but he's he's still ticking on. We're going to go see him at the end of the month, we're gonna spend a week, their visit with him, One of the things that it's happened from all of that. My father passed away when Sam came to the funeral. My dad had always gone down to visit the fireman. The local fire station always took him treats and Candies and cookies and things. They were so touched by this he was retired Air Force Colonel that they came to his funeral two captains and two stations, and they brought two fire trucks on. They escorted the hearse there to the grave site, and the fireman were amazed. And Sam was able to tell them about the L bad and the palms and all that because the fireman had never seen anything like that. And of course, E M T. Is. They need to know how to deal with this because they don't see that their houses on a special grid, that if the power goes out, they're the first ones that we're gonna get attention to make sure the power's on because batteries will only last for so long. Right? And things of that issue, not to mention he's been ableto fly, obviously from Denver Colorado are L. A for the Cedar Sinai, but he was able to go to Chicago to visit his mother. So you can imagine travelling like that. You gotta be wise and set things up because you're walking around with what looks to be an explosive vest, right? Be blunt. Put it that way. You know, it's scary Thought so. It makes it very difficult for you, but we love him so much, and I appreciate what you're doing to

spk_1:   11:39
Thank you, Bob. I'm inspired by Sam Story. He's sure sounds super to may awesome that he is still living his life. He's spending time with family. He's not missing those golden moments to make more memories with people, and he's in his

spk_6:   11:58
68. We're hoping he'll be with us for many more years.

spk_1:   12:04
Tell me what you're doing here at Podcast Movement 2019.

spk_6:   12:08
I work for a P M music. I'm a music publisher out of Hollywood, California, and we license music to virtually anybody for any kind of music cues on. We're tryingto work and help with podcasters who are creating a lot of content, a variety of content. Sometimes music live in that up. Bring out that emotion. Bring out some identity with thematic themes, things of that nature. I'm not just promoting a PM I'm trying to help them understand the legalities of intellectual property licensing, infringement issues and what to do to make sure that they're covering their bases correctly in making their creative contact. So what

spk_1:   12:52
you're doing, that's fabulous. Thank you. And I'm glad to know you, because I just might be using your service

spk_6:   12:59
is happy to help you, especially with this worthy cause. Thank you again for your kind thoughts.

spk_1:   13:04
Thank you, Bob. You have a great day. Thank you

spk_3:   13:16
Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's.

spk_5:   13:26
Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes amazon dot com Spotify.

spk_3:   13:36
I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects

spk_5:   13:43
join Music

spk_0:   13:44
home tonight forever.

spk_5:   13:51
Anna Dworsky has written several books to empower the congenital heart defect, or CHD community. These books can be found at amazon dot com or at her website, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for Women in the CHD community and his other books. My Brother Needs an Operation, The Heart of a Father and Hypoplastic Left Heart Syndrome. A Handbook for Parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.

spk_1:   14:26
This is Anna Gorski, and I am at podcast Movement 2019. I'm here with Rochelle Bronson. I'm so excited to meet another podcaster who has been touched by congenital heart defects. And so I put a post out on our little app that we have for the podcast conference. Until my great surprise, Michele wrote to me and said she has a child with hypoplastic left heart syndrome, and I don't think Rochelle knows that. I also I had a child who was diagnosed with have a plastic lift, our syndrome. Did you know that I did not know that you just said congenital heart disease and I just happen to be the same one. I know it's not amazing and my son just turned 25 on August 11th just a couple of days ago. Wow. I know when your child is 10. She turns 11 in November. Oh, my goodness. So that is so awesome. I tell me your story. It would take a long time to tell all of it, but basically, we found out that she had a hypoplastic left heart syndrome or what they thought was that at our 20 week ultrasounds, okay? And so we lived in Boise, Idaho, at the time, we had to drive down to Salt Lake City so that she could be their primary Children's hospital there. And she had surgery when she was about eight or nine days old, and I know is six days old and then she had an emergency surgery 11 days after that because they thought she had a blood clot, but distant they had put in and closed in on itself. And so they had to go back in and open it back up, and it was really scary. And then, since then, she's had two other open heart surgeries. She also had untested surgery because she has a hetero taxi. So okay, and she was born without a spleen on DDE. I can't think of all the things we're lovers on. Their own side had Mel rotation of the intestines. And so anyway, all of that she had her last surgery when she was three and 1/2. And then she has had a pretty much clean bill of health since then. Mostly, like she's had a few little things here and there, but nothing with her heart has been good. And she has a pond hand heart, Yes, okay, just like my son has upon hardest. Well, yeah, she just celebrated her way, caught her font anniversary her and she just celebrated that in July. It was seven years since your last surgery, so that is amazing. It's been my son had his last surgery at 17. He just turned 25. It's been eight years since his last surgery, and he's doing great and your daughter sounds like it's doing very well. She's doing very well. Start fifth grade. Oh, that's so much fun. That's such a funny because they're not jaded like teenagers can be. So what? Please use a podcast movement. I have a podcast with my husband about healthy marriages. Get a room. That's a catchy title. Thank you. Thought of it myself. Okay. And so we just talked about getting through hard things. Such as having a child with severe heart problem. Now, is this starter your only child? No, I have. We have four other Children. So what? After child, we've had two cents, so there's a whole show. There's all the show right there. My goodness. Okay, so did you have to be someone like me? Podcast movement? No, I didn't even see your message because I hadn't been looking through the like, little board, but my husband did, and he was like, Oh, this lady has, like, wants to know about it. So I was like, Oh, message girls. We'll see where it goes, you know? So, yeah, a lot of people don't know that heart defects of the number one birth defect. Oh, and I feel like the podcast is one way that we can get some information out about that. Have you done a podcast on your show that deals with having a child with a heart defect? We've talked about it, but we haven't done a specific episode on that. We've talked about doing one just on that, we should. Maybe my husband and I should come on your show. Absolute. Whenever you find so glad that your husband saw the post and they decided to come down and talk to me because I think that what we're doing is all about spreading awareness. One better way to spread awareness. And right here at Marcus Movement in Orlando 2019. I just think it's amazing. It's crazy. Yeah, Thank you so much for sharing your story with me today. I appreciate our shells. Okay, Having me

spk_4:   19:04
takes this hot industry, we're offering us a mechanical hot. And he said, now that I've had enough to give it to someone worthy my father promised me a golden dressed twirling held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

spk_5:   19:25
Heart to heart with Michael. Please join us every Thursday at noon, Eastern as we talk with people from around the world who have experienced those most difficult moments.

spk_1:   19:36
I am an NGO Gorski, and I'm here at podcast 2019. I'm so excited to actually have met Scott, Esther Seuin and Scott has a very special story to share with us, Actually, two stories of people who he knows who have been touched by congenital heart disease. Scott, tell me about your friends who have had problems with their hearts.

spk_2:   19:59
One is my sister in law. She was always kind of lethargic and low energy. Her entire life was a school teacher in the D C. Area, and she changed doctors. And the doctor is giving her physical and listen to her heart. It goes, you have a problem. And he sent her to a heart specialist immediately, and he took X rays and did whatever. And he said, You have a hole in your lower chamber and you need to get this taken care off. And she does well on the school teacher. I need to finish the year he goes, You won't make it. You need to get this surgery done within two weeks or you will be dead within five weeks. So she had to get the surgery. The surgery was successful. Convalescence wasn't too long. I don't believe and she is out and about Healthy is conveying. It's a wonderful story. Wonderful story of the World's a much better place with her around.

spk_1:   21:01
And unfortunately, we have a sadder story.

spk_2:   21:03
One of my best friends growing up was my best friend's in second grade, and I guess the term is he was a blue baby, which I never knew until after he passed. And maybe they never get anything or he didn't know I'm not under percent for But he had a hole in his lower chamber as well, and either elected not to deal with it. But anyway, he passed away about four years ago on Christmas Eve by himself, which ah, horrible Wait oh, to pass.

spk_1:   21:39
Well, if you don't mind me asking, what year were you in second grade?

spk_2:   21:44
Okay, second grade year, seven sets, about 61 or 62.

spk_1:   21:50
So it may be the case that in 61 or 62 there wasn't a surgery to help him.

spk_2:   21:55
I'm sure that

spk_1:   21:56
if that's the case, he may have developed Eisenmenger syndrome, which is a pulmonary problem that happened, happens after you cannot have your heart defect taking care of. And so unfortunately, then if he did develop eyes and makers by the time there was a surgery for him, he wouldn't have been eligible. So we're seeing that's happening less now because we do have some awesome surgeries. I'm so sorry that you lost your friend

spk_2:   22:22
and still live in my heart.

spk_1:   22:25
And that's what's important is that you still have those memories and you can still share his story. Maybe to help somebody like your sister in law who wouldn't have possibly had back surgery until it was too late. So by the fact that you have this story, you're able to help other people. Thank you so much for sharing. So welcome things. You tell me what it is that you're doing here. A podcast movement.

spk_2:   22:48
I am with a company called Audio Nam ICS. We do audio source separation and so we can remove the noise. For instance, if you're interviewing somebody had podcasts, I could remove all the background noise for you.

spk_1:   23:03
That is awesome. I'm learning about you about what you do. But that concludes our little mini episode today.

spk_2:   23:10
And keep up the great work.

spk_1:   23:12
Oh, thank you so much, Scott.

spk_0:   23:15
Well, my friends, that concludes this episode of Hart to Hart within. And I'd like to thank all of my guests for their spontaneous impromptu interviews. I think they all did a fabulous job. Friends for the cost of a pizza, you can support hearts. Unite the globe for an entire year. Please consider making a contribution. You can contribute even more than that if you would like. But honestly, it's so simple to support hearts. Unite the globe. Theo Onley podcasts completely devoted to the congenital heart defect community, providing now over 200 podcasts on topics in a variety of

spk_3:   23:59
languages. If you want to help us to continue to grow our network to continue to grow our programming and to continue to keep it free to members of the congenital heart defect community, please be a patron. Visit as a patriot dot com slash heart to heart. That's p a T r E o n slash heart to heart and choose one of the tears to help us help the heart community. Thanks for your consideration. I really enjoy attending the podcast movement conference every single year, and one of the reasons I go my friends is so that I can continue Thio make this podcast the best podcast. It could be so important to me friends that you have a podcast, especially for the congenital heart defect community that is a high quality and that is continually evolving. I think if there's one thing I learned at the podcast movement conference this year, it's that what I say at the end of every show couldn't be more

spk_0:   25:02
true. And that is to

spk_3:   25:04
remember, my friends, you are not alone.

spk_5:   25:09
Thank you again for joining us this week way Hope you have been inspired on, Empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna With your hose down, Dworsky can be heard every Tuesday at 12 noon Eastern time.