35 Burst results for "Heart"
Get to Know Hung Cao, U.S. House Candidate for VA-10
"You're running as the Republican in the tenth congressional district in Virginia which is right outside of Washington but it also stretches a bit Tell everybody a little bit about your background From Vietnam in 1975 and then we escaped there within days of the fall Saigon Came over here and my father couldn't find work over here So we had to move to Africa So I grew up I spent 7 years in Africa And while we're over there my parents we spent 7 years over there I was going to French schools and my parents realized at the age of 12 that this kid probably needs to learn English also So we moved back here My mom brought myself in my sport sisters back here while my dad remained over there for 15 years by himself working and seeing him every 6 months but I want to I grabbed on to that American Dream and I want to Thomas Jefferson high school for science and technology I was the first class to graduate from there I went to the United States naval academy I got my master's in physics from naval postgraduate school and I was a fellow at MIT and at Harvard But I paid everything back with services country I served 25 years in special operations I thought in Iraq Afghanistan Somalia I was in Pakistan during the earthquake relief I was in the Balkans I dove the ocean depth I recovered John F. Kennedy Jr. but then that's been required last October because just watching Kabul fall and seeing mothers hand babies to marines Just broke my heart I mean that's exactly what happened in Vietnam And so I decided to run for Congress Wow And how old are you I'm 51 sir 51 well you've led a full life at the age of 51 And a very patriotic
Eric Metaxas Talks About His Call to Action for American Churches
"Guys, I'm always happy to welcome back to the podcast, our friend, my friend Eric metaxas, he's a fellow Salem radio and podcast host a daily nationally syndicated daily radio show. The Eric metaxas show. He's the number one New York Times bestselling author of is atheism dead. The new book letter to the American church. That's what we're going to talk about. By the way, you can find them at Eric metaxas dot com or metaxas talk. Dot com. Eric, welcome to the podcast. You are a prolific guy. I think we had you on what 6 weeks ago on to talk about your last book, but this is an urgent enterprise that you've undertaken the new book letter to the American church. Talk first about why you felt the sense of urgency and what is it that you're trying to say here? Thanks dinesh. There's really nobody who gets the urgency of where we are better than you do. So it's a joy to speak to you and to your audience. We are in a battle we are in a war and ideological war. But at its heart, a spiritual war. And my contention in this book, I've never written, I've never written a shorter book. I've never written a book that I felt greater urgency about. I've never written a book that I felt was more important. And I rushed this to publication because it's my contention. My heart, my horrible contention, that the silence of the American church is precisely the same as the silence of the German church in the early to mid 30s when the Nazis were on the rise. And it is precisely because of the silence of the German church, which I know from my research and my bahnhof her book, it is the silence of the church in Germany that led to the rise of evil and to horrors unimaginable to the people at that time.
College Campus Orgs & the Nuance Subject of Rape
"These liberal organizations, they table, they have events as well on campus, but nobody cares. Nobody's protesting these liberal boobs. I had one that was supposed to be standing up for women in domestic violence, but it was nothing but victimizing women, or teaching them to be victims of every circumstance that ever happened to them. You know, the subject had come up about rape. And this is a word that people can donate a fundraiser on, they can get your heart strings running on. But rape is a very nuanced crime committed. And people like to lump it all together. You know, and let me just explain what I'm saying. A young person says that, hey, I was drunk last night. I don't remember what happened. It appears that I had interactions with a man or whatever the case may be, but I don't remember what happened. That's considered that person that will report that as a rape. Even though that person could have consented and the other person could have been just as drunk, they could have not been raped at all. It could have been just the fact that they just don't remember what they said, or they didn't say, 'cause them and the other person they wit was drinking. There's a potential that they could have been raped, but they don't really know if they weren't or where they were not. Not in every case, but in most cases. And that's considerate. Then you have what we call statutory rape. You have a person that's 20 years old, dating a 17 year old, you could be charged with statutory rape, and that's still considered rape. You have a person who is committed to having playing video games is what I call it. So I don't have to say the word, but y'all know what I'm saying. A male and a female committed to playing video games, and then the next morning, this person regrets doing what they did, they could still file a police report and claim to have been raped. So there's different scenarios that occur that a person can either claim rape or not. And then last one is that somebody breaking the house and hold you down force you and 5 or 6 dudes jump on you and get you. But in these tabling scenarios they put all of them together and they say there's nothing that women could do to avoid being in those positions. There's nothing they can do. Absolutely nothing. You just threw osmosis because you sneezed and the wind was blowing from the west, somehow you're going to find yourself in somebody's bed getting raped.
Caller: A Conflict With Fellow Black Christians
"Good, man. Listen, I really have a real conflict with a lot of my fellow black Christians. Now, they say that they don't agree with them immoral policies of the Democratic Party. But they think that they're not held responsible for voting for them. It's a really confusing thing to me. I've had a girl tell me that she is pro she don't believe in the killing of the unborn, but she's pro choice. I guess she's kind of manipulating the things that we know that God gives all people choice. But the choice in terms of killing babies is a different kind of choice. That's the choice to murder babies. And every Christian should be against it. But they've adjusted that theology to fit this Democratic Party. It's an amazing thing to me. They've adjusted it to fit them. Listen, this is, this is a hard fight and this is one of those issues where I say blacks that don't wake up. You have to kick the dust off your sandals and move on. But there's no way that you can justify abortion. You can't justify abortion biblically. God says he knew you before you were even born. I would quote scripture to her, and I would just ask her if God says this, why do you think that? And don't argue with her, just let her think it through, perhaps when she walks a may away, maybe the Holy Spirit will get a hold of our heart and get a hold of her thinking. But this is, this is nonsense. And I do believe that black churches need to be called out for this. I believe, and I hate to say this, but this is true. I think that Black Lives Matter has had a bigger impact on the black community than the black evangelical church ever has. And it's a sad statement, but it's a true statement. I believe that the black church largely, the black evangelical church, has largely been feckless when it comes to helping out the black community and it's
The Significance of Giorgia Meloni’s Big Win in Italy
"Italy has had a free and fair election and the result is a big win for the right-wing or Conservative Party. And it's actually a coalition party. But the leading member of that coalition is a group called Friends of the fraternal order of Italy or Friends of Italy. And fraternal brothers of Italy and its leader is Georgia maloney, who will become the next Italian prime minister. Now, there might have been some leftists in this country. I mean, they were, they were warning against this result, and they might have been hoping that it just as here in 2020 you'd get like later results that would pivot away from maloney and give the election to the left. But unfortunately for these leftists here in America, Italy has voter ID. And also the only mules that you find in Italy are four legged ones. They eat grass. So this wasn't honest election. And now the left is dismayed at the outcome, and there's also a lot of screaming about the outcome at the EU. Why? Because at the European Union, they can see that this is a trend that is beginning to sweep across Europe. In the beginning, the trend was only in Eastern Europe and you may say at the periphery of Europe. So Hungary, for example, pivoted in a right wing direction Victor Orban, Latvia, Poland, Lithuania, Czech Republic, Austria, Slovakia. And so the EU said, well, the mainstream countries in Europe aren't going that way. France is okay. Even though we've got le pen, Germany is okay. England is okay. And Italy is okay in Spain is okay, but now Italy, one of one of the countries, in fact, sometimes described as the beating heart of Europe. Italy has decided to also pivot sharply to the right.
Sean Feucht Drops In After His Times Square 'Let Us Worship' Event
"Ladies and gentlemen Sean Foyt, Sean, I can't believe you are in the studio. In the flesh. Every time I've interviewed you on this program, you've been in a car on a hilltop in California. Right? Yeah. And you are in New York City. Welcome to New York, my friend. Thank you. I was just Alvin and I were just telling my audience our version of what happened last night. And it was so beautiful and a friend of mine, my wilkerson said, oh, and when the sun went down while we're worshiping, that was the beginning of Roche Shaun at the beginning of the Jewish new year. And I said, that was not planned. That was amazing. To be worshiping Jesus in the middle of Times Square. Publicly, beautifully. So last night we saw the film, the film super spread is fantastic. The only part I didn't like is my part. I'm in it folks. I apologize, you know what I mean? I was just very bullish. I was bloated and confused. But they put it in any way, because but Sean, just tell us, what happened yesterday? Man, it was wild. I mean, like you mentioned, you know, being in Times Square, the place where the ball drops, the place where the eyes of the world look at during new years. And we were there actually during the real new years. Is that not amazing? Yeah, it's so cool. And what was even more wild, I mean, there's so many different threads to weave, but when we first came in 2020 and we were on the West Coast and we were doing lettuce worship and of course, you know, people were, there was a narrative from the media that it was like this anti lockdown anti government protest. It wasn't that at all. It was just like, hey, we're The Church of Jesus Christ. We need to rise up. This is a dark time people are fearful. People are filled with, you know, this chaos is confusion, drug and alcohol use of skyrocketing, suicides, this guy rocketing, we need to worship. And so then when I had it in my heart, like we got to go to New York City. This is a city I love. I've been coming here since I was a kid, and when we showed up in Washington square park under the big arch, there was a policeman there, a chief of police that met me and he said, what are you guys doing here? And I said, well, you know, we're here to worship. And at that time, protesters had been raging through that park. And it was just a place of chaos and violence. And he said, well, we could use the church here.
If You Care About the World, This Is the FIRST Thing You Should Do
"This said over and over, people say, what's wrong with the world? And I don't know if it was Chesterton who said it, but he said, I am. In other words, our own sin, our own brokenness, the first thing, if you care about your country, if you care about the world, if you care about any of these things, the first thing to do is to read the Bible and to give your heart to Jesus, utterly in every way, anything that is preventing you in your life from getting closer to him from walking with him. That's step number one. And we often don't talk about that. We often talk about external things, but you and I know that's the first thing and the most important thing that God wants us to do.
McDonald’s to Face $10B Race Discrimination Suit From Byron Allen
"It says McDonald's will face a $10 billion lawsuit against them for not advertising enough on black owned media. Now, let me just explain who this helps in who this hurts. The fact that the plaintiff are the fact that and I believe it was a black man that did the suing. The fact that we're suing people because you're not advertising junk food enough on black networks. It's asinine to me. Now the people who are making money from advertisement who wants to sell out the black community because they don't care nothing about your health, you know, one of the leading cause of deaths for black people in America is heart disease and diabetes, hypertension, I mean, literally obesity is rampant amongst the black community. However, you get people who want to sue McDonald's because they don't spend enough advertising to black people. That's like saying, why don't you sell us more stuff to kill us? How dare you, not sell things that's going to destroy our community on our network. Why won't you sell destructive things in our community on our network? Why you just sell it on a white people network where black people ain't listening to? But no, it's about money. Says the federal courts this week ruled that McDonald's will have to face a $10 billion lawsuit allegation that is discrimination or discriminates against black owned media channels by refusing to advertise on them. It says media tycoon, Bryant Byron Allen, a company Alan media group, we're bringing the suit against the fast food retailer with the U.S. district judge for Nando, outgoing, all going, I think it's how you say his name. Clearing the way for Allen to attempt to prove his claim in court. So they're
Why the Left Is Normalizing Myocarditis
"Many of my Friends are suffering from myocarditis. Are the leaders ever going to apologize for the mRNA gene altering? Intervention that they pushed on all of us. Well, there's a new advertising that's normalizing. Myocarditis and children play cut one 23. I've been into fashion since I can remember. But one day I just stomachache so bad. I didn't want to do anything. The team at New York Presbyterian said it was actually my heart. It was severely swollen. Something called myocarditis, but doctors gave me medicines and used machines to control my heartbeat. Big save me. So now I can become the next great fashion designer. Normalizing myocarditis. One 24, Moderna used to say, there was no incident of myocarditis, and yet we're seeing a very strange uptick in pericarditis and myocarditis. Play cut one 24. In summary and very briefly, the reactogenicity of this vaccine was essentially the same, no better or worse than what we see with any of a number of childhood vaccines that we regularly administer to our children. There was no incidence of myocarditis or multisystem inflammatory syndrome of children.
Why Abortion Fanatics Like AOC Are Obsessed With the Fertility Rate
"Did you see the latest out of AOC? I'm not sure what to make out of it. She's a buffoon, but she has a big following. That's right. She has a fool. So AOC, I only listen to this one passively. Let's listen to this together. In fact, I'm going to be reacting to it. I did see it. I haven't really had a chance to process it. Play cut one 27. But there are quite a few countries that are really struggling because young people under the burdens of capitalism and under living under society that's increasingly concentrating while among the rich, we're not having kids. Or we're not having kids at the same rate. And we actually need immigrant populations to help balance things out. We can't continue to fund social security, Medicare, all of this stuff without immigrants. As she's all over the place. Okay, so first of all, what's so interesting is that AOC is this abortion fanatic and she's all of a sudden worried about birth rates? She's worried about birth rates and she's all about trying to intervene with children and terminate them in the womb. That's number one. Secondly, America's fertility rate is collapsing. There's a lot behind this declining testosterone rates. Too expensive to have children. Now, she blamed that on capitalism, obviously it's the opposite. It's her own government policies of inflation and runaway government spending that are making it to unaffordable. And of course, there's some corporate malfeasance involved in that. According to NBC, they're super happy that the fertility rates are following according to NBC News, the feminist victory at the heart of America's falling fertility rate. So we have the most depressed suicidal anxious generation in history, most psychiatric addicted and least ability to replicate itself. So when you ask young people, well, first of all, they wait way too long to get married in my own personal opinion. That's just a separate issue, but this idea of like, oh yeah, go launch a career and then you're going to be super happy on the back end. It doesn't turn out very well. But that's okay.
Belarus foreign minister blames NATO, West for Ukraine war
"Russia made its case to the world Saturday for its war in Ukraine repeating a series of grievances about its neighbor and the west to tell the UN General Assembly that Moscow had no choice but to take military action At the heart of foreign minister Sergei Lavrov's address was a claim that the U.S. and its allies not Russia as the west maintains are aggressively undermining the international system that the UN represents Through an interpreter he said the future of the world is being decided today It is clear to any impartial objective The question is whether or not that is going to be the kind of order with one hegemon at the head of it He also took aim at U.S. support of Taiwan Washington is trying to turn the entire world in its own
Dissident: 'Iranian women are furious' over headscarf death
"Protests continued overnight across cities in Iran amid an explosion of outrage after the death of this month of 22 year old masha amini while in custody of the authorities The young woman was detained on September 13th for allegedly wearing her hijab to loosely in violation of strictures demanding women in public where the Islamic head scarves She died three days later in police custody authorities said she had a heart attack but hadn't been harmed Her family has disputed that leading to the public outcry protests have taken place in more than a dozen cities according to a tally by The Associated Press based on statements from state run and semi official media At least 11 people have been killed while a state Tibet anchor said the numbers even higher I'm zaria shaklee
Nicole Saphier: Stacey Abrams' 6-Week No Heartbreat Claim Is Wrong
"But here's the audio clip that I want you to hear. This is doctor Nicole Safire, audio clip number 5 profile, Sean. What's going to happen on social media? I'm waiting for those warning signs for information labeling because this was a flat out lie. In fact, matter, especially when you're talking to people and especially when you're in politics and you're wanting people's votes. Unfortunately, people are going to believe what she has to say. But I'm going to just deliver the truth and point out is a complete lie. So at about three weeks after gestation or after conception, the hearts of the cells of the heart, the myocardium starts to rhythmically contract. So really, the heart starts beating at three weeks. Yes, you can start seeing the heartbeat 5 to 6 weeks after conception on the ultrasound. But that's only because it's so small and because of all the other structures are in the way with the pelvis. But that heart is contracting very easy. Early on, it is not a conspiracy. It is not anything to do with what she's talking about. And I think that she needs to be held accountable for the lies that are coming out of her mouth. Yeah, I absolutely agree with doctor sapphire. She's absolutely right. And I think Stacey Abrams knows the truth, but she's a Marxist. This is what you have to understand. This is why I want you to see Uncle Tom too. I want you to understand how far the marxists have taken us. How far they've taken the black community, where we are the people that are going to be most likely to be aborted. Stacey Abrams support this and then she spills out a lie, saying that, listen, there is no heartbeat at 6 weeks. Absolute complete and utter lie
Carl Jackson: There's No Better Place on Earth for Blacks Than America
"You know, I always tell blacks when it comes to America. You can talk about slavery all day long. But what would Satan meant for evil God turned to good? There's no better place to be on the earth for blacks than America for anyone than America. That's why we have a border crisis. So why they don't have border crisis around the world like we have here in the United States. Officer Tatum, he said something that really struck a court with me. It was just a simple quote. But it hit me right in the heart. He was like, this is not black culture. This is a facade and when you watch the film, you see the illustrations of the black rappers and I mean just all the demonic crap that they're into and I sat there thinking and I know he experienced it too. I saw pictures with you officer Tatum with those gold teeth. So I know. I know. I know you know what you're talking about, and he was a cop. But it also struck a chord with me 'cause I remember that I didn't want to be a thug. I was a wannabe thug. It was my environment. It was my, some of my quote unquote Friends. And I wanted to feel safe and you walk around and you just want to feel hard, you want to feel tough, you want to be tough because you don't want to be pumped and I hate it. Living in an environment like that. So it's like you put on a, you know, you put on this facade. It's like a game of charade. But inside, I knew that's not who I was. But I didn't want to be, I didn't want to be a punk. I didn't want to be punk'd. But I can tell you as I as God saved me and changed my heart and allowed that facade to just come off of me, man. It was such a freaking relief.
The 'Wizard of Oz' Is About to Get a Very Gay Remake
"Speaking of turning people off from movies. Oh my goodness. You know, Kenya barris who's a black gay man. He's doing the remake of Wizard of Oz now. He has his ideas of how he wants this to look. So get ready, he said the original was an allegory and a reflection of the way the world was at the time with things like The Great Depression and the dust bowl he's going to write and direct this for Warner Brothers don't forget. So just be prepared for this. He said now we're going to turn a mirror on where we're at right now and take a disparate characters from the LGBT community from different cultural communities and socioeconomic communities and tell a story that reflects the world I think this is the best time to do that. Yeah, sounds great. Instead of brains, maybe the scarecrow wants over plucked eyebrows. Instead of a heart, the tin man may be long for the day he's not hung up on straight boys. And instead of courage, the cowardly Lion wants boyfriend twins. Can't wait to see that new Wizard of Oz. Take the kids.
Is It Safe to Send Your Kids to College in NYC?
"My daughter is a junior in high school and she has a heart settle and attending the King's College in New York City. My wife believed and I believe she has the qualifications. Weed a tour. We love the school. We have close family friends, though who are saying, don't send her because of what they've seen like when shows like Tucker Carlson. I mean, what's is there to collapse of civilization happening in New York City right now? Is it safe for her to come? What do you think, Eric? So that's the big question. Should people send their children here to New York City for college for two to four years? And I actually see the questions in front of me. The woman says I've listened to every podcast that we've done on this program in 7 years since the very first one with Alice von Hildebrand. So I'll heal your hear your answer if you take this one on the air. Oh my goodness. Yeah. Oh my goodness. That was on Hitler's birthday 7 years ago. We said, how can what can we do on Hitler's birthday? The show starts on April 20th. What do we do? And we said, how about getting the widow of one of the greatest enemies of Adolf Hitler on the program that was Elvis and Hildebrand? Wow. Okay. Well, the answer to that question is, I understand the concerns, but I think if you have wisdom, you don't need to worry about these kinds of things. What I'm saying is if your daughter has wisdom, young people, sometimes lack wisdom, but I honestly think that if you come to New York City, you pretty quickly figure out what's safe, what's not safe. If you're in a college environment, you're not just wandering around. So I think a lot of this stuff is overblown. In other words, I think that you see the worst of everything on the news and you think, you know, I get phone calls from people. And I think what are you talking about? That's not happening a lot. It's so rare, but if anything bad happens, they put it on the news.
Constitution stops Charles becoming Britain's 'green' king
"As a passionate climate change activist King Charles the 3rd may find his new position limits how outspoken he can be on the topic just a year ago at the UN climate conference in Glasgow the then Prince Charles delivered a rallying cry to world leaders to act with all dispatch and decisively to confront a common enemy that common enemy is climate change and a topic very dear to the now king's heart however now that he's monarch in accordance with the traditions of Britain's constitutional monarchy Charles must be careful to stay out of politics and government policy the task will prove harder than ever now that prime minister Liz truss's government has lifted a ban on fracking to boost domestic energy supplies Karen Chammas London
Biden: Russia 'shamelessly violated' UN Charter in Ukraine
"President Biden is forcefully condemning Russia's invasion of Ukraine saying it as struck at the heart of the United Nations itself In his second address to the UN General Assembly the president called it a brutal needless war Russia has shamelessly violated the core tenets of the United Nations charter By trying to erase a sovereign state from the map through force That should make your blood run cold Among a series of other global crises the president also noted the invasion's impact on the world food supply saying the U.S. is pledging $2.9 billion to fight food insecurity Parents can not feed their children nothing nothing else matters Sagar Meghani Washington
"heart" Discussed on Heart to Heart with Anna
"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 and power 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 WWW congenital heart defects dot com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more. Before the break in, we were talking about how you got involved with Houston methodists and why it might be helpful to attend a virtual conference, devoted to adults with congenital heart defects, but in this segment, let's talk specifically about the upcoming conference at Houston methodist is hosting in 2021. So you already told us you're going to be talking about mental health, you're going to be talking about nutrition. Do you know some of the other topics that will be discussed? Actually, I do. They're going to be talking about pregnancy and women's health challenges and eyes in mangas syndrome and pulmonary hypertension, also advanced therapies for adult congenital heart failure, which I'm very interested in learning. Different types of arrhythmias, like atrial fibrillation. And this is the other section of the part of how to maintain perspective on heart health in the current age of social media and that's going to be guiding mental health. And then finally, they'll be having the clothes and discussions, which I just found out I was going to be proud of too. Here we go. I can't get enough of you, Annie. Apparently not since I'm going to be there in person. Why not? Exactly. Exactly, why not? Why not take advantage of having awesome Annie alt check all the way from Boston? I think that's fantastic. Annie, how can people register for this conference? Is it too late to register? No, it's never too late to register. So it's not too late to register. I'll provide the link in the show notes, so in case you're writing your bike or you're cleaning house like what Andy said, that's a great thing about podcasts too, is that if you're in a shower, if you're cleaning your bathroom or cleaning your oven, you can still listen to a podcast. So if any of you are doing any of that kind of stuff and you don't have a piece of paper handy, don't worry about it. We'll put the link in the show notes. I'm so happy that it's not too late to register because I think this is going to be a fantastic conference. I've been involved with Houston methodists for years and I try to go in person every year that they have it because I'm not a huge virtual conference kind of go out. But it sounds like it would be worth it virtually. Is this an all day event or you can kind of cherry pick, which sections you want to listen to? Because on the agenda, they give the times so that if your main focus is about health, your main focus is about pregnancy and maybe you don't have time to listen to other ones. You can at least put it in your calendar to say on this date and time I've signed up and this is the link and when I want to go on and listen to it. I love it. I love it. They want this to be something where everyone can understand and everyone can learn something as well. I love it. And do you have any advice for other adults with congenital heart disease or their family members or friends who might be interested in this conference? Yeah, definitely, like I said, sign up, the register has the agenda on it. It has all the information it shows the speakers. Those who are going to be patients and those who are in the medical fields, you can always look us up. Some of us were on Twitter, we're on Facebook. I won't deny I keep mine a little bit private, only because it's also my personal one. But yeah, I mean, you can find us in so many ways. If you do want to reach out to us on any of those platforms, I'm also on Instagram. I'll send us a message, ask us questions that the beauty of a lot of this is if we can give you an experience that might be similar to yours or what you might be experiencing in the future. That's truly what matters. One last question, Annie, and that is, how terribly expensive is this conference? The beauty of it? This is free. That's what I love about it too. They're opening up all this information for free. Yes. And I think if we had this when we were younger, it would give you something to understand and knowing that the community out there is doing everything they can to help us and learn. And then we also then can help them. They don't understand, but we can help them as patients. If we work with them if we tell them what's really going on with a medication, they can then say to another patient, a majority of my patients have felt this way. This is normal or majority of my patients didn't feel that way. Why don't you come in and let's find out together. What's going on? When we work together, we help our systems. Physically. Mentally, emotionally. And yeah, exactly. Love it. I love it, I love it. Oh my gosh, Annie, thank you so much for coming on the program today. Thank you so much. It was so much fun, Annie, that time just live. So that does conclude this episode of hard to heart with Anna. Thanks for listening today. If you enjoyed this episode, please leave a review of our podcasts on Apple podcasts or YouTube or wherever you listen to your podcasts and remember my Friends. You are not alone. Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart with Anna with your host having dorsky can be heard every Tuesday at 12 noon Eastern Time..
"heart" Discussed on Heart to Heart with Anna
"You were able to look past all the wires and tubes and everything and just focus on Daniel. Yeah, well, I wasn't allowed to pick him up, and I wasn't used to that. I'd had three other babies that climbed straight from one end of me and crawled up on my tummy and found milk, all of their own accord, you know? So, to not be able to pick him up and to be physically in the state that I was in, I guess I felt like I was watching a movie. Yeah, I can see how you could feel that way. Wow. So he was lucky and did not need surgery within the first couple of days of life, which is unusual for a single ventricle kid. A lot of times those single ventricle babies, they have surgery within hours or definitely within the first day or two. He made it all the way to 21 days of age. Were you able to take him home or did he spend all 21 of those days in the hospital? He stayed in the nicu in the high care end of the ward for about a week. And then they decided that he was really occupying a bed that someone else could make better use of. Wow. And the nurse just said take him home. Oh. And of course, I was terrified. I really, that was terrifying. I was going to say those must have been the words that you were waiting to hear. I knew that the child would hit heart failure and I didn't know what that would look like. Sure. But I was told that once he heat heart failure, I should just bring him back. And I'd like to show so simple. Yeah, I live three hours down the road. Yeah, so it's not across the street. No, and I know I'm ex police and I've got urgent duty driving skills, but I don't have lights and sirens anymore..
"heart" Discussed on Heart to Heart with Anna
"Let me before the break you had us on the edge of our seat with what you were going to do. The first doctor said termination and made it seem like that really was the only option, but the second person who was a pediatric cardiologist actually gave you a glimmer of hope. So tell me where you went from there. I'd say I grabbed a hope and I've been hanging on to it tightly. And following the advice and the directions that that man gave me ever since that first mating. Now, you said that Daniel had extra cardia so that adds a little layer of complication to a kid who is already pretty complicated. So he's a true single ventricle heart patient. It sounds like, is that true? Yes. Okay. And so he's not like a classic hypoplastic left heart syndrome or hypoplastic right heart syndrome. He's pretty darn complicated. He's diagnosis originally was tricuspid atresia. He had a congenitally corrected transposition of the great vessels. He had numerous I guess days and various days. But I think the most challenging part of his diagnosis was the fact that the dextrocardia complicated things and it wasn't until he was born that we realized the front of his heart faces the back. So which ventricle is his big or ventricle? Was it the left one or the right one? Because between having dextrocardia and congenitally corrected transposition of the great arteries, that could make it really confusing. In my own heart, I'm not sure which side I know that Daniel has one ventricle and that's the one that we work with. It's kind of becoming significant which side because of the way we re plumb these heart. Okay, okay, that's fair. Well, he has a fontaine heart. We know that from the intro. And so that's exactly what happens with the front hand heart..
"heart" Discussed on Heart to Heart with Anna
"I was just in a position like I am every single other day of absolutely powerlessness. It's a lifelong problem that Daniel Scott and this was my commitment to him. I would care for him and love him and do all that I could for him to give him whatever life he's been blessed. What lessons can we learn from our adult heart warriors? Why might a heart bomb write a book about her life experiences feeling with Kaggle to heart defects or CHD? How does a heart mom use her personal experiences to fight for others in the hospital? Welcome to heart to heart with Anna. I am Anna jaworski. Like today's guest, I am also a heart palm. My son, Alexander was born with a single ventricle heart. In 1994. And here's the reason I have the host of your program. Today's show is Libby Andrew, Australian heart buff and author..
"heart" Discussed on Heart to Heart with Anna
"This is really awesome. Conquering hd dot. Org is where you can find more information about everything we're doing. We are right now preparing for annual conference and february february twenty seventh. Twenty twenty two. It's going to be in washington. dc and. we're very excited that it will be in person this year and we're expanding that to invite speakers to talk about different topics such as access to quality care mental health issues the heart and brain connection and touching on things. That aren't as fun but are still stressful. Like insurance shoes talking about all those things and then that will lead into preparation for doing the advocacy work conversations on capitol hill. And then the next day we'll go talk to our government. Representatives and talk about the importance of keeping hd a priority then. It's perfect i. I've gone to the hill before to do advocacy work with the adult. Congenital heart association. They didn't have a conference beforehand. Really get me fired up in prepared for it. Although they did have a session where they taught us what it was. That was coming up so that we would be informed we would know the numbers of the bells and everything you need to know and this is not the kind of reformation. That's intuitive we've really work with each individual and we really teach patients and families to craft their stories in very succinct way to make an impact it can be nerve wracking going to dc. You got a pen of steph up but at the same time we do a fabulous job during preparation work and going through all of those terms and the asks that were reviewing for the year. It's a foolproof method. I promise you will come out of there. Feeling very confident proud of what you can accomplish absolutely when i went. I took my older son. Joey who is three years older than his baby brother and we let him tell his story and just like what you're saying the a h. a. Also helped us to crafter story. We had time to sit down and work on it in practice on one another before we actually went and spoke to the lawmakers. When joey told his story he actually made the young lady who is listening to him. Cry this does not just affect the patients and the parents. It affects siblings. The grandparents and i think that the people who listen to us were definitely touched liz. I was so impressed to see that. Just six months. After allies for surgery you started volunteering with concrete. hd and now you're a staff member so tell me how people can get involved with capri siege the different positions available. I'm proud to be a part of this. There's so many different opportunities to get involved again. We do have seventeen state chapters. So i would suggest one of the first steps to be to go to our website. Conquering chp dot org and going to the link to see if you have a state chapter near you and reaching out to people that way. We also have different sub committees. So if you're looking to get involved in reviewing educational materials or just connecting on a different level doing advocacy work. Things like that reach out. Reach out to me. And i can kind of put you in touch with the people who are running the different volunteer committees one of the best ways is to come to dc. We found that people who go and advocate. Just get fired up. And that's when that real love of getting involved on the bigger scale is kick started. You have the ability to. I would just highly highly suggest to come to that while. I can't wait for february. I'm really hoping it's going to be a warm february. An washy breeze the texas sunshine with me. I can't wait to meet you in person. And i have a feeling if i go in february. I'll get a chance to meet you in person. Liz absolutely that sounds great. I'm so excited. Once again france we have this lunch alert activity. That's in august of twenty twenty one and you can sign up with the length that will happen my show notes but don't stop there get involved with conquering seed. Hd their rate advocacy group. There are helping people to understand so much. More about congenital heart attacks if you have a message that you wanna share. This is a group to work with. They will help you to get your message out there and this is your village friends. This is the group that can help you to change wallace in the united states. That's just huge changing laws and getting funded research. That's what we wanna do. We want to conquer see. Hd when it be nice if a certain hyman future from now we just talk about jell heart defects as footnote in the medical journals. Because you actually conquer it. I think that would be amazing. Thank you so much list for coming on the program today telling us about eating. Why i love learning about you i am mattie and how you became involved with concrete. Sounds like you're there from the ground up which is awesome to see that you have been involved for so many years that speaks highly of conquering snitch. Thank you so much. It's been a pleasure to be with you today. That's offered this week's episode my friends if you enjoyed this episode of heart-to-heart with damn please take a moment and athlete for review on whatever platform. You use to listen to our podcast whether it's iheart radio speaker. Whatever it is that you're listening win. This helps people to know what our podcast is. All that and remember my friends. You are not alone. Thank you again for joining us. This week we hope you have been inspired and empowered to become an advocate for congenital heart defects community part to heart with anna with your host damage. Gorski can be heard every tuesday at twelve noon eastern time..
"heart" Discussed on Heart to Heart with Anna
"For all of these decades susan. Well thank q anna and you're very welcome. I'm learning to say. Thank you. And i guess the biggest thing for me is i wanna thank you for what you're doing because none of this would have happened with amy or myself if you hadn't been a wonderful heart mom and realized what your purpose was and working so hard to connect everybody in the global cardiac community so i just have to reflect back. We wouldn't be here. We wouldn't be connected without you so thank you. thank you. Thank you for your work Well thank you. I appreciate you saying that idea. Feel a bit alexandre's heart defect. Oddly enough has given me a new purpose in life. That i never would have guessed. Because i'm such an introvert that i never would have. Thought it'd be giving speeches cass. He totally brought me out of my shell but it has been such a delight to help make some of the connections that i've made and it does feel like this is my purpose in life. It's been incredible. Look all the connections. You've made nationally and globally talk about getting pushed out of our comfort zone. It's almost like that's where the miracles fly is on the other side of the comfort zone. That's so beautifully said. That is so so true. While i'm so happy that you're going to give me an excuse to have you back on the show. Keep coming up with all these creative new projects. I walk on this show so we can talk about them. This has been totally delightful friends. I'll make sure that. I put the links susan mentioned show notes. So those of you who are driving or jogging or on your elliptical. You don't have to worry about grab a pen and paper. I have to do is check. The show notes the message description of this show. So thank you susan did. I'm looking forward to have you back on the program. But that does conclude this episode of heart to heart with anna. If you enjoyed this episode of her within a please take a moment android line facebook or on my website and let me know what you liked about the episode and remember my friends. You are not alone. Thank you again for joining us. This week we hope you have been inspired and empowered to become an advocate for the congenital heart defects community part. Anna with your host damage award. Ski can be heard. Every tuesday at twelve noon eastern time..
"heart" Discussed on Heart to Heart with Anna
"More before the break. We learned about your work as a medical illustrator and it is a much more fascinating job than i ever could have imagined susan. How did this work inform your practice as a professional artist. Because i know you do things outside of the operating room gas. Now i have the privilege of working in my studio. I was gonna laugh out amass but now that covert happen. I know right thankfully. I've been mask. Listen my studio since. I've been the only want their art partner. So this is good. And i think that love of realism the love of the layering. When you look at the work that we're doing now there can be up to nine layers of material. And i always like to have that light that it feels like it's emanating from behind and i think that my work has always literally and metaphorically come from the heart. I love that. I saw an article about you. That the two worlds of art that you live in where both highly influenced by the heart. And i just felt that was civilly. We'll put a link to that in the show notes so those of you who would like to go and learn a little bit more about susan will have an opportunity to do so. Tell me about some of this other artwork. You said that. There's lots of layers. But when i saw the pictures of the other artwork that you did it seemed more abstract. And it makes me wonder if maybe now you're moving more towards your mother's realm. I think i have a foot in both the abstract and the realism and even though now the works. And i'm doing with my partner terry. Rachelle tends to be more realistic. There always is an edge of abstraction so it is quite lovely that everything's kind of coming full circle your. I love the flowers that i saw. That did a so so gorgeous. Now when you were a little girl and you out with your mother and your grandfather with his easel and his tie everything. I just love the picture that. Let my mind where you drying flowers than were you drawing things that you saw nature then. I was always connected with nature. I have these little tiny intricate drawings of flowers and mushrooms. And anything i could find pine cones. I've been always influenced by nature. And that's where i go. Probably for my personal renewal. Probably the reason that i love long distance running and it's also been my inspiration for my paintings. Even the abstract ones that the light the shadow trying to paint in the feeling of the temperature in the wind. Nature's always were. I went to kind of decompress when things get tough. So it's been my healing place so you would spend six eight eighteen hours in the operating room working on these thankfully only once eighteen hours. Yes even imagined wants to that but that had to have been a very stressful environment. Would you on your time off. Sometimes do some of this other work that we're talking about as a way to decompress i. Would it would be other artwork in. It's interesting when i would leave the hospital operating room. I would just let my eyes rest in the landscape around it. You know even if it's the road the trees the plants so that i could make that almost like a visual break from where i've been just helped me in that drive home to just kind of unwind and decompress. I love that i now. People are going to be curious about your artwork. And i know it's available in two different galleries as well as online. So can you tell us where we can see. More of your art you can see more. My art My website it. Susan russell hall dot com and then also wrestle richelle and then the freezing gallery in sun valley. I just love all the stuff that i saw that she did online. Especially you in the studio. It gave me a much better sense of what it is that you do so before we add. You have to tell us about this. Pyro graphic art. I've never heard of that until i started reading about you. How in the world did you get involved in this well. I started with caustic. Seventeen years ago the in caustic just means burned in i use wax and resin and paint. Melt it in a skillet and then i use a blow torch to melt down and then i started doing work with a blow torch on paper finding that edge between beauty and destruction so i have a series of paragraphs which are actually done by flames. On a piece of paper's lowly worked over the paper ticket. This beautiful sepia brown. Feel and i would not have attempted that. Had i not spent years working with the torch and wax so okay so it's kinda fascinating to me. That's where i feel like you've gone more into the abstract. And i can see where your mother's influenced by it have been part of your are without even realizing it. I believe you're absolutely correct. Anna absolutely it feels in a way that it's all coming full circle. Yeah well tell us about what the future holds for you. Do you have some things special lined up for us with your art. Yes there will be a book that will be out soon. Which is very exciting. That's being done now. We had a very very successful show and sun valley. In fact i think there's only at this point one painting laugh so that was really exciting. He's oh delayed sheds and there's some exciting things ahead in twenty twenty three that i'm not at liberty to talk about now but it will be very big and when that happens in when we get things firmed up it will be a joy to share that with you and that to really has a circle about collaboration and healing and bringing people together so this is s theme in your life susan. What i think it is anna. It is really amazing looking back at truly. Is that kind of huge blessing. A huge blessing. Yes feel like your life has meaning and purpose It makes you appreciate and have so much gratitude for what it is you've been able to do. It's absolutely true it's absolutely true. You're just like wow okay. This was my purpose. And i'm just gonna keep at it for as long as i need to right right. I am so glad that amy. Emily brought us together. It has been so much fun learning about what a medical artist dez. And how you do your work and how you've been able to help generations of members of the congenital heart community so thank you for the service that you have provided.
"heart" Discussed on Heart to Heart with Anna
"Had to have been some cases that were maybe a little bit more memorable than others or more challenging as an artist. Can you tell me about maybe some of the more challenging cases you had will the case. It went on for eighteen hours. Where i was in the operating room standing for eighteen hours. That did not count the time. It took to get dressed to go to work to wait for the case to start get home that was incredibly challenging and i remember this surgeon saying you know the best thing about this case. You can't tell whether it's two in the morning or two in the afternoon and the rest of us are like we know it's two o'clock in the morning and yes we're really tired. We wanted to go home and fact. We're kinda hungry and like something to drink. At least case it goes on that long. Are there any visit her to give you a break. You're doing a case like that. I mean certainly after so many hours you get a chance to go rest your feet or gets to drink or eat. i mean. isn't that true. Well it depends on the intensity of the case that was a reduced so there was times i could sit down and i could go out for five minutes and musa restroom or get some water. Get something to eat. But i would always plan it as such so that i knew i wasn't missing anything which was good but there are times where it just is really critical and in those moments you just go to a completely different zone and you're just working and the hours disappear and suddenly you realize whoa. That's been a long time. Because i think you're so wrapped up in what you're doing right. At how critical it is what part to draw though. I mean like uber. Just saying they're critical parts. There's lots of things that are going on. Tools are being passed here in there and changes are being made. How do you know what is that needs to be. Drawn will thankfully with the help of dr tank failure and all the different steps of the procedure. So i could get a good feel for okay. This is a drawing where defect is say. There's a hole in the heart and then now do work to expose unless it's something that you can open up to heart than that's right there. What sort of material us to close it. Or how do you closed in on just showing those stages of closing the heart of closing the defect and then closing the heart. See you just learn of doing the different procedures what the critical stages are and then also what the abnormalities are. When you start looking at the heart because you just the cardiac anatomy from all the work and the studying and the drawing that you've done says value right now take a piece of paper and a pencil and draw tetralogy. Felow gasol heart guests. Ma'am just surveys. That would be helpful for anybody. But that is etched in my memory. Yeah i imagine it is. Was there ever a heart. That was being operated on. People just looked at it and said oh my goodness what do we call this. That it's not nice and neat where you know that. This defect in that defect equals tetralogy. Felucca says we know tetralogy. Philo has four major defects that would be drawn. But i am sure that there were some children who it didn't look like there was a clearcut definitive diagnosis. Absolutely that's the thing as hurt surgery on adults. Most adults are born with normal hearts and then over time. Maybe they need tab. A graph because some of their arteries are clogged or excluded. They may have thous- because beazer they've had a disease or infection. Processes affected the ballots or they've just worn out but they're basically normal heart structure where with children. You can have an array of abnormalities. That may not just relate to the cardiac function but to lungs and skeletal functions as well so there will be a multitude of things that can happen. And you can put those diagnosis in that category or describe by the various defect sitting there. But you're absolutely correct. That's one of the things with being there in the operating room and being a medical artist is you can document those cases where there's a number of different things wrong with ventricles and foulds and arteries an unusual connections or lack thereof right like especially to the lungs. I ever heard that. That's a real major situation that sometimes they're not anticipating that my goodness like the coronary arteries are connected properly or something like that. That she wouldn't really think about with the baby. Absolutely you're absolutely right. You can have a single coronary. Artery can have a plethora of abnormal coronary artery. We tend to as adults think of coronary arteries it over time. Maybe there's too much plaque that spilled up and then they become a -cluded versus with the children. They're just born that way Were you ever in the operating room and you were working on your sketch of the heart but it became apparent that there was something wrong with the lungs. And did you ever draw any of the other organs as well to show. Relationships are different. Sizes are problems that might be occurring absolutely and with and also doing general surgeries cardiac surgery. There's a lot of times where you know. The bodies and amazing puzzle and so if one piece isn't quite right it can affect a number of others so yes things with the lungs and trachea and diaphragm. So you're absolutely right. And i would do diagrams sometimes with embryology so you could understand how that hart was formed that way as well as just functionality and sometimes helpful to have the before and the after so parents could understand how the blood gets oxygenated and functions anymore normal way. Anna jaguar. ski has written several books. To empower the congenital heart defect or c. hd 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 hd community and as 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 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 defect community to uplift empower enrich lives over community members. If you would like access to free resources pretending to the community please visit our website. At www congenital heart defects dot com for information about hd the hospitals that treat children with hd summer camps survivors and much much.
"heart" Discussed on Heart to Heart with Anna
"Issues pertaining to congenital heart disease or bereavement. You're listening to heart-to-heart with anna. If you have a questionable comment that would like to address on our show. We sent an email to energy. Gorski 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 with them before the break we were learning a little bit about your artistic background and why you chose to become a medical Which i'm not so sure. It was a choice now the conversation. Can you tell us a little bit more about what the work of aside from standing on your feet for eight hours with just learned. I really had no idea before we were talking that that west so strenuous for you and to be even more complicated that you were sometimes running in between operating rams had you keep all of that information straight i worked with a heavy tracing paper called felon and so if i didn't initial drawing of the heart and sometimes you can see it suspended. I'd have that. And then i knew i could slip underneath the translucent paper and then make the changes as the repair is being done and then i would just go back and forth keeping notes on what was going on in the various rooms so that i could go back and forth and i have just a regular file folder that i put my drawings for one patient and then go and for the patient so i keep everything straight and usually the surgeries. Were very different. So you absolutely knew what you were trying. It was a lot of work. It was kinda crazy. Yeah i mean after a while you probably were even more knowledgeable than some of the medical students who are coming and because you had seen some of these surgeries performed over and over and you had drawn. Then you knew exactly what the surgeons were going to do. That is absolutely true. I think you have to really understand something to be able to draw. Accurately and i had a wonderful cardiologist dr laura ten cough who taught me my anatomy physiology and pathology and she was incredible. If you understand something and you can draw than it really becomes etched in my brain so was very helpful. Because i had worked for a number of surgeons i saw far more surgeries and mutually anyone. Surgeon would do because of the fact that i had seen so much surgery. I became an invaluable source. And i don't wanna sound like. I'm bragging at all but i had just seen so much and by drying at you could remember it sharon. Also i'd see different techniques especially in a time of stress. It's very nice and very quiet. Voice you can say well what about this or what about that and then you can just kind of help guide people through. I know dale really dependent on my is at my knowledge. I don't wanna sound arrogant. And i have great respect for what everybody does. I just had seen a lot more than most people had. And like i said in order to be able to draw something you have to really understand it. Three dimensional. How everything comes together. You have to understand the embryology and the pathology and so that was i think also incredibly helpful that i had that knowledge and that was because i had a wonderful teacher who took time to teach me well and you became like an encyclopedic resource. Right there in the operating room for them you know. I think that's true. Yeah i mean six thousand five hundred harps yes. I got tedious. My gosh just always don't wanna sound like i'm arrogant here far from arrogant. I don't think that word comes anywhere close to you. I just think it's fascinating that you really did it. Plan on becoming a doctor are going into the medical field but you had this generous heart and you wanted to help others and you were able to use your artistic talent to help others better understand what it was that they were going to have happened to their children or happening to them. I'm sure when you had patients that were sixteen seventeen years old. It wasn't just the parents that we're looking at. It was the patients themselves absolutely. That's what made standing in the operating room for eight hours worthwhile. It was the fact that i could go out and be with the parents to give them something solid that they could look at and say. Here's what your child's heart look like and here's what it looks like repaired and being able to provide that understanding for people because there's nothing more stressful than turning your baby over his. You know to somebody. There is nothing any little bits of understanding anything that you have that you can hold onto especially if english as a second language and you've got all this medical terminology if english is your first labor is what they call it. It sounds like greek. You're being given this information at a critical time in your life. You're being told your child could die and very well may die and you were doing these strivings since the eighties seventies eighties nineties. I mean so unfortunately the results from some of these surgeries were not going to be as successful as we wanted them to be and so maybe all they have after. That was the understanding of what was supposed to happen. Or what did happen whether it was successful or not. We already know. From having had amy lee on the program that these strikes are treasured by the families and held onto for decades huge honor to be there at that point and that crisis. Because it's really difficult and anything. You could do to help with that and help with understanding regardless of how things turned out. Because you're right. I started in nineteen seventy nine and we didn't have the technology or the drugs or the equipment that we do now with a lot of the congenital heart defects was very high morbidity mortality rate. Just being able to offer someone understanding that understanding that this isn't sustainable with life. But everybody did everything they could just yet. My hope just that there was some way that that would help with the grieving process. Have just offering that understanding. Yeah knowledge is power. Knowledge is power knowledge is power. Absolutely what. I was doing research on you madam. I found out that there was somebody who actually took your drawing habitat to make out so true. How did that make you feel was incredible. Love it telling contact with that patient. Are you ready for trial and so it was really wonderful. I love it. I love it and that's some children actually use your drawings as their sockets project. Oh my gosh and let me tell you everyone that did got the blue ribbon on like i. I love that though. Because which you've done is you've given them a tool to understand a hidden defect. That empowers them. I just love that. I love the fact that you're empowering the paratrooper empowering the patients.
"heart" Discussed on Heart to Heart with Anna
"In your twenty two. Why don't you stay up all night. Busy oh my goodness so. It's almost like it was destined by god for this to happen to you totally. I mean i saw you come in. And here's my portfolio and oh by the way you're hired and now you get to stand in the operating room and draw this procedure and i'm like oh my gosh. I had physiology class atty class. I had anatomy for artists. Which i had an idea of a skeletal structure and soft tissue but was not prepared to be in the operating room with terminology. I did not understand. This is not like doing spill life drawing no anything like it now okay i have as squeamish stomach and when it comes to looking at blood i am not very good at that. Mostly said no i would imagine. Most people aren't did you ever pass out in the i. I will tell you anna my very first day. When i was there with sketchbook there was a guy behind me and standing there the whole time turned out to be an anesthesiologist. That have ten dollar. Bet that i would pass out before the end of the case and he was there to collect me and the money did you send him home. Empty-handed empty-handed told empty handed. I completely lose it. We're still good friends to this day out. Awfully and i've squeamish as well but i think the thing is you become so focused on what you're doing and everything's moving so fast and you know that what you're doing is really important and you've got to capture that well. I was amazed to see that you have over. Sixty five hundred hearts that you've drawn in the operating room. That's a lot of hearts. Can you walk me through the process of what it was like for you to drop a search him was operating on those babies and i'm sure they weren't all babies. I'm sure they were babies. All the way on up in age right absolutely and i i work for a group of surgeons and there were seven of them so i also did adult surgery adult cardiac surgery pediatric general surgery and pediatric cardiac surgery primarily all my drawings were of pediatric cardiac surgery. Which is kind of birth to about eighteen. And i think that for me. I would often meet the parents ahead of time and when you go in there. There is such a team working around that child that you're just part of the team and was sat focused because i'd worked for a number of surgeons of trying to get as much information down as i could especially if two cases were going on at the same time you're running back and forth from one room to the other. What are you really absolutely trying to document what you need to get. That's always hard when you're trying to be two places at once. Yeah i was. I can't even imagine that. So be specific with me. Because i'm trying to picture this. And i'm just mom i don't live in the operating room picket. 'cause i don't because two but when you see pictures movies and i'm sure it's not always accurate which you see in the movies or tv you see people standing around where an artist in and i just had dr beauvais on my show and i was talking to him about operating on these hearts the size of walnuts and he said well. We have very good magnifying glasses. It i'm thinking out defying big enough for me. I'm heart hard. Finding the surgeons have these magnifying glasses. But what about you. As an artist would stand on a two tiered lift so i look over the shoulder of the surgeon and i would document drawing sarah unless there was fouled surgery. And then i'd be more at the head of the patient by the anesthesiologist. And i would get a better view there because i'd be looking down into the heart so if there was any aortic valve or pulmonary valve so i just moved from one place to another to try to get the best view the end they were obviously very accommodating which was wonderful. So that's where i would stand. I read the chart ticket a full history of the patient and any previous surgeries. So there'd be a diagnosis. And then all the other surgeries would be documented. And then the height the way bypass times whatever was pertinent medical information to have and then there would always be an initial drawing of the heart and then as many drawings as needed to explain the entire repair and everything would be labelled so you could see the anatomy and how everything progressed from the original defect to the completed repair. My son surgery took eight hours. How may that you were not standing along. I would yes. I would be there for eight hours and in fact my girlfriend is pediatric surgeon. Said she was sure. That's why it can run marathons because they spent all that time standing in surgery.
"heart" Discussed on Heart to Heart with Anna
"Tonight, Forever by the baby blues, sound Collective. I think what I love so much about the, the city is that some of the songs were inspired by the patient's, many listeners will understand many of the different songs and what they've been inspired about it. Our new album will be available on iTunes amazon.com Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital. Heart defects, join a music home tonight for em. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in a podcast, are not those of Hearts unite the globe, but I bought a house and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. You are listening to heart-to-heart with ammo. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at heart-to-heart with Adam. My name is Anna at Heart to Heart with Anna. Now back to heart-to-heart with Anna. Before the break, we were talking with Aaron and learning about, his heart condition. In this segment will learn more about, including learning about his health, after his surgeries and what he's up to you today. How was Conway's double-switch, operation and Recovery Well, as it turned out Conway's double-switch was not without complication. In fact, it felt like you struggled with just about most of the risks listed on the consent form, is anatomy. Did prove it more complex than it had appeared initially on Echo, and it took a lot of creativity from dr. Beauvais due to the position of his vsd. He suffered from complete heart block and his own. No, never bounced back and he's like, several fevers throughout the recovery. Even though the cause was never really found, he was found to have an allergy to an antibiotic. They were using to fight what they thought was obsessed. And the most impactful complication was a grand mal, seizure that took place about thirty hours post-op long, it lasted a long while about 45 minutes and following that we had a totally different baby on our hands. He lost all of his Milestones where he had been sitting up, he had been rolling over, he was developing em. Millie on track. They no longer could hold his head up. His eyes weren't working in unison. You lost the ability to suck and swallow. He had to be tube-fed. He wasn't tracking objects or reaching for toys, but like, he just wasn't even waking up necessarily always agitated. Yeah, he was just in this totally different state. It was some of the medications. We gave it time for all that to wear off. He just wasn't there anymore, that same baby. You said he had to be fifteen pounds. So, how old was he when he had the double-switch? He was just prior to turning six months old. He was over ninety pounds at Birth, so it didn't take him. All that long to get, it was okay. Erin, you're a saint. Oh my God do his younger brother was actually ten twelve years. Yeah, he's one of the smaller kids, okay, but good thing it's six months their brains are still kind of like jello. I mean that's very elastic. Yeah, they the dog. Started, they said that baby's brains are amazingly plastic, they can form new. Pathways relearn all of his lost skills and he did, he did just that. So, really oral aversion and the tube feedings probably the inconvenient at the time, from my friends who have had babies have been to Fed. That is one of the most life-changing events to happen to them both when they get the name, and when the tube is removed, right, right. He still had the energy. He never did get the G button because maker was actually kind of blocking access. He had an abdominal pain and they would have had to move that and nobody really wanted to touch him at that. They they're like, let's just leave this kid alone a while he does so long. Wow, okay. Okay, wow. Well you said the magical name. Dr. Edward Beauvais, did it just happen to be that you were at the hospital where he worked or had you done rebirth? Search. And that's 6 months to go to the hospital where the best surgeon was located. Well it took a lot of research actually and for a condition like c m a g a there was not a whole lot of information out on the internet in 2007 about it. We happened to stumble upon a group of parents with kids with c c. T j on a Yahoo listserve. So this was pretty Facebook for me. I was not even on, I was. Yeah. So there was a Yahoo listserve and we introduced ourselves and told everybody that we had this child and this is what we've been told about him and our doctor here at the time of diagnosis. He said we think when he's fifteen pounds he should get this surgery called the double-switch wage and he presented his case to our local surgeons. And they actually wanted to take a wait-and-see approach. They did not want to intervene at fifteen pounds. And so that kind of caught me off guard because one thing I I just wanted it over with. I wanted him to have a surgery and move on. And let's live our life and go back to normal and I wanted him fixed home in the other part. Kind of made me nervous. I thought, well, if they want to just see how he does like this, maybe it's because they don't have the experience with it. I know it's a rare condition and only like half a percent of all congenital birth, defects are cctga and so maybe they haven't seen as many cases. So that's reasonable. I shared that update with the group and several people answered back and said, you need to maybe get a second opinion. When I kept seeing the same surgeons in the same hospitals as places that people had had good outcomes. We took our child here and we took our child here and we've known Network back and we had a great outcome and so I asked our cardiologists if he would send Conway's records and information to those surgeons and dr. Beauvais is was one of them. One was dead. Austin one was in Michigan and one was in California. And so that, where are you located, where in st. Louis Missouri. So, oh, so you were going to have a trip? No matter where. No matter what it took that traveling quite a distance. Yeah. Okay. So it turned out that are cardiologists here. Had had a relationship with the University of Michigan. He had done his job in pediatric cardiology at Michigan, and he already knew doctor Beauvais and knew of him. And so that was one thing that kind of swayed us toward Michigan of the biggest thing was that doctor Beauvais called us himself to share his opinion on both, what procedure Connie needed, as well as when to do the procedure, he spent like forty-five minutes on the phone going over all the details, answering any questions. We had, we did get an email from Boston and our cardiologists actually. Persuaded us, not to even attempt to get an opinion from California. So we didn't but doctor Beauvais and the name. From Boston, both agreed exactly on the timing and the procedure, when we had the opinions matched from Michigan and from Boston, and they were different from what our Saint Louis opinion. Was we felt confident in moving forward with the double switch in the timing. And then because of that relationship that are cardiologist had with Michigan, having been a fellow there years and years before wage. We thought that ongoing follow-up and ongoing communication between the two Physicians would be better off in the long run, and that makes so much sense when I was on that Yahoo listserve people call.
"heart" Discussed on Heart to Heart with Anna
"Heart to heart with Anna is a presentation of Hearts unite the globe. And is part of the hog podcast. Network Hearts. United Nations is a non-profit organization devoted to providing resources to the congenital heart, defect Community to uplift and Empower and enrich the lives of our community members. If you would like access to free resources page into the CHD Community, please visit our website at ww.w, congenital heart defects. For information, about CHD, the hospitals that treat children with CHD summer camps for Thursday, survivors and much much more. In a previous segments we talked to Kim and Lisa but now it's time to meet serenity, serenity is ten years old. And she's in the fifth grade, she loves reading animals, off online games and watching Gilmore Girls and Netflix. Her favorite colors are purple and turquoise, she recently started archery. She's a big sister to Sean has a German Shepherd, dog and a kitten. Welcome to heart-to-heart with Anna Serenity. Hi. I'm so happy to meet you Serenity after having met your grandmother and your mom. So are you ready? Know you can do this you can do it sweetie. Here we go. Let's start by having you tell me about how to use. You feel about having a mother who has a congenital heart defect. You know what? Congenital heart defect means kind of I made for you Serenity. It may not wrong. Mean anything? Special because your mom is your mom. Most of us don't think of our moms differently like that. So, is that just who mom is? Yeah. Yeah, that makes sense to me now. Have you seen your mom without her shirt? Have you seen a nice car? Yeah. Yeah. What do you think about her scar? No, you don't know cuz my mom had a mole. Do you know what? I'm always. It's a raised area of skin, and I used to think that that was just something that made her beautiful. And I found out much later that my mom never liked her mall, but I always thought it was something that made her glamorous. Okay, Serenity. Tell me about what your life is like in California. What's a typical day like, for you? Lazy. Did you say lazy or crazy? Lazy. Okay. Right now, we're recording this session during covid-19. That's a fun thing to do. And I saw, you have a German Shepherd to do. The cat and dog, get along. Sure. Well, that's good. That's surprising a lot of times cats and dogs don't get along, but since you got her as a kitten, do you think that's why she gets along? Okay? Yeah, yeah. Okay. Have you been to Vietnam ceresney? No. Do you want to go? Yeah. Yeah. What would you want to see if you could go to Vietnam my cousins? Of course. Yes. That would be fun. How old are your cousins? Their old, the older than you but it would be nice to see some other people who are related to you wouldn't it? Yeah. Yeah. Do you want to see the place where your grandmother was raised as a little girl? Yeah. Yeah, I think that would be really neat. Do you like Vietnamese food? Yeah, yeah, it'd be kind of fun to go to some of that open air markets and to eat there often, isn't it? I've seen some beautiful pictures of Vietnam and what the market place looks like it looks fascinating to me. Well, I hope you get a chance to go to Vietnam sometime. I think that would be a really special trip for you to do with your mom and your grandma. Would that be cool? Yeah. Yeah, I'm going to talk to your grandmother again. So, if you could hand the phone to your grandmother, that would be helpful. Thanks Serenity. Okay. You've already moved. Okay scam. You must be so proud of Serenity and Lisa. Yes, was it worth it? I mean, I know you sacrificed a lot to leave your home land and come to the United States but looking at your granddaughter and your daughter now, do you feel it was worth the sacrifice. Yes. What's the best part about being in the United States? Well come here will you the free choice but right now I'm okay but still not a four people live, you know, and we can do birth. And huh. But that that's okay, my family, okay? But now the people they live a little bit proud and Country will be off. Yeah. Do you want to go back to Vietnam and take Lisa and sorority to see where you were raised as I plan to go the time. But so I wait we'll wait and I go back over there. Yeah. Oh I think it would be a wonderful trip for the three generations. Yeah. Yeah for you and your daughter and your granddaughter. I think that would be just lovely. Yeah, thank you so much for coming on the program today and for sharing part of your journey with us. Kim right. Thank you. Okay, you wouldn't talk with the shower, right? Yes, ma'am. Okay. All right. Thank you very much. Thank you, sweetie, Lisa. It was such a delight talking to your mother and your daughter. You are quite blessed. Aren't you to have such lovely women in your life? Yes. This or anything special that you would want people to know as a heart Warrior living wage. Two different Generations, you know, living with your mother nearby living with your daughter is there anything special that you would want them to know about being a heart Warrior? Wow. Yes. Actually I want to understand that for a hard way that lives with three generation is really special because the mom sacrificed everything to take care of you and then turn around you yourself becomes a month or even though at the time the doctor kind of gives you a chance like fifty-fifty or whatever chance certain Warriors. Get mine was the 50/50 and then now to have my own daughter grow up its own. Now it's like amazing, but at the same time, it's scary.
"heart" Discussed on Heart to Heart with Anna
"In tonight, Forever by the baby blues, sound Collective. I think of what I love so much about this CD is that some of the songs were inspired by the patient's, many listeners will understand many of the different songs and what they've been inspired by our new album, will be available on iTunes amazon.com Spotify. I like the fact that the proceeds from this CD are actually going to help those with congenital. Heart defects join me off home tonight forever. 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 I'm a host and guest and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at Heart to Heart with Anna page, at Hanna, and heart to heart with Anna. Now back to heart-to-heart with Adam. I'd like to start this segment by talking to Lisa, our heart Warrior Lisa, welcome back to heart-to-heart with Anna. Well, thank you. I'm excited to be here and I'm thankful that you involved my mother in this quest with us. I know this is so much fun. Your mom is a perfect Delight. I so enjoy getting to know her in the first segment. Well, thank you, she enjoyed, talking to you too. She laughs a lot. We had fun talking and I can't wait to meet your daughter in the next segment, but for the listeners who maybe didn't see your other show, I'll make sure that I have the link to your first show in this show notes, and that's the description of the show. So, at least, so why don't we go ahead and start by having you tell us what it was like for you to live in the United States. Not where your people were from in Vietnam. Wow, honestly. I didn't know no difference cuz I was born here and I can't hear stories from my parents but honest wage. I don't have cousins cuz of course, they're all over there. So I grew up as an only child and I have no Vietnamese cousins. So yeah, I don't know. It's different now that I think of it when I was little I didn't think a lot about it. But as I got older and started my own family, I go oh well, I'm missing cousins. Yeah, yeah. Oh, I'm sure that that would be really different. If you were in Vietnam, you would have probably been dead. Surrounded by lots of other children. Your age, wouldn't you? Yes. So technically I didn't really have kids around my age, growing up. That was Vietnamese or anyone who even had heart condition, like that was even American, right? So it was just me. Yeah, it was just me with the heart condition. Okay, so did your mom, try to immerse you in the United States, call, sure. Or did she try to also immerse you in the Vietnamese culture? Both, when I grew up, we speak Vietnamese at home, but she let me watch American cartoons, so that should start school. I know how to speak English feeling there and then when I started school, of course, I come home, I would talk to her half and half my mom. Be like, how's your day? I beat far as I start slow and then the summer I went really sounds like it changed it to English off, but your mom speaks kind of fast too. So I think you two were probably doing a good job. Keeping up with each other. Yeah, so it was both and then the cultural even enemies food. I know how to use a chopstick and I, you know, join in and holidays like the Chinese New Year. I get dressed up for all that stuff like that. So, that's cool. So, you are able to kind of live in both worlds. Yeah. And I listen to Vietnamese music and American music. Now, what was it, like, having parents who were refugees? Did they fit into the culture? The way your friends parents did Yes. And no. So more like my mom understood, I was I want to say maybe 11 ish to like mid. Probably Junior High. She was okay with me going to movies going home. But Dad on the other hand, was kind of like movies at this age and then he'd be like, oh Adam, he's kissing. Go to movies that, you know, how bring that up, like, sometimes during lectures? Well, if you were in Vietnam, listen this, it wouldn't be like this. Then Mom would come and say, well, we're not in Vietnam, you know, she was born here and we can't really raised her that way. So, you know, if they try to raise me the American way but also influence the Vietnamese. So in a way that Mom was more lenient was the American way Dad was still on the cultural side. Wow well that's nice though. Because it sounds like they provided a balance for you suck. Yes. I ended up having a balance of my first. Dad was getting used to the idea of me, you know, at this age, going to the movies, going to the mall, as in the few in Vietnam, at that, as you be home. Golfing rice, you know, out in the rice field doing home stuff with the family, right? Well yeah, I mean it really is a very different culture there. We have a very child centered culture here in the United States, but in Vietnam, even the children are expected to help out. Well, yes, around that age. They should actually be able to take care of their brothers and sisters that are often do the laundry and back then. Trust me, laundry's not the machine with the dishes and of course, if they had one Rice Field, they would go out there with their parents in the morning and pick up rice like seeds and stuff came home and clean it out. And then make that into rice. Wow. So your parents were kind of in for a shock themselves to see what it would be like, for their children. They had no preparation. It sounds like took me to even know how to raise a child in this country know because I think when they met they already have friends that also came the way they did, but the friends already had kids from Vietnam, so the wage were born there. And then during the war, they came here. Like I want to say maybe toddler to Junior High age, and so they were kind of early born there, somewhere really raised there. So they were like ten eleven wage, that's when the war. So, of course, they came here at that age. My parents however, already like my mom said in her mid thirty, nine, that was like forty-one. So they were kind of aging, and but also just having a child in the United States while they're Aging in their friends, kids already were like teenagers at that time. Oh, wow. So, what was it like being raised as an only child? Do you think that that influenced your decision to have two children? Yes, it actually did honestly what really influenced me is welcome dad passed away and then I thought to myself, well see my lost one parent if I lost the other. I really wouldn't have no one. Of course, my husband and my family, but then in the time I thought, well I want to give Serenity a sibling. In case something happens, took me and my husband and she left alone like as in me, you know? Right. Right. Right. I totally. So that's why I decided to have the second one and a Jaworski has written several books. Empower the congenital heart defect or CHD Community. These books can be found at Amazon.com or at our website, www.sdge.com suggest seller is the heart of a mother, an anthology of stories written by women for women in the c h, d community. And as other books, my brother needs an operation, the heart of a father and hypoplastic left off. Syndrome a handbook for parents will help you understand that you are not alone. Visit baby Hearts.
"heart" Discussed on Heart to Heart with Anna
"Was thinking we should be able to get a grant new rotary and do up occasional training team so we got two hundred sixty thousand dollars from rotary international and helped us bringing teams in teams include eighteen to twenty people. Maybe a little more biomedical engineers at the surgeon. Of course intensive is the heart-lung machine because everybody and they come in and they teach the locals how to do everything allah biomedical engineering to she engineers year and the and so and so forth so as a result we were able to twenty five or thirty children in two time all of them needed open heart. Some of them could be fixed by is really growing. Yeah and the golden day so it's much less invasive chair so this has been really great. I'm there at the hospital every day. I've been no. I'm not assigned every day. I go there just to encourage the parents and say listen this oldham health. So don't be discouraged with the medical science heavies. Days is not that big a deal. Sure open surgery but the doctors are well skilled in dealing with situations. Come up so chances are they can handle just about anything which is true. It is amazing how much they can handle and how well the children are doing today. Especially compared to win. You were first born greg. I find it amazing that you go to the hospital every day to encourage the parents. That's so lovely. its version. Yeah it is a passion. Can you share with me. Maybe one of the most rewarding experiences you've had while volunteering with the rotary club of actually. There's one little boy who's just so much energy and some positive and everybody loves him in walks around with his thumbs up all the time off and it's really great to see him. So i took his picture when he had his operation and it came back a few months later and i showed him this picture and he was all excited. You showed his parents. And i was kind of neat. An we had this other girl who is fifteen years old. This young lady was supposed to be operated on for a cleft lip when she was three but when they went operate her if found out that she had a heart issue so they couldn't operate so when she was fifteen they fixed both at the same time now. This girl went through school. Bean harassed and tortured and picked on. Because so it's just really terrible now. She's absolutely gorgeous. She is so happy. It's just an amazing turnaround to see this young lady. It makes the whole thing whereas while oh absolutely when you see a transformation like that and somebody who had been bullied and maybe lacked confidence and then they have this surgery but who knew she had a heart defect as well. What kind of heart surgery did she have reviews do you think do change his physical appearance and mental chartered so too radical changes big difference difference and it's almost like you're a mentor to these people. Isn't it in some cases yes allah. Yeah i love that. That's just so amazing and now this hospital is not even in your town. You have to travel a bit to get there. Don't you notice close close. Oh well good. That does make it a little bit easier for you to go on a daily basis. That's great well by now. I'm sure some of my listeners. Want to donate to your organization. Can you tell us how they could make a donation. There's two as they can either donate to our club or they can donate directly to gift of light by just going online and look up and give international as to be capable of international gift. Life is different than give international and if they go to the rotary club website. The gift of life program is listed on there. But what i'll do is. I'll make sure that this is in my show in for those of you who don't know what show notes are. That's the description of the show so there will be a link there to the gift of life program with the rotary club. Share your own clubs. Information with me to mike than i can share that as well. I should do that. That would be great. Sounds like you've not only had a lot of years to your life but a lot of quality your life giving advice for somebody who's much younger than you who might also have a heart defect persevere. Premier was just what happened to me. I never paid much attention to it. I mean i guess. I identified myself with it but i try not to let control and pretty much do whatever i wanna do. I always found ways. And i think anybody with a situation similar to mind will find ways to accomplish what they want to accomplish regardless of anything as long as you're determined to have a good life it's not that difficult for me anyway. What do you so you think that prayer and faith is an important part of your life for me was certainly is and you said you were catholic right correct. Are there a lot of catholic churches. they are philippines. There are two images of the baby. Jesus that are recognized in rome. One is infinite prague which was in kazakh zakia. And the other. One is called santo nino. And that's your civil. I did not know that interesting. It has been so great talking to you and getting to know you mike. Thank you so much for coming on the program today. Hundred thank you well. That's it for today's program france. Thanks for listening today. If you enjoyed this episode please consider becoming a patron of our program you can learn more at. Www dot p. a. t. r. e. dot com slash heart to heart. We appreciate each and every contributor even a small donation can make a big difference. Have a great week and remember my friends. You are not alone. Thank you again for joining us. This week we hope you have been inspired and empowered to become an advocate for the congenital heart defects community part to heart with anna with your host damage. Warshafsky can be heard every tuesday at twelve noon eastern.
"heart" Discussed on Heart to Heart with Anna
"And that's the beauty of this community is that they're always fighting for advocacy and awareness. It's so beautiful especially as a healthcare provider and a survivor. so i'm always so main by how unique we all are yet. The same energy. Wars ski has written several books. To empower the congenital heart defect or see hd community. These books can be found at amazon dot com or at her website www dot. Baby hearts press dot com. Her bestseller is the heart of a mother. An anthology of stories written by women for women in the community and as 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 heart to heart with anna is a presentation of hearts unite the globe and as part of the hug. Podcast network heart. The globe is a nonprofit organization. Devoted to providing resources to the congenital heart defect community to uplift empower enrich the lives of our community members. If you would like access to free resources pretending to be community please visit our website at. Www congenital heart defects dot com for information about hd the hospitals that treat children with hd summer camps for c. hd survivors and much. Much more mary before this. We were learning how you became interested in the lever both as a nurse practitioner and as a fontane heart warrior. Now what i'd love to know is how you and your mother came to build a website together. My mom and i were always interested in advocacy for congenital heart disease and awareness and originally we wanted to physically make a blanket or hacks that we could gift take kids in hospitals and we then realized there needs to be something so much bigger. This is just such a big thing that we need awareness through so we decided let's actually create a community online and served meeting heart warriors. Parents siblings really bring the focus to these things that aren't necessarily being discussed like mental health nutrition pregnancy and really focus on these areas and stories. Bring light to other people and really focus on this and do something now. Basically focus on the present and bring more awareness. because that's something we can actually feasibly. Do i love it and before the show you were telling me that you're putting together. A podcast is that also towards the same goal of creating community and bringing awareness all these different topics. Yes we are. Yana podcast. I'll be the person that will be talking. My mom were flipping their every once in a while. But i will be the host. And i do want to focus on awareness advocacy like. I said the main topics that i also wanted to touch on his mental health nutrition focus on bringing awareness of the things that people aren't really talking about and they should be talking about because these things do really affects congenital heart defects survivors parents siblings and they need to be addressed just as much as bringing awareness and general heart defects and the liver disease and all those other things but these also needs to be address agreement contract percent my podcast last year in twenty twenty. That was the number one downloaded podcasts. Was the one on mental health and heart bumps so amazing that is definitely something that we need to address and talk about in twenty six years ago and twenty nine years ago. Nobody was about the mental health of the moms. I mean it's very traumatic to have a child with a heart defect and have to hand that baby over to a surgeon without knowing what the outcome is going to be. It's really scary. yeah. And i didn't realize how impactful that is until i actually spoke with my mom about her experience and then she wrote a story of how the first nine days of my life was and just reading it. I don't have kids but just reading it. I can't imagine what she was thinking how she's mentally and emotionally okay at that time period. And even this thing i would be just filled with anxiety. That's the reality but nobody is sitting there going. You probably should be speaking a therapist or social worker. Let's get you help as well. I don't know if they do that now. But that is something that i think needs to be address and to light a little bit mar. Oh i agree. One hundred percent although to be honest with you when i was in that situation all i could think about was alex. Alex joey i was worried for my heart healthy son who i was separated from at the same time and how having a brother with a chronic illness was going to affect his life and how has is still going to be able to care for both of my children the way they both deserve to be taken care of. It was a very difficult balancing. Act if somebody was said. Oh yeah come over here and talk to this counselor. I can see the value of that. But i don't know if i would have been able to do it right away. Maybe in the hospital. They should do that because you have nowhere else to be but after you go home. It's kind of overwhelming all the different tasks that you have in front of you especially if you have a child who goes home. Who has a feeding tube who has physical therapy and speech therapy and occupational therapy and all these other different therapies that they have to go to unless we could work in therapy for mom while the kid is heavy therapy. You have therapy and we have therapy. Yeah.
"heart" Discussed on Heart to Heart with Anna
"And kind of didn't know where to go with the treatment so i knew that this was.
"heart" Discussed on Heart to Heart with Anna
"Tonight forever by the baby. Blue sound collective. I think what i love some about. This cd is that some of the songs were inspired by. the patients. Understand many of the different songs in what they've been inspired by our new album will be available on itunes amazon dot com spotify. The proceeds from this cd are actually going to help those with cajal artifacts joining music tonight forever. This content is not intended to be a substitute for professional medical advice. Diagnosis or treatment. The opinions expressed in a 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. You are listening to heart. To heart with anna. If you have a question or comment that you would like address. I'll show we send an email to energy. Wars at anna at heart to heart with anna dot com. That's anna at heart to heart with anna dot com now back to heart to heart with them mary. Before the break we learned a little bit about your heart defect in the surgeries. You've had in this segment. Let's focus on your interest in the liver because this is a hot topic. I'm sure you know that this update that we are really talking about in heart community a lot that we were not talking about twenty years ago so first of all. Tell me what kind of care your doctors have provided for you in your liver so this is an interesting question. Because truthfully mike cardiologists was always following my liver enzymes. My tumor markers off until during nursing school. I had my gallbladder removed and then about a month later says inbetween having my pacemaker battery chain. But we all ha-. I played nursing school or something. I don't know but during this whole period i don't develop decides which is fluid in the abdomen. And at that point. I went and saw a hepatitis. And that's sorta one nicer to see a liver specialist but didn't really carry on until recently when i started going into have pathology and i said you know what i want. I really wanted to go see a have tala. Just make sure. Everything's okay because i'm learning more about the cardiac affecting the liver and so forth so it just really started recently that i started seeing a half the tallest and got more invested within the past year to okay. So what exactly have they done to assess your liver. I had imaging done every six months and that involves and ultrasound. Cats can as well as blood were. And that's done about every six months and that looks to see if the liver has any sort of damage to it because when you have this increased pressure your liver can develop scar tissue which can look psoriatic which can then lead to liver cancer. That's what we're looking for but often if you have a radiologist that and knowledgeable about this. They can mistake. The appearance of a congested liver for cirrhosis. Which is where there needs to be more information and research right so now talking about fault are fontane associated liver disease. That wasn't even an expression twenty years ago right. This is something that i think we do need to train the radiologists and hepatic jests because it's kind of new phenomenon you're twenty nine. My son's twenty six. There's this huge cohort that are in their mid to late twenties and even thirties and forties. That have survived to this age. That didn't before so now there's a whole lot of information and a lot more of you patients out there effort before. Yeah it's amazing. How many of us are surviving now. And now we're kind of dealing with this. Oh my gosh all these people are surviving and now all these quote unquote complications from the surgery. Twenty thirty years ago now. We have to make sure that their health long term is okay right. Girls are looking at these other things like the liver and so forth so there's a lot missing as far as the research and knowledge. I don't think it's as developed jet that needs to be. Yeah it's to get there. Yeah i think so too. I think that we have a lot of doctors and researchers now who are realizing. Wait a minute just because they have a heart defect. That doesn't mean that's the only organ that can be compromised and especially as you guys grow up and live long term. It's just like people like me. Who do have a healthy heart. I have to watch out for my other organs as well. Because as they age things can happen whether you have a c- hd or not. Yeah you're exactly right. I'm kind of surprised that you decided to focus on the lever as a profession. Because i don't hear too many nurses who are doing that. Can you tell me why you chose to do that. I actually was going to look into congenital defect cardiology. I did that as a nurse. Not so much. General heart defects for cardiology. And as i went into the nurse. Practitioner world i started doing gastroenterology and then the holiday and i just thought it was so fascinating. Cassisi how the long term effects from the heart diseases specifically see. Hd affects the liver eggs. A long term outcomes. Because there's so much we don't know and there's other liver diseases that i'm interested in as well like hep c. Abbas really passionate about and focusing on that for a while. But then i realize it actually met some patients that were like me with a single ventricle at also had liver disease and at the time. The gastroenterologist that i was working with was kind of overwhelmed. That seeing this liver and this young person.