No Cure, Just Courage: Navigating Life with Congenital Heart Disease

What happens when you've spent your whole life thinking your heart condition was "fixed," only to discover it's actually a lifelong journey? Elle Pendrick shares this profound revelation that came after her fourth open-heart surgery, forever changing how she understood her congenital heart disease.

Born in 1983 with complex CHD in rural Australia, Elle's early years were defined by long journeys to Sydney for medical care. Growing up as the only person with a serious cardiac condition in her small town of Wagga Wagga created an isolating experience—one that shaped her understanding of her own health. The shocking realization at age 21 that her heart disease was not cured but rather a lifelong companion became a turning point in her identity and purpose.

Elle takes us through her remarkable transition from viewing CHD as something to hide to embracing it as part of her story. Her evolution into advocacy work led her to help develop Australia's groundbreaking Standards of Care for Childhood Onset Heart Disease, which includes world-first mental health and neurodevelopmental standards. This unified approach shows how Australia's tight-knit CHD community has created comprehensive care models that focus on whole-person wellness rather than just cardiac function.

The conversation explores fascinating comparisons between Australian and American healthcare systems, drawing from Elle's recent visit to the United States. Her insights reveal how different funding models, advocacy approaches, and support organizations shape patient experiences despite serving the same medical needs. Elle's perspective offers valuable lessons for anyone interested in healthcare policy and patient advocacy.

Most powerfully, Elle describes transforming her medical journey into resources for others. Her book "Your Ultimate Surgery Success Guide" and her platform "Adulting Well" address practical challenges faced by those with chronic conditions—from workplace conversations and financial planning to mental health support. By sharing her expertise on navigating healthcare systems, Elle demonstrates how lived experience becomes a powerful tool for helping others.

Join us for this inspirational conversation about resilience, advocacy, and finding purpose through personal challenge. If you're facing a chronic health condition or supporting someone who is, Elle's wisdom offers both practical guidance and heartfelt encouragement.

Global ARCH’s leadership training opportunity: 

https://global-arch.org/advocacy-training/ 

Elle’s Book on Amazon: https://www.amazon.com/dp/B0DCV2TCQZ

Elle’s Website: https://www.adultingwell.au/

Elle’s Blog: https://www.adultingwell.au/Blog

Elle’s Instagram: https://www.instagram.com/adultingwell/

Chapters

• 0:00 Elle's Realization About CHD
• 0:14 Anna's Story
• 0:54 Update from Anna
• 3:04 CHD News
• 5:17 Interview (Segment 2)
• 7:10 Elle's Hospital Experience at Age 18
• 17:40 Growing Up with CHD in Rural Australia
• 27:32 Australia's Unique Approach to CHD Care
• 33:25 Mental Health Support for CHD Families
• 41:55 Comparing US and Australian Healthcare
• 48:13 Advocacy and Finding Your Voice
• 53:08 Writing a Book and Creating Adulting Well

Transcript

Elle Pendrick: [00:00:00] It was only then when I went through that fourth open-heart surgery and came out the other side that I started to realize that congenital heart disease is for life and there is no cure. Major open-heart surgery for people like me is a temporary fix.

Segment 1

Anna Jaworski: Welcome to Heart to Heart with Anna. I'm Anna Jaworski, mother of a 30-year-old adult with a single ventricle heart and your host. Today's program features a wonderful interview with Elle Pendrick, an inspiring Aussie adult, born with a congenital heart effect.

Elle will share how her medical journey shaped her business and advocacy. But before we dive into that, I'd like to share a little personal update and some news.

Update from Anna

Anna Jaworski: After weeks of wearing the latest removable cast fashion, which was so scratchy, [00:01:00] I had to wear a fingerless glove underneath (far too hot for May in Central Texas). My hand surgeon and physical therapists have given me the green light to go cast-free. Yes, my formerly broken wrist is healing beautifully and I'm officially out of my plastic and Velcro prison.

The hardware they use to fix broken wrists these days is impressive. I might just have bionic parts that outlast the originals. At least that's the hope. While it's not open-heart surgery, this experience has given me a new appreciation for how long it takes a body to recover after trauma. We truly live in a golden age of medicine.

So many things can be fixed, patched up, or improved with science, patience, and in my case, a lot of awkward, one-hand typing. What stands out most is that even with modern medicine, healing takes time. I'm not good as new, not yet. [00:02:00] Recovery requires time therapy, and most importantly, a willingness to rest and listen to my body. In a world that pushes us to hustle, multitask, and binge-watch our way through life, who actually makes time for healing?

So here's my takeaway. Sometimes the bravest thing you can do is slow down, rest, and give yourself permission to recover whether you're healing from surgery, heartbreak, or just a tough week. Remember, self-care isn't selfish. It's essential. And if you need an excuse to take it easy, tell everyone your podcast friend Anna said so.

In a few minutes, you'll hear my interview with Elle Pendrick. She'll share her advocacy work and discuss mental health building on this theme of self-care and healing. Before that, let's move on to the news.

 [00:03:00] 

CHD News

Anna Jaworski: Global Arch is hosting a free virtual advocacy training course. This program is designed for patient and family organization leaders who want to advocate for early diagnosis, timely treatment, and lifelong care for childhood-onset heart conditions like congenital heart disease and rheumatic heart disease.

Whether you're new to advocacy or want to strengthen your skills, this is a great opportunity to learn, connect, and lead. 

The course highlights four interactive virtual sessions from July to October, 2025. Mentorship from experienced advocates, and tools and strategies to lead advocacy efforts in your community. Apply now at globalarch.org and I'll put the link in the show notes.

The registration for the training closes May 31st. If you miss this training opportunity, check back on the Global [00:04:00] Arch website for future training opportunities. 

Next up, we'll be talking with Elle Pendrick an author, advocate, and adult born with complex congenital heart disease in New South Wales, Australia.

She has an amazing story to share with us.. 

HUG Message: Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. 

Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community, to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CH HD community, please visit our website at www congenital heart defects.com for information about CHD, the hospitals that treat children with CHD summer camps for CHD survivors, and much, much more.

HUG Disclaimer: This content [00:05:00] is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Interview (Segment 2)

Anna Jaworski: Today's guest is Elle Pendrick. Elle Pendrick was born in 1983 with pulmonary atresia, an intact septum and a leaky mitral valve from a small town called Wagga Wagga in New South Wales. She and her family frequently had to travel to Sydney for care. By the time she was eight years old, she'd lived through three open-heart surgeries.

Two more, followed at the age of 21 and 33. To date, she has had over 20 surgeries and procedures. Elle is an author and has her own business called Adulting Well, a resource for helping people with chronic health conditions. She has been a [00:06:00] CHD Ambassador at conferences in the United States and Australia, and is working with new Australia National Standards of Care for Childhood-Onset Heart Disease, which showcases how Australia is advancing CHD Care with a holistic approach.

 Welcome to Heart to Heart with Anna, Elle. 

Elle Pendrick: Thank you so much for having me today, Anna. I'm so thrilled to be here. 

Anna Jaworski: I'm so excited to be talking to another author. I can't wait to get into that in a little bit. But first, let's start by talking about your transition from being seen by a pediatric cardiologist to your adult clinician.

Babies born with complex hearts in the 1980s weren't expected to live to adulthood, and I believe you may be in the first cohort of survivors who made it that far.

Elle Pendrick: I was one of the first ones to survive into adulthood. There are very luckily, a few people ahead of me, but in the early 1980s, the [00:07:00] survival rate was not very good. And so as I progressed through primary school and high school, it was pretty isolating experience and I'd had most of my open-heart surgeries to that date, and then once I got to high school, I assumed that heart disease was something that I had had and that I no longer had it. And it was just life as normal from there. When I was 18, it was my dad's 50th in Wagga Wagga, New South Wales, in Australia. And I thought I would be very cool and tint, some of my lovely blonde hair, hot pink to be really cool at Dad's 50th birthday party.

Do you remember those caps in the eighties or early nineties, the hair caps they put and then they pulled some of your hair through to streak it. 

Anna Jaworski: Oh yeah. Mm-hmm. 

Elle Pendrick: What I didn't realize is my lovely friend had pulled through most of my blonde hair and streaked at hot pink.

So instead of having blonde hair [00:08:00] with a few pink streaks, I had pink hair with a few blonde streaks. So when I got up the stairs and said, "Hey, look, I've got my hair done for your party," they were not very impressed. And, as the night wore on, we had a great time and we hit the local nightclubs in Wagga Wagga.

I was 18 and I was really struggling to get out on the dance floor. I was kind of good for one dance and then I would get to a point where I just was so breathless I had to sit down and then I would do some chair dancing and then I would think, oh, it's a great song. It was back in the nineties, so so many great songs get out there on the dance floor.

And then I would run out of steam very quickly. So once I got home, I kind of crashed and fell asleep and thought nothing of it really until the next day when I was really not feeling well and I had some chest pains and shortness of breath and called out to my parents and said, "I really don't feel good."

And proceeded to pass out almost. 

So they, [00:09:00] 

Anna Jaworski: oh my gosh. 

Elle Pendrick: Yeah, they carried me down to the car and I, threw up in the garden on the way. And we got down to the local hospital , in regional New South Wales. And as they did in the nineties, they pulled out my massive paper file 'cause they knew me quite well down there.

They said, "Oh, okay, you've got some very serious heart condition issues." And the nurses, came in, in the emergency room 'cause I went straight through with my chest pains and my mom was there with me and dad and they said, "What drugs did you take?" And I was just 18 and I said, "I didn't take any drugs."

And obviously I'm sitting there with hot pink hair and very gray, very pale, low pulse rate, not feeling well. And they're like, "Elle, we can't help you unless you tell us what drugs you took." I said, "I didn't take any drugs." And then they asked my parents to leave and asked the same questions, but more forcefully.

 They let my parents back in and. Mom said, "Well, what'd they ask?" And I said, "Oh, they asked if I had drugs again." Mom had a good chuckle at that. The nurse said, "Oh, you guys [00:10:00] still talk about this stuff?" We're like, "Yeah, and like medical stuff is very common for us. It's not anything to hide or be ashamed of, I'm not gonna lie to you."

They said, "Oh, you'd be surprised how many 18 year olds don't have that experience." And I thought, 'Oh, okay.' Then the next couple of days, I graduated from the emergency room onto a ward and they found out that I had septicemia and pericarditis and septicemia is a blood infection and pericarditis is inflammation of the muscle around the heart.

So being in a regional area, they said, "We don't have the capacity to treat you properly here." I just remember getting onto an air ambulance, flying up to Sydney, and because I was 18, none of my parents were allowed to come with me, so I was alone. And that was the first time I got unloaded with the ambulance onto the street front of a major Sydney hospital with no family and no one there.

As they wheeled me onto the adult cardiology ward, the first time I [00:11:00] had ever set foot on one, they shoved a clipboard at me and said, "Oh, you need a central line sign here. Do you have, health insurance? What's your Medicare number?" I didn't know the answer to any of that. 

Anna Jaworski: Sure. 

Elle Pendrick: And I just looked at them very blankly and the lady just tapped and was like, "Just sign here."

And I was like, "I don't even know what I'm signing for. Sure. Okay, here you go." And went in and had the central line put in and, stayed a couple of weeks. By the time my family arrived, I was pretty upset. The central line process was not fun and I felt really alone and it was really hard.

So obviously I survived that after a few weeks, it really didn't occur to me that, congenital heart disease was for life and there actually is no cure. I just thought that little joy ride to hospital when I was 18 was just something that had happened that was abnormal and that was it.

When I was 21 and they said I needed a fourth open-heart surgery, it was a real shock to me. And it was [00:12:00] only then when I went through that fourth open-heart surgery and came out the other side that I started to realize that congenital heart disease is for life and there is no cure. Major open-heart surgery for people like me is a temporary fix.

Anna Jaworski: Yeah. Okay. So I have to know, did getting your hair dyed have anything to do with the episode that you had? 

Elle Pendrick: No, they don't know where I got it from. So septicemia is... 

Anna Jaworski: That's so weird. 

Elle Pendrick: ...very common. Yeah, it was really weird. But yeah, I looked very cool in all my hospital photos from that trip.

Anna Jaworski: You hate to think of hair dye doing something like that to you, but it seems like that was the most radical thing that you did right before your episode. So you have to wonder if there's a causal link. Did they ask you, "Did you just get your hair dyed or what have you done different or..." 

Elle Pendrick: They did ask all those questions and the hair dye they did rule that out. There's lots of different ways you can [00:13:00] transmit septicemia. And we thought, 'Okay, it's pretty rare. It's not that common for it to just spring up on people, but when it does it can be very serious.' And I was sitting at the hospital about a week into being in Sydney and my dad was reading the newspaper and he said, "Oh, look! This woman on the front page had septicemia.

And then he was reading. He is like, "She didn't make it." And I was like, "Awesome. Thanks, Dad." 

Anna Jaworski: Oh my gosh. Yeah. Dad, you maybe shouldn't have said that out loud. Oh my. 

Elle Pendrick: Yeah. I was like, "Okay." To be honest, looking back, it didn't really phase me at the time because I think I was just so sick. I was like, "Oh, okay, whatever." But yeah, looking back I was like, 'That was pretty serious.' 

Anna Jaworski: Yes it is. You are a complex patient and you've undergone so many open-heart surgeries and procedures. Can you tell us about some of the specific challenges that you have faced growing up with such a rare condition in such [00:14:00] a small town in Australia?

Elle Pendrick: I think one of the biggest challenges living in regional Australia is the amount of medical care that you can get with complex congenital heart disease. They don't have the capability to do all your treatment there, 

Anna Jaworski: right. 

Elle Pendrick: Or there's lovely new highway that goes directly from Wagga Wagga to Sydney now, and it's sort of a 4-5 hour drive. But back in the 1980s, it was a solid eight-hour drive on not a great road. 

Anna Jaworski: Oh wow. 

Elle Pendrick: And it was pretty tricky. Luckily my mom grew up in Sydney and had a lot of family there, so we had some great places to stay when we did go. 

Anna Jaworski: Mm-hmm. 

Elle Pendrick: But the travel was certainly a big part of it, and if there's medical emergency, you need to be airlifted out so I had my first air ambulance ride when I was three days old, and then the next one when I was 18 years old. Because they just didn't have the hospital capability to look after me. Once I started growing up and going [00:15:00] to primary school, we were very fortunate that some of the Sydney cardiologists would travel down to Wagga Wagga, so... 

Anna Jaworski: mm-hmm.

Elle Pendrick: I always remember my parents taking me to the appointment and Mom would have written down on a list, everything she wanted to ask 'cause she knew she had 15, 20 minutes with the specialist. I remember one time we walked in and the doctor just grabbed the list off her and started answering all the questions.

He was prepared. You had to be really prepared living in a regional area. And the other really big thing was school. Being at school in Wagga Wagga, they were absolutely fantastic for me. There was a lot of accommodations made, huge amount of support, but there was no one else at school who had serious health condition like I did.

Sure there were other people who had health conditions, but nobody had congenital heart disease. I didn't meet anyone in my town for [00:16:00] decades with congenital heart disease. So in a way it's a little bit lonely and there was no Facebook community groups. 

Anna Jaworski: Right. 

Elle Pendrick: There was none of that. Yeah. So it was quite isolating. 

Anna Jaworski: It is. It's interesting to hear you because everything you're saying, I'm like,"That's exactly how it was for us too." 

Elle Pendrick: Yeah. 

Anna Jaworski: We lived in a small town in Texas and the hospital was three hours away, which seemed huge. I can't imagine eight hours.

Eight hours! And the concern of 'What if something does happen and time is of the essence?' A lot of the things that you're talking about, we faced the same kinds of problems, but you were a decade earlier, so I know it must have been even harder for you.

I would love to meet your parents. It sounds like they're amazing advocates for you, especially your mom. I always had a legal pad, too. 

Elle Pendrick: There is something special about heart moms, honestly, you can see them coming a mile away and they are very articulate. They know how to fight for their kid, [00:17:00] and heart moms are a very special type of person. 

Anna Jaworski: Thank you for saying that. But you are not only a CHD survivor, but you've also been advocating and helping others to understand the importance of care when they're born with a congenital heart defect. I love what you said about pretty much assuming you were fixed.

Before I became a mom, I was a teacher of the deaf and hard of hearing, and when I taught in a regional day school program, those students had never seen an adult with a hearing impairment. So they all assumed that when they turned 18, they would be able to hear, which seems ludicrous to say it out loud, but they had never seen deaf adults. When I started teaching at the School for the Deaf, where there were deaf teachers and deaf janitors and deaf people working in the cafeteria, it was such an eye-opening experience for the students to realize, 'When I grow up I'm still going to be deaf.' And it's the same thing for you all with heart defects where so many of you [00:18:00] had never seen an adult with a congenital heart defect.

And many of you back in the eighties especially, and even in the nineties, were told you were fixed. So it must be quite a shock for a lot of people to realize, 'No, no, no. This is a lifelong condition.' Tell me about how the Australian approach to CHD care is special. 

Elle Pendrick: It is really quite unique in Australia how we're set up.

 I think it's because Australia is so dispersed, we've only got about 27 million people in Australia compared to the US has 350 million. So we're really quite small and very tight-knit. All the medical professionals know each other quite well. A lot of the parents and patients now know each other and there's some really great ways to connect and make those friendships.

In Australia, one of the most unique things that has come out in the last couple of years is the new Standards of Care for [00:19:00] childhood onset heart disease. So I was part of developing those with, Dr. Nadine Kasparian, who's now over in the U.S. in Cincinnati, doing an amazing job. And she led the development of the world's first mental health and neurodevelopmental standards and being part of those discussions around mental health and neurodevelopmental conditions that can also come with CHD was really fascinating for me. But on a personal level, I had to really reflect on 'What does that mean for me and how does that work?' But in Australia when I sat down in all of those forums, you wouldn't know people and you would be able to connect with people in a very intimate way.

Whereas I think in much larger countries, it's hard to know everyone and who's who. One of the comments that came from the politicians that were supporting us developing National Standards of Care and a National Action Plan for Childhood-Onset Heart Disease [00:20:00] was that it's unbelievable how united and tight-knit the congenital heart disease community is because I think it can be commonplace where there's competition or there's differing views. Whereas in Australia it is such a united front moving forward to get the support that everybody needs across the country. It's fantastic. 

Anna Jaworski: I absolutely love that. And you're right. Here in the United States, especially in the eighties, it seems like there was a lot of competition around who could save people with complex conditions first. There was this huge team in California in Loma Linda that was just convinced that transplant was the way to go.

That was what was going to be the saving grace. And then there was this whole other group on the East Coast at Boston Children's Hospital, and Dr. Norwood led the charge for this. 

Elle Pendrick: Mm-hmm. 

Anna Jaworski: Although he wasn't the only one, but he has a surgery named after him, so it makes him stand out. But he's the one who [00:21:00] came up with the idea of, 'No, we need to do staged procedures and this is the way we're going to handle it.'

So it really did feel like there was competition. It's really cool that now 30 years later, I am seeing that our cardiologists, our cardiothoracic surgeons are much more united and we don't have the same kind of standards of care that you're talking about that's national. But I would like to think that maybe we're starting to move that way.

I know Dr. Gil Wernovsky has been instrumental in helping to create that whole CNOC, yes, the cardiac and neurodevelopmental, you're familiar with this name? Good. 

Elle Pendrick: Yeah, that's the one I went to last year. It was fantastic. 

Anna Jaworski: Oh, he's just amazing. Yes, he is absolutely amazing. And he was at the forefront of recognizing that there's a huge neurological component.

We can't ignore the heart-brain connection, and I've loved how it has taken time, but these [00:22:00] kinds of things do. The first step was to get patients to survive, and then... 

Elle Pendrick: Yes 

Anna Jaworski: ...now that they are surviving, it's like, 'Okay, well now how can we improve the quality of life?' And there's been a huge movement in the last decade especially. What's been lovely is it really has been more of a concerted effort. But you're right, we do have a lot of people and we are spread far apart and that doesn't always lend itself to having national standards of care.

I know that Scotland has been involved. Do you know Dr. Liza Morton? 

Elle Pendrick: Oh yes, I have heard of her and her wonderful book. 

Anna Jaworski: Yes, she has a wonderful book. She has been instrumental in doing research and also pushing for National Standards of Care in Scotland. Just like you here, she is an adult who was born with a congenital heart defect, and she has gone before her politicians to get something in place for all people. Now, Scotland's a lot smaller than the United States or Australia, but when you have different countries that are [00:23:00] taking the lead, it sets a precedent that makes it a little bit easier for other countries to follow suit

Elle Pendrick: Absolutely. And I think even though the United States would be a struggle to get national standards, one of the key things that have really helped us, I think globally even, was the American Heart Association statements on CHD and mental health and neurodiversity.

I think that's made a huge difference globally, pulling together all the research and putting it forward in those statements that a lot of countries now have been able to leverage that to be able to drive their own standards and research as well. 

Anna Jaworski: I love that. I really feel that there are so many different problems that children can be born with, but I have felt blessed that the people working in the field of cardiology or cardiothoracic surgery, that they put the patients first and they're not even hesitant anymore to pick up the phone and call [00:24:00] somebody at another institution and say, "Hey, I have this kid presenting with this, and what do you think of that?"

They do video conferencing. You flew all the way here to learn about the different connections between the heart and neurology, and I think it's outstanding that there are these opportunities for us to teach and learn from one another.

Elle Pendrick: The global community on CHD is really unique, and I know that there's a lot of congenital conditions around the world, but the congenital heart community is one that really comes together globally, and it's really quite a special experience to be part of anything that is done domestically but also globally.

Anna Jaworski: Before we end this segment, I have to ask you about the mental health of families living with chronic illnesses, because we can both attest to the fact that this does affect the family's mental health. Can you share with me some of the changes that you have experienced in that area? 

Elle Pendrick: [00:25:00] I think it's really taken on a new perspective over the last few years, and when I attended CNOC last year, making sure that the views of parents and siblings was taken into consideration was really quite special.

And I think something that needs to be done more and more. I think that as we evolve and now have more adults than children with congenital heart disease, one of the things that we need to also look at is partners and then when people have their own children.

One person with CHD in the household can really change things and can really impact everyone in the whole house. Obviously as a person with CHD, we don't want that for anyone around us, but in reality, that's how it is. 

Anna Jaworski: Yeah. 

Elle Pendrick: So as we keep bringing in more resources to support parents and siblings, I think we need to then take it that next step further for the adults who have partners and children of their own.

I think that's really important. I think families [00:26:00] living with someone who has a chronic illness, need to lean into the new resources that are now available in the digital age. There's so many online chat groups. I've seen dads with kids with CHD, there's moms, there's also parents groups.

And then for people like me as an adult with CHD, tapping into those international resources is fantastic. So I'm part of the American Zipper Sisters Club on Facebook and it makes a huge difference for me having not just a few hundred people, in a chat group, which is really useful in Australia, but an international one with thousands of people.

So when you, have a question, and particularly as a female, and I might have a question about periods or reproduction or after open-heart surgery, your boobs go a bit weird. There's these kind of really female-specific questions that you wanna be able to ask that you've now got these amazing digital forums to be able to ask.

I think one of the other things in addition to digital forums that has come an [00:27:00] enormously long way in mental health support is therapy and using somatic techniques because as someone who's been through an enormous amount of medical treatment as a child, how that resurfaces as an adult can really surprise me at times.

 Working with the trauma therapist and developing a toolkit of somatic techniques and then other techniques has made a huge shift for me. But I think also for the parents and the siblings who grew up in that household, having to watch their sibling or their child through some really difficult medical procedures, I think some of that therapy and that support really can help them as well to move forward, but also, try and accept some of the big feelings that might come with remembering those experiences.

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Rejoiner: 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 @Hearttoheartwithanna.com. That's Anna@hearttoheartwithanna.com. Now back to "Heart To Heart with Anna."

 Segment 3

Anna Jaworski: Elle, I understand that you recently visited the United States, and you said you came here for CNOC. Can you share with me some insights that you've gained about your own healthcare program after visiting the United States? 

Elle Pendrick: Yes. I came in September last year [00:29:00] and I attended CNOC and then I went to Cincinnati to the Heart and Mind Wellbeing Center, and I absolutely loved it. I learned so much, but also got to share the Australian perspective and some of my personal stories.

At CNOC, they had a preceding day of the conference that was specifically about adults with congenital heart disease, and I kicked off an Ignite Talk where I was talking about medical trauma and the medical experiences and long-term impacts of that into adulthood with congenital heart disease, and I think it was really well received and the audience was absolutely fantastic.

Then I stayed the next few days and got to learn so much and participate in a lot of the conversations that keep moving forward. This really special aspect of living with congenital heart disease. When I finished there, I hopped over to Cincinnati and got to do a private tour and speak to a really lovely audience of people in Cincinnati with congenital heart disease [00:30:00] and learn what they're creating with the Heart and Mind Wellbeing Center.

It's really unique. We don't have anything like that in Australia. We certainly have some great resources in the pediatrics area in Australia, but we don't necessarily have them for the adults as well, as set up as the Heart and Mind Wellbeing Center. It's fantastic. I think some of the insights that I gained were particularly around the demographics. In U.S., there's about 350 million people, and about 1% of those, (or if you think about the one in 100 with CHD), that's about three and a half million, which is about 13 times more than in Australia. So with 13 times more population, there's so much more resources there. And it's absolutely incredible what the United States has pulled together state by state, big city by big city, and then in the regional and rural and remote areas.

 When I was sitting through CNOC and looking at a lot of the research America has much [00:31:00] larger Hispanic population and other, minority groups as well compared to Australia.

Whereas we focus a lot on Aboriginal and Torres Strait Islander health. So looking at that perspective and how that impacts and shapes the types of care that is developed and then delivered across the country was really interesting. The other really interesting thing that I absolutely loved being a complete policy nerd, was talking to people about how the health insurance systems work, Obamacare, Medicaid, and other things.

I had a fantastic chat with Carissa Ostrom from Conquering CHD, having worked in Australian policy for a number of years now, I really got to understand and ask some detailed questions around health insurance and how it's attached to your employment and your job in the United States where it's not the case in Australia.

We also talked about Obamacare and then Medicaid. We have Medicare and it covers [00:32:00] quite a significant proportion and our health insurance is standalone and we can choose to pay for that ourselves or not and there's different types of incentives to encourage Australians to get their own private health insurance.

So that was really fascinating to understand how that operates in the United States. And having worked at Parliament House in Australia, which is like Congress in America, I was truly fascinated with the Congenital Heart Futures Authorization Act of 2024. And I had a great conversation with people about how the legislation and the funding comes about in the United States and then how it's distributed.

 In Australia, the ministers in Parliament decided, through some lobbying to develop a national action plan for childhood onset heart disease. It was a united effort by the community led by Heart Kids Australia and moving forward, seeking funding underneath that and applying for grants through the government is a completely different process [00:33:00] than the Reauthorization Act that happens in the United States and the process that you all need to go through to secure that funding.

I found that truly fascinating. The only other really big difference that I noticed from the United States to Australia is that in the United States, you have the Adult Congenital Heart Association, and you also have amazing centers like the Heart and Mind Wellbeing Center in Cincinnati. We don't have those types of things in Australia.

We certainly have Heart Kids Australia, which is incredible, but a dedicated adult congenital heart organization doesn't exist in Australia. I was well aware of ACHA before I traveled over there. I had used many of their resources before, but just to meet people and understand the backend of how it was set up and the different kinds of advocacy work it does was absolutely inspiring and so fascinating.

Anna Jaworski: I am amazed that you don't have any kind of adult CHD organization. I [00:34:00] know in Canada they have GUCH Grownup with congenital heart disease and I think they have something similar to that in Britain. So I'm really surprised they don't have anything like that in Australia. Maybe you can spearhead that, Elle, like you don't have enough things on your plate already.

Elle Pendrick: Definitely crossed my mind, but there's definitely organizations that support adults with congenital heart disease. For example, Heart Kids does an amazing job. They'll have, information sessions, they have their own podcasts. They have other things that are really fantastic resources, and there is the Australian Heart Association, which does have some resources for younger adults. They're thinking between 18 and sort of 55ish and they will have resources, but it's not specifically for people with congenital heart disease. Then there are Facebook community groups. There is Australians with Congenital Heart Disease. Then there's an Aussie zipper club as well, which is great, but [00:35:00] that's a mix of people as well that might just have a zipper for other reasons than congenital heart disease. So it's not to say that there are no resources, but there isn't a standalone one that is like ACHA, which is just incredible. I'm very impressed with them.

Anna Jaworski: It is a really incredible organization. I've been fortunate enough to meet the people who founded it and the parents of the people who founded it many years ago, and it's an inspiration to me how they came from a small handful of people who said, "We need to do something" to what it is today. No small feat Elle! It has been years and years in the growing and changing and moving with the times and now the lobbying that they do.

When they first started out, they didn't do as much of the lobbying as they do now. I have even joined in Washington DC for their lobby day to go and talk to my congressmen for the Congenital Heart Futures Act because it was so important. We had people who flew from all over [00:36:00] the United States to be in Washington and the ACHA organized everything. They gave us training. 

Elle Pendrick: Wow.

Anna Jaworski: They told us what to say or I shouldn't say, "They told us what to say." They told us to share our own stories. That is the most critical thing. But they told us what the bill was, how we could encourage the congressman to support what it was that we needed. It was quite an education for me.

I had never been to the U.S. Capitol to do something like that before, but it gave me enough confidence that later I have been to my State Capitol to do some lobbying for pulse oximetry and for some other things for the Congenital Heart Defect Awareness Week. I went to my State Capitol for that as well.

I think it's great that they come together and they guide you on how to do this and show you one voice can make a difference. 

Elle Pendrick: Absolutely. Absolutely. I think that training is so invaluable. Because our [00:37:00] political system is different, the lobbying and the way it's set up is different as well. The leaders of that in Australia is Heart Kids and some of the key clinicians and some of the key advocates in the community and it's been very effective. But as for going into the states and territories or to see your local member, I think that's something that we're still building towards.

Anna Jaworski: I'm sure there are other adults with congenital heart defects in Australia now who think 'Maybe I need to get involved in lobbying.' How would they get started? 

Elle Pendrick: I kind of fell into it. So I was very fortunate. I was finishing a job at Parliament House as a ministerial advisor, which I think would be similar to being an advisor to a senator in your Congress.

And I'd been doing that for a couple of years and was stepping down out of the role. I saw my cardiologist one day for an annual checkup and he said, "Oh, you might be good for the National Action Plan." And I was [00:38:00] like, "I dunno what you're talking about." And he said, "Oh, let me introduce you to the CEO of Heart Kids." This was in 2018, I think, and got to meet him and he said, "Yep. That's great. You've got a mix of, I understand the national policy. I understood the political landscape and I had the personal experience." So I was 34 years old and got to be on the National Steering Committee and then part of the working groups to develop the National Action Plan, and then the Standards of Care as well, which was fantastic, but I really did kind of fall into it and was just fortunate to have that unique mix of skills and lived in Canberra and understood how politics worked and how policy was developed. So I was able to contribute that as well as my own personal experience. So after I was part of that process, I applied to be part of the Board of Heart Kids and was on the Board for a term and a half until I stepped off to launch Adulting Well, and that had been a complete [00:39:00] eye-opener experience.

When I joined the National Action Plan groups. I hadn't really met that many people with congenital heart disease, so I was 34 and I think I'd met a handful of people, like four or five, maybe as an adult. And sitting there then talking about the needs of an entire community, that, to be honest, I didn't really know, was quite overwhelming and really made me reassess my identity because for such a long time I had still been ignoring my congenital heart disease. It was this thing on the side, not a big deal. Don't want to talk about it. Nothing to see here. And then I had to change my identity to really think about where does congenital heart disease fit in with that? Because I had tried for so many years, to be fit, healthy, career-driven, really wanting to achieve, I don't wanna be seen as a sick girl in the [00:40:00] workplace.

I don't wanna be seen as the weak link in a team. It was quite confronting for me. So having to go through that process of relearning and understanding where CHD fit into my persona and what I wanted it to be. Took a few years really, and some of the conversations and learning how other people's experiences was quite confronting sometimes.

So understanding how their experience was theirs and what mine was, was mine, and sort of not taking it on too much was also something I had to learn. So if people are interested in doing advocacy, I highly recommend it, but I would start by meeting a few other people in the community who you can share your story with, you can hear their story, and you can bring that into anything that you wanna speak about.

And then reaching out to organizations that you're interested in working with directly is a great way to raise awareness and start doing some [00:41:00] advocacy work. And advocacy work might not be going up to Parliament House and talking about a National Standards of Care. Maybe it might be something like putting on a community barbecue where you can start having conversations and bringing people together and raising awareness of congenital heart disease and just connecting people.

That's more than enough. 

Anna Jaworski: That's a great way to get started. Even just being on Facebook and getting involved with some of the groups that way. I agree. It's too overwhelming to say, "oh, I'm just gonna go to the capitol today and lobby my congressman." It's very daunting. So definitely to join in with a group, to find out where your story fits in with other people's stories and how you can work in a united front, I think that gives you a much better opportunity for success.

Not that one voice doesn't matter. It really does, and it's amazing what one person can do, but I think that there's strength in unity. 

Elle Pendrick: [00:42:00] Absolutely. And I think when I was on the Board of Heart Kids, I was one of the youngest people on the Board and I was, one of a couple of people who were adults with congenital heart disease.

I thought one of my key roles was to really listen to the community and bring their views to the Board and speak for my community that I understood. So I really did try and make an effort to get into those community groups and Facebook and meet people and try and understand the different versions of CHD and the impact that it had on different adults and their life, their career, and how their life trajectory changed and went up and down as people went along in their lives with congenital heart disease and be able to bring that to the Board or be able to bring that to the national action plan or the standards of care. So it wasn't just my view. 

Anna Jaworski: Right. 

Elle Pendrick: That was really important for me. 

Anna Jaworski: Yeah, I love that. So it's almost like you were the mouthpiece for [00:43:00] all of those people. 

Elle Pendrick: I tried to pull together as many as I could. 

Anna Jaworski: I love that. 

Elle Pendrick: But nothing beats their own personal story. 

Anna Jaworski: That's true, but not everybody has the opportunity that you were afforded, and it's really nice to know that you felt comfortable sharing all of those stories.

I find that a lot of the people I reach out to feel too shy or they don't have the confidence. This definitely does take some confidence to get up in front of people and to share something as personal and emotional is what we've been through. Don't you think Ga? 

Elle Pendrick: I do, but I think maybe I'm just oblivious to it.

And I also, I love to talk, so maybe that's just what it's a bit easier instead, but when I meet people and they're too shy to do it, I'm like, "Why? You just get up and you just talk. And I'm like, "Oh, wait, no, not everyone's like that, Elle... You need to..." so I deliberately try to find shy people to get their stories and, make sure I shape it the right [00:44:00] way and advocate for them how they want.

Anna Jaworski: I love that. We need extroverts like you. I think that's beautiful that you don't have any problem with that, and you are showing me today how articulate you are and how confident you are to talk about an unusual circumstance, but it's not unusual to you because it's the way you were born.

So you don't look at it as unusual. And that's what my daughter says to me all the time too, is, "Mom, this is just the way I am. It would be like feeling like you're unusual because you have brown eyes, some people have brown eyes, some people have heart defects..." 

Elle Pendrick: And you don't have any different.

Anna Jaworski: Yeah, exactly. You have written a book to help others, not with heart disease, but with chronic illnesses. And I found that really interesting. can you tell me why you wrote your book and how long it took you? 

Elle Pendrick: Yeah, sure. I wrote a book called "Your Ultimate Surgery Success Guide," and I wrote it because I've been through five open-heart surgeries.

When I would meet people, whether they were having open-heart surgery [00:45:00] or major cancer removal surgery, or even a hysterectomy or some kind of major surgery, I would have all these tips for them and I didn't wanna overwhelm them. And I thought, 'God, how can I put this together to try and help people?'

Quite a few years ago, probably 2017, I decided to write a blog called 'Tips and Tricks from a Pro for Open-Heart Surgery,' and it went on the Heart Kids website, and they told me that it was one of the most clicked on sites on their whole website, which was fantastic. And it went for about three pages.

And I thought, 'Yeah, okay, I've put a lot into this. This is really helpful.' But then I kept thinking, 'No, this is really just the tip of the iceberg. There's so much more to major surgery,' so I decided to take some time off work and sit down and pen the book to really try and capture everything and help people and bring together practical things.

When I [00:46:00] had my fifth open-heart surgery, I Googled it and looked at blogs and fact sheets and things like that, and got to the point where when I was reading them, I thought, 'Hang on a minute. No, you're missing this. Oh, you need to add that in here.' And it finally dawned on me that I actually knew a lot more than I anticipated, and I didn't need the fact sheets.

I could write it myself and I, very humbly thought I could do a better job of it. So I sat down and wrote the book. And things that people really struggle with is finances. It's expensive going in for major surgery, even with Medicare in Australia but there's a lot of entitlements that people don't understand that they can access in Australia and even in the U.S. I'm sure.

So I put in all the budget strategies. The other thing that I realized is as an adult, I have to still navigate a career while taking effectively a sabbatical to have major surgery. [00:47:00] So there's a whole chapter on workplace tactics. How do you talk to your supervisor? What leave are you entitled to?

How do you figure all of this out? It even includes a script on how you can talk to your supervisor and approach that conversation ' cause that's one of the key things that I fell down with when I was 21. I had no idea how to talk to my supervisor, but when I was 33, I was much better at it.

It includes everything from questions to ask your surgeon how to choose the right hospital, how to get into a good mindset to go in for major surgery, which is really tricky. And all the practical ways that you can lean into helpful resources like therapy, somatic techniques and other things that you might need.

Anna Jaworski: How long did it take you to write it? 

Elle Pendrick: I think it took me about three months to really sit down and smash it out, and then a couple of months later I then spent the time to put it into a format that I could put out there for everyone to access.

[00:48:00] So probably about four months in total. 

Anna Jaworski: That's amazing because all the things that you listed. Wow. That's a lot of information and probably almost like people's Bible, when they go in if they're lucky enough to find it. So tell me, where could people find your book?

Elle Pendrick: It's available worldwide, exclusively on Amazon, and in the U.S. It's $14.99. 

Anna Jaworski: Okay, great. Wow, that's just amazing that you came up with that. But that's not all you've done. You have also created Adulting Well, so tell me about what Adulting Well is. 

Elle Pendrick: Adulting Well is a platform to help people with any kind of chronic illness, but draws on my experience of congenital heart disease.

 There's a couple of different pillars to Adulting Well, there's a free blog that anyone can access, comes out weekly, can be dropped right into your mailbox. Then I've [00:49:00] been developing and launching some digital courses, I've got one about how to build a mindset toolkit when you've got chronic illness.

What I find with myself and speaking to a lot of people and reading the research out there is that because your body keeps having these symptoms. It can get quite frustrating and you can try switch it off, and the mindset toolkit would help you try and reconnect that in a nice, safe way.

Then I've got another course on how to navigate the workplace, and I'm currently building a course on how to navigate healthcare finances, which will be the biggest course yet to come out. I do live workshops and live talks, around the world, like for example, at CNOC and Cincinnati Children's Hospital and various other places, which I absolutely love.

It's been building slowly and steadily. I've got an Instagram page for Adulting Well, Facebook page, and the website is AdultingWell.Au. 

Anna Jaworski: Wow. Do you ever sleep Elle? 

Elle Pendrick: [00:50:00] Yes. Quite well actually, these days. 

Anna Jaworski: I bet you do because you're so busy. I bet you do sleep well. You're making such a positive change in the world. I think that's absolutely fabulous. 

Elle Pendrick: Thank you very much. I think I just saw a gap and I couldn't find what I wanted, which I think is why people start doing podcasts like you and start doing these things, is to try and fill a gap and help people, because I couldn't find what I needed. So I'm hoping that what I'm developing will help more people.

Anna Jaworski: Absolutely. That's exactly why I started doing what I did. I couldn't find the resources I needed. I knew they needed to be out there. I did have some abilities to enable me to move forward, and that's why I did what I did. Your book sounds amazing, friends.

Do check it out on Amazon. I will put the link in the show notes and I'll put the link to Elle's website as well, [00:51:00] because some of you may be interested in some of the digital courses that she has available as well. Thank you so much for being a guest on our program today, Elle. 

Elle Pendrick: Thank you so much for having me, Anna.

It's been an absolute delight and I'm so glad that I got to come on your podcast and meet you. 

Anna Jaworski: I am too. I'm so thankful that my producer Megan Tones... (and thank you Megan for being my producer today) 

Elle Pendrick: Thank you. 

Anna Jaworski: ...I'm so glad she told me about you because she is the one who said, "Oh Anna, we really need to have Elle Pendrick on the program," and here you are. So it definitely helps. 

Elle Pendrick: Well, big thanks to Megan. Yeah, thank you. 

Anna Jaworski: Megan is amazing. 

Megan Tones: That's okay. No, it was really interesting to listen to l and I'm so glad we have someone with your skills in our community. 

Anna Jaworski: This has been completely delightful. I've really enjoyed it. Thanks again, Megan, for being the producer, and scriptwriter. Megan doesn't get enough credit. Megan, thank you for helping me write the script, find the [00:52:00] guest, and then produce the show for me today. 

Megan Tones: That's okay. 

Elle Pendrick: Thank you, Megan.

Megan Tones: My pleasure. It's no worries at all.

It's been really good to, listening to the show today. I think there's some really interesting insights there about advocacy and certainly your experience of growing up where actually the same age Elle so I can relate even though I've in Brisbane and we've got a hospital here, Prince Charles, who have been taking care of me since I was a baby. I can definitely relate, growing up and thinking, 'Shouldn't all this be behind me now?' 

Elle Pendrick: Yeah. 

Megan Tones: Even my doctor back then said, "Oh, you don't have to come back anymore and just take your digoxin." And I thought, "Well now if everything's fixed, do I still need digoxin?" That doesn't make sense. 

Elle Pendrick: Yeah. Yep. 

Anna Jaworski: It's funny because we did a discord event with [00:53:00] Megan and we listened to one of the first shows that she did with me. It was so much fun to listen to that show because neither one of us had listened to it in years... 

That concludes this episode of Heart to Heart with Anna.

Thanks for listening today. Please leave a review of our podcast and whatever platform you're using to listen. This helps others in the CHD community know about the podcast. Have a great week, and remember my friends, you are not alone. 

Conclusion: Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. "Heart to Heart with Anna," with your host, Anna Jaworski can be heard at any time wherever you get your podcasts. A new [00:54:00] episode is released every Tuesday from noon Eastern time.