Diaries of a Heart Warrior
I'm Amy Erhart, the host of Diaries of a Heart Warrior; born with a Congenital Heart Defect (Hypoplastic Left Heart Syndrome-HLHS). I'm creating this podcast to bring you stories told by individuals living with a Congenital Heart Defect. Episodes will also include the parent(s) point of view on how it felt to receive the diagnosis of their child; what they wish they knew and what life looks like now. Let's take a journey and explore the lives of Heart Warriors as the stories are told from their perspective.
Episodes
52 episodes
From Pediatric to Adult Care: Lessons We Wish We Knew
Today I’m joined by Jul, Aaron, and Scott for a conversation about transitioning from pediatric to adult care. When you’re born with CHD, so much happens before you’re even old enough to understand it. In this episode, we share the things we wi...
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Episode 49
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51:29
Sharing the Mic: My Conversation with Patrick Mason
Today I’m joined by Patrick Mason for a special episode. Since we both host podcasts, we thought it would be fun to do a dual interview and share our stories together. Patrick opens up about his own journey—what led him into podcasting, his exp...
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Episode 48
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1:05:13
The Struggle and the Strength: CHD and Staying Active
Growing up with CHD, there was no manual on what we could or couldn’t do—it was often trial by fire. Our parents did the best they could with the information they had, but as we step into adulthood, it’s on us to figure out how to start—or keep...
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Episode 47
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55:11
Aiden Renda's Story- From CHD to Heart Transplant
Today I’m joined by Aiden, who shares his powerful CHD and transplant journey. His path toward transplant began when he was just 16, and at 18, he received his new heart. Now, nine years later, Aiden reflects on the reality that while his heart...
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Episode 46
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51:39
Aaron Knutson is back! Talking about his disability journey
Aaron is back! Today, he opens up about his disability journey—what led him to the decision to step away from his job and begin the Social Security process. He shares the barriers he faced along the way and highlights the key things he believes...
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Episode 45
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28:17
Bekah Chovanec's Story- HRHS/ Pulmonary Atresia
Today, Bekah opens up about her journey of finding her footing as an adult with CHD. Learning to advocate for ourselves isn’t always easy—it takes time, growth, and confidence. For Bekah, certain life experiences have sparked a stronger drive t...
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Episode 44
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1:08:23
Melanie Letzer's Story- Heart mom of 2 children with CHD
To say Melanie’s story is unique would be an understatement. While having one child with CHD is already rare—about 1 in 100 births—Melanie is navigating life with two children living with congenital heart disease. The challenges are re...
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Episode 43
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51:15
Thirza de Kok's Story- HRHS
Today, Thirza shares her powerful story of living with CHD. Despite the challenges she’s faced, it’s clear she’s thriving. I especially love how she reflects on the impact of being part of a CHD group in her younger years—how those connections ...
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Episode 42
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51:45
Katherine Madigan's Story- Tricuspid Atresia
Katherine was born in 1982, and from the very beginning, her parents were filled with hope for her future. She underwent her first surgery within months of birth and received the Fontan procedure at age nine. From that point through much of her...
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Episode 41
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50:05
Tessa Go's Story- HRHS/WPW
Today, Tessa shares her journey through pregnancy, life as a military spouse, and the transition of care in managing her CHD. She reflects on her experiences with four pregnancies, navigating the challenges of frequent relocations as part of a ...
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Episode 40
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49:04
Ellie Garrington's Story- Tricuspid Atresia
Ellie was born with CHD, facing numerous challenges along the way. However, the most significant complication she endured was a stroke. Looking back, she recalls the frustrating journey of seeking help for her worsening symptoms—only to be told...
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Episode 39
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47:17
From Awareness to Action: Join the HeartWorks Movement
Heartworks is a nonprofit organization founded in June202 to build on the groundbreaking work started by Tod and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) at Mayo Clinic in 2010.Today, Kelly and I had a great ...
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53:24
Chantelle Johnson's Story- Tetrology of Fallot
At 55, Chantelle has seen her fair share of changes in the medical field. Being born in the 70's she's been extremely fortunate to have little intervention in her life along that way. However, she now faces the next phase of CHD and...
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Episode 38
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32:15
Amber West's Story- Tricuspid Atresia/ VSD
***Mental Illness***Amber's CHD journey doesn't come without fight. At a young age not only did she struggled with CHD, but mental illness reared its ugly head in her life. She just so happened to get an email and she took ch...
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Episode 37
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1:03:17
Annie Ulchak's Story- HLHS
Annie's CHD journey starts in Lima, Peru. Being born with CHD and not having all the necessary resources it was essential she make it to the states to have life saving surgery. After being adopted by a wonderful family, she was able...
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Episode 36
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1:20:39
Laura Valentine's Story- CHD/Heart Liver Transplant
Laura's story starts like most of ours. Born with CHD and living most of her life in the CHD world. As an adult, her health deteriorated and she was faced with transplant. Her journey is truly unique. She has so many ser...
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Episode 35
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1:02:58
Jason Crutchley' Story- CHD/Transplant
Jason's life is full of passion and drive. Growing up with CHD and finding out it was his time to have a transplant, came a a complete surprise, but he evaluated his life and came to terms that this was the best option for him. Join...
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Episode 34
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1:24:55
Neal Darby's Story- HRHS
Neal's story hit me different. We frequently concentrate on the present moment, often overlooking how our youthful experiences and choices can significantly influence our future well-being. He hit on a hard truth: the health-related...
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Episode 33
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42:27
Daniel Thomas's Story- HLHS
Today's episode I talk with Daniel. This is so different than most episodes in the fact that he focus' on his adventures in life. His HLHS hasn't slowed him down and while he admits he is living an ideal life, he knows things are co...
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Episode 32
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35:19
Kelly DiMaggio's Story- HLHS, DGTA mitral atresia, and an ASD and VSD
Kelly joins me to today and speak about her CHD journey. What I love about talking with Kelly is that she has such an appreciation for life and moves through her story with love and understanding. She recounts how she and her husba...
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Episode 31
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1:06:29
JoJo Jacob's Story- HLHS
Today I have the pleasure of speaking with Jojo. She take us through her journey of wanting cosmetic surgery, but instead got way more than she bargained for. After moving to a new state her plan to live normally were turned upside ...
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Episode 30
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1:07:41
Aaron Knutson's Story- Double Inlet Ventricle
Today Aaron shares his story of living the life. He decided to take his passion of playing music and make it his career in his younger years. However, that doesn't mean CHD didn't creep up on him and have other plans. Aaron ta...
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Episode 29
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1:21:01
Chastity Rushing's Story- Heart Transplant
Today, Chastity tells us about her heart transplant journey. Never meeting Chastity and not knowing her story I'm so honored she shared it with us! She takes us through the initial moments of feeling that deep down something wasn't ...
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Episode 28
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1:14:50
Elise George's Story- Tricuspid Atresia
I sit down with Elise today as she shares her heart journey starting with her mom finding out in utero. In her 20's her family makes the decision to move to New Mexico and due to altitude it doesn't go as planned and has to move back to h...
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Episode 27
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59:56