Empower My Congenital Heart

Empower My Congenital Heart All Your Medical Info, Connections, and Resources —in Your Pocket— Built by CHD Patients and Researchers.

For Misty, maintaining her CHD health goes beyond just being seen by the right ACHD care team. Hear from her, as she giv...
06/11/2026

For Misty, maintaining her CHD health goes beyond just being seen by the right ACHD care team. Hear from her, as she gives us an insight into what it means to be a confident and empowered patient.

"As someone living with congenital heart disease, lifelong care means more than just going to my yearly appointments with my adult congenital heart disease specialist. It means being proactive with my overall health by exercising regularly, eating and sleeping well, planning ahead for travel or procedures, listening to my body and communicating with my healthcare team when I have questions or concerns, and staying up to date on the latest research in the field. Being a confident, empowered patient is an essential part of optimal lifelong care."

Pictured: Misty attending an ACHD Regional Conference with part of her CHD community.

Research shows that adults with congenital heart disease who receive regular care from an ACHD cardiologist are more lik...
06/09/2026

Research shows that adults with congenital heart disease who receive regular care from an ACHD cardiologist are more likely to live longer, stay healthier, and avoid preventable complications.

As adults with CHD, one of the most important decisions we make is who we trust with our heart care. Finding the right ACHD specialist can feel overwhelming, but having a provider who understands the unique challenges of congenital heart disease can make all the difference.

Each of our ambassadors has had a different journey when it came to transitioning to ACHD care, finding the right provider, and learning to advocate for themselves along the way.

Throughout this month, you'll hear their stories, lessons learned, and advice for navigating adult congenital heart care. From transitioning out of pediatric care to understanding what makes an ACHD specialist the right fit for you, we'll be covering it all.

Stay tuned!

Welcome Shelley to the Ambassador Team! "My name is Shelley Truskowski, I live in Michigan with third degree heart block...
06/05/2026

Welcome Shelley to the Ambassador Team!

"My name is Shelley Truskowski, I live in Michigan with third degree heart block and an atrial septal defect.

I didn’t grow up seeing a congenital heart cardiologist. When my echo came back with an issue, I found myself worrying about my heart all the time. I decided to get a second opinion from a CHD specialist, and I was amazed by the level of care
I received and how well he understood me. I’ve been under the care of my CHD cardiologist ever since that first day.

I became an ambassador to be a part of finding ways to increase emotional support for those of us living with congenital heart disease.

I enjoy yoga and taking my chihuahua for walks on warm days. He loves to sniff the trees for clues like a tiny dog detective."

Thrilled to have you on the team!

EmpowerMyCH Ambassador Jake lives in Pennsylvania and is already an active member in the ACHD community."My name is Jake...
06/03/2026

EmpowerMyCH Ambassador Jake lives in Pennsylvania and is already an active member in the ACHD community.

"My name is Jake Chico, and I am honored to be joining EmpowerMyCH as an ambassador. My main defects are double outlet right ventricle, heterotaxy, transposition of the great arteries ( congenitally corrected ), and situs inverses.

My journey with CHD has been relatively calm throughout most of my life, a few surgeries as a baby and then at ten years old. Everything else has been Cath procedures and just basic check ups. It wasn’t until 2018 that I went into heart failure and everything in my life changed. Since then, I have become more interested in the CHD community at large and have since gotten involved with many groups and projects, which made joining MyempowerCH as an ambassador an easy decision to make. I look forward to helping effect change in the CHD community, being a voice for myself and others, and creating friendships with other people living with CHD"

We are grateful that you have chosen to be apart of our team!

Meet Ambassador Casey rom Central Point, Oregon. Casey has Anomalous Left Coronary Artery from the PulmonaryArtery (ALCA...
06/01/2026

Meet Ambassador Casey rom Central Point, Oregon. Casey has Anomalous Left Coronary Artery from the Pulmonary
Artery (ALCAPA) and is a cardiac arrest survivor.

"I'm thrilled to be a part of the program. I’d really like to help bridge the gap between providers and cultivate a more productive sense of patient advocacy. I also want to acknowledge the heavy emotional component of being a CHD patient and hold space for those of us who need it.

As a person I am an aspiring author, and my favorite video game will always be: The Legend of Zelda Ocarina of Time on the N64. After all, my dog is named Navi. 🤍"

We are so lucky to have you Casey!

05/28/2026

Meet Janee!

Janee has consistently championed the CHD community. She recently founded The Heart Collection, a nonprofit sending HeartStay Bags to CHD patients nationwide. We are thrilled to have her as part of the team!

Welcome Heidi to the EmpowerMyCH Ambassador Team!"Hello! My Name is Heidi Hill. I was born with tricuspid atresia back i...
05/26/2026

Welcome Heidi to the EmpowerMyCH Ambassador Team!

"Hello! My Name is Heidi Hill. I was born with tricuspid atresia back in August of 1976. My right ventricle was also underdeveloped, and I was born a blue baby. My parents lived in a small town in Oregon, with Portland being the closest hospital that could help me with my condition.

My first surgery was at 2 months old. My second surgery was at 2 years old. My third surgery, the original Fontan, was at age 5 years old, and I had my 4th surgery at 35 years old. It was the Fontan revision, and I also had my first pacemaker placed.

It’s been a challenging journey, but thankfully, I’ve had the support from my mother at every hospital visit, echo, cath, etc., as a child and teenager, and also the support of my wonderful husband for the past 23 years.

I wanted to become an ambassador to help the CHD community, and I really enjoy the interaction with fellow CHD patients. You feel so alone on this journey, and it’s wonderful to meet others who have shared similar life challenges.

Some fun things about me. I finished writing my first book about my mental health journey, and I’m in the process of publishing my memoir on Amazon. I’ve really enjoyed the writing process and creating my own book, cover, and all. I will always be a huge Madonna fan! Her music was very healing to me during my 20s when she was popular in the 90s."

Sharing your experience as a CHD patient is going to impact many lives! Thank you for being apart of the team and we can't wait to hear more from you!

05/22/2026

Ana Cecilia lives in Texas and started out volunteering with us as a community advisory board member. Now, she is stepping into a new role as an EmpowerMyCH Ambassador.

We are incredibly grateful for all that she has done so far and all that there is ahead!

Welcome Sheyenne to the EmpowerMyCH Ambassador Team!"My name is Sheyenne Miller, and I’m based in Vermont. I was born wi...
05/20/2026

Welcome Sheyenne to the EmpowerMyCH Ambassador Team!

"My name is Sheyenne Miller, and I’m based in Vermont. I was born with congenital heart
disease, including critical pulmonary stenosis, multiple atrial septal defects (ASDs), and a
hypoplastic right ventricle. My journey has required multiple open-heart surgeries and a lifetime
of navigating complex, specialized care.

Hospitals have always been part of my story—but everything shifted when I stepped into
healthcare myself. I now work as a cardiac sonographer, scanning hearts every day… while
living with my own. Being both the patient and the professional has given me a perspective that
is equal parts empowering and incredibly heavy at times.

I became an EmpowerMyCH Ambassador because I know how isolating living with CHD can
feel, especially when access to specialized care isn’t always easy. I want others to feel seen,
supported, and confident advocating for themselves—because your voice matters.

A few things about me: I’m working toward my Master of Healthcare Administration, love
photography, and get way too competitive watching sports. And a moment that’s never left me—
my first open-heart surgery happened the same day Michael Jackson passed away. While the
world mourned a legend, my family sat in a waiting room, wondering if they were about to lose
theirs."

Incredibly grateful to have you. Your unique perspective as both patient and healthcare professional will bring valuable insight to all of our participants!

05/18/2026

Meet Misty!

All the way from South Carolina, Misty is no stranger to the ACHD community. She has been a dedicated advocate for many years and we are thrilled to have her as an EmpowerMyCH Ambassador.

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