fontan

Lauren Bednarz | Living with a Fontan Heart | Podcast

Today’s guest is Lauren Bednarz
Lauren is a 34 year old who was born with Complex Congenital Heart Disease to include Tricuspid Atresia, a Hypoplastic Right Ventricle, and a large VSD that was not  detected until Lauren was eleven weeks old, and in heart failure. 

She he has undergone three major open heart surgeries, with her most recent being four months ago. She has had multiple heart catheterizations, a cardiac ablation and three eye surgeries. She has experienced hundreds of testing procedures throughout her life Despite everything she has been through medically, her life has been pretty , as she puts it, “normal - whatever normal is." She holds a BA in psychology, has been married for ten years to her husband Chris, and has been a big part of the CHD community for about fourteen years. Lauren considers herself a strong  advocate for CHD, and has worked hard to spread awareness by sharing her knowledge and experience. She is currently a homemaker which she loves. She also loves to organize, bargain shop, and make people laugh and smile. She enjoys going bowling when able, listening to music, and much more.

Connect with Daniel and Jenny:
Website:https: //www.muscatellministries.com/
Website:https: //www.jennymuscatell.com/
Insta:https: //www.instagram.com/jennymuscatell/
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Podcast: https://www.buzzsprout.com/1737272

Connect with Lauren through her facebook group: https://www.facebook.com/groups/laurenbhopefulheart/?multi_permalinks=918725635493454&notif_id=1644280015335798&notif_t=group_highlights&ref=notif

How can a 30-year-old Heart Warrior single ventricle survivor live without the Fontan? What special considerations need to be made when moving from Egypt to Canada? What are the biggest concerns when you fall out of cardiac care?

Ellen Banoub was born in Egypt 30 years ago. She is a Heart Warrior, diagnosed with a hypoplastic left ventricle, transposition of the great arteries (TGA), pulmonary atresia, and dextrocardia. Ellen has had two surgeries, a shunt operation at one year of age, and a half-Fontan when she was 11 years old. She moved to Canada in 2013. She is studying social services and academic English and hopes to study social work to help others with social and medical problems. She has three heart-healthy siblings. Her older sister is a doctor who takes care of Ellen's health. Ellen recently became an aunt to Molly, who was born in early 2022. Aside from studying and spending time with family, Ellen enjoys acting, watching movies, listening to music, and reading.

Ellen talks with Anna about how she was born with a single ventricle heart and had surgery abroad since she was unable to have the surgery in her homeland (Egypt). Ellen talks about how she eventually moved to Canada where she has been able to get the care she needed for her heart. She shares how she came to study social work and how working in this field is her new purpose in life.

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What is tricuspid atresia? What kind of complications did Amanda Braun face over the last three decades? What surgical interventions have helped Amanda overcome her cardiac challenges?

Born in 1988, Amanda Braun was diagnosed with Tricuspid Atresia, VSD, and HRHS. She had her first of 6 surgeries at 3 months old, which was a pulmonary artery banding. At 4 she developed endocarditis and had to have the PA banding redone. Amanda required no other surgeries until age 14 when she had the Glenn and Fontan done. Apart from a sternal wire removal at age 22, Amanda was well until 32 years of age, when she began to develop a range of symptoms as her heart struggled. She had a dual-lead pacemaker implanted, which was complicated and required two procedures due to her Fontan anatomy. Amanda lives in Indiana and works as a Cardiac Monitor Technician. She also runs “Amanda’s Blankets” where she makes customized blankets for adults, children, babies, and pets.

The program starts with us learning a bit about Amanda in Segment 1. In the second segment, we talk about complications that Amanda has had, and in the third segment, we discuss Amanda’s pacemaker and future prognosis.

Helpful Related Links for Listeners:

Medical Monday with Greg Hummer: Devices to Help Heart Warriors in Heart Failure -https://www.buzzsprout.com/62761/10138859

Continuing Education for Understanding the Liver in Fontan Patients - https://www.buzzsprout.com/62761/2654281

Advancements in Understanding the Liver in Fontan Patients Part 1 - https://www.buzzsprout.com/62761/466531

Advancements in Understanding the Liver in Fontan Patients Part 2 - https://www.buzzsprout.com/62761/469590

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What happens when a Fontan patient needs a tune-up? What kinds of procedures might a Fontan patient need after living with a Fontan heart? What can we learn from someone who has experienced a Fontan revision?

Welcome to the first of four Saturday Success Story programs! Saturday Success Stories will be released each Saturday in Heart Month (February 2022) and this one features Jimmy Bachenheimer.

Jimmy Bachenheimer was born in August 1981 with a single ventricle heart. He was diagnosed with hypoplastic left heart syndrome. Jimmy had the typical series of operations to palliate his condition.

Jimmy is also a dad. He has a 10-year-old daughter named Brooklyn who is in 5th grade.

Jimmy is a salesman. He works for Hillcrest Volkswagen in New Kensington, Pennsylvania.

Link to Article Mentioned in our Program:

First pig-to-human heart transplant: what can scientists learn?

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Leslie Castro is a 47-year-old former single ventricle patient from Pennsylvania. She was born with tricuspid atresia, pulmonary stenosis, and multiple other heart defects, and had the Classic Fontan at the age of 12 in 1985. 

Just over a year ago, she received a heart transplant. Her donor was a 29-year-old woman who was a Hepatitis C positive intravenous drug user, and Leslie had to take a case study drug to avoid contracting the virus. Leslie had a very bumpy road to recovery with multiple complications involving her brain, heart, and lungs, and required procedures after the transplant to alleviate a brain bleed and drain fluid from her lungs. 

This is Leslie’s second appearance on the show. My loyal Listeners may remember Leslie’s other program, “Classic Fontan Survivor Post-Cardiac Transplant!” (https://www.buzzsprout.com/62761/7884964)

In this episode, Leslie teaches us about how some heart transplant recipients are now receiving hearts from donors who tested positive for Hepatitis C and what that means for donors and recipients.

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In this touching episode of "Heart to Heart with Anna," grandmother Beverly Foster shares with Anna her heart journey with her grandson, Heart Warrior Dhillon. From diagnosis through today, Dhillon's spirit remains steadfast and everyone knows exactly what he would want them to do. Thus, Beverly and her family felt the need to create a special legacy in Dhillon's name. The result? Dhillon's Gift.

Links mentioned in the program:

UNC's webpage about Dhillon's Gift
Dhillon's Heart Journey
CHOP Pediatric Cardiology Center
CHOP Single Ventricle Program
Victory Junction Summer Camp
The Gift of Life House

To contact Beverly, use Bev_Foster@unc.edu

Another "Heart to Heart with Anna" episode dealing with transplantation and protein-losing enteropathy
Another "Heart to Heart with Anna" dealing with protein-losing enteropathy

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This panel discussion includes four adults who were born with congenital heart defects and one parent of a twin daughter who was born with a heart defect. Host, Anna Jaworski, is the mother of an adult son who was born with a congenital heart defect. Together, these six women talk about some of the different terms and labels that are commonly used in the congenital heart defect community.

How do terms and labels affect those born with congenital heart defects? Do terms define a person? Do labels hurt? Can labels cause bullying? What are the pros and cons of using abbreviations and labels when referring to people who were born with congenital heart defects?

Panelists include return Guests Laura Ryan, Kathy Ware, Aubyn Baker-Riley and new "Heart to Heart with Anna" Guests Jen Hart Mulder and Felisha Jarschke. Tune in to hear how these panelists refer to themselves, refer to others in the heart community, and what terms are considered acceptable and which terms or labels are disliked by panelists.

Other "Heart to Heart with Anna" episodes mentioned in this podcast:

Laura Ryan's podcast:
Heart Warrior Mom Raising Children to Adulthood
Living with a Bi-directional Glenn Heart

Laura Ryan and Kathy Ware's podcast:
A Heart Warrior’s Early Onset Menopause

Kathy Ware's podcast:
From Learning Disabled to College Professor

Aubyn Baker-Riley's podcast:
When a Heart Warrior is Living in Heart Failure

Jen Hart Mulder's podcast:
Hartfelt: Living Life with Congenital Heart Disease

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When David was born with a critical congenital heart defect, Monica's world changed completely. A former businesswoman, she soon discovered she would need to know more about medicine to take care of her afflicted son. This led to a career change that has helped countless others in the congenital heart defect community. Monica will share with Anna how her training helped her as a parent and what she is doing today to continue to be an advocate for her son.

David was born not only with a serious heart defect but also with Hemifacial Microsomia. These two conditions affected him in a variety of ways -- naturally, David's early milestones and development were impacted by his need for surgery and in consideration of his birth defects. In this episode, he'll talk with Anna about how dealing with adversity made him the man he is today.

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Dr. William Novick is a most unusual cardiothoracic surgeon who travels the world mending broken hearts in countries where many of these children would be left to succumb to their congenital heart defects. Together with his team, Dr. Novick does even more than mend broken hearts; however, since he also expends a great deal of time and energy teaching doctors, nurses and support staff in those countries how to care for their heart warriors and he even brings in life-saving technology to leave behind. Tune in to hear about how Dr. Novick got started on this mission, who helps him with this philanthropic endeavor and how you can get involved, too!

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