congestive_heart_failure

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 lessons can we learn from our adult Heart Warriors?

Why might a Heart Mom write a book about her life experiences dealing with CHD?

How does a Heart Mom take her personal experiences to fight for others in the hospital?

Jenny Muscatell is a licensed social worker, blogger, author, photographer, and podcaster. She earned her Bachelor’s in Mental Health and Human Services through the University of Maine.

She has over two decades of experience in the social services field, specializing in crisis intervention, health systems, and end-of-life care. Deeply passionate about her work, Jenny is regarded as a fierce advocate, earning her the Child Welfare Rising to the Challenge Award.

Jenny lives with her husband Dan, and two daughters. Her first daughter Faith was born with Hypoplastic Left Heart Syndrome. Jenny shared her life experiences, authoring the Amazon Best Selling book, “The Journey of Faith and an Open Heart” and as a public speaker on multiple platforms.

Through faith-filled presentations, heartfelt written words, and photography, Jenny’s mission is to give voice to the vulnerable, hope to the hurting, and to make way for the unspoken to be told.

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Keith Flynn was born in 1975 and shortly after birth, he was diagnosed with Ventricular Septal Defect, Double Inlet Left Ventricle, Pulmonary Atresia, and Hypoplastic Right Ventricle. He had two Blalock-Taussig shunts at age 6 months and 5 years, and a modified Fontan procedure when he was 15. Despite experiencing atrial arrhythmias in early adulthood, Keith received limited cardiac care in his 20s and early 30s. 

In his 30s, Keith started experiencing syncopal (or fainting) episodes, and on one occasion was rescued by his wife after fainting while swimming. As a result of these episodes, Keith received a pacemaker and recording device and was treated with Sotalol, a beta-blocker. However, Keith had also begun to experience fluid retention related to heart failure, and doctors told him that he would need a heart and liver transplant. He is currently undergoing the required testing to be listed for both organs. 

Over the years, Keith worked for a variety of retail and restaurant businesses, before working his way up to managing and owning businesses. He also started doing stand up comedy. Most recently, he has worked in the health and disability rights fields and earned his Bachelor’s degree in Accounting. He met his wife in 2003 and currently lives in Baltimore.

In this episode, Keith will share more about his life -- living with a congenital heart defect -- with Anna. He will also explain how he has come to need to be listed for two different organs. He will also share with Anna what he believes keeps him going, even when the going gets rough.

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The most common cyanotic congenital heart defect that presents in the first month after birth is transposition of the great arteries (TGA) -- dextro-TGA (d-TGA) and levo-TGA (l-TGA) or congenitally corrected TGA (also known as cc-TGA). Because cc-TGA is rarer than d-TGA, it's not often spoken about. In this episode, we'll have two adult survivors with cc-TGA talk about what it's like living with cc-TGA, how it's affected their lives and what advice they have for parents of babies with cc-TGA.

The episode opens with Carol Raimondi. Carol Raimondi was born in 1975 with levo-transposition of the great arteries, pulmonary stenosis, atrial septal defect, ventricular septal defect (or VSD) and dextrocardia. Her first surgery at age 5, repaired her VSD and widened her pulmonary artery. Soon after that, she required a pacemaker. She has had 3 more open-heart surgeries – at ages 12, 21 and 31, and numerous pacemaker surgeries.

David Franco was born on December 19, 1966. His heart defect was not detected until 6 weeks after birth. David’s parents were given very few options and David was sent to the University of Alabama, Birmingham to have his VSD closed by Dr. John Kirklin. He received a pacemaker during the operation.

David had a second OHS at 27 to replace his pulmonary valve and add a pulmonary conduit allowing more oxygenated blood to go through his body. The surgery was successful but David suffered a stroke during the procedure. He also received an implanted cardioverter defibrillator — or an ICD.

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