ventricular_septal_defect

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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This is the 3rd of 4 episodes of Heart Dad Sunday -- a mini-series developed for Heart Month, February 2022. Heart Dad Frank Jaworski returns in this episode as the Guest Host. He interviews long-time friend, Michael Liben, about what it was like to raise a daughter with a critical congenital heart defect in Israel. Not only did Michael's daughter have double-outlet right ventricle, but she also had autism and she later developed epilepsy as well.

Michael is the father of three children: 27-year old Idan, 25-year-old Sapir, and forever 15-year old Liel. Michael and Leora have been married for 34 years and Michael made aliyah to Jerusalem after college.

Michael was a former filmmaker, high school teacher, adjunct professor of television and radio production, and he now works in security. For almost 6 years Michael has been working with Frank's wife, Anna, as the Host of a bereavement podcast now entitled, “Bereaved But Still Me.”

Links to Michael's other appearances on "Heart to Heart with Anna"

Congenital Heart Defects Around the Globe: Israel

Liel and Her Many Gifts: A Family's Decision to Donate One Girl's Lungs, Kidneys

Michael and Jamie: An Interview with an Organ Recipient and Donor's Dad

Link to Michael's podcast -- Bereaved But Still Me

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What is Double Outlet Right Ventricle?  What is TAPVR? How did living with congenital heart defects influence Michael McKelvey’s life growing up? What has Michael achieved in adulthood?

Michael McKelvey is 30 years old and lives with a complex congenital heart defect (CHD) called double outlet right ventricle, or DORV. He works as an internet service provider technician in Pittsburgh. Growing up, life wasn't easy for Michael. He underwent four open-heart surgeries between the ages of 9 days and 16 years and was a small, skinny, sickly kid who was always told what he couldn't do. As he grew older and began to understand his CHD, he struggled to accept his condition. Over time, this changed and he began to embrace what he could do. Today, Michael is married and lives a very active lifestyle even though he will face more surgeries in the future. He is talking to us today in the hopes that his outlook can help others.

Links to helpful sites and to materials mentioned in the show:

TAPVR: https://www.mayoclinic.org/diseases-conditions/total-anomalous-pulmonary-venous-return/cdc-20385613#dialogId36635208

DORV: https://kidshealth.org/en/parents/dorv.html#:~:text=Double%20outlet%20right%20ventricle%20(DORV)%20is%20a%20heart%20defect%20where,it%20is%20born%20with%20it.

Pulmonary artery banding: https://emedicine.medscape.com/article/905353-overview

Michael’s YouTube channel:  https://www.youtube.com/watch?v=3NPGuIh9LmA

Michael’s poem: https://shareyourheart.live/poem-michael?fbclid=IwAR2T8vC4Fxikw0C6aiBom0MR6goKJCS2m5rEFzccX82LwTSc0VzKXnOjQNw

Tom Dahlborg's page: https://www.theheartcommunitycollection.com/thomas-dahlborg

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Who is Eric Ankerud? Why would someone want to start a nonprofit organization to help the congenital heart defect community? What services does Heartfelt Dreams Foundation provide?

Eric Ankerud's wife, Lori, was born in 1958 with a serious heart defect called 'tetralogy of Fallot.' Lori was known as a "blue baby," and she had a ventricular septal defect or "hole in her heart. Her first open-heart surgery was a Blalock-Taussig shunt at the age of 2. At 3, her ventricular septal defect was closed and her pulmonary artery was repaired, which allowed her to have more normal blood flow to the lungs.

While Lori's early childhood was fraught with heart procedures and doctor's visits, it was also filled with the love of family and opportunities for her artistic abilities to blossom.

Lori and Eric married in 1985. They have two adult children. Although Lori has needed follow-up care including major heart reconstructive surgery, she has led a great quality of life. She and her husband felt inspired to start a nonprofit organization to help others in the CHD community.

In this episode of "Heart to Heart with Anna," Eric shares with Anna how his wife's congenital heart defect (CHD) journey has helped them to understand the needs of the CHD community and what their nonprofit is doing to help fill the needs they have witnessed over the course of their lives together.

To learn more about Eric and Lori's nonprofit organization, use this link: https://www.heartfeltdreamsfoundation.org/

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What is the situation like for people with congenital heart defects in India? What happens to our Heart Warriors as they grow up? What does the Heart Community need to do in order to have a sense of justice for those born with broken hearts?

Sajani Nair lives in Calicut, India, and is the mother of Yadhu Krishna, a young man living with congenitally corrected transposition of the great arteries (CCTGA). Since he was diagnosed, Sajani and her family faced an uphill battle for her son as they struggled to find care. At three and a half years of age, he had a pulmonary artery banding procedure at Narayana Health in Bangalore. He currently needs the arterial switch procedure. Obtaining medical care is difficult in India, as there is no insurance for congenital conditions, forcing families to rely on private hospitals. To help other families affected by CHD, Sajani started a support group in India and a letter-writing campaign to urge the health minister in the central government to address CHD. Her efforts have attracted the attention of doctors and others, who are now working together to support her cause, a life of dignity for people born with CHD.

Facebook Link to Justice for Children with Congenital Heart Defects

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Texas Reardon is a Heart Warrior. Whitney is his wife of 10 years. Born with a host of congenital heart defects, Texas explains to Anna, in this episode of "Heart to Heart with Anna," about his complicated medical history, and some consequences he's had to face due to falling out of medical care for years. Whitney shares her story, with Anna, about the adjustments she's had to make to help her husband live optimally given his condition. Tune in to hear about the kinds of consequences Texas has endured and the advice he has for others so they won't suffer his same fate.

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Daphne Davis-Patrick is a mother, a grandmother, a nurse, and an author. She joins Anna in this episode of "Heart to Heart with Anna" to share her cardiac journeys as multiple members of her family have had to deal with living with congenital heart defects. Along this journey, Daphne's family discovered a hereditary defect that has affected two of her granddaughters and her son-in-law. The loss of her son, Joval, and the discovery of her family's other congenital heart defects led Daphne to write a book to help other families have hope and never give up.

To purchase Daphne's book, go to this website

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Lorrie Hill is a 23-year-old Heart Warrior. Living with a single ventricle heart, she has learned a great deal about the heart, her heart's idiosyncracies, and the importance of exercise in staying healthy. In this episode of "Heart to Heart with Anna," Lorrie talks to Anna about what it has been like for her to live with a heart riddled with complex defects, how her heart defect has influenced her career choices, and what the future holds for her... while waiting for a heart transplant.

If you would like to connect with Lorrie Hill, here is her Instagram handle:  @theheartofthejourney

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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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Megan Tones is a woman who was born with multiple congenital heart defects and who has undergone multiple medical procedures. In this episode of Heart to Heart with Anna, Megan details special considerations and precautions she underwent before (and during!) her travels to China, Egypt, and Japan. A native Australian, Megan has appreciated the beauty and majesty of these other countries and doesn't believe her heart defect should hold her back from the travel she and her husband so enjoy.

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Aubrey Byrnes is a rare mom - she's the mother of Wyatt Nathan Arthur Byrnes, aged 5, and Colton Paul Byrnes, aged 4. Wyatt was born 13 weeks premature and had a rough medical journey. 

Colton, AKA Superman without a Cape, was born with VACTERL Association, a disorder that affects many body systems. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. 

As part of his condition, Colton has multiple CHDs including truncus arteriosus, ventricular septal defect, atrial septal defect, pulmonary stenosis, and right aortic arch. During his short life Colton has had 52 procedures, including 6 heart catheterizations and 4 open-heart surgeries. 

Aubrey is married to Rick and together they have a unique, rare outlook on life which has helped them stay together. Aubrey studied American Sign Language Interpreting at Augustana University and works as a freelance interpreter/translator.

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This episode of "Heart to Heart with Anna" is the final episode of Season 5: Miracles DO Happen! We started Season Five with a miracle story about a woman who found out after she gave birth that her son had a critical congenital heart defect and who was in the right place at the right time to receive the treatment he needed to survive. This episode, likewise, deals with the discovery after birth that a baby boy was born with congenital heart defects. This show not only deals with the discovery after birth but also with the intercession of an angel who might very well have helped to save this baby's life. Our Guests for this show include Rebekah Simpson and her mother Susan Mills who both witnessed a miracle.

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