Heart To Heart With Anna

Send us a textWhy are conferences specifically for adults with congenital heart defects important? Who attends ACHD conferences? What can a person expect to learn at a virtual conference?Annie Ulchak was born in Lima, Peru in 1979 with nomenclature HLHS, pulmonary stenosis, double inlet right atrium, and double outlet right ventricle.  She was adopted and had the two-stage HLHS process: BT shunt at age 3 and classic Fontan at age 7 at Boston Children's Hospital.  She was diagnosed with CHF and cardiac cirrhosis in 2010.  In June 2014, she was diagnosed with autoimmune serositis of the peritoneum. In December 2014 and January 2015, she was diagnosed with atrial flutters and has undergone two cardiac ablations. Following her most recent health struggles, Annie developed a passion for nutrition and improved her health dramatically via an overhaul of her diet. Annie works full-time as a dual executive assistant and project coordinator for a prominent Boston health care system.  When she's not working sh

Send us a textWhat is it like to be the mom of not one but two children with CHD? How can you manage epilepsy in a child with CHD?Melanie Letzer is a geriatric nurse practitioner. She lives in Maryland with her husband Jack and their three children. Her older son, Freddy, now 16, was born with Tetralogy of Fallot with Pulmonary Atresia with Multiple Aortopulmonary Collateral Arteries (MAPCAS). Her younger son, Nicholas, now 5, was also born with TOF and later developed epilepsy. Melanie and John also have a heart-healthy daughter, Alexandra, who is 13. In this episode of "Heart to Heart with Anna," Melanie talks with Anna about finding out her sons would be born with heart defects, their surgical treatments, and what it was like for Melanie to have a heart-healthy daughter. She also talks a bit about their family dynamic and their philosophy in living with chronic illness.Links to 'Heart to Heart with Anna' Social Media and Podcast Pages:Apple Podcasts: https://itunes.apple.com/us/podcast/

Send us a textWhat was it like raising a daughter with a congenital heart defect in Australia in the 1980s? What challenges did parents of a daughter requiring open-heart surgery face? What does an adult Heart Warrior appreciate about her parents now that she's all grown up?Donna and Ian were born in Brisbane, Australia in the 1950s. They met in the early 1980s and married in 1982. Megan was born in February 1983. All was going well for the new family until Megan became unwell at 6 days old. Megan made her first ambulance trip to the pediatric cardiology unit at Prince Charles Hospital. With her parents by her side, Megan spent the first four months of her life in the hospital where she had a pulmonary banding operation and finally became strong enough to go home. Megan had two more surgeries as a child, at age 5 and 10, and one surgery at age 25. Today, Donna is very active in her local church and the sewing guild, and Ian plays drums in several local bands.  Megan's former "Heart to Heart wit

Send us a textWhat lessons can we learn from our Heart Warriors? Why might a Heart Mom write a book about her life experiences dealing with CHD? How does a Heart Mom use her personal experiences to fight for others in the hospital?Australian Libby Andrew is a busy mom to four sons: John, 14, Matthew, 12, Stuart, 10, and Daniel, 7. Her youngest son Daniel was born with half a heart. Diagnosed in utero at 20 weeks, Daniel was not expected to survive. He had his first surgery at 21 days old, his second surgery, a Glenn shunt, at 5 months, and a Fontan at 3.5 years of age. Unable to find the resources she needed to guide her on her journey, Libby wrote a book “Living with HALF A HEART: A Mother's Guide to Navigating Fontan Surgery.”   Since his surgeries, Daniel has been thriving - he enjoys being with his older brothers and attends school. Libby's show on Amazon: https://smile.amazon.com/Living-HALF-HEART-Mothers-Navigating/dp/1925884910/refLibby's book in The Heart Community Collection: https://h

Send us a textPaul Cardall was born in 1973 with only half a heart. He had his first open-heart surgery a few hours after birth and two more surgeries at age 13 and 14. As a child, he took piano lessons but wasn’t keen on practice. As a teenager, he started composing and became obsessed. He was hired to play at weddings, in restaurants, and in department stores. In 1994, author Richard Paul Evans invited him to compose a musical adaptation of his No. 1 New York Times best-selling novel "The Christmas Box," which helped launch his professional career. In 1999, Paul founded Stone Angel Music, where he released his albums independently. His albums debuted at Number One on eight Billboard charts and have earned over 2 billion streams on Pandora alone. By 2008, Paul's health had declined to the point where he was placed on the transplant list. Following his transplant in 2009, Paul experienced newfound energy. Today, he lives a very full and active life as an entrepreneur, recording artist, husband,

Send us a textWhat was it like to grow up with tetralogy of Fallot in the 1980s? How can having a heart defect influence your career choice as an adult? What psychological challenges do Heart Warriors face?Joy Ogawa was born in Hawaii with tetralogy of Fallot in 1979  and had an open-heart surgery at 22 months of age. She considers herself lucky to have only experienced one surgery in her lifetime.Despite other health issues affecting her eyes, ears, abdomen, and her emotional wellbeing, Joy was able to participate in physical activities and complete her education and is now a psychologist working in Corrections/Public Safety. Joy highlights her experience of living with CHD in her newly released self-published, illustrated children’s book “I am a Heart Warrior.”In this episode of “Heart to Heart with Anna,” Joy shares with Anna some of the medical challenges she has faced over her 40+ years of living with a congenital heart defect and why she considers herself to be as fortunate as she is.Links mentioned in

Send us a textWhy might a Heart Mom choose to volunteer with an advocacy organization? What can an advocacy organization do to help others learn about congenital heart defects? What are the future plans for Conquering CHD and how can people get involved?Liz Schurrer is mom to eight-year-old Eli, who was prenatally diagnosed with truncus arteriosus. Her family’s life changed forever as they were thrown into the CHD world. Eli had his first open-heart surgery at one week old,  his second at age three, and may need another surgery in the future. Liz began volunteering on behalf of all CHD families when Eli was six months old. On Eli’s first birthday, she flew to Washington D.C. to advocate for increased research funding on behalf of her son and all those with CHD. She co-founded the Conquering CHD Ohio state chapter. Conquering CHD directly supports CHD patients and families. In 2019, she joined the staff of Conquering CHD. As the Donor Relations Director, she finds it rewarding to work with generous donors who

Send us a textWhy would an artist choose a career working in the operating room of a pediatric hospital? What joy is to be had of drawing broken hearts and the operations surgeons use to save these critically ill babies’ lives? In what other ways does artist Susan Russell Hall find joy in art?Susan Russell Hall is a Northwest artist and medical illustrator who comes from a long line of artisans. Her first solo exhibition was in 1977 at the Women’s Cultural Center at the University of Washington. In 1979, she commenced working as a medical illustrator at Seattle Children's Hospital, moving to Mary Bridge Children's Hospital in 1998. Her work involves documenting pediatric heart surgeries from the operating room. Over the years, she has created more than 6500 individual heart drawings. These intricate works of art are created by using charcoal, graphite, and colored pencil. As a professional artist, Susan has explored other mediums, such as acrylic and oil painting and eventually pyrographs, the actua

Send us a textWhat can a healthcare advocate learn by becoming a patient facing a life-and-death situation?Why might a patient advocate write a book about his life-changing heart event? How does someone who has worked in the field of healthcare for 37 years see the field of healthcare changing to better suit the needs of patients?Thomas Dahlborg is from Brockton, Massachusetts. He began his career in healthcare as a transport aid, IV aid, and housekeeper where he saw firsthand the impact of relationships and connections within a healthcare system on clinicians and staff, and patients, families, and communities. He also has the experience of being a patient, when he developed viral myocarditis and was told he would never work again and would need a transplant.Now with 37 years of experience in healthcare service and leadership, Tom is passionate about improving the healthcare system and making healthcare better – for employees to work, physicians to practice medicine, patients and families to receive care, and

Send us a textWhat is congenitally corrected transposition of the great arteries or ccTGA? Historically, people born with ccTGA tended to do fairly well. Why is it today doctors are choosing to operate on the hearts of babies born with ccTGA? What does Dr. Edward Bove think about the future of babies born with ccTGA?Erin Beckemeier is mom to Conway, born in 2007 with ccTGA, a large ventricular septal defect or VSD, and sub-pulmonic stenosis. He was later diagnosed with an Ebsteinoid tricuspid valve. At six months of age, he had an arterial switch with a Senning (a double switch), VSD closure, and resection of the stenosis. Conway’s recovery from these procedures was rocky, as he suffered a seizure and complete heart block, requiring a dual-chambered pacemaker. By two years of age, he was struggling with atrial flutter and underwent a mitral annuloplasty and ablation/Maze procedure. At five years, his RV-PA conduit was replaced and he was upgraded to a bi-ventricular or CRT pacing system. At 11 years old he ne

Send us a textWhat 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 an experienced Fontanner who might be facing multiple medical procedures?Leslie Castro is a 48-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. She is almost 2 years post-transplant. Prior to transplant, Leslie had a very complicated journey with her heart. In just one day, she underwent a Fontan revision, Cox-Maze procedure, and pacemaker implantation. She also experienced arrhythmias and tried a range of medications to control her symptoms. Ultimately, the Fontan revision was unsuccessful which led to her receiving a transplant from a Hepatitis C positive intravenous drug user.   Fortunately, today Leslie is doing well and she is here to talk to us about her journey to transplant. Li

Send us a textWhat happens when one daughter, in a set of twins, is diagnosed with a congenital heart defect and the other twin is heart-healthy? How can a family handle having one child in the hospital, separated from her twin? What should families tell their children about their medical history? What is the value of sharing family stories? Lisa and Michael Olivares are parents to identical twins Mabel and Maggie, born in 2013. The pregnancy was complicated by Twin-to-Twin transfusion syndrome and Mabel was smaller than Maggie. Two days after they were born, a nurse picked up a heart murmur in Mabel. She was diagnosed with coarctation of the aorta and had surgery at 9 days of age. Just after her first birthday Mabel was diagnosed with subaortic membrane, and had her second surgery shortly before 2 years of age, followed by a third emergency surgery at 4 years of age due to heart and lung symptoms. At the age of 4, she developed heart and kidney failure but has thankfully responded well to medical therapy. Ma

Send us a textHow can a mother, grandmother, and great-grandmother -- determine how to help families like her own? Why would a woman make it her mission to help others with an invisible illness? What can we learn from such a woman?Jackie Renfrow thought her family had a history of epilepsy. After losing her son Jimmy in 2000 and her daughter Crissy in 2002, she was desperate to find a way to save her two baby granddaughters. It wasn't until her own mother started fainting and having irregular heartbeats that she finally got answers. Emergency doctors performed an electrocardiogram (ECG) and promptly diagnosed her with Long Q-T syndrome. Jackie and her granddaughters Alexis and Jessica also had an ECG and they were diagnosed with the syndrome as well. Jackie has since started a chapter of the Sudden Cardiac Arrest Association in Indianapolis. She works with scientists, doctors, parents, and others to promote awareness of sudden cardiac arrest and access to defibrillation and treatment. In honor of her chi

Send us a textHeart Warrior Lisa Dang Colvil returns to "Heart to Heart with Anna" but this time she is joined by her mother and her daughter. Lisa was born with a complicated congenital heart defect and Anna talks to her mother, Kim, about her experience fleeing war-torn Vietnam, having a daughter in a country where she barely knew the language, and what it was like to discover her daughter had a heart defect. Anna also talks with Serenity and Lisa about being 1st and 2nd generation Americans, and how different life is here for them compared to the life their mother/grandmother lived.Link mentioned in this episode: Lisa's first appearance on "Heart to Heart with Anna" -- https://www.buzzsprout.com/62761/8083369Anna's Buzzsprout Affiliate Link (if you'd like to try Buzzsprout for your podcast and get a bonus gift card -- and Anna will, too!) use this link: https://www.buzzsprout.com/?referrer_id=16817Links to 'Heart to Heart with Anna' Social Media and Podcast Page

Send us a textMike Edenburn was born in 1943 with Tetralogy of Fallot (ToF). Mike was the 44th patient to receive the Blalock Taussig shunt. On October 2, 1945, Dr. Alfred Blalock, Vivian Thomas, and Dr. Denton Cooley performed heart surgery on Mike. After the surgery, Mike turned from blue to pink and was able to breathe freely for the first time in his life. Mike enjoyed good health until an auto accident at the age of 20 left him with subacute bacterial endocarditis, where it was discovered that the shunt was no longer sufficient. Dr. Horace Stansel performed another TOF repair on Mike's 21st birthday in 1964. Mike is a computer specialist, entrepreneur, family man, devoted Catholic, and volunteer with friends from everywhere. He is involved with the Rotary Club's Gift of Life program, which provides life-saving care to children with heart problems. Today, Mike is 77 years old and very grateful to Our Lord and medical professionals responsible for his good health. Today Mike will talk with Anna a

Send us a textIs it possible to meet one’s surgeon over 4 decades after open-heart surgery when you don’t even know if your surgeon was a man or a woman and you only know the last name? Who can help you when the hospital tells you that they don’t have your records anymore? What joy is to be had from connecting with someone who saved your life when you were a little girl?Today’s show is A Surprise for Heart Warrior Amy M. Le! and our Guests are many! You will come to meet them over the course of our program.Some of you will remember Amy M. Le from just a couple of shows ago -- it was broadcast on April 13, 2021. For those of you who missed Amy M. Le's earlier show, Amy was born in Vietnam and immigrated with her family to the United States in 1980 due to the fall of Saigon. She had surgery for a congenital heart defect at the age of 5. Today, Amy lives in Oklahoma with her husband and son and is a full-time author.Links Mentioned During this Episode:Payton's Nonprofit Organization: http://www.ourhear

Send us a textWhy would a Heart Warrior choose to become a Nurse Practitioner? What does the liver and liver health mean to a Fontan Heart Warrior? What does the future hold for people with single ventricle hearts and compromised livers?Mary is a 29-year-old female with hypoplastic right heart syndrome, atrial septal defect, transposition of the great vessels, and coarctation of the aorta. At 9 days old, she had the Norwood, then at 3-6 months old, the Glenn, and Fontan around 2 years old. After the Fontan, she saw her pediatric cardiologist semiannually for routine checkups but overall felt like a “normal” child. At 15, she started having increased fatigue, which led to a pacemaker/defibrillator implantation. She was so inspired by the healthcare providers caring for her that she earned a nursing (BSN) and Nurse Practitioner degree (Doctor of Nursing Practice - DNP). She began working as a nurse practitioner in Gastroenterology and eventually hepatology. She is passionate about working with congenital heart

Send us a textWhat can encourage a Heart Warrior to start learning more about her heart condition? What kind of books has Margaret Ellis Raymond written and what’s the hold-up with the 4th and 5th books? Why would a Heart Warrior start a YouTube channel and what can we expect to see on that channel?Margaret Ellis Raymond is an author, editor, and YouTuber from Portland, Maine. She was born with tricuspid atresia and other heart defects for which she underwent three surgeries before the age of 3. Margaret's love of stories started early when her mother placed her in front of a tape recorder to tell stories. It was her way of occupying the talkative child while she got ready for her day. Her love of stories helped her to overcome reading difficulties, and by fifth grade, she began to tackle chapter books. As an adult, Margaret has written a series of three books for young children and started a YouTube channel about tricuspid atresia to educate herself and others. Her hobbies include fencing, photography,

Send us a textLeslie 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

Send us a textWho 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