FON #HeartHero Spotlight: Leslie Castro
The Fontan Outcomes Network is a community of patients, family members, caregivers, clinicians, researchers, and supporters, dedicated to improving the quality of life and health outcomes for individuals with single ventricle circulation. Each month, we feature a member of the community who goes “above and beyond” in service of this mission as our #HeartHero.
Name: Leslie Castro
About Leslie
I am 48 years old. I had tricuspid atresia, pulmonary stenosis, mitral valve regurgitation, PDA, ASD, VSD, HRHS, cardiac cirrhosis. I still have Stage 2 liver fibrosis due to the Fontan.
I was one of the oldest living HRHS patients that worked about 60 hours a week. I was an elementary teacher and I taught English as a second language at a small community college until a few months before my transplant.
I had the original Blalock-Taussig shunt in September 1973 at 4 months old and the classic Fontan procedure in May 1985, where I was the third patient to have it done at Pittsburgh Children's Hospital. My pediatric cardiac surgeon was Dr. Ralph Siewers. In February 2005, I had the Cox maze III procedure, revision of the Fontan, and a pacemaker implanted all in one day at Children's Memorial Hospital in Chicago (now named Ann & Robert H. Lurie’s Children’s Hospital) where I was the 81st person to have that surgery by Dr. Constantine Mavroudis, Dr. Carl Backer, and Dr. Barbara Deal.
I had three pacemaker implants, five coils, and 20-plus cardiac caths, 10-plus liver biopsies plus multiple arrhythmias and multiple TIAs.
The pediatric cardiologist gave my parents the opportunity to do the classic Fontan in the late 1970s or wait until the 1980s. I’m glad my parents waited a little bit longer.
I was the oldest single ventricle or half a functioning heart to willingly receive a Hepatitis C donor’s heart from a 29-year-old female intravenous drug addict for my heart transplant on August 8, 2019 at Presbyterian Hospital in Pittsburgh. My cardiac surgeon was Dr. Christopher Sciortino.
“Although I had multiple complications during and post transplant, I still persevered through everything maintaining a positive outlook on life. I’ve never really limited myself and I’ve achieved all the goals I’ve set for myself. I’ve traveled extensively in the USA, 42 states, and 17 countries. I love to travel!”
While in the hospital, I had multiple complications such as a brain bleed, a seizure during the surgery, a stroke, pneumonia, pulmonary embolisms, thrush, sepsis, multiple blood clots everywhere, almost bled to death, paralyzed vocal chords, infiltrated hands, pleural effusion or fluid buildup around both lungs, blood infection, plus more. Most of it was caused from being under anesthesia too long during surgery which should have been only an eight-hour procedure, but not mine. I spent almost 13-plus hours in surgery.
I had a middle meningeal artery embolization a few weeks after my heart transplant to alleviate the brain bleed. I had my lung drained a month and a half after the transplant too.
Although I had multiple complications during and post transplant, I still persevered through everything maintaining a positive outlook on life. I’ve never really limited myself and I’ve achieved all the goals I’ve set for myself. I’ve traveled extensively in the USA, 42 states, and 17 countries. I love to travel!
I’ve also been an advocate for congenital disease awareness being on the first congenital heart forum on the internet in 1998 before ACHA, Conquering CHD, and GUCH. I’m also the first single ventricle to advocate on Capitol Hill with ACHA in 2006.
Currently, I’m a Mental Health Therapist and a Moderator at hepatitisC.net and Health Union.
I have a very optimistic approach to life. My cardiologists never gave an estimated number because they told me that they really didn’t know how long I would live. So, I’ve taken their way of thinking and enjoyed life to the fullest however long that may be into the future.
Want to nominate your #HeartHero? Whether it’s a nurse, a patient, a physician, family member, or other, we encourage you to nominate your #HeartHero for the spotlight here.