Congenital Heart Disease to Hepatitis C Donor’s Heart

By Leslie Anne Castro

2 min read

I'm 48 years old and I had tricuspid atresia, pulmonary stenosis, mitral valve regurgitation, pactus ductus aorta, atrial septal defect, ventricular septal defect, transposition of greater vessels, hypoplastic right heart syndrome (HRHS), cardiac cirrhosis. I still have liver fibrosis due to the fontan.

I was one of the oldest living HRHS patients that worked about 60 hours a week up until my heart and liver transplant evaluations in November and December 2018. I was an elementary teacher and I taught English as a Second language at a small community college before my transplant.

My history with my health and heart

I had the original Blalock-Taussig Shunt in 1973. The Classic Fontan Procedure in 1985, where I was the 3rd patient to have it done at Pittsburgh Children's Hospital. Both surgeries were done by Dr. Ralph Siewers. Then, I had the Cox-Maze IIII Procedure, Revision of the Fontan, and a pacemaker implanted all in one day at Children's Hospital in Chicago where I was the 81st person to have that surgery in 2005. Dr. Constantine Mavroudis was my cardiac surgeon. In the 46 years prior to the transplant, I had 3 pacemaker implants, 5 coils, and 20+ cardiac caths, 10 + liver biopsies, plus multiple arrhythmias and multiple TIA's.

The pediatric cardiologist gave my parents the opportunity to do the Classic Fontan in the late 1970’s or wait until the 1980’s. I’m glad my parents waited a little bit longer.

A new start with treatment

I was the oldest single ventricle patient or half a functioning heart patient, willing to receive a hep C donor’s heart for my transplant on August 8, 2019 at Presbyterian Hospital in Pittsburgh. My cardiac surgeon was Dr. Sciortino. Along with that I willingly took the case study drug called Epclusa for 90 days. By taking the medication, I was considered cured from hepatitis C that my heart donor had.

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.

Sorry I wrote so much. Feel free to ask me more questions.

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MatthewFerry Community Admin
Hi <inline-mention username="ladchawaii" user-id="3505035"/>, thank you for sharing your journey with the community. My heart goes out to you, you've experienced so many procedures and surgeries. It's wonderful to hear that you've been able to achieve all of your goals and are feeling better these days. How did you feel through hep C treatment? How soon after the successful transplant did doctors recommend you start up with that? Thank you for being here and sharing with us. -Matt (Community Manager)
1. Leslie Anne Castro Member
 <inline-mention username="MatthewFerry" user-id="3508391"/> At the time, I had multiple complications during and post transplant, so I was taking 40 pills on a daily basis for several months. While in the hospital, I had multiple complications such as a brain bleed, a seizure and a stroke during the surgery, pneumonia, pulmonary embolisms, sepsis, multiple blood clots everywhere, almost bleed 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 a 8 hour procedure, but not mine. I spent almost 13+ hours in surgery. I had brain surgery or middle meningieal artery embolization a week and half after the transplant to alleviate the brain bleed. I had my lung drained a month and a half after the transplant too. I had occupational therapy to help regain strength in my left arm and hand. I also had a physical therapy because I had limited to no mobility in my legs from being in the hospital for a total of 4 months. Along with that, I had to see a speech therapist because I had paralyzed vocal chords. I basically had to learn how to speak again. Currently, I’m able to use my left hand although I can’t make a fist. I regained mobility in my left arm too. As far as the hepatitis C treatment, I was immediately started on the drug. Epclusa. I took one pill per day for ninety days. I was basically a trial guinea pig for this drug. I’m also a case study patient for Pittsburgh Presbyterian Hospital. The two leading hospitals in the USA that are transplanting hepatitis C organs are Pittsburgh Presbyterian Hospital and Vanderbilt Hospital in Nashville, TN. Because I was willing to accept a hepatitis C organ, my friend, who was also a single ventricle patient, willingly accepted hepatitis C organs as well and she is doing fantastic too.

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