Heartening journey

Andres Castillo Jr. was born with a hole in his heart.

At age 2, he underwent his first major heart surgery to repair the hole—an atrial septal defect. Seven years later, his first pacemaker was implanted—a box the size of an old VHS tape, visible under his shirt.

He tried to live a normal life, though his teenage years and young adulthood were marked with repeated hospital stays and countless heart procedures.

“Every year, my doctors wrote notes to the school saying I couldn’t do anything physical,” he said. “I really wanted to play dodgeball and do what the other kids did. The doctors were scared my pacemaker would get hit.”

Castillo was 35 when his tricuspid valve, the door that lets blood enter the heart from the body, narrowed. It took yet another open heart surgery for the tricuspid valve to be replaced with a bovine pericardial valve: a manufactured valve made from the sack that contains a cow heart.

It didn’t last.

By his 43rd birthday, his bovine valve was failing and creating a deadly domino effect on his other organs. With a seventh pacemaker and four decades of surgeries, his options were limited.

UT Health San Antonio doctors, including cardiologist Marc Feldman, M.D., and A.J. Carpenter, M.D., Ph.D., the cardiothoracic surgeon who had performed his valve surgery, considered what to do next. They consulted with Steven R. Bailey, M.D., interventional cardiologist.

They all agreed: He wouldn’t survive another invasive heart valve surgery.

“We knew we had to do something. If we didn’t, he would be dead within six months,” said Dr. Bailey, chief of the Janey and Dolph Briscoe Division of Cardiology at the UT Health Science Center.

Pacemakers had damaged Castillo’s tricuspid valve, he said. When the right tricuspid valve doesn’t work, the liver starts filling with blood and fluid. This condition results in cardiac cirrhosis of the liver. Once one organ shuts down, others can follow.

Castillo’s immediate future looked grim.

“He would have endured extended stays in the hospital; he would have had no quality of life,” Dr. Bailey said. “That is no way to live.”

Members of the Heart and Vascular Institute, a collaboration of cardiologists and cardiothoracic surgeons from UT Medicine and the University Health System, considered a heart transplant, “but we learned that was not an option,” Dr. Bailey said.

A heart transplant is performed when there is failure of the left ventricle. Castillo’s case was unique because the failure was on the right. This unusual condition required a novel remedy.

They turned to a relatively new device called the Edwards SAPIEN XT Transcatheter Heart Valve, first introduced in the U.S. in 2011.

The Edwards valve consists of an expandable metal mesh cage with bovine tissue within it that expands and contracts like the heart’s natural valve. It is approved by the Federal Drug Administration for aortic or left valve use, but “there are so few patients with Andres’ right valve problem that research has not been done on use of the Edwards valve on it,” Dr. Bailey said. “This is where the art of medicine can extend the science.”

[pexyoutube pex_attr_src=”https://youtu.be/3KcuLYBbT0E”][/pexyoutube]

Source: Edwards LifeSciences Corporation, image of Transcatheter Aortic Valve Replacement (TAVR)

It wasn’t a guaranteed fix and did include some risk. But Castillo, a single father of 11-year-old son Andres Castillo III, said he prayed about it and decided the chance to spend more time with his son was worth the risk.

“Since he was 5 years old, I have been raising him by myself,” Castillo said of his son. “I cherish every day I have with my son. He has made me a better father.”

On Jan. 8, a team of 22 health care professionals at University Hospital inserted the valve into Castillo’s existing bovine valve. The noninvasive procedure used a catheter to push the crimped valve into an expanded balloon.

“You get the equivalent of a new valve without having surgery,” Dr. Bailey said.

Dr. Bailey is cautiously optimistic about Castillo’s prognosis. Before the valve procedure, Castillo’s liver had already begun to fail and other organs were following suit. Dr. Bailey said he is hopeful that treating the right valve will improve his overall health.

“In all reality, we don’t know. In patients who have had similar problems with their tricuspid valve, this returns them to normal status. The only thing wrong with him was that right valve,” he said.

Castillo still struggles to climb the stairs to his second-floor apartment. Coughing fits interrupt his speech. A collection of prescription pill bottles lines his tabletops. This is his daily life.

Yet his body is getting stronger. Slowly. And his spirituality remains intact—evidenced by the crosses hanging on the wall in his apartment.

“I take life day by day. I take things slow,” he said.

Dr. Carpenter has helped to save Castillo’s life twice in seven years. She’s seen him fight through prolonged hospital stays and multiple health crises. She is confident that with Castillo’s right tricuspid valve repaired, he will be a candidate in the future for a heart transplant.

“Andres told me once that his dream was to see his son graduate from high school,” she said. “I would like him to think bigger than that. I think we can help him be here for even more of his son’s life.”

Castillo has struggled with heart failure his entire life. He knows the struggles aren’t over, but neither is his journey.

He has much to be thankful for, he said, including his family that continues to support him and his doctors who haven’t given up on him.

“Thanks to all of them and to God, I am doing better,” he said. “I believe God wants me to be here. I have been through so much, but, at a time when others may have said I had no options, these doctors worked together to help me. They saved my life.”