Stan, 23 Arrhythmogenic Right Ventricular Dysplasia (ARVD)

At a Glance:

  • Stan and his younger brother, Domonique, were both born with a life-threatening condition called arrhythmogenic right ventricular dysplasia (ARVD).
  • When Stan’s condition progressed to affecting both sides of his heart in his 20s, he was admitted to the hospital in need of a heart transplant.
  • Doctors feared Stan wouldn’t survive the wait for a donor heart and implanted the SynCardia temporary Total Artificial Heart (TAH) to bridge him to a transplant.
  • Stan was discharged a month later to wait for a matching donor heart at home using the Freedom® Portable Driver.
  • After 555 days of life with the TAH, Stan received his heart transplant.

At the age of 16, Stan blacked out and collapsed while playing basketball. Doctors ran tests on his heart and discovered that he had arrhythmogenic right ventricular dysplasia, or ARVD. The condition, which affects one in every 1,000 to 1,250 people, causes irregular heart rhythms and is a common cause of sudden death among young athletes.

ARVD is hereditary, and after his diagnosis, many of Stan’s family members chose to be tested. Stan’s younger brother, Domonique, was also diagnosed with ARVD. Both brothers were fitted with defibrillators to regulate their heart rhythms, but they also had to limit their activities.

“It changed a lot for me,” said Stan. “I couldn’t play sports anymore and I really couldn’t do anything. They just didn’t know how strong my heart was.”

Stan and Domonique’s defibrillators kept them going for several years, but eventually, Stan’s ARVD had progressed to biventricular dysplasia, meaning his condition was now affecting both sides of his heart.

“He was dying of shock. His heart was not pumping enough blood around to maintain the health of all his vital organs, and without urgent intervention, he would not have survived,” said his cardiac surgeon, Dr. Jonathan Haft.

Stan and his younger brother, Domonique, were both bridged to heart transplants with the SynCardia TAH.

It could take two months or it could take two years. Honestly, it could take longer. But I'm just glad to be able to be home with my kids and family.

Stan, on waiting for a donor heart

Bridge to Transplant

At 23, Stan received the SynCardia temporary Total Artificial Heart (TAH) as a bridge to transplant. A month later, Domonique received the TAH as well.

“We’ve always had to look out for each other and deal with each other’s episodes, no matter who was around,” said Domonique. “It made our bond close. I felt the safest when he was around, and I can’t wait to go home and be with my family and just sleep in my own bed again.”

Just a few weeks after Domonique’s implant surgery, he received the matching donor heart he needed, but for Stan, the transplant journey would take more time.

Six weeks after his implant surgery, Stan was discharged from the hospital using the Freedom® Portable Driver to pump his TAH. He returned home just in time to celebrate Christmas with his family. With a few exceptions, he was able to resume a normal life while he waited for his donor heart, even playing pickup basketball while wearing the Freedom Driver in the Backpack.

After 555 days — nearly 18 months — of life with the SynCardia TAH, Stan received his heart transplant. Thanks to his time on the TAH, he went into the surgery feeling healthy and strong and was able to leave the hospital with his new donor heart just a few weeks later.

“[The SynCardia TAH] brought my life back — to make me as healthy as I am now,” Stan said during a hospital press conference after his transplant. “I got the transplant two weeks ago and I feel like I could take a jog as we speak. I want to thank the donor who gave themselves for me. I’d like to meet their family one day. Hopefully they’d want to meet me.”

Photo credits: University of Michigan Health System.