For years, puzzling symptoms and a troubling medical condition had stalked their family. Growing up in Taiwan, Vivian was athletic and seemed to be healthy. However, she began to lose strength in her early 30s and went to the doctor with her father, Paul. Vivian was told she had a heart condition. "But no one really explained the problem to me," she says.
At first, Vivian was able to dismiss the symptoms. She even competed in a triathlon at age 40. But as she watched another member of her family struggle with symptoms she recognized in herself, her own condition became harder to ignore.
Over time, Vivian's symptoms had taken hold of her life, affecting her daily activities. She was not able to talk for more than 30 seconds without losing breath. While eating dinner, Vivian would often have to lie down for half an hour before returning to her meal because she would become so tired and lightheaded. Vivian's fear of having arrhythmia attacks also hindered her social life.
"I was afraid to go out on my own even to take a simple walk in the park," she says. "I didn't dare do that by myself."
"I was afraid to go out on my own even to take a simple walk in the park. I didn't dare do that by myself." - Vivian Tsai
Vivian realized that her father's last words were a call to action. With renewed resolve, she consulted with specialists, reached out to friends, and sought referrals. Finally, she received a precise diagnosis — apical hypertrophic cardiomyopathy, a disease in which the heart muscle becomes abnormally thick. Doctors in Taiwan told Vivian there was no effective treatment for this condition. She was also devastated to learn the condition can be inherited.
Determined to find answers, Vivian reached out to a family friend who is a cardiologist in the United States. He urged her to visit Mayo Clinic. Vivian was skeptical, so she turned to Mayo's website for more information. She discovered an educational video of Hartzell Schaff, M.D., a Mayo Clinic cardiovascular surgeon, that explained hypertrophic cardiomyopathy and a technique he developed called apical myectomy, a procedure to remove overgrown muscle along the bottom and side of the lower left heart chamber.
"The pieces began coming together," Vivian says. "Half-way around the world, I discovered there were experts who understood my problem and had done more than 200 surgeries to treat it. I realized Mayo Clinic is the place that gives you hope."
In June 2015, Vivian came to Mayo Clinic's campus in Rochester, Minnesota, for an evaluation and diagnosis. She met with cardiologist Rick Nishimura, M.D., who gave her shocking news. Dr. Nishimura explained that she had an undiagnosed apical aneurysm, which had been present in her body for at least two years, putting her in extremely high risk for blood clots.
Dr. Nishimura recommended she meet with Dr. Schaff immediately to discuss the possibility of the procedure she had been told did not exist — an apical myectomy.
Vivian underwent surgery in September 2015, supported by a rotating cadre of family members and friends, including her loving mother, Ruby. After a two month stay in Rochester, Vivian returned home symptom-free.
"My experience here has been just miraculous ... I am forever grateful to Mayo Clinic." - Vivian Tsai
"My experience here has been just miraculous," Vivian says. "I came to Mayo Clinic filled with hope mindful that my only goal was to be alive and well after surgery. I think, having lived for 40-some years, this is the first time in my life I feel that it's so easy to breathe. I am forever grateful to Mayo Clinic."
The high-quality care Vivian received is made possible through the generosity of benefactors who previously gave to hypertrophic cardiomyopathy research and education. To express her gratitude, Vivian and her family are paying it forward.
The family's gift, in honor of Vivian's parents Paul and Ruby Tsai, recognizes medical excellence and innovation at Mayo Clinic. It will advance patient care, research and education in hypertrophic cardiomyopathy. Not only will this generous gift benefit Mayo Clinic patients, but patients throughout the world, including East Asia, where the Tsai family calls home.
"When I found out I had a condition that was actually quite dangerous, my only goal was to improve my odds," Vivian says. "I am very grateful to Drs. Nishimura and Schaff, and all of the staff who looked after me and gave me the best care. Mayo Clinic is a place that gives you hope, delivers hope and makes your life better."