Teenagers often take going to school, studying with classmates and hanging out with friends and family for granted.
Mei Sano, 18, however, could not, at least not until after February 2009, when she received a heart at Columbia University Medical Center in New York.
“I was able to endure (the whole process) because I wanted to meet my friends again,” said Sano, now in her final year at Nihon Kogyo Daigaku Komaba High School in Tokyo. She stayed in New York until the following September recovering.
Sano was apparently in perfect health until she was 10. It was then that her face began to swell and she started vomiting at school. The doctors diagnosed her as having dilated cardiomyopathy.
DCM patients have enlarged hearts. This stretches the organ and weakens its muscles, preventing proper blood flow.
“Our life completely changed,” said her mother, Tomoko. “She was an energetic girl, but she had to take medicine every day and a doctor made her stop engaging in sports.”
In 2008, Sano’s condition worsened. Her doctor at the University of Tokyo told the family that the only way for her to survive was to get a heart transplant in the U.S.
This is because she was 16 and living in Japan — two factors that left her in a precarious position — too young to accept a new heart from an adult and legally unable to get one from someone her age.
At the time, the organ transplant law banned organ donations from people under 15 who are declared brain dead.
This only changed in July, when the revised law took effect, and the age minimum was dropped.
Sano also had to have ventricular assist devices installed in both of her right and left ventricles. Normally, only one is put in.
Nobody had flown to the U.S. with two VADs before her. “I was worried already on land with the VADs, so I felt nervous about flying,” she said.
The trip to the U.S. was risky, as well as costly: the family had to raise ¥200 million.
Sano, who thought it would be too much of a burden for her family and supporters, told them they should give up on her, her mother said.
When she was asked if she really said that, Sano kept silent, and her eyes filled with tears.
“We thought we had to be ready to say goodbye (at that time),” her mother said.
Even before the trip, the fear of sudden death was ever-present, because Sano could suffer a blood clot that might travel to her brain.
“Now that I have had a heart transplant, I can keep from catching an infectious disease if I take care of myself. Before, no matter how strongly I wanted to survive, just one blood clot could have killed me,” Sano said. “There was always anxiety because anything could have happened to me.”
After spending countless sleepless nights, Sano, accompanied by seven doctors from Tokyo, flew to New York in February 2009.
The doctors traveling with her helped carry the ventricular devices when Sano had to use the lavatory, and they were constantly checking the oxygen density situation. A transplant coordinator asked her to eat something while en route, but she could not eat anything, and immediately after the plane landed, she was taken to the medical center by ambulance.
After her arrival she grew stronger and just 10 days later the transplant was carried out.
But her recovery was much slower than what her Japanese doctors had expected, her father wrote on a blog. “We felt many times as if we were crushed by anxiety that got bigger every day,” he wrote.
Two months later, Sano was released from the intensive care unit, but she still had to stay in New York to undergo regular checkups. Life abroad was stressful, she said. “I missed my friends.”
She had to have a blood test twice a week, but found it was so exhausting that she stayed in bed for the rest of the day.
Sano longed to go back to school, and was finally able to do so in October 2009. “I love it so much that I’m always the first one to arrive” at school in the morning, she said.
Sano, who is now preparing to apply to a university, said she hopes to study Spanish, the language the Latin American nurses working at Columbia University spoke.
She also hopes to support those who need a transplant, including 19-year-old Sora Nakagomi from Yamanashi Prefecture, who has DCM. “I saw him at the University of Tokyo while I was there, and he also wants to get a heart transplant at Columbia. I want him to get well as soon as possible,” Sano said.
As an organ recipient in the U.S., Sano thinks transplants in Japan are more desirable because operations overseas are very expensive and family and friends are far away.
Although donating an organ is still controversial in Japan, Sano calls it “a baton of life.”
“I really appreciate and treasure the gift of life,” she said.