On a winter day in 2000, Santa Maria resident Susan Friesen took her family to a McDonalds in Santa Clarita for lunch. The Friesens had temporarily relocated to Southern California because their oldest daughter, 6-year-old Shivan, was awaiting a heart transplant at the UCLA medical center.
“The girls were playing in the playhouse,” Susan recounted to the Sun in a recent interview. “I was carrying the food out to the table.”
What happened next, she said, was a blur: Shivan and her sister Alaina were getting ready to go down the slide when Alaina felt Shivan’s body go completely limp. Aware that something was wrong, Alaina pushed her unconscious sister down the slide and yelled out to their parents.
“My husband said, ‘Call 911!’” Susan said. “I saw her purple/blue face and I dropped all the food—Happy Meals, fries, everything—and ran for a payphone.”
Paramedics responded to the panicked call and were able to resuscitate Shivan.
“But she did die,” Susan said. “I’m not sure for how long, but she did die. Luckily, it didn’t affect her brain, because she’s perfectly fine now.”
Susan writes about this harrowing experience—and many others—in a book she’s working on, tentatively titled Lightning Strikes Twice: A Mother’s Story About Her Two Daughters’ Heart Transplants.
And, no, that’s not a typo—two of the Friesen’s three daughters had to have heart transplants.
Shivan was hospitalized first in October 2000 for extreme tiredness and loss of appetite. She was later diagnosed with idiopathic dilated cardiomyopathy, which translates to a severely enlarged heart. Susan said the doctors were uncertain what caused Shivan’s heart to “balloon up,” but they said mostly likely a virus had settled in the organ.
“They told me it was a fluke,” she said, “and I wouldn’t have to worry about my other children.”
So imagine Susan’s horror when three years later—to the day—Shivan’s sister Lindsea, who was also 6 years old at the time, was diagnosed with the exact same condition. Lindsea received her transplant in late November 2003, after concerns that a large blood clot in her left ventricle would loosen and trigger a fatal embolism.
The sisters’ problems led doctors to believe the condition was genetic.
“Genetics is really in its infancy,” Susan said, adding that at the time her daughters’ doctors only knew about 30 different genetic markers. “With all the mapping that’s been going on, who knows? There are probably hundreds more.”
And now that her children are reaching the age at which they might want to start having children—her sons are in their mid to late 20s—Susan said she wants to see if the doctors’ theories have developed.
“They can’t tell definitely which specific gene has been mutated,” she said. “I’m going to have a blood test done to learn more about my family’s condition.”
Currently, all of the Friesens have their hearts checked annually to see if there are any problems, and Shivan and Lindsea get blood tests every three months. Plus, the girls have to take medication daily to ensure their bodies won’t reject the transplants. But both of the girls said they’re accustomed to the routine now.
“If you saw me … without my transplant scar, you wouldn’t even be able to tell that I was sick at one point,” Shivan said. “We’re just regular people.”
Well, not quite. For the last five years, Shivan and Lindsea have been competing in the U.S. and World Transplant Games, included under the same umbrella as the Olympics and Special Olympics. The games give men, women, and children with transplants the opportunity to compete in an elite sporting event.
Both of the girls have medaled at the games in bowling, badminton, track, and swimming. At the last games the family was able to attend, Shivan received medals in all four events she entered, including a gold medal in the 100 Individual Medly.
The family is currently fundraising to help pay the girls’ ways to the 2011 World Transplant Games in Göteborg, Sweden.
Shivan and Lindsea explained that competing in athletics is different for them because they don’t have any nerve endings in their hearts. As a result, they have to be very cautious when warming up.
“Swimming is usually OK, because you
get a warm-up lap,” Shivan said. “But we can’t just start running. We have to stretch, and then walk and jog.”
The girls plan to talk about their experiences as heart transplant recipients and athletes in their mom’s book, to help educate people about organ transplants and organ donation.
“Sometimes when I tell people I have a heart transplant, they really don’t know what that means,” Shivan said, adding that some people even think her condition is contagious. “Once the diseased organ is out, I don’t have the disease anymore.”
Their sister Alaina will also share her perspective in the book.
“I’m happy [about doing the book] because not many people know what we’ve gone through as a family, and what other people go through,” she said. “It would be nice for them to understand, and for them to know that if they’re in an accident and they die, they could save lives.”
Contact Managing Editor Amy Asman at aasman@santamariasun.com.
This article appears in Oct 28 – Nov 4, 2010.