Growing up in a family of 11 children, Charity Tillemann-Dick accumulated what she calls “a lovely collection of scars”: pinched skin from the time one of her brothers accidentally twisted her right arm in a playground swing; a teenage shaving nick on her right shin; a pockmark, also on her right leg, from tripping in a pothole in Russia.
But the masterpiece of her collection is hidden from view: Splitting the chest of this 29-year-old opera singer is a long, narrow ridge beneath her breasts that marks not one but two double-lung transplants.
For an opera singer, lungs are a musical instrument — like a Steinway to a pianist or a Stradivarius to a violinist. They expand and contract, carefully expelling air to create beautiful arias and emotional duets. Singers spend years training their lungs. To lose them is to face losing one’s dream, and, of course, one’s life.
“I always loved the heroines in opera. They were these beautiful, strong women in impossible situations,” Tillemann-Dick says. “When I got sick, it felt like I knew these stories and now I was living one, music and all. The question,” she says, “was how to outsmart the tragedy.”
Today Tillemann-Dick continues to perform — better than ever, she says — thanks to the lungs of a middle-aged Honduran woman.
Tillemann-Dick’s troubles stem from pulmonary hypertension, a rare, potentially fatal condition that affects the heart and lungs. She was 19 when she first noticed some classic symptoms of the disease: shortness of breath and fainting spells. But as a new college grad who had been offered a chance to study at the renowned Liszt Academy of Music in Budapest, she wasn’t about to let a little trouble breathing stand in her way.
A politics major in college, the Denver native had assumed she would end up in government, following in the footsteps of her grandfather Tom Lantos, a Holocaust survivor who represented California for nearly 30 years in the House of Representatives, and older brother Tomicah Tillemann, a former speechwriter for Hillary Clinton and now a senior adviser at the State Department.
But she’d been drawn to music and, in Budapest, she found her niche as a coloratura soprano — “one of those rare big voices that can hit really high notes in rapid succession,” says Tillemann-Dick, who had performed with the Colorado Children’s Choir and minored in music as an undergrad. Vocal coaches were eager to work with her and producers were eager to cast her. She dismissed the fainting spells as a byproduct of low blood pressure, and sang on.
It wasn’t until Tillemann-Dick returned to the United States in 2004 to visit family and have a routine physical that she found an explanation for the mysterious fainting: “Idiopathic pulmonary hypertension. Stage 4.”
The diagnosis was gibberish to her.
Pulmonary hypertension, the doctor explained, is a type of high blood pressure. Tiny arteries in the lungs harden, restricting blood flow, which forces the heart’s right ventricle to work harder and harder, eventually exhausting it.
The condition has been linked to emphysema, AIDS, stimulant drugs such as cocaine and the diet drug fen-phen, which was pulled from the market in 1997. But “idiopathic” meant that, in Tillemann-Dick’s case, there was no known cause.
“Stage 4” meant her disease was quite advanced. The lower right chamber of Tillemann-Dick’s heart was 31/2 times larger than normal. The average life expectancy for people with advanced forms of the disease is two to five years. The American Lung Association estimates that one in 100,000 to 1 million people have idiopathic pulmonary hypertension. It is most common among women in their mid-30s.
Tillemann-Dick saw specialist after specialist, and all of them delivered bad news: She could never have children. She should never live in Denver because the Mile High City’s elevation would aggravate her condition. And she would never be an opera singer, which required too much lung power.
To that, Tillemann-Dick had only one reply: “Screw this. I’m going to keep singing.”
‘I’m going to keep singing’
Tillemann-Dick moved to Washington, where her grandparents and several siblings lived. She knew that a lung transplant was a possibility in the future, and turned to Reda Girgis, then the associate medical director of lung transplantation at Johns Hopkins Hospital, for her care.
Girgis prescribed Flolan, a liquid medication delivered 24 hours a day directly to the heart through a tube in her chest. Some people function for years on Flolan, giving Tillemann-Dick a chance at life without a transplant. It wasn’t pretty and it wasn’t a cure, but Flolan provided relief by relaxing the muscles and hardened arteries in her lungs.
Girgis also encouraged Tillemann-Dick not to give up her opera dream. “He understood the difference between being alive and living,” she says.