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.”
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.
So Tillemann-Dick returned to Europe, resuming voice lessons and performing in several operas, taking on the role of Titania in “A Midsummer Night’s Dream,” Gilda in “Rigoletto” and Violetta in “La Traviata.” All the while, she hid her condition by concealing the bulky Flolan pack, about the size of a purse, by strapping it to her upper thigh. “I would stuff it into my girdle before going onstage,” she says.
Tillemann-Dick had been fighting pneumonia, but she flew to Washington for her grandfather’s funeral and to Colorado for her father’s. Within days of arriving in Denver, she began showing signs of “outright heart failure,” she says. The pneumonia, the altitude and the emotional distress took their toll.
“I was coming up on five years,” she says. “The disease was progressing as anticipated.”
Her meds now failing, Tillemann-Dick’s cardiac output — the amount of blood her heart could pump — dropped, leaving her exhausted and out of breath. Her legs were swelling as a result of her poor circulation, and she was suffering from intense nausea. And, of course, her lungs were too feeble to power her voice.
It was now clear, she said, that “keeping my own lungs just wasn’t an option anymore.”
In September 2009, just one day after being listed on the organ transplant registry, Tillemann-Dick flew from Washington to the Cleveland Clinic, where two lungs waited. Her one request as she was wheeled into the operating room: “Save my vocal cords.”
Her vocal cords turned out to be the least of her problems. Tillemann-Dick’s kidneys and liver had been seriously damaged by her illness. She flat-lined twice during the 13-hour surgery as doctors removed her lungs, put two new lungs in and repaired a damaged heart valve, says her surgeon, Kenneth McCurry.
Lung transplants are difficult, says Marie Budev, the medical director of Cleveland Clinic’s lung transplantation program. “They’re the most delicate organ, like tissue paper strung between Christmas lights.” According to the National Heart, Lung, and Blood Institute, about 1,800 lung transplants are performed each year in the United States.
Doctors left Tillemann-Dick’s chest open for about two weeks — a precaution that gave them easy access to her organs in case of complications. Her kidneys and liver began to recover. She remained in a medically induced coma for 34 days.
Her surgeon did not forget Tillemann-Dick’s single request. McCurry knew that if anything would damage her vocal cords, it would be the breathing tube stuck down her throat. The alternative was a tracheostomy, cutting a hole in her throat to put the breathing tube directly into her windpipe.
A throat specialist declined to perform the procedure, afraid that the patient might not survive it. McCurry did it himself, ultimately saving Tillemann-Dick’s voice.
“When I woke up, it didn’t matter that I couldn’t move, that I couldn’t breathe,” says Tillemann-Dick, whose muscles — including those of her diaphragm, which controls breathing — had severely atrophied during the coma. “None of it mattered. I was alive.”
Tillemann-Dick spent three months in the hospital. At her first visit after being released, she hopped onto an exam table and tested out her pipes.
“All the doors in the hallway opened,” Budev recalls. “The other patients wanted to know what was going on. For them, singing equals lung function. Charity was an inspiration.”
Tillemann-Dick says, “My voice was hoarse. But there was something there.”
On average, transplanted lungs last up to five years. But after just a few months, Tillemann-Dick’s were failing. Despite taking anti-rejection drugs, she was succumbing to chronic rejection, a slow deterioration that McCurry describes as the “Achilles’ heel of lung transplantations. It’s one of the most common reasons that patients die.”
In the summer of 2011, Tillemann-Dick’s name was again added to the organ registry. This time, it would take more than a day to find a match.
While she waited, she sang. In September, pumped full of steroids, antibiotics and oxygen from a machine, Tillemann-Dick made her Lincoln Center debut in a concert with the Juilliard Philharmonic and violinist Joshua Bell, among other performers. Tillemann-Dick sang the aria “Sempre Libera” from “La Traviata,” which is “not for the faint of heart or the faint of lung,” she says.
“That night, I did some of the best singing of my entire life. I don’t know if it was the adrenaline or the steroids, but I was tingling all night,” she says.
She ended the aria on a high note — a high E-flat. “When I hit that note, it was a huge relief,” she says. “I thought of everything I’d gone through, and I knew it was a miracle.”
In October, she married Yonatan Doron, who had been by her side throughout her ordeal. She walked down the aisle but was too breathless to stand for her vows. Within weeks, just days before Christmas, Tillemann-Dick returned to the Cleveland Clinic. There was still no match, but she was so sick that doctors knew her only chance at survival was to continue the wait in a hospital.
Tillemann-Dick was put on an advanced form of life support that fully took control from her lungs and heart. To keep up her strength, she pedaled on a mini stationary bike and did arm exercises. Still, as weeks passed, Tillemann-Dick could feel herself sinking. “I was dying,” she says. “It’s a strange emotional experience, hoping for a match but knowing it means tragedy for someone else.”
On Jan. 24, 2012, after more than six months of waiting, she had a match, a 48-year-old Honduran woman who had died of a stroke and was a registered organ donor.
A second transplant is more difficult than a first. There are more antibodies in the bloodstream, and the body is more vulnerable to infection. According to McCurry, scar tissue from the first transplant makes it harder to get the old lungs out.
But in Tillemann-Dick’s case, the second transplant was remarkably smooth. There were no complications and she was discharged after just three weeks. Within a couple of months, she began training her voice again and made her post-op debut in a recital with the Indianapolis Opera; accompanied by a pianist, she sang a selection of arias and show tunes.
“It was not my best singing, but the lungs . . . they fit better,” Tillemann-Dick says. “The first ones were too big. I never felt like I could get a full breath. Singing is much easier now. It sounds better.”
Today, Tillemann-Dick takes 14 different medications, about 20 pills daily, including anti-rejection drugs. They must be taken on a very precise schedule and her husband has cellphone alarms set for each one.
“We’re like an old married couple,” she says. “We have the pills. We’ve had the death scares. We’re 29 and 30 going on 90.”
Tillemann-Dick sings and speaks at events, including an appearance in April at the Kennedy Center, to raise awareness of her disease and to promote organ donation. She takes voice lessons, composes music and travels to singing gigs. She is recording a CD, due out this summer. She loves to cook and play hostess to family and friends. An impeccable dresser, her signature accessory is a necklace that perfectly conceals the tracheostomy scar in the hollow of her throat.
Still, there are signs that she’s not in perfect health. Tillemann-Dick doesn’t shake hands with strangers. Her nieces and nephews hug her legs instead of her neck. Infection would only hasten the inevitable decline of her lungs.
“The reason I’m alive today is because two different people decided to be organ donors,” she says. “I don’t think I would qualify for a third [transplant],” she says, because of internal scarring and other issues that make multiple transplants increasingly complicated.
“You could. You don’t know,” interrupts Doron, quickly grabbing her hand.
“I could,” Tillemann-Dick says in a brief moment of concession. “But I probably won’t.”