Charity Tillemann-Dick is only 34 years old, and yet she’s experienced more than most will in their lifetime. The classical opera singer has already had an album top the classical music charts, written a memoir, performed with prestigious opera companies around the world, and delivered a TEDMED.
And that’s all before you get to her having three different sets of lungs over the course of her life.
In 2004 she was diagnosed with Pulmonary Arterial Hypertension. The disease caused her heart to swell to three and a half times its normal size and was likely to be fatal without a lung transplant. She became very active with the Pulmonary Hypertension Association (PHA), and was fortunate enough to receive a double lung transplant in 2009.
Doctors warned her that she would never be the singer she once was. What was once a booming instrument had been reduced to “a tiny wisp of a voice,” and doctors warned her that singing the high notes could kill her. Not to be deterred, Tillemann-Dick persisted. She refused to let her medical condition dictate her life.
“Life isn’t really just about avoiding death, is it? It’s about living! Medical conditions don’t negate the human condition,” she said while delivering a speech at TEDMED.
But after a couple of years of living with her new lungs, her health started to deteriorate again. Tillemann-Dick’s body was rejecting the transplant, something she told the Associated Press was “the most devastating thing that’s happened to me.”
Her body became weak and she was unable to sustain herself. Fortunately, a donor match came through at the 11th hour, and Tillemann-Dick had her second double lung transplant in three years. But the outlook was still grim, and after waking up from a 34-day coma, she describes the brutal recovery process she underwent to get her life back.
“All of my muscles had atrophied,” she said. “I couldn’t walk, I couldn’t talk, I couldn’t eat. I couldn’t do anything.”
But she was alive, and she was grateful for the opportunity at another chance at life. Time moved slowly, and the recovery was grueling.
“It was two months before I could breathe on my own. And walking, talking, eating, everything else came after that,” she told AP.
Throughout the recovery process she was overwhelmed with with feelings of appreciation and gratitude. Tilleman-Dick was alive because of an ultimate show of generosity by her donor and their family. Once she had the strength, she penned a letter to the daughter of her donor, thanking her profusely.
She met with Esperanza Tufani, the 24-year-old daughter of her donor, 10 months after the transplant. The two have become wonderful friends since their first meeting, and each describe a kind of kinship they share because of their unique connection.
Tufani describes how she was initially hesitant to donate her mother’s lungs, but is happy she did and feels that she made the right decision. Her friendship with Tillermann-Dick affords her the kind of relationship with her mother that she always wanted to have.
“She doesn’t really realize how much of an impact she’s had on my life,” Tufani told The Associated Press.
On October 24, the two performed a new song written by Tillermann-Dick at a medical summit in Cleveland, Ohio.
The song is titled “American Rainbow,” and is an homage to the immigrant roots of the woman whose generous donation saved her life. “I breathe because of someone who came to this country looking for a better life,” said Tillermann-Dick.
Tufani, who has aspirations of becoming a professional singer, is deeply moved by the opportunity to perform with Tillermann-Dick. In some ways, she feels like she is fulfilling a lifetime dream of singing with her mother.
“I always wanted to have sang with my mom, but I didn’t have that relationship with her,” she said. “Getting to do that through Charity, it’s amazing.”
Tillerman-Dick is currently on tour, and her health is better than ever. After her 2014 debut solo album called “American Grace” reached the top of the classical music charts, she’s been as busy as ever.
Her second transplant has yielded better results than her first, and it appears that the lungs from Tufani’s mother are a much better match. She continues to be an inspiration, and advocate for the Pulmonary Hypertension Association.