(CBS News) Opera singer Charity Tillemann-Dick calls her disease the "reverse Grinch effect."
She has an enlarged heart, and suffers from idiopathic pulmonary hypertension, a condition that doesn't allow oxygen to be properly absorbed, causing the heart to work overtime.
Charity, 27, has had two double-lung transplants. Doctors say she would have died without them.
"CBS This Morning" visited her in February in a hospital room at the Cleveland Clinic, and she was hoping, praying that she might sing again.
And sing, she has, in a remarkable performance, considering one doctor told her singing might *kill* her, and she worried she might never sing again.
Charity stood on stage last month to perform for the first time in public since the second double lung transplant.
When we first met her, she was just recovering from the new lung transplant and in such a fragile state that we had to wear masks to keep the germs at bay.
Before her surgery, she'd been in a medically-induced coma and on advanced life support. The wait for a new set of lungs had been excruciating.
"I'd go to bed at night not sure whether I was going to wake up in the morning," she says.
But finally, an organ donor gave her a new set of lungs. And, with that, life. And, just maybe, her voice.
"Let's be frank: Anytime they're going to stick breathing tubes down your throat - vocal cords are two tiny, very delicate flaps of tissue in your throat ... and they're very easily damaged," Charity says. "And I was always comforted to hear (a doctor) say I'd sing again. But anytime you're dealing with breathing tubes, that prospect is dubious."
This time, we met not at a hospital, but at a hotel, just a few hours before she'd sing - in public - for the first time.
"Obviously, I was in a coma for over a month - I couldn't breathe anymore - I couldn't move my arms when I got out. I could barely move my fingers, let alone my legs. And I couldn't talk. I couldn't do anything, let alone sing."
But she started to practice quietly in her hospital room, singing to herself and the family by her side.
"After re-learning to breathe and to move and to walk, I had to start the process of re-training my muscles to learn how to sing," Charity recalls.
And when she did sing, it was at an Indianapolis conference to encourage organ donation.
Backstage, she said, "For two months out of the hospital - I sound great!"
She called it a "milestone," adding, "I'm very, very grateful to have made it through it."
That night, she gave an even more powerful performance at an Indianapolis opera house.
A small scar was the only sign that her lungs were not the ones she was born with.
"Music is the love of my life and that - it's each of our dreams to - to spend our lives with the people - with the things that we love most," Charity reflected. "And I'm so grateful to be given another opportunity to sing and - and to share. And it brings me more joy than I can express."
"And I express a lot of things (she said with a laugh), "so that's saying something!"
Charity is eager to share her story because she wants people to be aware of the importance of organ donation.
She and her sisters have started a Facebook page for people to share videos on the reasons they are organ donors. You can send a video to firstname.lastname@example.org.