Update Jan. 18: the video has just been released – see it at the bottom of this post.
TEDMED is a truly extraordinary conference in San Diego, a fall sibling of TED talks focused on medicine. TED talks are just 18 minutes long, chosen and designed to blow your mind. They don’t all hit that level, but many do.
The conference is this Tuesday through Friday. Robert Wood Johnson Foundation’s Pioneer Portfolio invited two founders of the Society for Participatory Medicine to serve as analysts in the audience: Susannah Fox and me. (Years ago RWJF sponsored “Doc Tom” Ferguson in writing our cornerstone document, the e-Patient White Paper at top right of this site.)
True to form, the opening session was a mind-blower. 26 year old Charity Tillemann-Dick stepped out on stage and belted out a soprano aria. I thought that was it – an opening song – but then she said, “One year ago today, I awoke from a thirty day coma after receiving a double lung transplant.”
Yfrog.com photo by Richard Banfield, @FreshTilledSoil
She took us on an incredible, emotional tour of her disease – idiopathic pulmonary hypertension, where the blood vessels in the lung lose elasticity, so the right side of the heart becomes enlarged. It can be fatal. It was worsened by her family living in high-altitude Denver.
Her story was partially about the medical miracle of her eventual lung transplant (first performed in 1983), with the extra miracle of her vocal mechanism surviving superbly. But another layer resonated deeply with me: to her it wasn’t just about the medicine – she wanted to sing. She felt that she must sing – it’s who she is.
And so, when her first doctor said she had to give up singing (“It will kill you”), she said no, and sought other options.
She moved to Baltimore to work with Johns Hopkins physicians, and chose Flolan. It’s not curative – it only reduces symptoms – and it has serious side effects. Worse, for a performer, it’s a continuous 24/7 infusion, with a 4.5 pound pump. It had to be strapped to her body, even under operatic costumes.
With it, she sang. In the US, Vienna, Israel.
Ultimately, though, she needed a transplant, and got it. It can damage vocal cords, and some patients don’t even survive. Her surgery was rushed – no time to bring her mother to town, to perhaps say goodbye. It was not an easy case – coma ensued – and she described awakening to her mother’s face. She couldn’t talk, couldn’t do anything yet, but she was alive.
When she closed last night with “I Could Have Danced All Night,” my eyes flooded with tears and the crowd rose to its feet.
Oh, the joy of being alive – and having the life we want.
Charity is an empowered, engaged e-patient. What do you want in your life? Who should decide which options you’re told about, and which you choose?
Writing this, I googled pulmonary hypertension and it took me to the Google Health page, where it says: “Your doctor will decide which medicine is best for you.”
Well, bite me: like Charity, I will decide which medicine’s best for me, based on our chosen experts’ advice. It’s my life, it’s Charity’s life. Inform us about our options, and work with us to decide. That’s participatory medicine.
Update 1/18/2011: TEDMED has just released the video of Charity’s talk: