Patients will choose their medicine, based on their doctor’s advice

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.

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.”

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 resonately 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.”

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.

Dave deBronkart, also known as e-Patient Dave, blogs at and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

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  • Finn

    Great post. Reminds me of Lance Armstrong shopping around for a testicular cancer treatment that wouldn’t wreck his lungs and destroy his career.

  • e-Patient Dave

    Thanks for the cross-post, Kevin.

    One tiny note, per our tweets: in the original post, I started the pivotal paragraph “Like Charity, I will decide…” by saying “Well, bite me.” :–)

    And I kinda mean it. It’s arrogant for HC professionals to say my doctor will decide for me. (Mine don’t, btw.) What am I, chopped liver? (Maybe so, after some procedures.)

    BUT, my colleague at the Society for Participatory Medicine John Grohol points out that Google’s only displaying ADAM’s licensed content. I think that’s a problem; for Google to display that, as Google Health, misguides people.

    Funny: physicians often warn patients not to trust everything they see on Google. This is a great example! :–)

    Seriously – if patients aren’t going to be responsible for their care decisions, they have no right to complain afterward. And IMO docs should share the decision, or they should be held responsible for how it turns out.

    I just think it makes so much more sense to have it all be participatory. A partnership, not adversarial in either direction.

    And I think ADAM should change its wording, and/or Google should stop displaying that.

  • Beth Haynes, MD

    Want to hear Charity sing? Go here:

  • DF

    Amazing. like the 2 girls on American Idol? with CF. They were tear jerkers every time I heard their story and their singing.

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