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:
I am writing a personal story on my blog all about finding a participatory solution and how hard it can be. I mean really even those so called “top doctors” often have their priorities skewed by the research they want to achieve as opposed to effective constructive problem solving. If it takes too long your marginalized. And, you are regulated into a corner. It is critically important to find a doctor that wants to be a participant not a finger wagging patriarch. enough said.
Hey, Dave!
I’ve been following yours and Susannah’s tweets. Sounds like it’s not just huge in size, but also in intent.
I’m with you. If any doc feels like trying to TELL me what I WILL DO, s/he won’t have to worry about trying to explain why. I’ll be gone before they complete their first sentence.
Now, if they would like to SUGGEST why s/he believes a certain course of action has the best chance of success, I’ll listen. And then ask questions. Then schedule a follow-up appointment far enough off that I could thoroughly investigate my options, and maybe get a second opinion. And, as always, find out what Medicare will cover.
Annie
P.S.(Any word on WikiMed there?)
Dave,
I loved it when you said: ”
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.
This is why “Health 2.0” needs to be all about re-envisioning the healing relationship and not about the shiny tools (means to the end) that are contributory to that end goal. Millennial patients will demand a new type of physician – an expert who serves an advisory role.
Keep plugging away on living the life you want!
Dave, what an amazing story! Charity was indeed blessed with a beautiful voice (I could hear her singing praises from your write-up), a double lung transplant, and the autonomy that comes from having made her decision, for her life, for her future. Thanks for sharing.
Here’s a sweet add-on: I met Charity and got her business card – her middle name (for real) is Sunshine.
Charity Sunshine Tillemann-Dick. The name alone is worth staying alive for. :–)
This was cross-posted on KevinMD. Commenter Beth Haynes MD added a YouTube of Charity singing.
Charity, Its been amazing knowing you through these years. Its been your faith and amazing happy spirit thats kept you alive, because your very special and your inner and outer light attracts others to you. Your amazing story of your stay in Cleveland getting new lungs and going through troubed times will be a help to others with their struggles in health and other areas in life. Your mother Annette like most mothers would, never left your sight. And knowing Anette shes a super person and she made sure you were going to leave that hospital alive, Charity I’m amazed with the new lungs you can still sing very well . Its certainly an act of God. I’m working on a painting of the end days and would like to add you in their. Christ will be the center of interest , yet many people will be around him with alot of love. And of course you have alot of love for others like Christ does. You will probably outlive us all. Sing girl go for it. God created birds to sing , and you flow with your beautiful voice as the echo through the mountains and valley’s. When i heard you sing in soprano in this it gave me goose bumps your freind Claudia
Claudia, Charity has a beautiful voice. I have never heard anything so very beautiful. She gives people with life threatening diseases a reason to live and go for the fullest. Love, Lynne