Day 1 of TEDMED: Charity Tillemann-Dick, e-patient


Notes from a post by @epatientdave – a powerful story that shows the value and potential of an engaged, empowered e-patient:
…She (Charity) 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.


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