Set Me Free: The power of technology on the patient experience

Jessica Melore jessicamelore@yahoo.com

Abstract

When I was a 16-year-old senior in high school, I had a near fatal heart attack and leg amputation, and later, became a heart transplant recipient and three-time cancer survivor. As a health care professional, a national patient spokesperson, and an advocate, I’ve seen both sides of the patient experience. I’ve found one of the hardest aspects of being a patient is the loss of control. Your schedule, your treatment regimen, and your life as you knew it is no longer your own, or at least how it feels at first. Having access to technology transformed my experience by connecting me with others and enabling me to define life on my own terms.

I learned this again when I was invited to share my story at the 2016 Stanford Medicine X conference, and was struck with cancer a third time. Though chemotherapy prevented me from attending and presenting, technology gave me yet another powerful opportunity to take others through my cancer journey on social media. Now that I am finished with treatment and have a great prognosis, I would love to have the opportunity to present.

There were three forms of technology that had a major impact on my experience as an ePatient. The Heartmate LVAD (Left Ventricular Assist Device), my prosthetic leg, and the internet. The LVAD not only saved my life; it gave me back my life while I waited in hope for a heart transplant. It pumped the left side of my heart-which had been destroyed from the heart attack. Unlike many patients on the transplant waiting list who spent months or years on the cardiac floor of the hospital, I was able to resume the semi-normal life of a teenage girl.

Days after my heart attack, my left leg was amputated. Thanks to technology, my prosthetic leg enabled me to sing on top of a desk in my school musical and dance the night away as the prom queen. My leg has since carried me all over the world, from bungee swings to the Great Wall of China.

Through the internet, I connected with fellow incoming freshmen at Princeton who followed my transplant journey. My heart donor’s best friend found me through Facebook. The internet saved my job and my sanity when I worked from my hospital bed three weeks out of every month during cancer treatments. And I became a national blogger for sites like I Had Cancer and LLS.

Technology can offer mobility and freedom that allows ePatients like me to reclaim their lives. It inspires patients by giving us access to others’ stories and helps us realize we’re not alone. It allows us to stay engaged within our own networks even when we can’t be physically present, and to make valuable connections through communities of support that can extend across the world. I would love the opportunity to share my story with the Stanford X community in hopes that it will show other patients how embracing technology can enhance their own lives, and inspire health professionals about ways that they can help facilitate access to technology and empower their own patients in this way. 
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