EDITORIAL PIECE: PICCPerfect Emily Levy | Co-Founder of Mighty Well
When you’re a newly turned 21-year-old college student, New Year’s Eve is a veritable highlight of the year. It’s a night to dress up, drink champagne and dance with your friends until the sun comes up. However, as the sun rose on the first day of 2015, I was not out dancing. As I lay in bed and scrolled through social media the following morning, swiping through an endless sea of smiling faces, I felt only an overwhelming sadness. My face was not among them because I was two days out from having my first PICC line placed and recovering at my parents’ house. College was hard enough, but add to that a diagnosis of tick borne illness, EBV, Hashimotos, CIDP, and POTS plus a PICC line? For the first time, I felt the full weight of the procedure upon me, and it seemed almost insurmountable. Almost. In the months leading up to the procedure, my worries hadn’t been nearly this great. I had been working with my Lyme-literate nurse practitioner for months, trying to find the right cocktail of antibiotics and supplements to relieve my symptoms. Nothing was working, and so we had arrived at the next step: a PICC line. Of course, on one hand, it was a reminder that I was critically ill. On the other hand, I was excited, because it felt like the next stop on my journey toward healing. After speaking with numerous patients who found success with a PICC line, I felt hopeful. It was during this time that I became fascinated with the inner workings of the device, truly kickstarting my investment into changing the landscape for other patients with vascular access devices. As I learned how to best protect my PICC line, I learned that the best any professional could recommend was a cut-off sock or stockinette. I was a young college student and a member of a scholarship program who often spoke in public settings; I couldn’t accept this.
24 | IQ | INTRAVASCULAR QUARTERLY NEWSLETTER
Thankfully, because of this program, I was encouraged to solve a problem in my own life through social entrepreneurship. I had my idea, a device to protect a PICC line, enabling me to live my life safely, sanitarily and securely, all while maintaining my style. The next step was execution. Holding the prototype for the PICCPerfect in my hands for the first time was an incredible feeling. While I wished so badly that I could have had something like this when my PICC line was placed, I was excited for the next generations of patients who would never have to suffer the cut-off sock. It was such an invigorating feeling to know the only thing left to do was to get it in the hands of patients. Thankfully, I had a college mentor who found the Association for Vascular Access (AVA) and encouraged me to attend a local network meeting. With my PICCPerfect prototype in hand and some light nerves in my stomach, I bought a ticket and showed up. As the only patient present, I was invited to share my story with the room. I soon became acquainted with the network and national organization. Ultimately, this first network meeting led to great amounts of growth, both for myself and for Mighty Well, the adaptive-clothing wear brand I co-founded. Throughout my journey as a patient, AVA has continually enabled me to champion my best treatment options. I fully trusted AVA and its members from the beginning. AVA members are the authority on vascular access, from start to finish. Everything from choosing the right device, to lifestyle, medication management and, ultimately, how the device is eventually removed. AVA helped me advocate to get a port placed. Then with the help of VA specialists, I learned how to access my own port. I cannot overstate how empowering it has been to regain some control of my body, medication and devices. This has been particularly crucial for me throughout CONTINUED ON NEXT PAGE
