Faces of Liver Disease
Sharing your experience can provide hope and comfort to others in the liver community.
I hiked the Grand Canyon at age 13, weeks after being diagnosed and hospitalized for ulcerative colitis, an inflammatory bowel disease. My backpack weighed almost as much as I did but like all teenagers, I was determined neither a heavy backpack nor some health problem would slow me down.
That journey was one of many I have made through my life. After some initial rough patches, my health condition quieted on its own until I started college. I went to college at Harvard, but there my health problems emerged again and by the time of graduation, I was on the verge of liver failure.
Determined as ever, my next journey took me to law school at Georgetown University Law Center. I loved studying law, but was really struggling with my liver condition, now diagnosed as primary schlerosing cholangitis (PSC). Between my first and second years of law school, my condition became acute and it was clear I needed a liver transplant. I literally had only about 7 days for a new liver to be found as my situation was so dire. Luckily an organ was found and on September 29, 1994 I started my journey as a liver transplant survivor.
I recovered (missing only one semester of law school) and graduated. I became a member of the Virginia Bar and started my professional journey as a child welfare attorney in the U.S. Department of Justice, Criminal Division, Child Exploitation and Obscenity Section specializing in applying law to the online environment and helping to capture online pedophiles.
As satisfying as that job was, I knew there was another journey I needed to take. I had experienced a frontline view of the healthcare system – issues with insurance companies, inadequacy of patient materials, doctor-patient dynamics (good and bad), the role of nurses, medication error reduction, infection control, medication adherence, pharmaceutical innovation – and I felt I needed to use my voice and experience to make the journey better for others.
I left my law career and became a patient affairs specialist for the United Network for Organ Sharing (UNOS) at a time when there was great turmoil about who and how to run the transplant system. From there I moved to rebuild the healthcare practice at Hill and Knowlton. It was PR boot camp and the journey prepared me for the launch of my own company, Cryer Health. Here I focused on work that was diverse but always with the patient at the centerpiece.
So how is my health today? I always answer that question with a simple, “it is good.” But I know liver disease patients and transplant survivors are complicated. We need to be the general contractor of our own health condition, be every vigilant to problems, faithful to eating right and exercising. And even all of that care may not be enough to avoid future problems.