E KNEW THAT MY FATHER WAS ILL when my parents dropped me off at Tufts for freshman orientation in September 1993. What we didn’t know was what he had, or how bad it was soon going to become. His legs were a little swollen, and not long before bringing me to Tufts, he’d undergone an emergency procedure in which four quarts of pure lymphatic fluid had been pulled out of his lungs. The fluid, the color of lemon chiffon and the consistency of a milkshake, had been keeping him from breathing. Neither my father, himself a physician, nor anyone else in the hospital room had had any idea how the stuff had gotten into his lungs to begin with.
After a bit of unpacking, my parents pulled away and I began my first year of college. But it wasn’t long before they were back. They spent a lot of time in Boston, among other places, over the next year as they sought answers to the mysterious illness that was plaguing my father. They lived in Columbus, Ohio, my hometown, but my dad had grown up in western Massachusetts. When he was twelve, in 1959, he had undergone one of the first open-heart surgeries at Boston Children’s Hospital. Could his current medical condition somehow be linked to that childhood procedure?
Try as they might, the experts on my dad’s ever-expanding medical team could provide no answers. The one thing that was clear was that my father had a severe lymphatic leak with no clear point of origin. The fluid leaking out of him was protein rich, and protein that leaks doesn’t get digested. Which meant that, on top of making him uncomfortable, the illness was starving him.