In February 2007, Garet Hil’s 10-year-old daughter came down with what looked like the flu: a persistent fever, vomiting, dizziness, fainting. On her third trip to the pediatrician, the doctor told the family to take her to the emergency room. There, a blood test delivered frightening news: her kidneys had shut down.
“They put us in an ambulance and rushed her to a nearby hospital that had a pediatric nephrology unit, which put her on dialysis immediately,” recalls Hil. “That saved her life.”
Unfortunately, dialysis also threatened to take over her life. As the long-term treatment for permanent kidney failure, dialysis is a good-news/ bad-news technology. It is life-preserving, but often debilitating and demoralizing—akin to saving polio patients with iron lungs, or treating cancer with never-ending chemotherapy. Dialysis patients are prone to anemia, bloating and weight gain, low blood pressure, and infection from their catheters. They gradually lose the ability to urinate and can drink very little (not very little alcohol—very little anything). Many children on dialysis suffer from stunted growth. Dialysis does not make patients well. It simply postpones their deaths.
“Yes, it keeps us alive, but this is not what living should be like,” wrote Bill “Epoman” Halcomb, the founder of the patient community at IHateDialysis.com. (Halcomb died in March 2007, after 13 years on dialysis. He was 34.) Dialysis patients typically spend three or four hours hooked up to a machine, three days a week, making work, school, or travel extremely difficult. “Tuesday, Thursday, and Saturdays I show up around 4:15 in the morning, and I’m on the machine by about 4:30 or so. It’s about 8:00 or 8:15 when I’m out of there,” Henry David, a 60-year-old Los Angeles business owner, explained to me in February. Why start well before dawn? “It’s my choice, because I want to have something of a life.”