"Fuck my liver ... I need meds" Belinda said when she awoke one March morning amid her first fulminant. She'd been told her meds were taken away to preserve liver function. She hadn't heard, until that moment, that she needed a transplant. "She wants to live, but not without 'pain meds'" the psychiatrist wrote. It's not that Belinda deliberately overdosed - she hadn't. It wasn't that she was suicidal - she wasn't. Her biggest issue, as the shrink saw it, was the mental disconnect between her painkillers and her sudden liver failure. "She is an extremely poor candidate [for transplant]" the attending psych stated. "NO psychosocial support to help her gain insight." It's unclear how, other than speaking with Belinda, doctors decided that. Doctors didn't ask Sharon or Jonathan about whether and how they could help Belinda prepare or recover from surgery.
The hospital did send a female Christian chaplain to Belinda's beside. The chaplain, who Belinda knew from prior visits, tried to persuade Belinda to try pain reduction techniques that didn't involve medication - such as guided imagery. Belinda wasn't interested. Nor was she interested in a prayer for pain relief. "States that she would rather die than continue in her current state of pain," the chaplain wrote. So no transplant referral for Belinda. Sharon, who'd flown from North Carolina at the request of a Cedar's social worker, hadn't heard that. It's uncertain what Belinda knew about her transplant list status.
By March 11, Belinda's liver enzymes were decreasing. She'd received an antidote, Mucomyst, and it seemed to work. "[S]o no plans for surgery at all at this time," Cedars' charts noted.
At first Sharon was relieved when Belinda was released from the hospital. Her little girl would be OK, she thought. Or would she? Sharon wondered why her daughter had lost nearly 100 pounds. Whether it was the vomiting or failure to eat enough, both, or something else, Belinda shrunk from medically obese to slender in months. Belinda put a positive spin on it. "On the downside, My liver failed, and I almost died," she wrote on MySpace. "On the upside - I lost a whole person in weight, and I've never felt better."
"Patient likely out of acute danger zone," Cedars noted upon Belinda's release. "However, continued careful monitoring is required." Belinda didn't get any followup monitoring. The doctor noted, "We are unable to follow this patient in our clinics because she has no insurance." No insurance. Another significant if not decisive factor in keeping Belinda out of the transplant registry.
A liver transplant, including, testing, hospitalization, surgery, and followup, costs at least $500,000, according to UNOS. Before a patient can be placed in the registry, she must prove she can pay for the surgery. Belinda barely ate and paid rent. She already owed lots of money to lots of hospitals. She didn't have half-million-dollars sitting around in a rainy day transplant fund. Maybe the hospital was onto something when it sent the chaplain by. Unlike transplants, prayers are free.
About 46 million people in the United States are uninsured, according to the American Medical Association. In 2006, when Belinda needed a transplant, that number was even higher, about 47 million. Belinda was uninsured for most of 2006. She was uninsured for all of 2005, 2004, 2003, 2002, 2001, 2000, 1999 and part of 1998. She was uninsured from ages 19 to 27 - most of her adult life.
Belinda spent years seeking insurance. She had several jobs in her 20s but none offered insurance. The companies were small, or closed down, or did not offer full- time work. A jewelry wholesaler held promise and Belinda loved the work - but the boss's wife fired her. She tried college again, but no university would take her and her community college offered no health coverage. "From then on," Sharon said, "She just kept getting sicker."