"Every day I wake up worrying," she says. "What if the interferon isn't working? What if in four or five months I need a new liver?
"It's frustrating. All of your life, you grow up thinking that you can go to a doctor and he'll fix you like a mechanic fixes a car. But with this, there's so little they can do."
She strains to pick up Todd. "But if this is what I've got to do to stay alive...I'll take it."
Everson has heard all the complaints about the high cost of liver transplants. He counters with the high cost of caring for patients in the end stages of liver disease.
One man, a young father, received a transplant that cost about $155,000, including pre- and post-operative care. The man will have to continue receiving immune suppression drugs, which also have a cost, but he was out of the hospital in 26 days and is now alive, with his family, working.
Another man, who had no insurance coverage and didn't qualify for Medicaid, did not have a transplant; at the last minute, his liver showed signs of recovery. In the meantime, however, his kidneys and lungs had shut down. His hospital bill was $455,000, Everson says, and he is still in a massive rehabilitation program six months later.
Three more patients paid the ultimate price: They died because no donor livers were available. All three were young; one man was just twenty.
"You could go home tonight and pick up a viral infection and have liver failure," Everson says. "Then what's going to happen? Are you going to have to fight with your insurance company because of the perceived high cost of transplants?
"For all the criticism, the use of technology at the right time is actually more cost-effective. And these are people we're talking about."
The hardest thing for her to accept, Reilly says, is that not everyone will respond to drug treatments.
Mark, for example. The first test didn't help him. Now he's joining a second study, one that will use even heavier doses of interferon.
"It's my only hope," he says. Another biopsy, this one done just two days before Christmas, indicated his fibrosis is more advanced.
"It's getting pretty scary," he says. "It's like having cancer. Something is in my body, destroying my body, at a rapid rate."
What's confusing is that he feels perfectly healthy. He skis and works out daily. Sometimes he gets a little tired, although it's nothing an hour-long nap won't cure.
"But I'm 28, and my life expectancy has been cut in half," he says. Thoughts like that can send him veering wildly between black funks and live-for-the-moment mania. "Just ask my girlfriend," he adds. "She has really put up with a lot."
He doesn't often tell people about his disease, in part because he now works in a health-related field, in part for social reasons. And he asks that his real name not appear in this story.
"I don't want to be labeled as weak or have people freaking out because they're worried they might catch it," he says. "I'm real careful, especially about anyone coming into contact with my blood."
He's quiet for a moment, reflective, then says, "I made a dumb mistake. Now I'm paying for it."
part 2 of 2
