The Law of Bound Hearts by Anne Leclaire Page A

trips, even insisting they brush their teeth with bottled water, no matter what reassurances the hotel gave. She had always been so careful of everything. She had tried to do everything right.
    â€œThere are three ways we get diseases,” Carlotta said. “Bad habits, bad genes, and bad luck. With FSGS it’s purely a case of bad luck.”
    All that care and it came down to luck.
    â€œWhat’s the long-term prognosis?” Richard asked.
    â€œFSGS is chronic, not acute.”
    Hope warmed Libby’s chest. “Acute” sounded serious, the word itself sharp as a knife. “Chronic” sounded like something she could deal with. Something pesky like a sinus infection or strep throat, something cured with a double course of antibiotics, but certainly not anything life-threatening. Not cancer.
    â€œWhich means?” Richard said.
    Carlotta was straightforward. “Which means we can’t reverse it. There are treatments, but there is no cure.”
    Hope cooled and fell away. She had it wrong. “Acute,” the sharp-edged word, was the more benign. “Chronic” was the one she had to fear. Later, she realized that was the moment everything changed. The Before-and-After moment. The plane-crash moment. The dividing line between the ordinary—the blessedly ordinary life in which all the minute and unconscious workings of the body flexed and pulsed and flowed on—and the perilous extraordinary, when nothing could be taken for granted ever again.
    Richard reached for her hand, squeezed it, but she was unable to respond. She felt brittle, betrayed.
    â€œWhat do we do?” he asked.
    â€œWe start with medications—drugs to get your numbers lowered.” Carlotta spoke at length about chemistry levels and numbers— creatinine, BUN, blood pressure, protein—and what they signified. Libby’s hand lay lifeless in Richard’s.
    â€œLong-term?” he said.
    â€œLong-term we are looking at more dramatic treatments. Once we reach end-stage renal disease, which is without doubt where we are heading, we’ll be looking at treatments to replace lost kidney function. Almost certainly hemodialysis.”
    â€œDialysis?” Libby said. Just the thought made her nauseous. Hooked up to machines for hours. She couldn’t do it.
    â€œHow soon?” Richard asked.
    â€œHard to say. Anywhere from a year to five.” She turned to Libby. “A lot depends on how you respond to medication. But let’s not get ahead of ourselves. That’s a way off.”
    She went over the treatment plan. Control the swelling and high blood pressure with prednisone, minimal dosage. Control the edema with diuretics. Careful diet. No salt. Less protein. Erythropoietin injections to stimulate red blood cell production.
    We’ll beat this, Richard said to her as they drove home. He went back to the computer, checked Web sites, printed out pages of information. He located numbers for support groups and brought home books that she couldn’t bring herself to read. She still wouldn’t allow him to tell the twins. “Why worry them needlessly,” she said.
    The year passed in a seesaw of hope and discouragement, all predicated on test results, the creatinine numbers and protein levels that rose and fell. Finally, over spring break, she’d told the twins. A pesky health problem, she said, making it sound like a minor imbalance, something easily cured with drugs. She didn’t want them worried.
    At her last appointment—she’d assumed it would be a routine checking of her numbers—she was stupefied when Carlotta told her she would have to begin dialysis.
    â€œLet me think about it,” Libby said. She was not ready for this.
    â€œIt’s not an option,” Carlotta said. “You’re in end-stage.”
    â€œYou said five years.” Rage overtook her.
    â€œOne to five. No promises.” Carlotta reached for