By Ana Hebra Flaster
She still pees the same. Everyone asks Libby about this when they hear she donated one of her healthy kidneys in order to improve her dying husband’s odds of receiving one himself. Libby tries to reassure them. She wants the world to know: if your loved one ever faces a years-long wait on an organ donation list, you can speed things along by becoming a donor. “They’re amazed when I tell them: I don’t need to pee any more or any less than before, and the whole thing was easier than recovering from labor.”
But of course, “the whole thing” was never easy, not by a long shot. The “whole thing” was a six-year slog through a medical system that at times seemed to be killing her husband in order to save him. In the first four years of treatments, Libby watched her husband go from a burly 260 pound 40 year-old man to a 125 pound dying one, even though he never once saw himself that way.
Skip’s problems began with an odd ache in his feet, which a podiatrist diagnosed in 2002 as plantar fasciitis. Orthotics didn’t help, and after a year a new problem appeared: pin prick sized spots on his legs that sometimes grew to the size of quarters, but always hurt, “like someone stabbing him with a fork,” recalls Libby. A dermatologist treated him for vasculitis, but another year went by and things only got worse. By 2004, a new dermatologist ran tests that detected protein in Skip’s urine. His kidneys were in trouble.
Enter a nephrologist, a hematologist, a cardiologist—all strategizing as the still-unknown illness progressed from major organ to major organ. After three courses of chemotherapy and several weekly courses of plasma pharesis, Skip’s kidneys finally failed. He went on dialysis, continued with plasma pharesis and then a stem cell transplant. Everything aimed at keeping him alive long enough and then well enough to have a shot at a new kidney.
Each doctor’s visit, diagnosis, medicine and dose, side effect and improvement appears in Libby’s neat handwriting in the notebook she shows me as we talk about those years. She points to one page where she wrote the name of one of the chemo drugs Skip took. “That was a bad—a really, really bad drug,” Libby says, and her blue eyes turn away from mine for a moment. She stares into the distance and shakes her head. The notebook is still open; her finger starts to tap hard over the name of the bad, bad drug that almost killed Skip.
We’re outside a Lexington Starbucks on a clear spring afternoon, a soft breeze moves through Libby’s blonde hair as she picks up her story again. I’m struck by the strength that emanates from her soft voice as she calmly describes the unimaginable pain of those years, of planning her husband’s eulogy, of wondering how she’d find a suit that would fit his skeletal frame for the burial, of agreeing to Skip’s request for the black Ford F150 pickup he’d been eyeing, thinking to herself, “how can I deny this man anything.” She almost whispers the story, as if telling a secret from a past life.
The family’s many friends helped, of course, with lasagna dinners, interpreting medical-ese at appointments, driving Skip to and from dialysis sessions—but it’s clear that Libby shouldered most of the burden in those years. She drove Skip in the early mornings to his dialysis appointments, went to her day job, stopped by the hospital in the afternoon to see Skip, went to her second job and came home at ten to tend to the couple’s three sons, laundry, lunches for the next day, maybe a late-night stint with homework.
Mostly, though, Libby was Skip’s unflappable wingman. She shrugs off my comment about her strength. “Oh, no. Skip was my rock. He never doubted he’d recover. He saved me.” But it was Libby who asked the toughest questions at Skip’s appointments, so much so that one of them referred to her as a “bulldog.” He meant it to sting, and it did, but Libby had bigger problems to solve. Sometimes she needed to search for elusive doctors in the hospital cafeteria till she found them, took them to Skip’s bedside, and got him the attention he needed. She cajoled the doctors into signing off on a stem cell transplant that some were reluctant to approve on their own, knowing Skip’s survival odds were dismal. Her argument to them: He’s going to die anyway; this is his only chance. If Dr. X, signs off, would you? On one particularly bleak day, when Skip was in critical condition in an upstairs ward, she waited by the hospital’s main entrance, knowing the doctor they’d been waiting for all day was likely to use it at the end of his day. When she saw him coming, she stood up. “Where do you think you’re going?” she asked. She reminded him about all her calls and messages, of how sick her husband was, and, slowly, the doctor turned around and changed course. He examined Skip, approved more treatments then left for the day. The next morning he took himself off the case. “At least Skip got what he needed from him. That’s all I cared about,” Libby says.
By late 2007, Skip was healthy enough to go on the kidney transplant list although the wait could be years; one family member was a match but was later medically disqualified. Then, at a support group meeting, Libby heard a wife describe how she’d successfully donated a kidney to “a pool” and it sped up her husband’s wait on the transplant list. Libby immediately began working with NEPKE, New England Paired Kidney Exchange. In May 2008 Libby donated one of her healthy kidneys. A month later, on Father’s Day, the hospital called with the news: they had a donor match for Skip.
The jubilation in the house erupted in tears and whoops of joy. Their oldest son heard the shouts and ran into the house, sure something was wrong. When Libby told him the news, he fell to his knees and wept. Ironically, Skip was so focused on a T.V. golf broadcast that he asked if the hospital needed him to go right away. “YES,” Libby cried. “NOW!”
Libby’s smile lights up the air around her as she remembers that final miracle in the story. Then she tells me about the chair, a green Lazy Boy Barcalounger that Skip practically lived in all those years of his illness. “Jimmy had to write an essay in school—sophomore year, I think. He wrote about the first time he fell in love. Guess what he wrote about? How much he loved that green chair because it held and comforted his father when he was sick.”
That’s one kind of love, of a caring son for an ailing father. Another is a love like Libby’s. A love that never stopped fighting for a solution and, in this case, found a way to save a life.
Ana Hebra Flaster is a freelance writer and Lexington resident. Ana’s work has been featured on NPR and the Boston Globe.