'Moonface': Love, marriage and organ donation

'Moonface': Love, marriage and organ donation
By Mary Brophy Marcus, USA TODAY Updated Jan 30, 2011 6:11 PM | | 0

WASHINGTON – Chris Doyle gently peels a banana and gives it to his 2-year-old daughter, Nico. His wife, Angela Balcita, gathers up their belongings from the teahouse tabletop, and they bundle up, ready to head down the block to an art gallery.

They look like any other hip little family in this artsy pocket of Washington that locals call Dupont Circle he with his stubble and baggy pants, she with a fitted jacket and skinny jeans, Nico dressed in a miniature scarlet peacoat.
But Doyle and Balcita have a history that reads more like a retired couple's. Balcita, 36, was diagnosed with a kidney disease called glomerulonephritis a few months into her freshman year of college, and by the time she met Doyle during her junior year, she'd had her first transplant with a kidney donated by her older brother.
"I've gone through at 36 what a lot of people don't experience until they are 70," Balcita says. She ticks off the "old woman" problems she has grappled with: high blood pressure, gout, three kidney transplants.
Balcita's autobiography, Moonface (Harper Perennial, 240 pp., $13.99), hits bookstores Tuesday. It weaves the tale of her medical travails with her enduring 14-year romance with Doyle, who donated one of his kidneys to her in 2003 when her first transplant gave out. As the couple wind their way through different towns, jobs and school, eventually landing in their current home in Baltimore, Balcita paints a picture of their commitment and empathy for each other that is sweet and compelling enough to keep readers engrossed into the wee hours.
Dialysis vs. transplant
According to the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, 17,513 kidney transplants were performed in 2007.
When Balcita was diagnosed with kidney disease, she was only 17, which would put her in the adolescent category, says Milan Kinkhabwala, chief of the division of transplantation at Montefiore Medical Center and Albert Einstein College of Medicine in New York. He has no direct knowledge of Balcita's case.
Sometimes kidney problems in young adults can occur because of anatomical problems, but they also can come from an autoimmune problem, as was the case with Balcita. Some young people have high blood pressure that leads to kidney failure.
Unfortunately, the kidney doesn't regenerate like the liver, so when it fails, a patient has several choices, Kinkhabwala says. The patient can go on dialysis, and although it's lifesaving and a good alternative for some who aren't eligible for an organ transplant, it is a time-consuming and tiring process.
It requires a patient to have a port implanted in the body where tubes can be hooked up to a vein. The tubes run to a machine that cleans the waste from the blood and then returns the clean blood back to the body.
Many young adults opt for a kidney transplant, either from a deceased donor or a living match, Kinkhabwala says.
"Transplantation is a good solution for young people," he says, because dialysis sessions, which typically involve three-hour stints three times a week, can be disruptive to young lives, stealing time from school and social life. It can make them feel alienated, not normal, he says.
Readers looking for a good medical drama won't find it in Balcita's book, though. Yes, she shares details of her ordeals with dialysis and episodes of illness, including a throw-up scene in what was to be their Hawaiian "paradise" apartment, a plan cut short by health problems. There are mentions of fatigue and pain, but she doesn't wallow in long descriptions of symptoms and scans and surgeries.
Instead, she shares her feelings of sadness and guilt when witnessing both her brother's and Doyle's post-surgery pain Doyle was still her boyfriend at the time and the devastation and added guilt she harbored when she overheard Doyle admitting to a surgeon after surgery some momentary regrets about the donation.
She also talks about missing simple youthful rites of passage: how a boy she had a crush on early in college was nabbed by a good friend while she was recuperating from her first transplant; the summer backyard barbecues she missed with graduate school friends while she and Doyle had their operations; the inability to simply fly off to a remote island for fear of having no medical help nearby.
Everything is disrupted
Young people who have kidney failure face many challenges, says Mara Hersh-Rifkin, a clinical social worker for kidney and pancreas transplant patients at Ronald Reagan UCLA Medical Center. Body image and self-esteem waver normally in adolescents and young adulthood. Add dialysis or a transplant and all the accompanying medical tests, medications and scarring, and those doubts can be magnified.
"With kidney failure, all the normal challenges a young person goes through are interrupted," she says. "The body isn't getting rid of fluids, so it can swell, toxin buildup can affect skin coloring, the menstrual cycle can stop, and there's profound fatigue. It disrupts everything, normal development."
Sex life can be affected, too, Hersh-Rifkin says the person may struggle with scars or simply be too weary to feel desire. "I've seen devoted partners really challenged," she says.
An offer over onions
Midway through Balcita's story comes the pivotal scene when Doyle offers his kidney. Considering this is a romance, Balcita says, it's ironic that it occurred one night while she was chopping onions in their apartment kitchen in Iowa when she was feeling worn out by her three-times-a-week, three-hour dialysis sessions because the kidney from her brother was giving out. Doyle came in and leaned on the counter and threw it out there: "I'll give you mine."
His gesture moved her.
"My big feeling was like we were transcending something magical we were being united. I saw it as very emotional and spiritual, this gift."
But to him, she says, it was the pragmatic thing to do.
Doyle says: "When I offered my kidney, it just made sense to me. I was there. I was young and healthy."
"That's the funny thing about Chris," Balcita says. "It's never been romantic, not the donation of the kidney, not the proposing. But the whole story is kind of romantic to me."
In her book, Balcita returns repeatedly to the couple's finest coping skill: humor. Her now-husband has an endearingly optimistic habit of re-guiding her anxious thoughts during difficult moments toward more productive imaginings of their bright future together.
For instance, there's the scene that explains the book's title.
Balcita relates how, shortly after meeting Doyle in college, she cringed when he came upon one of her medicine bottles in a kitchen cabinet.
She initially tried to minimize the details of her condition from him. He casually read the potential side effects of the prednisone taken after kidney transplant to help prevent rejection including acne, hair growth and a "moon-face" complexion.
"Moonface that almost sounds pretty, huh?" he said. Thus the affectionate term or some variation on it, like "Moony," slips into their conversation here and there.
The ending is bittersweet.
Before the birth of their daughter, Balcita's body begins rejecting Doyle's kidney.
Nico came early, at 29 weeks, weighing only 2 pounds, and Balcita spent her baby's first year of life back on dialysis before a close friend from graduate school in Iowa offered her kidney for a third transplant.
Now, with Nico turning 3 in April and the couple's fifth wedding anniversary in May, they look back on their experiences without regret, both say.
Happy in the moment
Is Doyle sad his kidney didn't last?
"I'm really glad I did it. I was very disappointed in my kidney. But she had it for almost five years, and I like the fact that it was able to bring Nico into the world."
And yes, Balcita says, she calculates in her head that when Nico is 12 and the kidney is a decade old, she worries about what will happen.
"It keeps me up at night sometimes. My husband says, 'Why do you go there? She needs you now to be here enjoy being in the moment,' " she says.
And Balcita agrees.
"Are you happy?" Nico likes to ask her mom in her little birdlike voice.
Balcita swings Nico up into her slender arms, and the two turn to look at the vibrant hues of a Renoir painting hanging a breath away on the museum wall. The figures in the picture are laughing and drinking and eating enjoying life.
Not unlike the Balcita-Doyle clan these days.
Yes, Balcita says: "I'm happy."

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