One dad’s dilemma

Posted June 19, 2009, at 7:29 p.m.

NEWPORT, Maine — Forget the novelty T-shirt, the coffee mug, the fuzzy slippers. There’s only one thing Frank Fascione really needs this year for Father’s Day: a new kidney.

The 31-year-old husband and father of two young children suffers from end-stage renal disease caused by chronic scarring and congestion in his kidneys. The damage is related to his diagnosis in 2005 of lupus, an autoimmune disorder with many manifestations.

In Fascione’s case, lupus has caused his body to attack its own internal organs as if they were disease-causing bacteria instead of the life-sustaining structures they are. In addition, lupus sometimes causes his blood to make too many platelets, the sticky precursors to red blood cells that are largely responsible for helping blood to clot when it should — and also when it shouldn’t.

The resulting inflammation, congestion and clotting can cause severe damage throughout the body’s organs and blood vessels.

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Lupus has permanently destroyed Fascione’s kidneys. Since Valentine’s Day of this year, he has been undergoing renal dialysis in Bangor three days a week to rid his blood of the excess fluid and waste products that his kidneys would normally filter out. Each treatment takes about four hours and leaves him feeling tired and shaky afterward. He has suffered numerous infections and other complications as the access ports placed in his blood vessels have failed.

Because of all the problems, a planned surgery to implant an abdominal device so he can perform dialysis himself, at home, without the high-tech medical equipment at the dialysis center, has been postponed three times. For the time being, he remains tethered to the Bangor dialysis center.

Not easy to come by

Dialysis is buying him time. But Fascione and his wife, 30-year-old Angela Fascione, are hoping for something better. A new kidney could give the young father, and his young family, a new lease on life.

“Our ultimate goal is to find a suitable donor for Frank,” Angela said during a recent interview at the couple’s tidy home in Newport. “We want to get the word out and see if there’s someone who can help us.”

Most healthy people have two functioning kidneys and can get along quite nicely with just one. But that doesn’t mean kidneys are easy to come by.

According to Dr. John Vella, director of the transplantation program at Maine Medical Center in Portland, there are about 120 Mainers waiting for a donated kidney. Nationwide, about 50,000 are on the waiting list. Vella said they are mostly first-come, first-served, with exceptions made for young children and for some other patients who are moved to the top of the list.

Kidneys from living donors, Vella said, are preferable because they are healthier and ready to work as soon as they’re in place. But kidneys harvested from cadavers also are viable, he said.

Vella said that about 80 percent of people on dialysis are too ill to tolerate a kidney transplant. Between the dangers of general anesthesia and the rigors of anti-rejection medications, Vella said, people with heart disease and other chronic conditions are often not good transplant candidates, regardless of their age.

But a diagnosis of lupus is not necessarily a disqualifier. That’s because lupus characteristically flares up and then abates, and can often be driven into long-term remission.

“It could happen again,” Vella said of the scarring that has ravaged Fascione’s kidneys, “but a diagnosis of lupus would not preclude someone from getting a new kidney.”

Of the roughly 50 to 80 kidney transplants performed each year at Maine Medical Center, the majority are donated by the patient’s spouse, another family member or a friend, Vella said. If no one in the patient’s immediate circle is a good match, he said, the patient might be referred to the New England Program for Kidney Ex-change, a sort of dating service for kidney transplantation.

“If you needed a kidney transplant and you had a willing donor who wasn’t compatible, maybe there would be another pair somewhere else with the opposite problem,” Vella said. It’s not uncommon for the Kidney Exchange to match up donors and recipients for such a four-way swap, he said, or for even more complicated ex-changes to take place.

No one in Frank Fascione’s birth family can give him a kidney. But Angela, whose blood type is incompatible with his, is willing to donate to someone else in a swap. “It would be a win-win situation,” she said. “We would be helping someone else, and they would be helping us.”

Hopeful but realistic

As he battles the devastation of his disease, Fascione is having to take things easy. Dialysis exhausts him, his out-of-whack blood chemistry and his medications make him nauseous, sudden infections can throw him into crisis, and impaired circulation in his legs means he can’t stand up for long. He is unable to work.

“All I know is being a laborer,” he said. Concrete work, landscaping — it all means lots of standing and lifting. “It seems like every time I try to work, blood clots start popping up in my legs,” he said. He pulled up the legs of his jeans to reveal skin that is darkly discolored, pitted with sores and ulcers, swollen with excess fluid his kidneys have been unable to filter out.

“My doctors tell me I really can’t be on my feet for more than 15 minutes at a time,” he said.

Fascione said he’s very close to his children. Most days, even when he’s sick, he looks after busy 2-year-old Olivia while Angela works as a medical assistant at nearby Sebasticook Valley Hospital in Pittsfield. Now that school is out, 9-year-old Angelo is home, too.

“I spend 24 hours a day with Olivia. Now with Angelo home, it will be the same with him. He’s a big, big help around here,” Fascione said. When he can, he helps coach his son’s Little League team.

He said his kids know he’s battling a tough disease.

“Angelo understands to a point,” he said. “He knows kidneys filter blood. He knows Dad sometimes has had to go to the hospital. He understands I could die. I get sick; he’s seen it firsthand. One day I was so sick I couldn’t stand up; my wife had to carry me. He sees that.

“Olivia just watches. She gets so sad if she sees me crying or vomiting. Sometimes the pain gets so bad there’s nothing else I can do but cry.”

Fascione said the day-to-day challenges of living with lupus and kidney failure are daunting, but he remains hopeful that, somehow, a new kidney is in his future.

He is realistic, too. If he should ultimately lose this battle, he knows Angela will be on her own with the children.

“It’s something you’ve got to plan for,” he said. “But you don’t really want your kids to grow up without their father around.”

On the Web:

www.mmc.org/mmc_body.cfm?id=2006

www.lupus.org

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