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Monday, January 24, 2011

Two families joined by gift of living organ donation

On paper, Garren Nowicki and Marco Ginefra may not have much in common.

Nowicki is a 36-year-old Bucks County, Pa., resident, married with two sons. Ginefra is 22, a recent graduate of the University of Delaware who lives in Wilmington, Del.

But despite their differences, the two are inextricably linked through one extraordinary act of kindness: On Nov. 9, 2010, Nowicki donated half his liver to Ginefra.

Their journey started with an e-mail sent this summer from Ginefra’s parents, Beth and Pat.

In it, they pleaded with family and friends to consider becoming a living donor. Their son, Marco, suffered from a rare and chronic liver condition, one that was worsening.

Nowicki, a Ewing native who now lives in Newtown, Pa., received that e-mail on July 22.
His wife was good friends with Beth, and he knew Marco casually.

He and his wife read through the e-mail and “just tossed around the idea, would either of us be willing,” Nowicki said.

His wife, Wendy, was an immediate no — her blood type didn’t match Ginefra’s.
“She kind of looked at me, and I looked back, and I said I’d be willing to consider it,” Nowicki said.

His willingness was unusual, he admits. Most living donors are closely related to the person requiring the transplant — a spouse, a child, a parent.

“I’m more used to (hearing about) people getting liver donors from their parents, or brother, or best friend,” said Ginefra. “Which makes what he did even more special.”

A diagnosis
Ginefra’s health issues began the summer before he entered high school, when a routine blood test picked up some irregularities with his liver functions.

After more tests and a liver biopsy, the teen was diagnosed with primary sclerosing cholangitis (PSC), a chronic liver disease that can lead to cirrhosis and organ failure.
A liver transplant would likely be the only successful treatment.

Ginefra’s condition didn’t affect him through most of high school — he played lacrosse and was largely able to shove his potentially life-threatening condition to the back of his mind.

By the time he entered college, however, the disease began creeping up on him. His energy levels were dropping, he was losing weight and his skin was beginning to become jaundiced.

“By the time I was a junior in college it was pretty apparent I would have to get a liver transplant at some point,” said Ginefra.

In the summer of 2008, he was placed on a transplant list for cadaver livers.

Doctors use something called a MELD score to determine how badly someone needs a transplant by analyzing blood levels and other criteria.

The scale goes from 6 to 40. Most transplant patients are scored at around 25 or higher.

Ginefra’s MELD score fluctuated between 18 and 20. It wasn’t good, but not necessarily bad enough to bump him to the top of the organ transplant list.

“I was stuck in limbo, basically,” he said.

After graduating last spring, the situation became more dire: Ginefra was growing sicker, and it was clear he wouldn’t be able to find a job, to move on with his life, unless he received a new liver.

His prospects of moving up the transplant list quickly enough weren’t promising, so the Ginefras sent out their fateful e-mail.

A prayer answered
The liver is the only human organ that can regenerate, or regrow.

In living donations, the donor organ can be split in half and both pieces can be expected to regrow to normal size.

According to the Mayo Clinic, more than 15,000 patients are registered on a liver transplant list each year. But only about 4,500 cadaver livers, a third of those needed, become available for transplant.

It looked like a living donation was Ginefra’s best option.

Enter Nowicki.

The financial adviser works at a Merrill Lynch office in West Windsor. He’s a numbers guy, he said.

After careful examination and research of links and information the Ginefras provided, he was comfortable with the statistics for living organ donation.

Only about four out of 4,000 people had died after undergoing the procedure Nowicki was considering, odds he thought weren’t half bad.

“I’ve been asked by every single person I’ve met, why would I do this and especially for someone I’m not very close to,” said Nowicki. “It’s not your typical relationship for a living donor.”

But Nowicki, a father to two boys, 5 and 2, said he couldn’t say no.

“I don’t know if I would have made this decision six years ago, but as a parent I couldn’t not do this,” he said. “If I was desperate enough to send this e-mail, I would hope that someone would answer my prayer.”

After undergoing a barrage of tests to determine that the livers would indeed match and there was nothing untoward about Nowicki’s intentions — he wasn’t being paid to donate the liver, for example — the families decided to proceed.

Nowicki acknowledges his circumstances were ideal for such a huge decision.

His colleagues at Merrill Lynch were extremely supportive, he said, and assured him his team would rally around him and pick up his workload while he took six to eight weeks off to recover from the transplant.

And he could afford to take nearly two months off from work.

“Most people may have wanted to, but they can’t financially, emotionally,” he said. “It was just dumb luck we’re a match and I’m the one guy who can do these things.”

In the weeks leading up to the surgery, Nowicki continued to feel confident about his recovery and the odds for complications.

But he was worried about his boys.

If anything happened during the surgery, he wanted them to know why he decided to do it and leave them with one final message from their father.

So he recorded himself reading them a story, and tucking them into bed.

After they fell asleep, he moved into another room and began leaving them a heartfelt message, full of “me crying and babbling like an idiot,” he said.

Three minutes in, the camera’s battery died, forcing him to start all over again.

The recovery
Ginefra could barely sleep the night leading up to Nov. 9, the date of the surgery at the Penn Transplant Institute at the University of Pennsylvania.

“I was anxious to get it over with,” he said. “I wasn’t so much nervous for myself. The hardest part was knowing what Garren was putting on the line for me, the weight of that.”

After more than eight hours of surgery, the transplant was completed. Ginefra wound up receiving nearly 60 percent of Nowicki’s liver, all of it from the right side.

Nowicki spent a week recovering in the hospital before he was released, while Ginefra was there for 13 days.

By February, the three-month mark, both their livers should be almost entirely regrown.

Ginefra will have to take immunosuppressants, anti-rejection drugs that keep his body from rejecting the new organ, for the rest of his life, but hasn’t suffered any complications since the surgery.

He’s still sore, but has been working out and shoveling in food in an effort to regain all the weight he lost before the surgery.

“I don’t think I really realized how bad I was feeling until a few weeks ago when I started feeling really good,” he said.

Nowicki is almost entirely recovered as well, and is back to working nine-hour days at work, down slightly from his usual 10.

Ginefra finds it hard to express how grateful he is to Nowicki for this second chance at life.

“It’s really hard for me to put into words,” he said. “What do you say to someone who has literally saved your life? I just hope he knows how grateful I am for him and his family.”

The two families are now working on spreading awareness of living organ donation through a nonprofit they’re forming, called Garren’s Gift.

Through the organization, they also hope to assist and support those considering living organ donation, emotionally as well as financially.

“We just want to be able to give back more,” Nowicki said.

For more information, visit garrensgift.org.

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