Awaiting transplant, making the best of a home away from home

When Jimmy Powell was 21, he begged his girlfriend, Belinda Massey, not to leave with her mother and little brothers, who were moving clear across Alabama.

"You're 18 now," he told her. "You can stay."

"You know I can't," she said. "They depend on me."

Her mother, a young widow, had finished nursing school and taken a job. Belinda helped with the boys.

Roll time. After 27 years, both divorced, she found him on the Internet. He lived in Trinity, Ala., a town of 2,100, and fixed machinery at a GE refrigerator plant. They pick up where they left off.

Only she asks, "Jimmy, what is up with that wheezing?"

"It's nothing," he says. He misses some work, gets sick a lot.

She made him see a specialist in Birmingham.

They had been married four months when he got his diagnosis: a genetic disease, Alpha-1 antitrypsin deficiency. It had ruined his liver and lungs.

"I should have sued him for disclosure," she jokes.

For a decade, he was treated at Vanderbilt University, two hours away. But last summer, when he needed a liver and lung transplant - only 60 have ever been done in the United States - they came to a team at the University of Pennsylvania.

They have been here since July, waiting.

"Yeah, we like Philly," says Jimmy, 57. "It's not what we're used to. You don't see folks sitting around fishing. There's a lot less grass to cut in Philly."

They have been staying in the Gift of Life Family House at 401 Callowhill St. Opened two years ago, this house is the fulfillment of a 20-year dream by Howard Nathan, CEO of the Gift of Life Donor Program, which has coordinated 35,000 transplants in the region in the last 40 years.

The house, built with $13 million in donations, features a kitchen with four cooking stations, dining area, lounge, laundry room, gym, and 26 hotel-style rooms.

The cost is $40 a night, though no one is turned away. Residents get free parking and free shuttles to seven area transplant hospitals.

Jimmy and Belinda don't know how people got along before it was built. "I think God walks these halls," says Jimmy.

Most nights, volunteers come in and cook dinners for residents.

"Pasta, pasta, pasta, pasta, pasta," said Belinda.

"And more pasta," said Jimmy.

"These people need some protein," Jimmy said.

So last summer, Jimmy got on the Internet, and found a meatpacking firm on Richmond Street, Kissin Fresh Meats. "We're going over there," he said to Belinda. Oxygen tank in hand, off he went.

Owner Steve Verica gave Jimmy 30 pounds of rib eye for the house, told him, "Anytime you want meat, come see me."

Jimmy bought a barrel-shaped grill at Lowes, charcoal and hickory wood, and cooked that rib eye right out in the parking lot.

He can't grill on blustery days; if the wind shifts, and he inhales smoke, the coroner's report could be a first: death by barbecue.

Jimmy does not grill alone.

The Family House is like a foxhole. Friendships are forged fast and lasting. His first week, Jimmy met Lee Draper, also 57, who is waiting for a heart.

Lee worked in the Marcus Hook refinery on a catalytic cracking unit. He had retired, just moved to a town in Georgia, when his need for a new heart brought him back.

"He's like a brother from another mother," said Jimmy. "He loves to barbecue outside on the grill. He loves to work with his hands, like I do. The only difference in us is color, and his grandmother was full-blooded Irish. So really there's not a whole lot of difference."

Jimmy decided he would cook for the house Friday. Lee would handle the sides - scalloped potatoes, broccoli, green beans, and carrots.

Belinda would make her specialty, grape salad.

At 10 a.m. Friday, Jimmy picked up three big chuck roasts.

Because it was game day, at least for him, Jimmy wore his University of Alabama national championship football T-shirt.

 "It's his favorite, favorite thing, Alabama football," says Belinda. Jimmy was despondent in December after hated rival Auburn beat Alabama. "He didn't come out of the room," Lee said. 

The trio started working in concert. Jimmy stabbed the roasts with a kitchen knife and shoved garlic cloves down deep. Then he rubbed the meat with a mix of black pepper and gluten-free Bisquick mix instead of flour.

Lee started peeling three bags of potatoes.

Belinda washed and dried hundreds of single red grapes.

Until he married Belinda, even Jimmy had never heard of grape salad - red grapes, cream cheese, sour cream, and pecans. Belinda needed crushed pecans but couldn't find any. Ever chivalrous, Jimmy put down his oxygen tank and mashed up the pecans for her.

When Lee went up to take his insulin shot, Jimmy finished peeling his potatoes.

They sliced, diced, steamed, and prepped side by side, then browned the roasts in a skillet.

These were not men with failing organs but chef and sous chef.

They had something more important to think about than life and death.

Dinner for 50.

After Jimmy browned the first roast and moved it to a roasting pan, he forgot to move the smoking skillet under the fan. "Jimbo," said Lee, "watch the pot."

The kitchen has four ovens. Between 1:30 and 2 p.m., Jimmy put roasts in three of them at 325. Lee put his scalloped potatoes in the fourth.

Then both men hit their rooms for a rest.

Jimmy has waited since July for a transplant. He could still be waiting this July, even longer.

Because so few Americans donate organs, there aren't enough to go around. The simple reality: Patients near death go first.

Jimmy is in a difficult spot.

"He has significant liver disease and significant lung disease, but neither is currently so severe that he can get priority in either organ," said Vivek N. Ahya, Jimmy's doctor and medical director of Penn's lung transplant program.

Healthy livers make an enzyme, antitrypsin, released into the blood. It travels to the lungs, where it stops inflammation. Jimmy's antitrypsin is defective, and gets trapped in his liver, causing it severe damage. Meanwhile, inflammation in the lungs goes unchecked, causing emphysema. Jimmy's lung capacity is 28 percent.

Jimmy gets weekly infusions of antitrypsin to help control the inflammation in his lungs - at a cost of $100,000 a year, Ahya said.

Jimmy worries about the cost of his care. Will his insurer decide to stop paying for the infusions? Will it stop covering him and send him to the new online health exchanges? Would another insurer pay for such expensive treatments?

He frets so much that Belinda forbids him to watch health-care hearings on C-SPAN.

Most people who wait for a transplant at least get to stay in or near their homes. But Penn is one of only five places in the country that will perform a combined lung and liver transplant.

Jimmy and Belinda are 850 miles from home, from grandchildren. Jimmy's mother, Louise, died last month. They laid the phone on her chest and Jimmy, her only son, told her he loved her. She smiled and died minutes later. 

  Most who pass through Family House stay a few days for evaluation or a few weeks for transplant. Jimmy and Belinda are the veterans, king and queen of positive, always encouraging. But some days, they keep to themselves.

 "Everybody wants to tell you their story," says Belinda, "and what happened today." A woman who lived in the house for a year gave Belinda advice: On days she just can't listen anymore, "don't make eye contact with anyone."

The kitchen is Jimmy's escape from the daily intensity, the daily uncertainty. It is also his way of giving back.

Dinner is always at 6.

Jimmy pulled the first roast out at 5:15. Sliced it. Saw beautiful pink meat, plenty of blood.

"We ain't having that. Open the oven, baby," he said to his wife.

A normal carnivore would have salivated, but Jimmy knew transplant recipients have weak immune systems. They can get infections from pathogens in rare beef.

Jimmy hoped this was just a bad oven. He checked a second roast. Same thing. He stiffened with stress. Would the meat be ready by 6? He looked very tired.

Lee, steaming broccoli, put his hand on his friend's shoulder.

"It'll be OK, Jimbo," he said.

And it was.

Jimmy sliced the roasts in half so they would cook faster, and, as 6 p.m. approached, he began slicing the edges, the most well-done meat, getting enough for the first couple of buffet trays.

"Ya'll go ahead," he announced at 6:15.

People piled plates high.

Jimmy carried a plate for Gary Prager, a man with a cane, whose wife was being evaluated for a transplant. Lee's son, Leo, 14, followed Jimmy, carrying his oxygen.

"Teamwork," said Belinda. "Roll Tide." That's the mantra of the University of Alabama football team.

Jimmy was in the kitchen, filling a gravy boat, when Dominick Vangeli, a barber from Bethlehem who has been staying there as his wife recovers from a lung transplant, came back for seconds.

"This is the best," Vangeli said.

"I'm just glad you enjoyed it," said the chef.

Finally, when it seemed everyone had been served, and Jimmy teetered from exhaustion, he and Belinda joined Lee and his family at a table.

Belinda had a full plate. Not Jimmy.

"I'm not hungry when I cook like this," he said.

"This is all I want," he said, holding a bowl of grape salad. "This is it, right here."

 Jimmy and Lee know that after surgery, they'll both have to stay in Philly a year, or longer. But they talk about returning to their small towns down South, only three hours apart, and getting together for barbecue.

"No doubt," says Jimmy. 

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