Few donors make wait for transplants long, uncertain

Jimmy Powell gave up.

He had lived at the Gift of Life house in Philadelphia for 15 months, waiting for a lung-liver double transplant.

The Alabama man arrived in Philadelphia with so much hope. The subject of an Inquirer story last year, he loved cooking barbecue for fellow residents. But waiting wore him out.

He went home last fall.

He's still on the transplant list, even though he's now 900 miles away. His University of Pennsylvania doctor made a rare exception for him.

Powell's situation underscores a cruel reality - with so few donors, waits can be long.

"We're pretty laidback down here in the South," Powell, 59, said by phone the other day from his home in Trinity, Ala., population 2,100. "We try not to get on edge. But waiting for a transplant is like being on the edge all the time. You have no control. You have no idea. Every day you're just waiting."

For decades, Powell fixed machinery at a GE refrigerator plant. He likes to fish. About 15 years ago he was diagnosed with a genetic disease, Alpha-1 antitrypsin deficiency. It ruined his liver and lungs.

For a decade, he was treated at Vanderbilt University, two hours from his home. But in summer 2013, when he needed a liver and lung transplant, he got wait-listed at the University of Pennsylvania, one of five U.S. hospitals doing lung-liver transplants.

He and his wife, Belinda, moved into the Gift of Life house at Fourth and Callowhill.

He made a home of it until he could no longer.

"Jimmy was to the point where he was ready to say totally forget transplant," his wife said. "He was sick of it. We watched literally 20 people die. We got close to people. We saw the families hurting after the death. It got to be an emotional roller-coaster ride."

"We're really thankful the house was there," she continued. "That's not even an issue. It's a godsend. But seeing people coming and going and getting transplants, and he's still waiting, that even got to be hard. Not that we begrudge anyone, it was just tough for us."

They had exhausted $43,000 in savings since his transplant journey began, and were $15,000 in debt.

Powell was ready to go home, maybe do some fishing, put fate in God's hands.

Some facts:

More than 6,200 people in this region - eastern Pennsylvania, Delaware, and South Jersey, the area served by Gift of Life - are waiting for heart, lung, liver, or kidney transplants.

Last year, only 750 people in the area suffered brain death while their hearts still beat, making them possible heart, lung, and liver donors. Only 447 had agreed to donate or were suitable.

Since many gave multiple organs, 1,133 transplants were performed in the region last year. More than 2,300 people donated tissue, from bone to skin to corneas.

Last year, 236 people in the region died waiting for transplants and an additional 301 had their names removed from lists because they were deemed too sick.

It costs Gift of Life $160 a night to house each family that stays there while waiting, but it charges each just $40, less if they can't afford that. "Nobody gets turned away," says Howard Nathan, head of Gift of Life.

Their last months the Powells paid $20 a night.

Still, it adds up over 15 months.

"It's not like I'm on my deathbed, and it seems like you have to be on your deathbed to get a transplant," Powell said.

He has just about one-fourth the usual lung capacity, said his transplant doctor, Vivek Ahya, at Penn. Difficult, but better than most of Ahya's patients.

"Everybody was in dire straits and I wasn't. Just sitting there and waiting and waiting and waiting. I couldn't do it anymore."

Belinda - who dated Jimmy in high school and only found him again later in life - couldn't let him quit. She called Ahya, and warned him.

"He was getting profoundly depressed being away from his family," said Ahya, who made the unusual decision to let his patient go home, while keeping him on the list. "He could wait another two or three years. The way he gets higher on the list is if he gets sicker."

Ahya said when lungs become available, Powell will also get the donor's liver.

A pilot who lives near the couple's home, part of the volunteer Angel Flight program, has agreed to get Powell back to Philadelphia for free whenever the transplant call should come.

Ahya says fewer than 100 lung-liver double transplants have been done, but the survival rate is 70 percent after a year, nearly as good as single-organ transplants.

Powell tries to do small projects at home - painting, cooking - but he's tied to oxygen, has little energy, and keeps getting infections. He has side effects from heavy steroids.

"One day it will happen," Powell said. "I'll wake up and I won't have this oxygen tube on my head or I'll be in heaven. One way or another I'll be all right."

215-854-5639 @MichaelVitez