After 2d transplant, great strides

Recipient of parents' kidneys, Gloucester woman wins six medals at Transplant Games

(Joanne Rathe/Globe Staff)

When she started her quest, Jen Searl just wanted to run because that's what healthy people do.

Those folks awake at some ungodly hour with the dog-walking types or the paper deliverers or - if they're running late - the sun. The women who put on their sports bras and their sweatpants and flaunt their midriffs to whoever is actually awake at that hour.

Searl has a scar on her midriff.

For anyone who's ever undergone a kidney transplant, that scar along the abdomen is like the surgeon's signature and the patient's memento.

Her scar is from her first operation. She's only 28 years old, and she's had two transplants.

Ask, and the Gloucester resident will tell you there's a difference between the procedure that saved her life, and the procedure that let her live it.

Last month, at the biennial Transplant Games in Pittsburgh, Searl was surrounded by more than 1,300 people who had been through life-saving transplants: a number of heart transplants, some double-lung transplants, some kidney transplants like herself.

The National Kidney Foundation has organized the Olympic-style competition for people with lifesaving transplants since 1990 to raise awareness. But mostly, it opens the eyes and souls of the people there, who get to see the athletes perform feats they never thought they could, be it table tennis or a 5K road race.

"They're all just happy to be alive," Searl said. "Participating in the games is just something they thought they'd never be able to do. It's such a feel-good atmosphere."

The National Kidney Foundation invites donor families to watch the games. Even though she couldn't relate to having a donor from a different family, Searl could feel the connection between the families of the organ donors and the people who needed those organs to live. She watched the winning athletes present their medals to the donor families, often weeping with them.

"It just gave me chills," said Joan Searl, who offered her kidney to her daughter when the family found out the kidney that her father, Donald, gave her when she was 13 had started to fail.

Searl won six medals at the games, and became the unassuming poster child for the event and for organ donation itself.

She watched every athlete. The one swimming the 500-yard freestyle in the lane next to her fought longer than anyone else just to finish. There were others sharing stories about the different medications they had to take just to stay alive.

Searl thought about the life she led after her first transplant, and the life she's able to lead because in 2002 she stepped out on a limb as one of the first to have both the organ from the donor and the donor's bone marrow transplanted in hopes that she'd never have to use medication again.

She thought about how life after organ donation is different for some people than others and how it doesn't have to be that way.

"I don't think people should have to settle," she said. "For me, my quality of life wasn't there and we didn't accept it."

The first transplant was the lifesaver. Searl knows this. If it wasn't for her father's kidney, she wouldn't have lived to receive her mother's. In the months leading up to the first transplant, no one even knew her kidney was failing.

At first, her mother thought she was anemic. For a 13-year-old, Jen Searl was always pale. Then, she took her physical for summer camp.

It turned out her mother was right. She was anemic. But she also had only 15 percent kidney function. She was fortunate that both her parents and her sister were all matches as donors. And with his daughter's life on the line, Donald more than willingly volunteered.

According to the foundation, more than 100,000 Americans wait for organ transplants each year. About 20,000 receive them. But almost all those recipients end up taking some kind of antirejection drug for the rest of their lives.

For seven years, Searl was one.

Receiving her father's kidney was a blessing, and Searl wasn't one for being ungrateful. But she was still sick. Two years after the operation, the kidney started to fail. So between the ages of 15 and 22, her body went through chronic rejection. Plus, the prescribed medication was actually toxic to the kidney.

Her feet developed warts that had to be removed by lasers. Her mother sent away for burn kits, trying to get the skin back on her feet, but the warts would come back as fast as she'd apply the treatment. Jen could hardly walk.

"She was just so sick," Joan Searl said. "Between the kidney failure and the medication she was just so tired. That's usually the key symptom. She didn't have the energy to do sports or anything else."

Searl's second transplant is what guaranteed that she'd no longer have to worry about that. Joan Searl was an insider at Massachusetts General Hospital, working as a liaison. She was also the type to never take no for an answer. So when she and Jen came across a story in a medical journal about an idea to transplant the donor's bone marrow along with the organs in order to improve the receiver's health, she started chasing down doctors.

"I just hoped and prayed that it would work for her and that she would get healthy again," Joan said.

As for Jen, after spending the prime years of her life "sleepwalking" through chronic kidney failure, she wanted those years back. She and her mother found a team of doctors willing to do the groundbreaking operation the medical journal talked about. The rest is history.

"I just felt like a kid in the candy shop with having a healthy body," Jen said. "You want to test-drive it. What can I do? Can I do this? Can I do that?"

She wanted to run.

She wanted to put on the stretch pants and the sports bra. She wanted to show off her scar and not hide it.

"She was just so amazed by how good she feels," Joan said. "Because you don't know how bad you felt until you feel good again."

She's eyeing triathlons these days. She's looking to run the Title 9 Women Only Sprint triathlon Sept. 7 in Hopkinton, and is training with Karen Giroux at the Beverly Sterling YMCA.

"She works as hard as if not harder than any other client that I've ever worked with," Giroux said.

The World Transplant Games will be held in Australia next year, and Searl will represent America. In the meantime, the mid-New England team will open its search for athletes to compete in the 2010 games next year.

Many of those athletes will start at the same place Searl found herself after that second transplant, wondering what the possibilities are now that they've got a second chance.

The hope is that they come up with the same answer.

"She can do anything now," Joan said. "It's just like there's no stopping her."

Julian Benbow can be reached at jbenbow@globe.com.