Giving Life Twice

Giving Life Twice

National Kidney Foundation honors Ashburn couple that donated kidneys to both children.

In 2000, Scott and Carolyn Johnson and their two children were killing time in a doctor's exam room at the Children's Hospital in Fairfax by blowing up latex gloves and generally goofing off.

When the doctor appeared, he told them that both their children suffered from juvenile nephronophthisis — kidney disease — and that they would require kidney transplants by the age of 13.

The diagnosis came when the family was trying to discover the cause of 8-year-old Chelsey's stomach upsets; 11-year-old Matthew, meanwhile, was tested after a routine Boy Scout physical revealed that something wasn't quite right.

No one in the Johnsons' family history had ever suffered from kidney disease.

"We went down in the atrium and just bawled," said Scott Johnson, director of engineering for Marriott at two Dulles Airport hotels. "Our world had turned upside down."

The Johnsons went on a planned family vacation to visit grandparents in Pensacola, Fla., and then returned to Ashburn to begin the presurgical planning for the two children. Transplant, they had learned, was the best option for both Chelsey and Matthew.

With 59,000 Americans currently on the waiting list for a kidney, there was one obvious choice: Scott and Carolyn Johnson prepared themselves for surgery, too, to each give a kidney to their children.

THE NEXT FOUR YEARS were a blend of disaster, luck, fate and celebration for the Johnsons, culminating in the family's appearance at the National Kidney Foundation's Kidney Ball at the Omni Shoreham in Washington, D.C., on Nov. 20. The Johnsons were picked as the foundation's model story for the year after Scott Johnson sent an e-mail telling their extraordinary tale.

"We were just bowled over when we read the story," said Michele Anthony, the foundation's director of communications. "We hear this stuff all the time, and we just couldn't fathom it."

Anthony had been looking for a story to feature in the foundation's annual video, and the Johnsons were the perfect fit. The video, "Giving Life Twice," was shown and the family honored at the black tie Kidney Ball, which raised more than a million dollars for kidney research and outreach. It is the largest single-day kidney fund-raiser in the country.

THE JOHNSONS' story was a series of dramatic moments strung together by the family's unerring faith. As members of Christian Fellowship Church in Ashburn, the Johnsons had a church family supporting at every turn, and the faith to know that things would turn out well in the end.

"She always knew she would get her miracle," Carolyn Johnson said of Chelsey, now a home-schooled sixth grader. Chelsey would need it, and her father believes she got it.

At the end of November 2003, two weeks after Chelsey's transplant, she complained that she couldn't feel her legs. She and her father were on Route 7 in Tysons Corner on the way to the hospital when Chelsey began to seizure. Scott Johnson called 911, but to his dismay, watched the ambulance turn down the wrong cross street as it approached.

Suddenly, when he turned around from consoling Chelsey in the back seat, he saw three men standing outside his car. One asked if the ambulance was for him. He said yes, and the three men took off to flag it down. The ambulance soon appeared, and he never saw the men again.

That night, Chelsey underwent emergency surgery to repair a grafted vein that had burst inside of her, causing her to hemorrhage. The kidney had to be retransplanted.

BETWEEN CHELSEY'S surgeries, Scott was walking the halls of one of the Marriotts when he noticed something stuck in the frame of a painting. He pulled out three white confetti doves. There was no other confetti in the hall. He now carries them in his wallet as a reminder of the three men who helped save Chelsey's life that night in Tysons Corner.

"All through the whole thing, there were miracles left and right," he said. "You couldn't deny it."

Matthew got his miracle, too; he underwent his surgery in November 2001. With a more advanced situation than Chelsey, both Matthew's kidneys required removal. They would be replaced by his father's left kidney.

In the weeks leading up to the surgery, however, Matthew was beset by infections that forced the postponement of surgery. First it was shingles, which cleared up, and then a persistent oral thrush that could become rampant once the immuno-suppressants designed to prevent the body from rejecting the kidney kicked in. So surgery was delayed again.

But Matthew's situation was getting more dire by the day. At 12 years old, he weighed 57 pounds. It was too late to put him on dialysis. The surgeon decided to go ahead and battle the oral thrush after the fact.

When Matthew awoke from surgery, against all odds, the oral thrush was gone. He went home three days later; a minimum of 14 days in the hospital is normal.

Matthew is now a sophomore at Stone Bridge High School. He plays tenor saxophone in the marching band.

THE NATIONAL Kidney Foundation has been emphasizing transplants from live donors because the need is so intense. The Johnsons' story demonstrated that live transplants are often the best choice. Neither Carolyn nor Scott had complications, although her transplant required the older style of making a long cut along the side of her body. His was done laparoscopically, meaning few incisions were made.

Live transplants have now surpassed cadaver transplants, according to Michele Anthony. Nearly 2,000 people in the metropolitan Washington area are awaiting kidney transplants. Nationally, 17 people a day die while awaiting a vital organ, and every 12 minutes, another name is added to the national transplant waiting list.

In November, the Johnsons celebrated the first anniversary of Chelsey's transplant and the third anniversary of Matthew's transplant. After three years, the risk of organ rejection is very small. Now, they can relax, at least a little; but even during the worst days, they knew this time was coming.

"Even when we were mad and upset," Scott Johnson said, "we knew somewhere down the road, everything would be OK."