A life shared

Couple gain from wife's extraordinary gift

Brad Nettles
The Post and Courier

Dan Allen, shown with wife Julie, inherited polycystic kidney disease from his mother.

Brad Nettles
The Post and Courier

Dan Allen and his wife, Julie Allen, hold hands last week at their Mount Pleasant home. When Dan needed a kidney to live, Julie was a match and gave him one of hers.

When on May 1 he learned that his potassium count had shot up, and his kidneys were functioning at just 14 percent of their normal capacity, he waited a day and a half before telling his wife.

He was trying to absorb the shock, preparing to face the harsh reality of his choice.

Soon Dan and Julie Allen were attending a class at a dialysis clinic, learning about two approaches, both requiring hours every day of machine-assisted cleansing.

He knew this day would likely come: Dan inherited polycystic kidney disease from his mother. But being aware of a genetic disorder is much different than suffering its acute symptoms and, much sooner than expected, undergoing radical surgery to correct the problem.

Dan's life would never be the same.

Hemodialysis would require Dan to visit a special facility nearly every day, where he would be hooked up to a big machine that filters his blood over the course of three to five hours. It would cause a major disruption in his life.

Peritoneal dialysis would allow Dan to have his blood cleaned at home during the night. A special solution of glucose and minerals would be pumped into his abdominal cavity, and the semipermeable peritoneal membrane would act as a filter. The solution would absorb waste, then get drained.

Dan was thinking about how he loved to go fishing and take walks on the beach with Julie. He was thinking about how much he enjoyed coaching his 12-year-old son Hunter's soccer games. He was thinking about the landscaping he and 17-year-old son Patterson like to do in their Mount Pleasant subdivision, helping neighbors and helping his son learn about the meaning of work.

During the clinic's information session, Dan and Julie were escorted to a large closet full of big cartons, each one filled with the ingredients used in peritoneal dialysis. They were told that each box represented one day's treatment. Julie was trying to visualize a month's worth of cartons stored at the house. Confronted by the physical and logistical reality of renal disease — Dan's new dependency, Julie's new role as caregiver — emotions overcame them both.

"That really brought tears to my eyes," Dan said. "It brought tears to Julie's eyes."

"Where are we going to put all this stuff?" Julie wondered.

But there was another way.

Dan could get his name on the list. His kidneys, full of cysts, were almost useless. He could become eligible for a donor organ. And if all went well, he could avoid dialysis altogether.

Dan's brother, Hugh, agreed immediately to donate a kidney if blood types were compatible. Julie would assume the caregiver role, seeing her husband through the long recovery period and taking care of the boys.

But Hugh had borderline high blood pressure, so the doctors at the Medical University ruled him out. He probably would need both of his kidneys in the future.

Dan had avoided discussing his health problems with others, but the time had come to share his dilemma with his church family. When the "growth group" Dan led at Lighthouse Church assembled, he came to the meeting unprepared to discuss the pastor's weekly message or delve into the subtleties of Scripture.

He just blurted out the truth: His kidneys had given up. Then something surprising happened.

"Two ladies raised their hands and said, 'I'll do it,' " Dan said. "It just floored me."

Others spoke up, too. Hugh's girlfriend said she would donate a kidney. A member of Lighthouse who was nurse at Roper Hospital said she would donate a kidney. The offers came, selfless, loving, respectful, full of faith.

But to be tested costs $5,000. The Allens couldn't expect their friends to pay that kind of money, and their own insurance covered only family members.

The solution, it turned out, was nearer than either of them thought.

Julie was tested and learned she had A-positive blood, the same as Dan's.

"She was so happy, she forgot about the other stuff," Dan said. The other stuff included deciding who would take care of the kids if both parents were recovering from surgery? Who would cook and clean? Who would be Dan's caregiver? All of that was manageable, but Dan was left feeling uneasy. Should he accept his wife's kidney?

"It's humbling to realize you're taking someone else's body part to live," he said.

Dan was pale, easily fatigued. He had lost 24 pounds since the beginning of the year. The risks were significant: Infection could set in or the new organ could be rejected. Dialysis might be unavoidable then. Or worse.

Julie looked at her husband and decided there was no time to lose.

Lucia Miles and Amy Marfia got busy. Miles, living-donor coordinator at the Medical University, was Julie's advocate. Marfia, the hospital's kidney transplant coordinator, worked with Dan. They gathered all the medical records and test results, setting the stage for surgery. They answered questions, explained the risks. Because Dan was relying on a living donor, his wife, he could proceed with the transplant right away. He could avoid dialysis. He didn't have to wait for an organ to become available.

In South Carolina, only the Medical University performs organ transplants. In 2007, the hospital did 182 kidney transplants, 39 of which involved living donors, Marfia said.

As of July 15, there were 664 people in South Carolina waiting for a kidney, 76,530 nationally, according to the Organ Procurement and Transplantation Network. Though the state has one of the shortest wait times for kidney transplants, it is among the worst regarding kidney health, Marfia said.

One in eight South Carolinians has chronic kidney disease, according to the National Kidney Foundation. The state is third in the nation for the number of people on dialysis. Blacks suffer disproportionately. About 30 percent of the population is black, but blacks comprise 75 percent of the state's kidney patients. Many more go untreated. Diabetes is the leading cause of kidney failure, according to the foundation.

Dr. Kenneth Chavin, Julie's surgeon, said working with such well-informed and motivated people was a pleasure.

"They represent truly unconditional love," he said.

"You're going to feel like you were hit by a bus when you wake up, and your husband's going to feel great," a nurse told Julie before the operation.

Laparoscopy is now the preferred way to remove a healthy kidney. Doctors make two small holes through which they can maneuver instruments and project a clear image of the inside of the abdomen on a color monitor in the operating room. After detaching the organ and cauterizing the blood vessels, the kidney is placed into a plastic bag then removed through a small incision below the bikini line.

Still warm when transplanted into the recipient, it is more likely to function properly — and quickly — compared to cadaver kidneys.

Their two boys showed great courage, Julie said. Hunter was convinced his father would pull through. If Dad could survive his crazy college days, he could survive this.

Patterson took over the blog, keeping family and friends up to date, holding on to his feelings. He understood that the hunting, fishing and yardwork, the visits Mom and Dad made to the church youth group meetings on Saturday nights, would be put on hold for a while, maybe forever, and he didn't like to think about that, his mother said.

"I think he was realizing this may all end," she said.

The one-year survival rate for a living kidney graph is 97 percent, Chavin said. (A cadaver kidney has a one-year survival rate of about 90 percent.) A transplanted living kidney typically will last 12-15 years.

Dan is a fourth-generation funeral director. He works at J. Henry Stuhr's Inc. The family lived in Atlanta before moving to Mount Pleasant 10 years ago.

He likes his job. It's about serving the needs of others. "It's helping somebody get through the worst day of his life, and you only have one chance," he said.

Dan and Julie like to help people. Julie is the preschool director at Lighthouse. She oversees about 130 children and perhaps 15 staff members.

"Dan is so down-to-earth and Julie is so open," Lighthouse Church Pastor Tim Head said. "They're not afraid to talk about their faith."

A few days after the surgery, on July 13, Head projected a photograph of Dan and Julie on the big screen during the Sunday morning service.

The prayers issued forth. Faith was reinvigorated. This was surely an affirmation of God's love.

Recovering at home a few days after the July 9 surgery, Dan revealed a long incision, stapled closed, running diagonally along the right side of his belly. Julie is reclined on the couch, fatigued, uncomfortable.

But they are improving. Color has returned to Dan's face, his brother Hugh said. Hugh and Patterson are building a raised garden bed for the backyard.

Before the surgery, Dan had to watch his diet. Foods with high potassium levels were forbidden. He was facing a possible future absent of collards and butterbeans and tomatoes.

But now, with his wife's healthy kidney busy at work inside him, a different future looms, one that includes soccer matches and landscaping, Bible discussions and wonder at the mysteries of God.

Hugh and Patterson will plant tomatoes in the garden.

Julie said the experience has brought the family together. Hugh and Hunter bonded. Her rarely seen brother in southern Georgia came with his wife.

"He was just so sweet and good to me, it made me weep," she said.

Julie, a living donor, has ensured that her husband will live. She said she hopes the family has set an example.

"We really see ourselves paving the way for what happens to others," she said. "For us, it doesn't stop here."

Dan has three siblings. Only Hugh is free of the genetic disorder that causes polycystic kidney disease. Three of his nieces have been diagnosed with the problem. Patterson and Hunter did not inherit the faulty gene.

Maybe they will be future donors, Julie said.

Reach Adam Parker at 937-5902 or aparker@postand courier.com.