Bad kidney makes good palsRaleigh man joins 11 others in national organ swap to save a friend's life
BY SARAH AVERY, Staff Writer
When they're near each other, best friends John Foley and Kaaren Johanson inevitably clasp hands.
As if guided by force, they have an instinctive connection.
So when Foley decided last year that he should donate a kidney to Johanson, whose organs have been ravaged by diabetes and previous transplants, he was undeterred by the small matter that he and she were no match.
Now, the two Triangle residents are poised to give and receive just as they had hoped, but their tight circle has been expanded.
He will be donating his kidney to a patient in Oklahoma City and she will receive an organ from someone in Detroit as part of an intricate donation chain that will involve 12 people.
The transplant loop, planned for June 22 at the Johns Hopkins Hospital in Baltimore is the result of medical advances that essentially wash kidneys free of the blood components that trigger rejection in less-than-perfect matches. The fist-size organs are necessary to filter waste from the blood, and without them, toxins can build in the bloodstream, damaging other organs and tissue.
Hopkins has helped pioneer the use of donations between incompatible pairs, and in 2005 performed the first large shuffle involving 10people whose organs were swapped among participants to improve results.
The surgery involving Foley and Johanson will be the second domino swap at the hospital this year. The procedures -- complex orchestrations involving multiple operations at Hopkins and far-flung hospitals, plus organs airlifted across the country -- are anything but assured until the moment they occur.
"If one person backs out, the whole thing crumbles," Foley said.
One thing is certain, Foley said: He won't be the weak link.
"If anybody deserves a kidney," he said, turning to Johanson, "it's her."
Patient like no other
Before Johanson was Foley's best friend, she was his patient.
A technician at DaVita dialysis clinic in Durham, Foley, 52, had tended dozens of people whose lives he wished he could change. Mothers, fathers, children -- all suffered failed kidneys, tethered for hours a day to a machine that saved their lives and yet, over time, seemed to sap their spirit.
Most of his patients slept through the therapy, drained of energy.
Not Johanson. She charged into the clinic each session with a full calendar and an agenda.
"She was always on the phone," Foley said.
Despite illness, Johanson, 46, has continued to work as operations manager for a company that develops and grades school tests. In addition, she sponsors a refugee family from Vietnam, works with Urban Ministries to aid the poor, heads a Cub Scout troop, is a leader on the local committee for the Crop Walk hunger campaign and mentors at-risk youth.
By the time Foley met Johanson in 2006, she had had two kidney transplants. Her first was soon after she left graduate school at Vanderbilt University, in 1996. She was 33, and suffered the consequences of denying that her type I diabetes required constant vigilance. She knew the disease, unmanaged, could cause organ failure, amputations or heart problems, but she believed it would never happen to her.
It took kidney failure to get her attention. But the first replacement parts "never really took," she said.
In 2000, she got two more kidneys, plus a new pancreas, which controlled her diabetes. For six years, she said, she felt great. Then in 2006, after she moved to Durham, she thought she was depressed, but her malaise actually stemmed from kidney failure. The organs had been burned out by the very drugs she took to keep from rejecting them.
Back on dialysis, she made sure to use her time in therapy -- four hours a day, three days a week -- to its fullest. She worked the phones. She worked the room.
At one point a couple of years ago, she challenged Foley to quit smoking if she got certain of her blood levels in balance.
That was it for Foley's pack-a-day habit.
"I haven't smoked since," he said.
Donor's revelation
Last year, Foley took a good look at himself in the mirror. What, he wondered, could he do to make the best of his life? And it struck him that he should donate one of his kidneys to Johanson, who had become his best friend during all the hours they shared at the dialysis clinic.
A divorced father, he talked with his two children, his parents, his siblings. All supported his notion.
Then he mentioned it in passing to Johanson.
"I thought, 'Did he really say that?'" she said.
Neither of the friends considered for a moment that their organs wouldn't match. Though not romantically linked, they are compatible in every other way -- same politics, same basic drive to help others, same love of baseball.
But tests at UNC Hospitals in Chapel Hill, where Johanson was listed for an organ transplant, showed they were not a good match at the cellular level.
A large database
Dr. Randy Detwiler, director of UNC-Chapel Hill's kidney transplant program, said the hospital frequently refers incompatible transplant pairs to Johns Hopkins, which has a large database of donors and recipients that it can draw from to find good matches.
Detwiler said most transplant programs can do simple switches among donor-recipient pairs, but such swaps are based on long odds that the people will match by blood type or tissue compatibility.
Hopkins has a much larger database that it can shuffle to arrange complex swaps that include as many as 12 people. It has done 48 transplants in the so-called domino swaps since it tried its first three-way transplant in 2003.
Officials at the hospital declined to discuss the procedure involving Foley and Johanson.
"Patient participation and other variables are still unclear," spokesman John Lazarou said in an e-mail message.
The hospital's similar endeavor earlier this year involved 12 patients and more than 100 doctors, nurses and others who participated at three hospitals across the country. Five pairs were involved, plus one donor who had no designated recipient, and a recipient who was matched off the nation's organ-transplant list.
Hopkins, along with the University of California-San Francisco on the West Coast, draws a multitude of donor-recipient pairs based on an aggressive advocacy for incompatible transplants. The procedures rely on a process that filters antigens from the donated organs so that recipients are less inclined to go into rejection.
The technology has widened the pool of donors, but the need for organs remains dire. Nearly 80,000 people are waiting for kidney transplants in the United States.
"The reason all this complicated stuff has to happen is it takes so long to wait for a kidney off the list," Detwiler said. He said it's in the best interest of kidney patients to get a transplant sooner rather than later, because their health only deteriorates with time.
Illness takes its toll
Johanson knows all too well about feeling crummy.
She is thin and walks with a slow, deliberate step.
On June 11, she got shaky and feverish, and was admitted to Duke University Hospital over the weekend and given intravenous antibiotics. Doctors were uncertain of the source of the infection, but she was released last Sunday , and headed to Baltimore with Foley last week.
Foley, too, said he's eager for Monday's surgery.
"I have no fear about it," he said, squeezing Johanson's hand. "It's the absolute right thing to do."
He said he is especially looking forward to meeting others pulled together in the organ exchange -- strangers soon to be linked to him and Johanson by their own compelling bonds.
savery@newsobserver.com or 919-829-4882
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