The story of three couples, three kidneys and one goal: life

[okarol]

Interesting, to me, is that one of the donors is a physician who is (or has been) in charge of transplant department.

Harvesting hope from a giving tree
The story of three couples, three kidneys and one goal: life

By Bella English, Globe Staff  |  March 28, 2010

In Brookline, Roberta Falke got a haircut and picked out her charcoal gray pantsuit. She and her husband, Andrew Levey, bought some cookies at a bakery before heading out with their son Isaac.

In Merrimack, N.H., Peter and Susan Scheibe spent the rain-drenched morning doing errands, swinging by Frederick’s in Amherst to fetch a customized cake on their way down to Massachusetts.

In Revere, a nervous Vy Yeng gave extra care to her hair and makeup. Her husband, Hai Nguyen, donned a Day-Glo green shirt and black leather jacket before slipping behind the wheel of their sport utility vehicle.

The three couples were bound for the New England Organ Bank in Newton, where they would all be in the same room together for the first time, strangers united by a fist-size organ that weighs a quarter of a pound and, for them, had become a matter of life and death.

Three months earlier, on Dec. 15, healthy kidneys donated by three of them were transplanted into the others. It was a delicate dance that involved six patients, five surgeons, and perfect timing.

One of the kidneys was donated by the chief of nephrology at Tufts, who had helped hundreds of patients with diseased kidneys but could not, it seemed, help his own wife. Dr. Andrew Levey was not a match for his wife, Dr. Roberta Falke, who needed a transplant. But it turned out that he was a match for Peter Scheibe. Likewise, Susan Scheibe was not a match for her husband, but she was a match for Hai Nguyen. And Nguyen’s wife, Vy, wasn’t a match for him — but she was for Roberta Falke.

“It’s a circle of miracles. I don’t know what else to call it,’’ said Susan Scheibe, whose husband’s kidneys began to fail a year and a half ago.

The matches were made by the New England Program for Kidney Exchange in Newton, which for the past four years has set up computerized swaps among strangers, thus widening the pool of potential donors.

The need for kidneys far outstrips the number of organs available. In New England, the average wait for a cadaver kidney is three to five years. Across the country, more than 83,000 people await kidneys; meanwhile, 12 people die each day while waiting. In New England, 2,500 are waiting for a transplant; each year about 168 here will die before getting one.

Generally, one-third of those who need a kidney have a willing, healthy — but medically incompatible — donor. With the kidney exchange program, such candidates can now enter the pool, as long as their donor is willing to give to another participant. In 2006, as the database was getting off the ground, seven matches were made; last year there were 16 transplants, including the three on Dec. 15. The recipient’s medical expenses are covered by insurance, which also covers the donor’s expenses.

This is the story of how three people found what they were desperately seeking.

Andrew Levey and Roberta Falke
From the time the couple started dating during their medical internships, Levey knew that his girlfriend would someday need a kidney. Polycystic kidney disease is inherited. Roberta Falke’s father died from it at age 54, and three of his five children have the condition. Seven years ago, her brother had a kidney transplant, donated by a sister.

A couple of years ago, Falke, an oncologist, began experiencing fatigue and high blood pressure. Her enlarged kidneys were riddled with cysts, and it was clear that she needed a transplant.

The person who most wanted to donate — her husband — couldn’t: His blood is type A, hers type B. Their 21-year-old son couldn’t give: He has the same condition and may also need a transplant someday. Her sister had already donated to the ill brother. Another sister also has the disease. The remaining sister, whose kidneys are normal, has other health issues.

“As time was going by, there wasn’t a donor and my kidney function was getting worse,’’ says Falke, 60. The usual alternative was grim: to go on dialysis and wait for a deceased donor.

“It was frustrating to me that the most I could do is somehow help her find a donor,’’ says Levey, 59. As the former medical director of both kidney transplantation and the dialysis unit at Tufts Medical Center, he knew what lay in store for his wife, and it wasn’t pretty.

But there was one more possibility. Levey had begun to advise some of his own patients to sign up with the exchange program. Although none of his patients had yet received a transplant through it, Levey and Falke signed on.

As in all transplants, the timing had to be perfect: Falke had to be sick enough, and Levey had to be healthy enough — donors, too, face risks, albeit very slight. In late October, they were notified that there was a possible match; in November, a date was set for surgery.

At 7:45 a.m. Dec. 15, Levey was wheeled into the operating room at Tufts, where Dr. Richard Rohrer, chief of the division of transplant surgery — and a longtime colleague — began removing the left kidney through laparoscopy. By 11:30, the kidney was out, flushed with a preservative solution, packaged, put on ice, and sent in a white New England Organ Bank van to a stranger named Peter Scheibe at the Lahey Clinic Medical Center in Burlington.

Peter and Susan Scheibe
Meanwhile, 15 miles north of Tufts, Susan Scheibe was also having a kidney removed by Dr. Andrea Sorcini at Lahey. Soon, it was on its way to Boston, not for Levey’s wife but for the husband in a third couple.

The Scheibes are also in the medical field. Peter, 64, is a respiratory therapist; Sue, 59, is a nurse. In 1986 he was diagnosed with diabetes. Eighteen months ago, his kidneys began to fail.

Sue wanted to be the donor, and she sailed through a battery of tests. They were three days from surgery last May when a final test revealed that Peter had antibodies that would be harmful to Sue’s white blood cells. The Scheibes were devastated. Their four children also wanted to donate, but one was pregnant, another didn’t match, and two have health issues of their own.

Peter, who works at Lahey, began dialysis there in June, three times a week for three and a half hours. Then the Scheibes learned about paired donations through the exchange.

In August a potential match fell through. Peter’s energy was flagging, his color off. “It was almost like I saw him slipping away from me,’’ says his wife of 38 years. In November the couple were informed of a three-way match, pending final tests. “It took six people to put it on the line to make this happen,’’ says Sue.

They were hopeful but also anxious: What if one of these strangers had second thoughts at the last minute?

“Eventually, it does require a leap of faith,’’ says Dr. Rohrer, “but if we had serious concerns about someone backing out we shouldn’t be doing this at all, and we didn’t have any such concerns in this case.’’

Susan Scheibe went into surgery at 6:45 a.m. Her kidney headed south in an organ bank van to Tufts around noontime, passing the van carrying Andy Levey’s kidney, which was headed north, for her husband.

About 1 p.m., Dr. James Pomposelli, surgical director of transplants at Lahey, placed Levey’s kidney into Peter Scheibe. Around the same time, at Tufts, Sue’s kidney was being transplanted into Hai Nguyen.

Hai Nguyen and Vy Yeng
After what Hai Nguyen and Vy Yeng endured earlier in their lives, kidney surgery must have seemed easy. In the 1970s Yeng lost her father, brother, and sister when the Khmer Rouge began its genocidal rule in Cambodia. As a teenager, Yeng often worked in the fields 20 hours a day, half starved. “If you didn’t finish your work, you didn’t eat or sleep,’’ says Yeng, 49. “I looked like I was 100 years old.’’

Hai Nguyen’s plight was similar but he managed a harrowing escape to Vietnam. Each ended up in a refugee camp — he for two years, she for four. Finally, they were allowed into the United States and ended up in Boston. Once Nguyen glimpsed Yeng at a friend’s house, he was smitten.

For 20 years, Yeng has worked two full-time jobs: as a teacher’s assistant with special education students in the Revere public schools, and for Sky Chefs food services at Logan Airport. For many years until his health failed, Nguyen, 51, also worked a double shift: as a machine operator at a telescope lens company in Woburn by day, cleaning offices at night. The couple bought a house in the Beachmont section of Revere. They sent their daughter to Vassar College and son to UMass Dartmouth.

Two years ago Nguyen was diagnosed with diabetes. He lost much of the vision in his right eye, and his kidneys began to fail. Three times a week for almost two years, he underwent dialysis.

“He was getting worse and worse and worse,’’ says Yeng. “I was scared I was going to lose him.’’

At Tufts, Nguyen wanted to sign up for a donation, but the wait for a cadaver kidney was at least three years. His kids wanted to donate; the parents said no.

“I’m old now; it’s OK for me,’’ says Yeng. But her blood type didn’t match her husband’s. The hospital told them about the paired swaps, and the couple signed up. They passed all the medical hurdles, and around Thanksgiving were told they’d be part of a three-way exchange.

In the early afternoon of Dec. 15, Dr. Richard Freeman at Tufts Medical Center made a J-shaped incision into Hai Nguyen’s pelvis. At 4:45, Nguyen came out of the OR, the new owner of Susan Scheibe’s kidney.

Meanwhile, his wife was having her kidney removed by Dr. Rohrer, just in time for Roberta Falke, who was waiting to receive it in the operating room next door. Dr. Jeffrey Cooper transplanted Vy Yeng’s kidney into Falke, who was wheeled out of the operating room at 6:45 p.m.

A long day was over.

The meeting
Weeks passed as the six patients recovered. Finally, three months later, they were ready to meet at the organ bank, which runs the kidney exchange program.

Upon entering the room, they scarcely seemed like strangers. Handshakes quickly turned to hugs. Tears flowed. Photos were snapped. The Scheibes’s cake — “Thank You for All Our Circle of Miracles’’ — was cut and coffee poured. The six compared notes: Who was back to work? Anyone exercising yet? Was there still pain?

Susan Scheibe quickly sought out Hai Nguyen. They embraced. “How are you?’’ she asked him.

“Much better than before, and I thank you very much,’’ Nguyen replied. He smiled. “I thought my donor was a man.’’

“Is it OK with you to have a female kidney?’’ she asked. They laughed.

Choking up, Peter Scheibe thanked Andrew Levey for giving him a future that includes “four children, six grands, and two more on the way.’’

Roberta Falke, who has Vy Yeng’s kidney, hugged her and told her what an important person she was in her life. As tears streamed down Yeng’s face, Susan Scheibe led her by the hand to a box of tissues.

Levey, the kidney specialist, recalled for the others how he has counseled hundreds of patients and their relatives about donation. “It was really a miracle for me to be able to do this. I feel I’ve received more than I’ve given.’’

They spoke of their recoveries. In the days after the surgery, both Peter Scheibe and Hai Nguyen had been readmitted briefly to the hospital — Scheibe for gastrointestinal problems, Nguyen with leakage at the transplant site.

Donors recover faster: The surgery is less invasive, and they’re in better health to begin with.

Andrew Levey was back to work within four weeks. After decades in the field, he says he’s a different doctor. “I think it enables the patients and me to connect with each other in a way we haven’t before,’’ Levey says.

His wife, who returned to work part time in mid-March, says the experience has also helped in her oncology practice. “I think it’s incredibly useful for doctors to be on the other side and experience feelings of helplessness and fear, sometimes desperation,’’ Falke says.

Susan Scheibe went back to nursing within six weeks; her husband went back to work on March 1.

“People say it took a lot of courage for me, and I say, ‘No, no, no. This is selfish,’ ’’ says Sue. “He is my soul mate, and I need this guy to be here. We were all lucky we three had healthy kidneys to give.’’

Vy Yeng returned to her school job within eight weeks, her airport job within 12 weeks. She’s a bit tired, but she figures it’s probably the two jobs rather than the one kidney.

Her husband hopes to return to his job in Woburn in May. He still has some pain, but he’s hardly complaining. “I was a dead person before. Now I’m alive,’’ he says. “How do you say thank you for that?’’

http://www.boston.com/news/health/articles/2010/03/28/harvesting_hope_from_a_giving_tree/?page=full