Woman gives a kidney, not knowing who will receive it

Woman gives a kidney, not knowing who will receive it

Published: Wednesday, June 16, 2010, 4:53 AM Updated: Tuesday, June 15, 2010, 6:10 PM
Special to The Oregonian Special to The Oregonian

He's in high tech, she's a nurse. He's 43, she's 44. Both are married and live in the Portland metro area.

They have never met, and neither knows the other's name.

Yet their lives are namelessly joined by an O-positive blood type and what happened on the morning of May 10 as they lay unconscious in adjacent operating rooms at Legacy Good Samaritan Medical Center.

Two surgical teams worked in tandem, while the patients' families sat in separate waiting areas. In one operating room, a team removed the woman's left kidney; in the other, a transplant team prepped the man to receive it. A surgeon carried the kidney, packed in slushy ice in a stainless steel bowl, from her operating room to his.

The most remarkable thing about that transplant is not that both patients are recovering smoothly or that the recipient's only working kidney now sits low in his left abdomen or even that it saved his life.

What's most remarkable is that the kidney came from a perfect stranger who voluntarily gave it up without knowing who would get it.

The shortage

Kidney transplantation, which began in 1954, has become surgically almost routine. Its main limitation is the supply of donor organs, which has remained stuck while the number of people with kidney failure rises, spurred by diabetes, high blood pressure and obesity.

For more information
Call the Anonymous Living Donor Program of the Pacific Northwest Transplant Bank at 503-494-7856. Website: www.pntb.org\aldp.html
Prospective donors must be legal residents in good health, with insurance. They must go through extensive physical and psychosocial screening. Among the conditions that exclude donation are high blood pressure, diabetes, cancer, infections and obesity. Donors must be willing to accept the risk of major surgery and possible blood transfusions.
More than 80,000 nationwide, including more than 500 Oregonians, wait on kidney transplant lists. The number of kidney transplants in Oregon peaked seven years ago at 254.

To stay alive, patients with kidney failure must undergo dialysis three times a week, to flush toxins from their blood. But dialysis is only a temporary solution.

In Oregon, three centers do kidney transplants: Oregon Health & Science University Hospital, Legacy Good Samaritan and the Portland Veterans Affairs Medical Center. Altogether, they performed 224 last year. A majority of the kidneys came from cadavers, but more than one-third came from live donors -- usually a relative, close friend or co-worker who knows the recipient well.

Since 2000, some leading medical centers have started allowing kidney transplants from carefully screened live donors without any biological or emotional tie to the recipient. The numbers remain tiny, but every new donor means a potential life saved.

Oregon has completed seven of these -- one each in 2007 and 2008, two last year and three so far this year, including the one May 10.

The donor

First, she Googled.

As a former critical care nurse, she had heard about anonymous living kidney donation, and last fall she decided to check it out.

"I always thought that if I knew anybody who needed a kidney, I'd donate in a heartbeat," she says. So why not do it for a stranger?

She knew the idea would strike her husband as outlandish, so she didn't tell him until she had pre-registered, called the Pacific Northwest Transplant Bank and established that she met the preliminary qualifications.

Her husband recalls the day he came home from work, and she told him her idea: "I was like, yeah, right!"

"She comes up with a lot of ideas," he explains, shaking his head. "I knew it wouldn't happen."

"Yeah but I'm also very determined."

"Yes, you are," he says, and leans over to kiss her on the cheek.

They watched the video, studied Web sites, met with transplant coordinators and discussed it with their grown children. Her husband overcame his initial fear that she would be putting herself and her family at unnecessary risk. "I began to realize what it could mean for another person."

By January, she had passed all the tests to be a donor, and it was time to wait for the right match.

On May 10, she got to the hospital at 7 a.m. and went into surgery around 10. As she lay on her right side, surgeons removed her left kidney. To reduce recovery time and the risk of infection, they operated laparoscopically through four small scalpel cuts, rather than one big incision.

She spent three days in the hospital. To preserve her anonymity, she stayed in the neurology unit, where her name was disguised as "Smith."

And the reaction from friends? "I get a lot of, 'Why would you do that?' Or: 'I don't think I could do that.'"

While her donor surgery offered her no medical benefit, she says it's not without reward. "I have the satisfaction of knowing that something I did made a huge impact on someone else's life," she says. "I'm a nurse. I take care of people."

The experience was not pain free, she notes. "But every time I got up out of the chair, and it hurt, I thought: 'Well, the recipient probably hurts too, but he's also feeling really good.'"

The recipient

By spring, he had been in kidney failure and on dialysis for 26 months and on the transplant waiting list for 20 months. Even dialysis could no longer make up for his failing kidneys. His energy flagged, his morale sagged and he could no longer work. He couldn't concentrate or even sit still for long.

With no ideal donor match in his family, he had given up hope of a live donor. All he could do was wait for an organ donor to die.

The call came on a Thursday. He recognized the number on his cell phone call list and returned it promptly, trying not to get his hopes up. On the phone, Legacy transplant coordinator John Fallgren said they had located a kidney. It's kind of a unique situation, he added. The donor was alive -- and anonymous.

Only later did the implications of that word strike home. "I couldn't believe someone would do this," he says. "It caused me to kind of re-evaluate my worldview: Someone gave that to me."

The transplant team scheduled the surgery for the following Monday, and it went flawlessly.

"I started to feel better almost right away," he says. The "brain fog" that overtook him as his kidneys failed has lifted. He has "so much energy I have to slow myself down."

He recovered quickly enough to go home after four days. He still walks gingerly and can't lift more than 10 pounds. Surgeons left his failed kidneys in place, because to remove them would pose more surgical risk.

"I have three kidneys -- one that works," he says.

He noticed that others around him also celebrated. The ultrasound techs were giddy as they checked the scans of his new kidney -- "just like it was a baby!"

"Hope really helps people," he says. "I'm just the lucky one who got the kidney, but to see other people inspired by it is very moving."

And the question has crossed his mind: Would he be capable of such a gift? It's moot, of course, because of his health. But would he?

"The answer is, I don't know."

The volunteer on a mission

Oregon's anonymous living donor program is the brainchild of a relentless 62-year-old volunteer named Ginny Baynes. She had a kidney transplant at OHSU in 2004; the donor was a close friend.

After she recovered, Baynes started studying how to reduce the waiting time for kidney transplants -- and lobbying for a new way to add to the donor pool through anonymous live donation. She pitched her idea to officials from every group involved in kidney transplantation in the Northwest.

"I just didn't give up," she says. "I knew what it was like being on dialysis and having to wait for someone to die to get a kidney."

"I admit I was skeptical," says John Niemitz, manager of transplant services at Legacy. He and others worried that there would be too much work for too little gain -- 50 candidates might have to be screened to find one eligible donor. Besides, how many would risk major surgery for an unknown recipient?

"But Ginny finally convinced us," Niemitz says. When others objected that it was too costly and time-consuming, Baynes agreed to answer the phones and do the initial screening. When people call the Pacific Northwest Transplant Bank to inquire about anonymous donation, Baynes is the first person they talk with. She refers promising candidates to OHSU or Legacy for further evaluation.

From that point, the screening gets intensive: a complete physical, blood tests, scans and interviews with doctors, social workers and a psychologist.

"We have to make sure they're making this decision with a lot of knowledge and a clear head," says Laurie Pharr, a nurse and kidney donor coordinator for Legacy. "Do they really understand what they're getting into?"

The donor's costs are covered by the recipient's insurance. But donors must be willing to undergo what Fallgren calls "the only surgery in medicine that has absolutely no benefit to the patient." And arrange time off for a four-week recovery.

At Legacy, the five anonymous donors so far range in age from 28 to 63. They include a firefighter, an interior designer, a nurse, a doctor and a computer consultant.

Anonymity is a keystone of the program, to keep families from pressuring each other -- and to relieve the donor of guilt in case the transplant fails. In keeping with that policy, The Oregonian agreed not to identify by name either the donor or recipient in this story.

Nor can the donor set any limits on who gets the kidney. "We have to be totally fair," Pharr says. "You can't say, 'I don't want it to go to a redhead,' or whatever."

The kidney goes to the person who needs it most, matches it best and is next on the list.

Will they ever find out?

So far, none of the live anonymous donors has felt a need to know who received their kidney.

But both donor and recipient in this case say they are curious about the other's identity. The recipient and his wife have drafted a letter of thanks to the donor, offering to communicate further through the transplant program if she wishes.

"I'm very curious," he says, "but I also respect their privacy. I'm fine either way."

For her part, the donor says: "I'm dying to know."

It will be up to transplant coordinator Pharr to screen their introductory letters, make sure the motivation is unforced and mutual, and then act as a go-between if both sides ask to meet.

-- Don Colburn

http://www.oregonlive.com/health/index.ssf/2010/06/woman_gives_a_kidney_not_knowi.html