Kidney donors make it easier for recipients when they step forward on their own

[okarol]

The gift of life, no questions asked
Kidney donors make it easier for recipients when they step forward on their own
 
Jim Gibson
Times Colonist

Monday, December 10, 2007

When real estate agent Colin Walters needed a donor kidney, he sent out a flurry of letters explaining his situation to a network of amateur sports and business colleagues. Ken Merkley and Anne Paterson-Welsh were spared the distress of asking someone for a kidney.

Their donors fell unshaken from the family tree, something Walters could not anticipate for himself. Both his parents and brother are dead, and any cousins are prone to the same kidney disease he has.

For those with diminishing kidney function, the alternatives to a transplant are bleak: death or non-stop dialysis, something which can mean three-times-a-week hospital visits. The choice between the two for Walters -- and others -- came down to "how much do you want to live and how much do you want to enjoy the planet." But asking for a donation is hard.

"One is very, very reluctant to ask someone for a kidney," says Merkley, B.C. branch president of the Kidney Foundation of Canada.

Parents in particular are hesitant to explain their need to children, says Merkley, who over 18 years has had both types of kidney transplants -- when the donor is alive, and when the donor is deceased (called cadaveric).

Parents hold back, not wanting to interrupt their children's post-secondary school or career-building years, he said.

The transplant procedure is harder on the donor than the recipient, according to Victoria nephrologist John Antonsen. The donor kidney is reached through the ribs at the donor's back and then placed near the top of the recipient's pelvis.

A donor might need six to eight weeks to recover, according to Merkley. At the most pragmatic level, this recovery time could mean loss of income, something his daughter Christina avoided thanks to a supportive San Francisco employer. Others not so fortunate might qualify for medical leave under federal employment insurance, tap into banked sick and holiday days, or receive some assistance from the kidney foundation.

No one should feel pressured into agreeing to be a donor, Walters stresses.

"Whatever reason you come up with [to say no] is legitimate," he says.

To counter any apprehension around live donor transplants, Merkley's Victoria foundation chapter recently staged a how-to forum for both potential recipients and donors.

There is good reason to be proactive in seeking a kidney donor, according to Antonsen. A live donor can mean a transplant within six to 12 months compared to possibly an eight-year wait for a cadaveric kidney. Also, kidney failure is higher with a cadaveric kidney.

Even so, Walters, a peer counsellor at the Royal Jubilee Hospital's Kidney Care Unit, knows how hard it is to seek a donor kidney.

"My biggest concern was offending someone," the 55-year-old recipient says. Rather than put potential donors on the spot, he avoided contacting them face-to-face or over the phone.

Kidney care unit social worker Linda Church sees the reluctance to ask as stemming from "attitudinal barriers and medical barriers." These deterrents can range from not wanting to put someone through the medical ordeal to fear of obligation to even enthno-cultural beliefs.

A transplant crisis propels a family's strengths and weaknesses to the fore, according to family counsellor and kidney recipient Paterson-Welsh. She has had two transplants over two decades. Two sisters gave her kidneys.

Without telling her, her middle sister contacted Paterson-Welsh's nephrologist asking how she could give her a kidney. Similarly, Merkley's daughter, unasked, started the medical process to qualify as his donor. Church cites studies finding as many as 86 per cent of living donors do not wait to be asked.

There is no set recipe for securing a donor, Church says. A wide network of family and friends is helpful, like the one Walters had between his slow-pitch ball league and Victoria Real Estate Board members. His letter potentially reached almost 1,500. Only three responded -- one real estate agent just curious about transplants, and two ballplayers. Only one of those two met the stringent medical and psychological testing.

Walters's transplant was scheduled to go ahead in two weeks when his approved donor's new boss refused the time off. Walters, who has no immediate family, was desperate, sending out an e-mail to nurse Lorrie Brooks, one of several who had earlier said, "if [the donor] doesn't work out, give me a call."

Many regard donors such as Brooks and Christina Merkley as amazing.

"People make a big deal out of this," says Christina, who thinks they shouldn't, believing what she went through pales besides what she was able to do for her father. Brooks also downplays her role, saying as a nurse "you know the hazards and the benefits."

Both women recuperated quickly, returning to work and restarting active lifestyles. Only Brooks's golf swing was briefly hindered. Barely nine months after his transplant, Walters played in the B.C. slow-pitch championships.

Neither woman worried about post-op medical complications. Any that exist are mostly cosmetic, says nephrologist Antonsen. Donors do, however, undergo lifelong monitoring of their remaining kidney.

Both women see the extensive medical and psychological testing as good insurance against future complications.

"They only select the healthiest," Christina Merkley says.

Donor motivation is heavily scrutinized by the B.C. Transplant Society, which oversees the approval process. Donors expecting anything in return are weeded out. Altruism is the only acceptable reason.

"It's a gift without attachments," Brooks adds.

"I don't think of it as my kidney in his body. It's his to do what he wants," but Walters believes he has an obligation not to risk his health.

"She gave me a life. She gave me a chance," Walters says about Brooks, who was a social acquaintance and not a close friend. He now greets the 51-year-old with a hug and calls her "sister."

"I've a part of her in me. She's a blood relative," Walters says.

For more information, contact the B.C. Transplant Society at 1-800-663-6189 or the Kidney Foundation of Canada, B.C. Branch at 1-800-567-8112.

A DIFFICULT REQUEST

Why kidney recipients are reluctant to ask potential donors:

- Aware of existing kidney disease or diabetes in their family

- Unwilling to burden them when building careers or finishing education

- Don't want to keep them away from work or family

- Lifelong sense of indebtedness

- Worry transplant won't succeed

- Own fear of surgery

- Ethno-cultural beliefs

- Unaware of advantages of a live donor

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