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Wednesday, December 29, 2010

One kidney for Christmas, British Columbia, Canada

Langford teen lives a life of dialysis, medication and waiting for a donor

Erika Landry didn’t get her Christmas wish this year.

The 17-year-old Langford teen is one of nearly 300 people waiting for a kidney transplant in B.C.

She was hoping to have the operation over the holiday, but three days before becoming eligible she got an infection that required antibiotics and made a transplant impossible. She’ll have to wait another two months for her next opportunity.

“It’s hard to get that close and then find out you need to wait more,” she said.

Being younger than 18, Landry gets priority on the wait list, but precious few kidneys ever are donated. That means she needs to be healthy and off antibiotics at the right time when a matching kidney comes in. In the past two years she’s had no such luck.

For adults on the list, the average wait time is more than five years. Less than 100 cadaver kidneys are transplanted in B.C. each year.

“If more people signed up as organ donors, the wait wouldn’t be so long,” Landry said. “There’s a lot of people, like me, who have their life put on hold by a kidney disease.”

Landry didn’t even know what kidneys did in her body before she was suddenly diagnosed with p-ANCA vasculitis, which in a matter of three weeks caused her kidney function to rapidly decline to a point of working at 15 per cent of their normal rate.

At the age of 15, she quickly learned how important the organs are for regulating water and minerals in the body. Without properly functioning kidneys, she suffers from seizures, erratic blood pressure and constant fatigue.

She takes more than 18 kinds of medication in ever-changing doses. Her bedroom has a dialysis machine where she spends 10 to 12 hours running bags of liquid through her body to clean her blood each night. She’s had 18 rounds of chemotherapy and two blood transfusions.

She and her mother Joann live out of suitcases, always ready for an emergency trip to the BC Children’s Hospital in Vancouver.

“I never know how I’m going to feel one day to the next,” Landry said. “On a good day I can go to school, but that’s pretty rare.”

She’s only been to her classes at Belmont secondary about a dozen times this semester. While most of her cohort will graduate this year, she had to be held back a year. Most students don’t understand what’s wrong with her.

“I get a lot of blank stares when I tell people,” she said. “People think only old people get kidney disease.”

She doesn’t have a lot of friends her own age anymore. At school Landry gets teased because the dialysis causes her face and body to swell.

She used to play on high school teams for volleyball, basketball and soccer, but now she can’t walk on a treadmill without her blood pressure spiking to dangerous levels. Dating, going out with her friends at night, even getting a sun tan are things of the past.

“My best friends are the nurses at BCCH,” she said.

It’s hard for Joann to see her daughter’s childhood taken from her, though the experience has brought the two of them closer. Joann recently quit her job to care for the teen.

“My life is on hold too, while we wait for a transplant,” Joann said. “I tell all my friends to get on the donor list. A lot of people don’t realize their driver’s license decals (to indicate they’re an organ donor) are no longer valid.”

According to BC Transplant, only 17 per cent of people who support the concept of organ transplants have actually registered as donors. So, if she can’t have a transplant, Landry’s other Christmas wish is to help change that statistic.

“If we can raise the awareness of this disease and convince more people to become donors, a lot of lives could be saved,” the teen said.

To sign up as an organ donor or verify your previous registration, visit www.transplant.bc.ca.

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