Kathleen Roberts, now 19 years old, had a kidney transplant at BC Children’s Hospital four years ago.
“Before the transplant, I was going to BC Children’s every few months. I was just sick. I slept 16 to 18 hours a day. I had no appetite. I was 82 pounds and five feet tall. I was severely underweight and severely nauseous,” says Roberts. “The transplant made a huge difference. I have a normal appetite and I’m not sleeping the day away anymore.”
BC Children’s is marking the 300th kidney transplant and the hospital is the only centre in the province that performs organ transplants for children. BC Children’s cares for heart, liver, kidney and lung transplant recipients, and 15 to 18 heart and kidney transplants are performed at the hospital each year. The first pediatric kidney transplant in B.C. took place at BC Children’s in 1983.
As a baby, Kathleen was diagnosed with cystinosis, a multisystem genetic disorder that first affects the kidneys and eyes, but progresses to affect all cells, tissues and organs. She also developed Fanconi syndrome. It meant she was drinking about six litres of water and taking 78 pills each day to try to mitigate damage to her body.
She feels Dr. Kourosh Afshar and the team around her at BC Children’s are like family.
“It feels like I was almost co-parented in a way,” she says. “I just needed them so much. I even had teachers work on math with me at BC Children’s. I feel like I was raised there.”
Roberts thinks back to how hard her family struggled through the years. Her mother had breast cancer and had to undergo chemotherapy and her father donated his kidney for her transplant.
“I don’t think we were really processing it. We were in survival mode,” Roberts says. “I think it was really hard on my younger sister, who was 13 when I got my transplant. Everyone’s attention was on me and my mom. She was just starting high school at the time.”
Dr. Tom Blydt-Hansen, director of the Multi-Organ Transplant program at BC Children’s, has seen how tough chronic kidney disease can be on everyone at home.
“It can affect the whole family, who share in the day-to-day needs, care and challenges of a sick child,” he says.
For Roberts, the transplant was life-saving.
“The surgery was hard. It was 10 hours long,” she says. “But it made such a huge difference. You almost don’t realize how bad it was until you’ve had the transplant. I know people who were on a waitlist and didn’t make it.”
“For people on the transplant waitlist, organ donation and transplant gives them a new chance at life,” says Blydt-Hansen. “They can live well, travel and spend time with family.”
Because kidney transplants may only last 10 to 15 years, Kathleen will likely need another kidney transplant in the future.
There are currently three children on the waitlist for a kidney transplant in B.C. and five children waiting for a heart or liver transplant. BC Transplant, the PHSA program that oversees all aspects of organ donation and transplant in British Columbia, encourages all British Columbians to register their decision and have a conversation with their family to make their wishes known.
“When we meet with families who are facing the situation where their loved one could be a donor, we can then bring the form to them to show them their loved one’s wishes. In such a difficult moment, it can ease their burden knowing what their loved one would have wanted,” says Ed Ferre, interim executive director at BC Transplant.
You can verify or register your decision at taketwominutes.ca, or register at any ICBC driver licensing office or Service BC office.