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Monday, October 10, 2011

In the News: Sister's secret vow saves life of Victoria man


What I love about this story from the Vancouver Sun (aside from the happy ending) is the fact that so many positives were born from the original tragedy of this family losing a loved one. There are so many lessons in this story, from the importance of organ donation to the ripple effect it can have. It's not often you read an organ donation story involving both deceased donation and living donation so this one is pretty special. Who knows-maybe indirectly this family will go on to save a 7th life (or more) by influencing people to let their families know their wishes in the even of a tragic accident. Or even perhaps someone who reads this story will be inspired to look at living donation.


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The last time I saw my 26-year-old nephew Regan Slater, he was lying brain-dead on a hospital bed in Manchester, England, as a transplant team cheerfully bustled around him.
I wasn't supposed to have seen that. Relatives are spared watching how quickly a medical team swoops in to begin harvesting organs. I had only returned to Regan's hospital room because of a forgotten key.
While initially taken aback by the light banter among nurses at my nephew's bedside, I left feeling hopeful. Something good was going to come out of our family's biggest tragedy. Without hesitation, Regan's parents had consented to him being an organ donor. My nephew's death after a biking accident on Aug. 19, 2006, meant five gravely ill people would live.
Three months after Regan died, my sister received a thank-you card from one of the anonymous organ recipients.
"This is one of the most difficult things I have ever had to write," it said. "I will never be able to understand the pain and loss that you must be feeling at this time. I am a father of two young children, a loving husband and son. My kidneys failed suddenly six years ago and I have been on dialysis ever since."
A second letter from a 57-year-old woman who received Regan's liver followed: "I have hesitated writing to you because I did not want to intrude on your grief. I am hoping that what I have to say may be of some comfort. ... Your precious gift has changed my life and given hope and joy to me and my family."
Their stories solidified what everyone in our family believed: that my sister, Denise, and her ex-husband Bert, had been right to give consent for their eldest child, of three, to be an organ donor. All of Regan's donated organs saved lives. But the story didn't end there. Five years after his death, Regan is being credited with helping save a sixth life, this time in his hometown of Victoria.
My other sister, Debbie Pemberton, had read the thank-you letters forwarded by the UK transplant team. Unbeknownst to the rest of the family, she promised herself that if she ever heard of someone who needed a kidney, she would donate one of hers in Regan's memory.
On Sept. 26, Debbie fulfilled that promise. My 53-year-old sister was wheeled into an operating room St.
Paul's Hospital in Vancouver to become a live transplant donor. Her left kidney is now inside a man she initially barely knew but today considers a good friend.
Mark White, a 50-year-old mechanic in Victoria, had been on dialysis for four years. He would sit hooked up to a dialysis machine for four hours at a time to remove the waste and excess water from his blood.
"It was brutal," said Mark. "It keeps you alive but it doesn't give you quality of life."
Mark suffered from polycystic kidney disease, an inherited disorder in which cysts form on the kidneys, causing them to become enlarged. His late father had it.
Last year, Mark's 52-year-old sister, Diane, died from complications while on the kidney-transplant waiting list. Mark's twin brother also has the disease, and Mark's 19year-old son is showing signs that he too has it. Since there is no treatment to stop cysts from growing, the disease gets slowly worse and results in kidney failure.
There are 325 British Columbians on the kidney-transplant waiting list. To get on the list they would have to have lost 90 per cent of their kidney function. If those not yet on dialysis were added, the number of people needing a kidney would swell to approximately 800 , said Dr. David Landsberg, medical director of the renal transplant program for B.C. Transplant.
Last year, about 120 kidney transplants were performed in B.C. - half from deceased donors and half from living donors. In two cases in 2010, individuals anonymously volunteered to donate a kidney to complete strangers.
Since everyone in Mark's immediate family suffers from kidney disease, no one could donate a healthy kidney. His wife, Anita, was willing but she wasn't the right blood type, and health issues also prevented her from being a donor. Mark had been told his wait could be up to eight years, and his time was running out.
As a temporary solution, both of Mark's kidneys were removed last January, tying him closer to the dialysis machine. His treatments went from three times a week to every other day. "I was fearful how much longer he would have," said Anita.
"That's when Mark and I had serious discussions about the future."
Mark and my sister were passing acquaintances when she decided to give him one of her kidneys. They had been briefly introduced years earlier by Anita, a volunteer at Greater Victoria Police Victim Services, where Debbie used to work.
D ebbie researched how to become a live donor and called Anita to find out Mark's blood type. Debbie didn't ask me, our sister, Denise, and our two brothers, so much as tell us of her decision. Everyone was on board. "My family was surprised.
Almost speechless but also supportive," Debbie recalls.
Although they were the same blood type, both Mark and Debbie had further testing to ensure they were a good match. "When Anita first told me, 'Debbie wants to give you a kidney,' I was just dumbfounded," said Mark. "All I could say was, 'Wow.' "
Mark and Debbie got to know each other as the operation date drew near, and she shared the story of Regan, Anita said.
Debbie's operation took place one Monday morning, while Mark and Anita waited nervously, hoping she would be OK.
Both Debbie and Mark were assigned their own medical teams, which were kept separate to avoid any conflicts of interest. The donor team's priority is ensuring the donor is safe, Debbie's donor transplant co-ordinator Cynthia Davies explained.
The rule applies until the moment a kidney is removed. If something came up that would be a detriment to Debbie's health, the operation would stop. Mark's operation would only begin after the donor team gave the OK for the recipient team to start. Luckily, both operations were a success.
Within hours, tests showed Mark wasn't rejecting the kidney.
Interviewed while the two were in hospital late last month, Anita cried when she talked about seeing an ultrasound showing Debbie's kidney functioning well in Mark's body. Mark, who was up and walking around the day after the surgery, said he still finds it surreal knowing he won't have to do dialysis again and is free to resume his old lifestyle.
When I consider this altruistic gift from my sister to someone she barely knew, I can't help but think back to our shared childhood. Debbie and I are just two years apart. We grew up in a family of five children in a southern Ontario community, with parents who immigrated from England. Our parents valued kindness and often talked about how we needed to support one another.
My sister didn't ask me to write this story. Both Debbie and Mark agreed for one reason - to encourage others to sign an organ-donation consent form. B.C. is one of the first provinces to provide an online registry, which takes only two minutes to complete and requires just knowing your CareCard number.
The day of their surgeries I went to the website (transplant.bc.ca) and did something I've been meaning to do for five years - I signed my organ-donor card.
kpemberton@vancouversun.com


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