Desperate wait for a kidney donor places huge strain on Nanaimo resident, family
Nov 27 2012
Stacey Legault lifts his shirt slightly to show the end of a tube extending from his abdomen. It is a lifeline that helps perform the function his failing kidneys cannot, and he is hooked up to it once daily and for nine hours every night.
At 42, he acknowledges life has turned out a little differently than he had expected. He faces his daily challenges - which are considerable - with a shrug and a weary smile. He's never been a complainer, says Kelly, his wife of 15 years, gazing at him with quiet admiration.
There are 463 British Columbians currently on the transplant waiting list in B.C. More than 80 per cent of those on the list, like Stacey, need a kidney. Kidney disease is one of the fastest-growing illnesses in B.C., according to B.C. Transplant and the B.C. Provincial Renal Agency, who held a joint "Kidney Days" conference in Vancouver last month to address the issue.
It could take eight years or more before Stacey finds a kidney, so Kelly has taken to the Internet for support in her search for a donor. Life on the waiting list can be a gruelling marathon, as dialysis has varying levels of effectiveness depending on the patient. It takes its toll physically, but also in unexpected ways that take the form of financial and emotional strain.
According to B.C. Transplant, more than 85% of the population in B.C. support the concept of organ donation, but only 18% are signed up as donors.
He was like an artist when he went up the tree, it was amazing to watch him," said Kelly, of Stacey's previous job as an arborist. "Two chainsaws going, climbing the tree. That's what's been the biggest shock I think, is that he used to be so strong. Now just getting out of bed is a chore."
It's not unusual for him to end up sleeping for 20 hours a day, said Stacey, who has been told his kidneys are functioning at eight per cent capacity.
"But it's amazing what that eight per cent does," he added with a smile.
Diabetes is something Stacey has always lived with, and was first diagnosed at three years old. It was in 2009 that Stacey first went on dialysis, following a stroke caused by high blood pressure complicated by his diabetes.
Over the last two years "he's lost probably 40, 50 pounds," said Kelly. "And he didn't have any weight to lose, he was all muscle from tree climbing. So that muscle fatigue is probably what makes him feel weak, too."
Aside from the fatigue, Stacey has to deal with nausea, vomiting up to four times a day.
"You just get used to it," he said. "It just becomes normal."
However it is a new kind of normal for the couple, who were "best friends" all through high school, said Kelly.
"I told Stacey all my boy problems," she said. "And he would listen to me. He was always the coffee guy, the guy that all the girls would go to coffee with."
Kelly said that this experience has bonded them, but that they have always been close.
"We've been crazy in love with each other, always," she said, looking at him with tears in her eyes.
"I just want him for a little bit longer. I don't feel like we've had enough time together."
Stacey's health problems have also been hard on their teenage son Levi, who misses going fishing and snowboarding with his father. They have tried to keep up with their love of camping, but the dialysis machine is bulky and cumbersome and the fear of infection is ever-present. Peritonitis is a common cause of complications with peritoneal dialysis because of the constant presence of a tube in Stacey's abdomen.
When Stacey first went on dialysis, Kelly worked four jobs to support the family, on double shifts four days a week. They had to sell their real estate, boat and trailer to keep their home.
"There were some hard decisions," acknowledges Kelly.
Friends have also stepped in. Graphic designer Jim Teneycke, who has known the couple since their high school in Ladysmith, launched a website this week to help the family find a living donor for Stacey. On Sept. 18, B.C. Transplant supported a move by Facebook that allows people to post their organ donor status on their timeline, which immediately led to an increase in organ donor signups, they stated.
Kelly said part of her drive to create awareness is also motivated by her friend and co-worker Kailash Parmar, who died Nov. 11 while on the waiting list for a double-lung transplant.
Doctors have recommended finding a live donor for Stacey, which involves a fairly rigorous screening process. Stacey's cousin is travelling to Vancouver on Dec. 12 for testing to see if she would be a suitable donor. Her mother successfully donated a kidney to Stacey's brother, also a diabetic.
"When you're waiting for a kidney you don't have to wait only for a deceased donor," said Peggy John, manager of communications for B.C. Transplant. "Living donation is a very viable and successful alternative."
Another avenue, if Stacey finds a person who wants to donate but is not a match for blood and tissue type, is to be a part of a living donor paired exchange. The program seeks to match up people with similar situations all over Canada.
"Recently we had a three-couple situation," said John. "Somebody from Saskatchewan gave to the person here, the person here gave to someone in Ontario, that sort of domino effect."
Nanaimo Regional General Hospital will host an event during the week of Dec. 17 called Operation Popcorn.
"The people in the ICU, they see the tragic side of organ donation, and they never get to see the power of what the donor has done," said John.
The event brings organ donor recipients into the hospital to give tins of popcorn to hospital staff to express their gratitude.
Once Stacey finds a donor, he will be required to spend three to four months in Vancouver, said Kelly. A beer and burger night to raise funds for Stacey's family to stay in Vancouver during the operation and recovery has been scheduled for Jan. 12 at the Foundry Pub, 125 Comox Rd.
For information on Stacey and his family visit www. myfamilyneedsakidney.com
For information on organ donation visit www.transplant.bc.ca.
ORGAN DONOR NUMBERS
855,390 Number of people registered as organ donors in B.C.
463 Number of people on the transplant wait list in B.C.
377 Number of those waiting for a kidney
175 Number of kidney transplants performed to date in B.C.
104 Kidneys from deceased donors
71 Kidneys from living donors
18 Number of people who have died while
on the waiting list in B.C. in 2012
COMPILED BY DAILY NEWS