In the world of organ donation, there are those who grieve and those who rejoice.
“Karen, the hospital in Winnipeg wants you there now!” Unlike most kidney transplant candidates, 30-year-old Karen Genaille didn’t get a dramatic phone call from the hospital saying that an organ was available. Genaille, who lives in Pelican Rapids, a native reserve community 300 kilometres north of Brandon in western Manitoba, doesn’t have a phone. Notification came in the form of her brother, Frank, hollering through Genaille’s bedroom window in the early hours of a sleepy Sunday morning in late July.
Genaille jumped out of bed, threw some clothes in a bag and sped off by car with her older sister, Grace, to the nearest airport in The Pas – almost 75 minutes away – then hopped into a flying ambulance for the 90-minute flight to Manitoba’s capital. Less than 20 minutes after landing, slightly out of breath, Genaille rushed into a laboratory on the fourth floor of the Health Sciences Centre (HSC).
She’d left her sons, Wallace, 10, and Billy-Joe, 8, at home with their father, Pearly. She’d temporarily abandoned her job as a social worker with the Cree Nation Child and Family Caring Agency. Waiting in the lab, she’s frightened; there’s a lot of uncertainty ahead. “I hope it works this time,” she says. “The last time it was a false alarm.” (The kidney available was not a match.)
Two years ago, both Genaille’s kidneys were destroyed by lupus, a disease that provokes the body’s immune system to attack healthy tissue. The function of the kidneys is to make urine, removing liquids from the body that could be harmful if allowed to accumulate. To ensure that her body didn’t poison itself, Genaille had to administer self- dialysis four times a day, hooking a tube inserted in her abdomen to a fluid supply that moved through her body, draining off impurities. Self-dialysis is a slow and cumbersome process. When Genaille was away from the house, it was always difficult to find a quiet, private place to do it.
The day before rushing to the hospital, Genaille had been on a family outing to the Swan River rodeo, and had lugged along the usual paraphernalia: 18 kilograms of tubes, swabs, bottles and bags of fluid. The prospect of never having to go through that again seems to strengthen her resolve: she rolls up her sleeves and the lab technician withdraws some blood from her arm. These samples will ensure that there is compatibility between the donated kidney and Genaille’s body.
Once the blood is drawn, it will take several hours for the final tests to be completed. Meanwhile Genaille hooks herself up to the dialysis tubes, perhaps for the last time.
A good match means a major operation and at least two months away from home. A poor match means going back on the waiting list, dialysis and a nine-hour bus trip back to Pelican Rapids. Almost as if to protect herself from what lies ahead, Genaille snuggles under a sheet on her bed, pulls it up tightly around her and tucks it under her chin. Her sister Grace sits near the end of the bed, softly drumming her fingers on a table. Finally, a nurse tells Genaille that the blood work tests are positive; the operation is scheduled to begin at 5:30 p.m.
There’s little time to be wasted. Genaille’s room starts to get busy – doctors discussing the procedure, nurses hooking up IVs and filling out charts. At 4:57, the sisters kiss: “See ya after.”
Just seven hours before Genaille arrived at HSC, a person in the emergency ward was declared brain dead. All Genaille knows is that the family consented to organ donation and that one of the donor’s kidneys is a match.
In transplant centres across the country, there are those who grieve and those who rejoice. Starr Beghin, a nurse and transplant co-ordinator with the Manitoba Transplant Program at the Health Sciences Centre, understands the emotional toll better than most. Her job is to approach families who have just learned that a loved one has died, and ask if they are willing to allow an organ or tissue donation.
It’s gut-wrenching work. Discussing it in the HSC cafeteria, this experienced health professional is wiping away tears. “I have every admiration for the donor families and what they go through,” Beghin says. “In the throes of grief, they offer the gift of life. One donor family told me that when their baby was declared brain dead, they stopped praying for their child and turned their prayers around for the recipient of the organ. It’s a privilege to work with these people. Their nobility touches the soul. I’m honoured to be part of it.”
Unfortunately, the supply of donor organs never meets the demand. In Canada, at any one time, there are approximately 2,000 people waiting for a kidney transplant and 300 waiting for other vital organs. Those waiting for kidneys have the life-prolonging option of dialysis; those waiting for a lung, a heart or a liver have no such options. Twenty to 30 per cent of those on transplant waiting lists will die before an organ becomes available. It’s a cruel lottery: the winner gets to go on living; the loser dies.
It’s a creamy yellow colour, about the size of a small fist. A few minutes ago, it was retrieved from a red and white Coleman picnic cooler and carefully trimmed of fat. This unpretentious-looking chunk of flesh is the stuff of dreams for thousands of Canadians. It’s a human kidney, and it’s about to be transplanted into the body of the young woman anesthetized on the metal table.
On this early evening in July, the operating room in the Health Sciences Centre is quiet, except for the sanctuary-like hum of equipment interrupted by the nasal beep of the heart monitor. The anesthetist pops a CD into the player. To the background sounds of the heavy-metal band Metallica, Dr. Pierre Williot, a transplant surgeon and paediatric urologist, goes to work.
At 6:30, he places the precious organ in a bowl, sprinkles shaved ice over it and carries it to the patient. He carefully removes it, slowly lowers it into an incision in the patient’s lower left abdomen and starts attaching it. First, he sutures the vein. When he ties off the tiny thread, his green-gloved hands flicker like butterflies practicing a ballet. “One of the first things you learn in surgeon school,” he quips, “is to how to tie knots.”
A nurse changes the CD, and the soundtrack from The Lion King fills the room. At 8:10, Dr. Williot finishes sewing the artery, connecting the patient’s blood supply to the new kidney. Almost instantly it starts to change colour, sliding from pale yellow to a deep, rich, healthy pink. At 8:17, two small drops of urine appear at the end of the ureter, the tube which connects the kidney to the bladder. There’s a moment of silence, as all eyes focus on the tiny dots of liquid. A nurse cheers. Williot is matter-of-fact. “That’s a good sign,” he says. By 8:40, the kidney is completely attached. By 9:05, the patient’s incision is sewn up. Karen Genaille has a new lease on life.
It’s two days after the operation. Genaille is in her hospital room missing her boys. “I was lonely for them and saying to myself, ‘Please show up.’” To her surprise and delight, they do. Billy-Joe, the youngest, climbs up on his mother’s bed, slides under the sheets and tells her, “Move over. I missed you.”
“I love you hard,” he says, his favourite expression of affection.
After a week, Genaille is allowed to leave the hospital. Since daily clinic visits are a must after a transplant, she and the boys move in temporarily with her sister-in-law, Lily, who lives in Winnipeg.
Within the first month, Genaille has a minor rejection episode. It’s successfully controlled with drugs.
After seven weeks, Genaille returns to HSC to have the tube she once used for dialysis removed. It’s a big day; it means that as far as medical personnel are concerned, the kidney is there to stay.
Two months after the operation, Genaille is allowed to go home.
For Karen Genaille, as for any transplant recipient, there are no guarantees. A successfully transplanted kidney usually lasts between 10 and 20 years, but there’s always the chance that the body will reject it. Genaille will have to take a combination of antirejection drugs for the rest of her life. It’s a high price to pay: the drugs have serious side effects, including increased body hair growth, facial roundness, a hump-like growth on the back and muscle weakness.
Genaille is more than willing to pay it. She can now go with her boys to baseball games, something that was so difficult before that it rarely happened. Work will also be easier without having to take time for dialysis. She can now takes showers and baths and go swimming, activities difficult or prohibited when the dialysis tube was still inserted in her body.
She is very much aware that her new life, her new freedom, come at a great cost. “I’ve written to my donor family,” she says. (Transplant co-ordinator Starr Beghin passed the letter on.) “I thanked them for giving me another chance at life. Maybe it will help them feel some peace of mind.”
Christmas will be extra-special this year, Genaille says. As she celebrates the season of joy with Pearly and the boys, she’ll be thinking about that “Christmas” in July.
From the archives:
An article written by Bramwell Ryan for Homemaker’s