The waiting game
Diabetes takes its toll
October 30, 2010
Barbara Turnbull
LIVING REPORTER
Colette Gicante endures dialysis four days a week, after which she can do little but sleep off the side effects of nausea, dizziness and sweating. Moreover, the taxing combination of dialysis and diabetes is sorely straining her heart. And as if that weren't enough, earlier this year doctors amputated first a toe and, later, her left leg below the knee, to stop the spread of a persistent infection caused by her condition.
Her survival clearly in free fall, Gicante clings to the conviction that somewhere there is a kidney and pancreas that could save her life. The 49-year-old mother of two has been on the transplant waiting list for almost three years, a delay that has inevitably put the lives of her family — husband, Carlo, daughter, Carleen, 26, and son, Nathan, 24 — on hold.
“Diabetes owns you,” says Gicante, who lives in Thorold, Ont., of the rigours of dialysis and her wait for a transplant. “I'm not sure what feeling good is any more. I just have different levels of bad.”
Gicante was diagnosed with Type I diabetes, the most serious form of the disease, when she was 8 (it typically makes its appearance in children and teens). The pancreas fails to produce the insulin required to convert glucose into energy, leading to kidney failure, among other problems. Dialysis cleans the blood when the kidneys can no longer do so.
It's an insidious disease, says Andrea Norgate, the coordinator of the kidney-pancreas transplant program at the Toronto General Hospital, because “diabetes affects so much, it's not just your kidneys.” Patients must monitor blood sugars up to 12 times a day and inject insulin up to six times a day. Diabetes can cause heart disease, blindness and circulation problems that lead to ulcers, infections, amputations and more.
The diet of dialysis patients is severely restricted, even more so than diabetics' — limited protein, no grains, only fruits and vegetables low in potassium, strict fluid intake, no salt. But that's only part of it. “It's not just about food and insulin,” says Norgate. “If you can't feel when your sugar goes low (while sleeping, for instance), it can be life-threatening. It's a full-time job it seems you can never succeed at.”
And though it saves lives, dialysis itself stresses the body. Says Dr. Jeffrey Schiff, a nephrologist who is the medical director of TGH's kidney-pancreas transplant program: “We know that having diabetes and being on dialysis is unfortunately a very bad combination for the heart,” often necessitating angiograms, angioplasties and even bypass surgery before a transplant can be safely undertaken.
Gicante has little recourse but to wait (the average wait is four years). There are 45 people in the province awaiting kidney-pancreas transplants and another 19 awaiting a pancreas alone through a new program available in Ontario only at TGH ( www.torontopancreastransplant.compls). Patients in that group may already have had a kidney transplant, typically from a living donor. Or they have hypoglycemic unawareness, a condition in which their kidneys function but they can't tell when their blood sugar drops, an ever-present threat. A new pancreas produces insulin normally, Norgate says, prolonging the health of the transplanted kidneys and minimizing future damage.
Ontario has an exceptionally low rate of organ-donor registration of 17 per cent; the GTA's rate of 13 per cent is worse. At any time, about 1,500 people in the province are on a transplant waiting list, some of them remaining on it for close to 10 years. A mere 547,703 Ontarians have registered as organ donors. Four million have not.
Compare those dismal figures with the donor rate in the United States for organ, eye and tissue: Donor Life America says that at the end of 2009, 86.3 million people were enrolled in state donor registries. That represents 37.1 per cent of U.S. residents aged 18 and over and an 8.2 per cent increase from a year ago.
Colette was diagnosed in the late 1960s after her parents, Roy and Elda Buzdygan, noticed she seemed tired all the time. After the results of the blood test came back, they were able to trace the disease to the child's paternal grandfather, who died young from diabetes complications. The Buzdygans took classes at a local hospital, learning how to care for and guide their child. Elda took charge of Colette's diet, Roy dealt with administering the injections.
She never rebelled, her mother recalls, though she did occasionally cheat. “You know how kids are,” she says, laughing. “You had to overlook it, I didn't want to put pressure on her. She learned and the older she got, she knew what she could have and couldn't have.”
Until her kidneys failed, Gicante refused to let diabetes control her life. She married Carlo Gicante when she was 22 and had her daughter the next year, her son two years later. “He's been my rock, too,” Gicante says of her husband of 27 years. “I don't know what I would do without him.”
She was fully involved in the children's upbringing, attending every game and event, volunteering at the school and helping other kids with reading problems. Every year there was a family vacation.
Carleen recalls a happy and normal childhood until the day, when she was in high school, that she came home to find her mother passed out from low blood sugar. Since then, she has been closely involved in her mother's health. “I feel like I have to be here for her,” she says.
She looks forward to having a place of her own, but won't move out until Gicante has had her transplant. A social-services worker, she drives her mother to dialysis and other appointments.
This sits uneasily with Gicante, though she knows she needs the help. “She can somehow tell by my eyes that my blood sugars are dropping,” she says, sometimes as long as an hour before it shows up on a test. Even so, she says she has regained consciousness a number of times to find paramedics giving her an intravenous dose of saline and sugar.
But she resents her dependence on her daughter and son. “I'm a grown adult, but here I am being watched all the time by my kids. It's not a normal life. Everything is planned around how I feel.”
The toe and leg amputations earlier this year were a further setback because she couldn't be eligible for a transplant until she had recovered. She is about to be fitted with a prosthetic and foot and begin rehab.
It's tough watching her mother battle extreme fatigue, insomnia and chronic pain, Carleen says. “It's been hard on the whole family. Everyone tries to put on a strong front, don't want to bring it up because it's so tough to talk about.” She worries her mother will get so worn down she'll give up.
For Gicante, the amputations were a blow. “All those things you hear about diabetes, and it's happening,” she says. “You never think it will happen to you, but it does.”
She sometimes echoes her daughter's concerns. “There is the fear that I'm not going to make it to the transplant,” she says, her voice breaking.” Then she rallies. “And then I think I am going to make it and I'm going to have a different life altogether.
“It's going to be a new beginning for me.”
Reach Barbara Turnbull at bturnbull@thestar.ca or @barbturnbull on Twitter.