When the kidneys fail

Most patients face dialysis or death, and donor organs are in short supply

JANE O’HARA September 17 2001

When the kidneys fail

Most patients face dialysis or death, and donor organs are in short supply

JANE O’HARA September 17 2001

When the kidneys fail

Most patients face dialysis or death, and donor organs are in short supply



About 14,000 Canadians with kidney failure are being kept alive by dialysis, a number that has doubled in the past decade. Theirs is not an enviable lot. There is no cure for kidney failure, the treatment is punishing, and once you are on dialysis, there are only two ways off—death or a kidney transplant. Across Canada, only 30 to 40 per cent of dialysis patients are waitlisted for transplants from deceased organ donors, but kidneys are so scarce it can take up to a decade to get one—if the patient survives that long.

That prognosis was simply unacceptable to Janet MacNaughton, a robust, active 60year-oldfrom Hornby Island, in the Georgia Strait ofJVancouver Island. Felled by kidney failure early last year, she endured a few months of what she terms the “hell” of dial-

y sis, then set her mind to getting a kidney no matter what it took. On Aug. 27, by then barely able to function, she received a kidney from a closefriend in a four-hour operation in Vancouver. Her story:

Janet MacNaughton knew she was in trouble during a game of tennis in May of last year. Most days she could play for two hours without tiring, but this time she quit after 45 minutes and had to be helped to her car. She saw her doctor the next day. Blood tests showed she was perilously close to complete kidney failure. One critical test, measuring creatinine—a waste product in the blood—was 10 times the normal level. Looking at her results, her doctor told her: “I’m amazed you’re still walking around.” He encouraged her to start dialysis in Vancouver immediately. MacNaughton had been told five years

earlier that her kidneys were failing and she might need dialysis. Then, she says, she was able to reverse the deterioration using a combination of foul-smelling Chinese herbs, meditation and a strict diet. But this time the situation was grim. MacNaughton, who worked as an artist most of her life, had run a bed and breakfast on Hornby Island since 1995. She was wellknown in the community for organizing an annual sand-castle competition and helping to organize a social program for Hornby’s elderly residents. Suddenly, those days were over.

Kidney disease is a progressive, often silent adversary. Many sufferers feel fine or have vague flu-like symptoms—fatigue, nausea, headaches—even as their kidneys are silendy shutting down, in most cases in association with diabetes or high blood pressure. Like most Canadians, Mac-

Naughton knew almost nothing about dialysis. What little understanding she had came from photos in newspapers—patients lounging in comfy recliner chairs, reading books, seemingly enjoying their downtime. “When my doctor said I had to go to Vancouver for dialysis,” she says, “he said it as though I had to be fitted for new shoes.”

As medical treatments go, dialysis seems both miraculous and medieval. Some less restrictive forms of the treatment can be done at home, but for well over two-thirds of dialysis patients it’s an exhausting cycle of trips to a medical facility three times a week. There, for four hours at a time, patients are hooked up to $40,000 machines the size of a small refrigerator. During dialysis, two needles the size of prongs on a dinner fork are inserted into a vein that has been surgically connected to an artery, usually in the arm. One needle takes the blood from the body and through the machine; the other cycles it back minus the toxins and excess fluids. The process, while lifesaving, may leave patients exhausted and numb.

No stranger to adversity, MacNaughton had bounced back from other challenges life had thrown at her. In 1966, she became a young widow when her husband, while serving with the Royal Canadian Air Force, died when his plane crashed during a search and rescue mission near Hope, B.C. Although she moved to Hawaii, she made regular visits back to Hornby Island, where in 1973, she bought a rustic, tworoom cabin for use during the summer months. She married two more times and raised two daughters almost single-handedly by running her own arts-and-craft business, doing everything from restoring antiques to selling her paintings to tourists. “That paid the bills,” she says, “though I never was more than two weeks ahead.”

In 1993, looking for a more stable income, she moved permanently back to British Columbia and rebuilt her cabin into the Saltspray Landing B&B—one of the most picturesque bed and breakfasts

on one of British Columbia’s most soughtafter tourist destinations.

Even in MacNaughton’s toughest times her stoic and optimistic nature has pulled her through. “I don’t get down about things,” she says. “I’ve probably not been depressed for more than 10 hours in my whole life.” But since last year, no amount of optimism could cure MacNaughton’s kidneys. She was soon barely able to get out of bed. The toxins in her system gave her a chronic case of the dry heaves. Her kidneys burned. “They were like two hot potatoes in my back,” she says. Finally, she began suifering congestive heart failure.

In August of last year, at her doctor’s urging, she had a friend take her to St. Paul’s Hospital, part of Providence Health Care in downtown Vancouver, a six-hour journey on two highways and three ferries. There was no time to wait the 12 weeks it

generally takes for a newly made dialysis access site in the arm to heal enough for use. Instead, MacNaughton underwent emergency surgery to insert a temporary catheter into her jugular vein.

MacNaughton was awake, under a local anesthetic, as a surgeon made an incision at the base of her neck, then snaked tubing into her jugular vein beneath her collarbone with the tubes exiting above her right breast. The pain was excruciating and she started vomiting. “I was praying to pass out,” she says. Throughout, the surgeon tried to be encouraging: “You’re doing great. You’re doing great.” Says MacNaughton: “I could have slugged him.”

The next day, she had her first dialysis treatment in a unit with 43 whirring machines that run full out, morning till night, seven days a week. She saw people far worse off than herself, some wheeled in on

gurneys and others pushed in wheelchairs. She heard people crying out when they started cramping—a side-effect for some patients as the machine rapidly removes fluid from the body. The machines beeped constantly, sounding an alarm when something went wrong.

After four hours on the machine, an exhausted MacNaughton could barely make it to the street where family members had parked to pick her up. The next day it was all she could do to recover. The day after that, she was back for dialysis. “I felt like I had walked through a curtain of knowing nothing about dialysis to knowing too much,” she says. “I didn’t realize that I’d just get sicker and sicker and that I’d be on it for the rest of my life. It was hell.”

The realization dawned of what lay ahead. Unable to run her B&B, MacNaughton hired a friend to manage it for her. She found a $600-a-month basement apartment a $10 cab ride from St. Paul’s and began living off credit and a small pension from the Canadian military. She was too exhausted from the treatments to shop for food or cook for herself. In spite of the support offered by her five siblings and two daughters, she was pretty much on her own. “I looked at people around me and wondered how they could just stand to stay alive like this,” she said.

And it was just going to get worse. In September, doctors said it was time to build a permanent access site. But connecting the vein and artery to create what is known as a fistula can be a tricky business: they often don’t work and can have terrible complications. When MacNaughton awoke from the surgery, the pain was so great she thought her arm had been amputated. A half-inch-wide red welt where the incision had been made ran from her right armpit to just below her elbow. The feeling was gone in her hand— a condition that in extreme cases can cause fingernails to blacken and fall off. “Fistulas are the Achilles heel of dialysis,” says Dr. Stanley Fenton, a nephrologist at Toronto General Hospital. “For many patients, it’s a major medical issue.”

MacNaughton’s fistula didn’t work. Even after the 3 V2 -month wait to allow the vein to enlarge and strengthen, it collapsed when the doctors tried to insert the needles to start dialysis. Again and again they tried, until finally, the surgeon proposed another procedure, involving moving a large vein

from her leg to her arm. MacNaughton refused. “No, you’ve had your chance,” she told him. “My hand’s all weird and I have lumps in my arm that feel like hard plastic has been implanted. I couldn’t put up with any more surgery.”

MacNaughton realized it was just a matter of time until her temporary catheter malfunctioned. Under the auspices of the B.C. Transplant Society, she turned her attention to finding a kidney from a live donor. The most common route histori-

cally, transplant from a cadaver, was not an option—there were already about 500 people on British Columbia’s waiting list. Only 45 to 60 of those organs become available each year. “It would take about 10 years for me to work my way to the top of the list,” says MacNaughton, “and by then I’d be too old or too sick for them to waste a good kidney on me.”

Luckily, MacNaughton had a large family and a wide circle of friends. Ten people agreed to be tested to see if their blood and tissue types matched hers. She had other encouraging news in December —a dialysis clinic was opening on Vancouver Island. That allowed her to move back home to Hornby Island, even though it meant an exhausting nine-hour round-trip by road and two ferries three times a week.

Better still was word from doctors that they had found not one but two matches for a kidney transplant. One was her older

sister, Miriam Ulrych. The other was a friend, Stefa Shaler, a 51-year-old Vancouverite who had run group homes for children. Shaler and MacNaughton became close in 1998 when they worked in the slums of Brazil as volunteers for Street Angels, a charity that Ulrych runs. While Shaler had some qualms about the operation, her resolve was clear. “I couldn’t just stand by and see a friend dying,” she said. “I felt a sense of humility that I would be able to help someone live. It was a gift.” Shaler delivered her own gift on Aug. 27. In a three-hour operation at St. Paul’s Hospital, surgeon Dr. William Gourlay removed Shaler’s left kidney. Then, in a four-hour procedure, he transplanted it into MacNaughton’s lower abdomen, leaving her two “native” kidneys in place. For the 37-year-old Gourlay, who’s performed about 270 transplants, both operations were “routine.” The new kidney produced urine even before MacNaughton was completely stitched up.

But it wasn’t over yet. Shaler was recovering quickly, but early tests showed toxins building up dangerously in MacNaughton’s blood. A biopsy brought worse news: the kidney was being rejected. “I never expected this,” said the bitterly disappointed patient. Her doctors put her back on dialysis while they sought the right cocktail of anti-rejection drugs to get her new kidney functioning. By late last week, more than a week after the transplant, the new organ had clearly kicked in. “Hallelujah,” exclaimed MacNaughton as she prepared to move to an apartment where she would continue her recovery. “I feel like I have given birth.”

As tough as her ordeal has been, MacNaughton appears to be well on the road to recovery. Even with a nauseating regimen of anti-rejection medication facing her, she is one of the lucky ones. Thousands upon thousands of Canadians on dialysis will wait years for the luxury of a transplant; most will never get one. “There are people dying on the waiting list every year,” says Beryl Ferguson, national program director of the Kidney Foundation of Canada. With experts predicting that the number of cases of renal failure will double again in the next decade, and no sign that the supply of donor kidneys will increase, for many it can only mean a difficult survival, hooked up to a machine. E3