Surgical success

Manitoba's kidney transplant program has quietly evolved into one of the best of its kind in the country. And that's good news for adults and children like Oliver Senger.

Kidney transplant patient Oliver Senger is prepared for surgery.
Kidney transplant patient Oliver Senger is prepared for surgery.
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What kidneys do

Improving the odds

Transplants more cost-effective than dialysis

Transplanting a kidney

How you can help

Winnipeg Health Region
Wave, September / October 2011

It was the first sign of trouble.

Oliver Senger was barely seven months old in 1997 when his parents noticed he was having trouble keeping his food down.

"It coincided with the time that I started giving him a bottle for some feeds," says his mom, Arnie, who lives with her husband, Brent, and their family on a grain farm near Saskatoon.

The couple thought their infant son might have a digestive problem, so they made an appointment to see their family doctor. He in turn, ordered a barium swallow test and an abdominal ultrasound.

Immediately after the ultrasound, the couple was asked to return to their doctor's office for the verdict: Oliver had abnormally small kidneys, a rare condition that ultimately hampers the kidneys' ability to filter waste from blood.

The boy was admitted to Royal University Hospital in Saskatoon under the care of an adult nephrologist. What followed was an intense four days of tests, blood work and worry. Oliver was losing weight and crying from headaches. He was sleeping almost around the clock and not eating. Tests would eventually confirm that Oliver's small kidneys were not fully functional.

By the end of that first hospital stay, it was determined that Oliver should travel to Winnipeg to consult with kidney specialists at the Winnipeg Health Region's Health Sciences Centre. As one of the largest jurisdictions of its kind in Canada, the Region is responsible for providing specialty referral services to residents from Nunavut, eastern Saskatchewan and Northwestern Ontario. More importantly to the Sengers, the Region's pediatric and adult kidney transplant programs have also gained an international reputation for innovation. In addition to providing quality care, many members of the pediatric and adult-care programs are involved in leading-edge research.

The turn of events left the Sengers in a state of shock. "Every parent hopes and expects to have healthy children, so finding out that a child is sick leaves you feeling helpless," says Arnie.

It was during that trip to Winnipeg that Arnie and Brent came to understand that Oliver would need a kidney transplant. They just didn't know when. Children with kidney problems who do not need a transplant in the first few years of life can often go without one until puberty.

Oliver would be one of these children. Over the next decade, the family would trek to Winnipeg at least three times a year - an 800-km trip from their home over often slippery and snow-covered highways. During his visits to HSC, Oliver would undergo a number of tests to check on the status of his kidneys. He'd also have an X-ray at least once a year to determine his bone health.

Over the years, Oliver's ailing kidneys worked well enough to keep him out of the operating room. But that changed in 2008 when they started to show signs of serious decline. It was now clear the young boy would soon need a kidney transplant. Fortunately, his father, Brent, was deemed to be a good match as a donor, and the operation was booked.

On January 6, 2011, father and son underwent the operation to transplant one of Brent's kidneys into Oliver. The operation was a success. Seven weeks after surgery, Oliver went downhill skiing with his family in British Columbia. Today, he's a healthy 14-year-old who is growing, can eat without restrictions, and can run five kilometres just for the fun of it.

"I can run, bike, play sports and have more fun without feeling sick afterward as a repercussion. I can concentrate better, too," says Oliver, who still must take anti-rejection medication, along with antibacterial meds and vitamins, and be tested for signs that he might be rejecting the kidney, which has been surgically attached in the front of his abdomen.

Oliver's surgical success story is just one of hundreds being written in the operating rooms of the Region's Pediatric Kidney Transplant Program, which, along with the Adult Kidney Transplant Program, is a part of Transplant Manitoba - Gift of Life.

As such, it provides insight, not only into the capricious nature of kidney disease, but also into the remarkable progress that has been made in the area of kidney transplants.

Since its inception in 1969, the Winnipeg-based program has transplanted more than 1,500 kidneys. Forty years ago, the one-year survival rate for a transplanted kidney was in the neighbourhood of 45 per cent, and the rejection rate was close to 80 per cent.

But since then, improvements in anti-rejection drugs, as well as advances in tissue typing, transplant surgery techniques and post-surgical monitoring have resulted in transplant survival rates reaching 90 per cent, while rejection rates have dropped to below 20 per cent.

Oliver Senger just months after receiving his father's kidney.

Oliver Senger just months after receiving his father's kidney.

Oliver and thousands of patients like him are the beneficiaries of these and other improvements that have been pioneered or adopted by Transplant Manitoba. But while the program has a long record of achievement, officials say it now has the potential to help even more children and adults in need, thanks in large measure to a $4.6 million investment since 2005 that was designed to boost the number of kidney donations and transplant operations.

Dr. Peter Nickerson is Associate Dean (Research) for the University of Manitoba's Faculty of Medicine, the former head of Transplant Manitoba - Gift of Life, and the architect of the transplant investment plan. He says kidney disease is much more prevalent than many Manitobans realize, and the investment in the program was needed to keep pace with increasing demand for transplants.

In fact, the Manitoba Renal Program says this province has the highest rate of chronic kidney disease in Canada. Each year, more than 275 Manitobans start kidney dialysis treatment to stay alive, according to program officials. Based on world-wide population studies, it is estimated that as many as 100,000 Manitobans may be affected by chronic kidney disease in different stages.

To help answer the demand for care, Nickerson says the program today focuses on improvement in three key areas:

  • Increasing donation rates, either through living donations, or improving the deceased donor process, or by encouraging individuals to mark their organ donor card.
  • Improving allocation of donated kidneys. Manitoba was the first to make public the system by which available donor kidneys are allocated to those on the wait-list.
  • Pioneering research, especially in the area of organ rejection.

Nickerson says the main challenge facing the program is to increase kidney donations and boost the number of transplants performed. There are over 1,200 people on dialysis in Manitoba, with the rate of people being added to dialysis standing at six per cent per year. On average, 50 transplants are done a year, with 15 to 30 of those being kidneys from deceased donors. That could be increased two-fold, says Nickerson, who also serves as Executive Medical Director, Organs and Tissue Office, for Canadian Blood Services.

"We know that 90 to 95 per cent of the population support organ donation, but only 40 to 45 per cent of us have taken the step of signing a card or telling somebody," he says. "A second part of the problem is recognizing who can and cannot be a donor, so sometimes we miss an opportunity. The frequency that a physician in an ICU (intensive care unit) will encounter a potential donor is very low. Not everyone working in the ICU recognizes who can be a donor, so we do a lot of education in this area."

But things are improving. Five years ago, Manitoba had one of the lowest donation rates in Canada. But numbers have been increasing, thanks to the public and investment by Manitoba Health and the Winnipeg Health Region, which allowed Transplant Manitoba to educate health-care staff in recognizing potential donors. Last year, Manitoba had the highest donation rate in the country, at 15.4 deceased donors per million people.

In addition to receiving more organ donations, the program is also able to help a wider range of people, says Dr. David Rush, Medical Director of the Manitoba Renal Transplant Team.

"The quality of our compatibility assessment between donor and recipient has greatly improved in the past decade, along with improvements in the number and complexity of antirejection medications, which means the range of recipients for a donor kidney has broadened," he says. "Almost everything has changed since I arrived. Since 1982, medications have become more potent, stronger. We've introduced protocol biopsies and we are working on non-invasive ways to see how well the transplanted kidney is doing."

Another Manitoba first was making transparent to the public the rules governing how Transplant Manitoba allocates donated kidneys to recipients. With over 150 people on the waiting list for a transplant, and another 300 being worked up for the surgery, there's a lot of demand for kidneys that come from deceased donors. Consulting wait-list patients, Transplant Manitoba learned that they wanted to have a say in the rules and to have them made public. They also wanted a regular audit of the program's operations to ensure it was following the rules. The new rules have been in place since 2008 and are available to patients on the Transplant Manitoba website.

There are three principles that outline how patients are ranked on the recipient list: medical need, utility and justice.

At the top of the list are people who have urgent medical need, who can no longer get adequate dialysis and need a kidney in order to survive. Also at the top are people who are "highly sensitized." These individuals have many antibodies in their blood making it very difficult to find a compatible donor. Highly sensitized people make up about 30 per cent of the wait list. Yet they received less than five per cent of donated kidneys under the previous system.

"Those with high levels of sensitization react against almost all available kidneys from donors. This means only one donor in 100 could be a match for them. So if a compatible organ becomes available, and we don't give the highly sensitized person the kidney, they might never receive another offer," says Nickerson, who is also the Flynn Family Chair in Kidney Transplant Medicine at the University of Manitoba.

Children fall into the next highest category, along with people who have a perfect tissue match. Children rank highly because a transplant gives them the best opportunity to grow, develop and learn properly. Utility refers to how well the kidney can be matched between donor and recipient. The better the tissue match, the better the chance the transplant will last. Also, a kidney from a young donor can last for many years; therefore giving a young kidney to a young recipient maximizes the use of the donor's gift.

The third principle is justice, which means ensuring everyone who is on the waiting list for a transplant has a fair chance to receive an organ. Patients wanted to make sure that no one was disadvantaged by their age or ethnicity.

Has the new system achieved its goals? Are medically urgent or pediatric patients getting priority? Are disadvantaged patients, such as the highly sensitized, getting better access?

Yes, says Nickerson. The number of highly sensitized patients receiving a transplant has jumped to 12 per cent from three per cent, although they should be receiving closer to 30 per cent, as that's the proportion they make up on the wait list. Ethnic groups, Aboriginals and the elderly also receive transplants in proportion to their numbers on the wait list.

Pediatric patients, meanwhile, are dealt with at such speed that there are sometimes no children on the list.

Currently, there are 13 children being worked up for a transplant, and three are ready for the surgery, according to Julie Strong, Pediatric Transplant Co-ordinator with the Pediatric Kidney Program.

"One of the three has developed antibodies, because of a prior transplant that was rejected," says Strong, who co-ordinates the families of the children as they enter the program, in terms of education and getting the children ready for their transplant. This is a complicated process, as kids often need care from other specialists, including urology, cardiology, respiratory, growth and development along with psychiatry.

Transplants to children are a high priority because they tend to be more medically stable and generally do not suffer from other diseases, the way many adults do, making them prime candidates to thrive after a transplant.

"Children deserve the opportunity to fulfill their potential," says Dr. Patricia Birk, Medical Director of the Pediatric Kidney Program for Transplant Manitoba. "They also have excellent outcomes. From 2003 to 2011, we've seen a 90 per cent one-year graft survival rate when the child received a kidney from a living donor."

Children aren't affected by kidney disease in the same numbers as adults. Compared to 150 on the adult waiting list, there are less than 20 children waiting for a transplant. The numbers transplanted per year are also smaller, with 18 transplants done in 2007 and 15 in 2008.

"Children are affected by kidney disease due to congenital anomalies and inherited diseases," says Birk, adding that children must be over 10 kg in weight and two years of age before they can be considered for transplantation. Infants may be started on dialysis, and transplantation is held off until their small body has grown large enough to accommodate an adult-sized kidney.

The preference for children is to find a living donor, often a parent or another relative. A living kidney has not gone through the trauma of brain death in a deceased donor, and has a greater ability to function better, for longer.

For Brent Senger, there was no question he would donate a kidney to his son.

"Oli needed a kidney and I could do without it. I'm just glad that it has worked out for the best and that my kidney is working for him," says Brent, adding that Oliver has nicknamed the kidney "K3," like it was a pet akin to the family Malamutes, Nanook and Sitka.

A kidney ready for transplant.

A kidney ready for transplant.

Arnie Senger says it was a hard day when her two "guys" went into surgery, one after another. Brent's kidney was removed early in the day and he was soon wheeled to the recovery room. Then it was Oliver's turn in the operating room, with surgery done by Dr. Joshua Koulack. A good family friend kept Arnie company at the hospital, while the other two Senger children, Alex and Lucy, stayed at the apartment the family had rented in the city. Alex kept busy by phoning progress reports to Brent's parents in Saskatchewan, and Arnie's parents, who live in Australia.

"I now have three healthy kids - a precious gift that is often unappreciated by those who have known no difference," says Arnie, who was tested as a donor but could not follow through due to being an incompatible blood type with Oliver. "I am so proud of Oli and the way he has accepted and embraced his health. There is never a complaint about taking his meds or drinking his water. If you saw him, you would never know he is a kidney kid. Oli is hoping to participate in the World Transplant Games in Switzerland next March in the ski races."

Beyond that, the future is fuzzy. There are many factors affecting whether Oliver's new kidney will function properly, including taking his anti-rejection medications daily, drinking four litres of water a day, good nutrition and a healthy lifestyle.

All in all, Oliver says he's very thankful his dad donated a kidney.

"I still have to travel to Winnipeg for biopsies and have frequent appointments and blood work here in Saskatchewan," says Oliver, who is now in Grade 9. "It is nice to have appointments close to home so that I don't have to travel as much. I will miss less school and music and sports by being home more."

Arnie says that as parents, they made a big effort to help Oliver understand what was happening and what would likely happen as his renal failure progressed. They talked freely with him about his health and never kept any information from him or their other two children.

"I think this helped him be prepared for transplant. Oli certainly accepted every step of his renal failure and transplant with grace. He was given the opportunity to make a choice about his health care whenever there was a choice to make. We provided him with the information, pros and cons, and encouraged him to make the best decision," she says.

While most kidneys for transplant have traditonally come from deceased or living donors, such as a family member, efforts are being made to broaden the number of potential organ contributors.

For example, the Living Donor Paired Exchange is a country-wide program that co-ordinates living kidney donations between patients with a willing but incompatible donor and another pair in the same situation. It is a partnership between Canadian Blood Services and transplant programs across the country, and was launched in January 2009. Since its inception, more than 185 pairs have registered, including 20 altruistic donors who have no relatives they need to find a kidney for.

"The Canadian Blood Services is trying to set up a national registry for highly sensitized patients as well, so that if a kidney becomes available anywhere in the country that is a match for a patient, they would get that kidney," says Nickerson, adding that this registry should be launched in 2012.

The true value of the kidney transplant program is that it saves lives, and also saves money. By spending money hiring more surgeons and other staff, the medical side is ready to perform more transplants. Since 2006, following the increased investment by Manitoba Health and the Winnipeg Health Region in Transplant Manitoba, more than $1.2 million has been saved through transplants, money that would have otherwise been spent on dialysis therapy for these patients.

Nickerson notes that while transplants are one aspect of the spectrum, with a perfectly healthy person at one end, and a person with end-stage kidney disease at the other, stopping kidney disease from starting in the first place should be a priority for everyone.

While kidney disease may strike in childhood as an inherited disorder, many contract the disease in adulthood. All adults should undergo kidney disease screening, along with diabetes screening, including keeping an eye on their blood pressure, exercising and eating a healthy diet.

"Your best bet is to decrease your chances through early detection and positive changes in your lifestyle," he says.

Susie Strachan is a communications advisor with the Winnipeg Health Region.

Wave: September / October 2011

About Wave

Wave is published six times a year by the Winnipeg Health Region in cooperation with the Winnipeg Free Press. It is available at newsstands, hospitals and clinics throughout Winnipeg, as well as McNally Robinson Books.

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