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Headline: Family mattersFeature
Family matters
Winnipeg woman receives kidneys from
father and brother
Cheryl Simoens with her dad, Ronald Simoens.
By Susie Strachan Photography by Marianne Helm Sept/Oct 2017
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Born with an incurable disease that causes kidney failure, Cheryl Simoens can thank her family members for giving her a rare gift: kidney transplants that keep her healthy and thriving.

Simoens was born with cystinosis, a genetic condition that causes a build-up of the amino acid cystine in her cells, which can affect organs such as the kidneys, eyes, pancreas and more.

"There's no cure for this. It's lifelong," she says, adding that she was diagnosed around the age of 13 months, and that two cousins had previously passed away from the disease.

Prior to the 1980s, children with cystinosis generally didn't survive into adulthood. So when the medication and diet Simoens was on began to fail her, she became very sick at the age of 11. She was going into kidney failure and the only way to save her was a transplant.

"My parents both tested to see if they could be a donor, and they both matched. My dad (Ronald Simoens) didn't hesitate," she says. "In September, 1995, my dad donated a kidney. I did fine after that, with two minor rejections."

She made it through high school and into her early twenties. She took up rock climbing and found employment. That donated kidney from her father lasted her for 20 years, until 2014, when she started feeling sick and was put on dialysis.

Once again, doctors told her she needed a new kidney.

This time, her brother, Michael Simoens, stepped up. In June of 2015, Michael flew in from Calgary. One of his kidneys was transplanted into his sister during an operation at Health Sciences Centre Winnipeg.

"My brother and my father are my heroes," she says.

Dr. Peter Nickerson
Dr. Peter Nickerson says transplantation is often
the best treatment for people with kidney disease.

Living donor transplants are often arranged between relatives, says Dr. Peter Nickerson, Medical Director of Transplant Manitoba.

In fact, of the 57 kidney transplants carried out by the Renal Transplant Programs at Health Sciences Centre Winnipeg in 2016, 25 were gifts from a living donor, often from a relative. Six others came from three donors via Manitoba's latest donation option - donation after cardiac death (DCD).

The total number of kidney transplants last year represents a record for the programs. But, as Nickerson points out, there are between 200 and 250 people in ths province waiting for a kidney transplant at any given time - a factor that underscores the importance of becoming an organ donor.

"Kidney transplantation is often the best treatment for people living with kidney disease," says Nickerson, who is also Vice Dean (Research) for the University of Manitoba's Rady Faculty of Health Sciences. "A transplant means living a longer, healthier, active life without being tied to the demands of dialysis."

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Among all the provinces, Manitoba has the highest number of people per million population with end-stage kidney disease, says Nickerson. Most of those people are receiving some form of kidney dialysis.

"A person between the ages of 20 and 24, who has end-stage kidney disease, can survive, on average, 15 years on dialysis," he says. "However, that number jumps up to close to 40 years if they receive a donated kidney."

Transplant Manitoba is the umbrella organization for two groups that work on the donation side and the transplant side of organ donation. The Gift of Life program works with donors, and the transplant team works with the recipients.

Kidney transplants are performed in Manitoba, while lung, liver, pancreas and heart transplants are performed in Alberta or Ontario, with the Transplant Manitoba teams taking care of the patients before and after their operations.

As it turns out, Manitoba is a leader in kidney transplantation, and since 1969, over 1,500 kidney transplants have been performed by the adult and pediatric programs combined. Led by Dr. David Rush and Dr. Patricia Birk, both programs were the first to introduce surveillance biopsy programs that have led to their adoption in many countries worldwide, and established Winnipeg as a centre of excellence in translational research.

Also in July of this year, Dr. Chris Wiebe, a transplant physician at Transplant Manitoba, discovered how to better predict which patients will require more or less medication to control their immune system and better protect the transplanted kidney.

His work determined that the degree of mismatch in the tissue type between the donor and the recipient, when studied at the molecular level, provides such a method.

"My brother and my father are my heroes."

"Knowing more about that match at a molecular level will allow the treatment teams to provide the right level of medication to keep the transplanted kidney thriving," says Nickerson. "Eventually, we're hoping to use this sort of analysis pre-transplant, which would mean a better match between donor kidney and recipient."

Another discovery came when Dr. Julie Ho, a transplant physician at Transplant Manitoba, and her team identified a new urine test to detect rejection and predict outcomes in kidney transplantation - meaning patients at high-risk of losing their transplants may be identified sooner. "This will be going to clinical trial in the fall," says Nickerson.

Cheryl Simoens holds a photo
Cheryl Simoens holds a photo of her "heroes:"
brother, Michael, and father, Ronald.

Nickerson has also been involved in research. His team has identified the role of HLA antibodies in causing premature kidney transplant loss and developed novel strategies to prevent antibody development. He also leads the Canadian national standardization of HLA laboratory practice and the development of an interprovincial transplant network in Canada that has had an impact on the lives of hundreds of Canadians to date.

Along with locally-performed kidney transplants, the province has also seen an uptick in the number of patients who have received heart, liver and lung transplants, thanks to good relationships with other provincial transplant centres, says Nickerson. "Organs from Manitoba donors are going out of province. At the same time, we've also seen more Manitobans getting transplanted hearts, livers and lungs. Patients are getting better access."

Thanks to her father's and brother's gifts, Simoens is back to enjoying rock climbing, along with other summer and winter sports. She's able to work full-time again, and has just purchased a condo.

"Being on dialysis meant I spent a lot of time doing that, and couldn't work full-time. For many years, I felt like my disease and kidney failure defined me," says Simoens.

"The kidney from Michael allows me to get back into life full-time. Yes, I will always have cystinosis, and I will always have to take anti-rejection drugs and immune-suppressants, but I'm a survivor. And it's all due to the wonderful doctors and nurses who continue to treat me, and, of course, to my dad's and my brother's generosity."

Susie Strachan is a communications specialist with the Winnipeg Regional Health Authority.

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