For Colleen Webb it is the most difficult thing to ask, but she must. Shortly after giving birth to her daughter, the 33-year old’s world was shattered with a diagnosis of kidney disease. And as the wait for a deceased donor draws on, a living donor is her most viable option. Quinn Bender photo

For Colleen Webb it is the most difficult thing to ask, but she must. Shortly after giving birth to her daughter, the 33-year old’s world was shattered with a diagnosis of kidney disease. And as the wait for a deceased donor draws on, a living donor is her most viable option. Quinn Bender photo

The fight of her life

As the wait for a deceased kidney donor draws on, a living donor is Colleen Webb’s best option

On World Kidney Day, March 8, Colleen Webb ripped open one of a dozen boxes stacked in a room off the main floor of her Thornhill home. She hoisted three 1.5 -pound bags filled with dialysis solution and walked to her downstairs bedroom with her 5-year old daughter, Maddison, closely trailing behind.

“Every day I empty a box containing the bags I need,” Webb explained. “Depending on each individual need, you need different solutions.”

The 33-year old was diagnosed with kidney disease shortly after her daughter’s birth in 2013. When she was 27 weeks pregnant, doctors noticed her blood pressure was creeping up, and her kidney function was low. After multiple tests, doctors diagnosed Webb with preeclampsia, a disorder that can begin after 20 weeks of pregnancy in women whose blood pressure had otherwise been normal.

“It’s really hard to go from somebody who feels like you could conquer the world, to this person that relies on the healthcare system and is constantly having blood work done and going to medical appointments,” she said.

The real trouble began a couple of years after delivering her child, when Webb’s kidney function dropped from 30 per cent to 10 per cent. Doctors started dialysis treatment and placed her on the deceased donor list for a new kidney.

Colleen Webb demonstrates her evening preparation for automated peritoneal dialysis. A somewhat painful process, the machine will filter her blood five times throughout the nighttime hours.

After submitting to several treatment options, she now manages her dialysis treatment from home, which allows her to work three days a week. It doesn’t, however, come without its difficulties.

“It’s great because it makes you feel more balanced. Before I was on dialysis it was really hard to concentrate because you’re just in this brain fog all the time,” she said. “It’s been difficult too, though, because you don’t get a full night of sleep as this fluid is going into your body and being drained out, so it’s not totally painless.”

On her bedside table sits an automated peritoneal dialysis (APD) machine. Webb prepares two bags of solution and leaves the third on the cycler to warm up. While she sleeps, the cycler fills Webb’s abdomen with dialysis solution, where it sits for 90 minutes and filters out toxins from her bloodstream and organs.

The fluid then drains through a small plastic catheter surgically placed inside her belly, flows through a long extension tube and empties into the toilet. This process repeats three to five times over eight hours every night.

The diagnosis and subsequent treatments have changed Webb’s life drastically. She’s advocating for herself and others with this condition in a Facebook group called ‘Colleen’s Kidney Journey’ to help educate and encourage people to consider living organ donation.

WATCH VIDEO: In her own words

“When I was first told about living donation I thought it would be no problem. I have a lot of family and friends who love me, and I didn’t think it would be a difficult thing to do,” Webb said. “But that hasn’t been the case at all.”

The process to become a living organ donor can take months to complete, and involves multiple tests and steps to ensure the procedure is in the best interests of both the donor and recipient, regardless of familial ties. Both Webb and her brother have an A+ blood type but didn’t match during the initial tissue testing. Her husband and a number of her close friends were also denied for various reasons.

READ MORE: 70-year-old B.C. woman fulfills goal of donating kidney

“Just by talking to people, I find sometimes they don’t understand how serious it is, that the treatment won’t work forever, and that you won’t be around forever unless someone comes forward and donates to you,” Webb said.

Forty-seven per cent of people registered for organ replacement are under the age of 65, according to the 2017 Canadian Organ Replacement Registry.

There is one person that Webb said she feels understands what she is going through, her friend James Iamele, 33, who she first met in high school. Iamele was diagnosed with kidney disease when he was 10-years old, soon after his older sister’s diagnosis was found to have hereditary ties where both parents were carriers of the gene. “[Kidney disease] is a different thing to have in common with someone, but I know it’s a hard thing,” Iamele said. “It’s hard because people don’t see it. It’s not visual like lots of other things.”

Iamele lost function of his kidneys when he was 15-years old and was on peritoneal dialysis for four years before receiving a deceased donor kidney at the age of 19.

Colleen Webb receives a visit from high school friend James Iamele. Living with kidney disease since the age of 10, he is one of the few who can offer Webb a level of support from experience.

The kidney lasted him for six years until October 2008, when doctors found the organ was failing as a result of chronic rejection. Iamele was put back on dialysis treatment, and back on the deceased donor list.

Before antibody counts and testing processes were put in place to decrease the likelihood of organ rejection after surgery, Iamele said doctors prescribed him a string of medications to keep his antibody count level down, which subsequently suppressed his immune system and caused other complications. Iamele now has an antibody count of 97 per cent, meaning his body is sensitive to 97 per cent of the population.

“It was like Catch-22,” he said. “So they’re trying to get the best matches now so they don’t have to put you on so much medication. I’m still on anti-rejection medication because I still have the donated kidney.”

Iamele said it is still difficult to talk about his own experience.

“I talk to a few people here and there, but it’s hard for me to talk about because it’s been there for so long now, it’s not as new anymore.

“You get tired of talking about it,” Iamele said, who is self-employed at a local drafting construction company.

“Sometimes you just want to go on with life. Just do your day-to-day thing.”

Iamele has supported Webb in ways other people haven’t been able to.

READ MORE: Cross-Canada ride to encourage organ donation

“When my daughter wanted a cat really badly, I wasn’t sure if it was a good idea with the machine, and he advised me not to because cats will chase the bubbles in the lines and bite them, which could introduce a lot of bacteria into your body. It’s those little day-to-day questions where it’s always nicer to go to a friend who’s been there.”

Proud and humble, but forced into a fight for their lives, Webb hopes people will consider living donation and see that there are people like herself and Iamele living under the radar. They wait for a deceased donor but pray for a living donation that will produce the best outcome.

In Iamele’s case, says Webb, if 100 people were tested as potential donors, there would be up to three positive matches.

“It’s easy enough for people to say that that person looks fine so they must be doing fine, but looks aren’t everything. You can do your hair and your makeup but on the inside things are still failing,” Webb said.

“Essentially what you’re doing is asking someone else to save you, to save your life.”

 

Friends Colleen Webb and James Iamele speak with Terrace Standard reporter Brittany Gervais. Quinn Bender photo

Friends Colleen Webb and James Iamele speak with Terrace Standard reporter Brittany Gervais. Quinn Bender photo