To her four-year-old daughter Jessa, Sarah Newman's kidney disease is apparent every night when she hooks herself up to a dialysis machine in their Charlottetown home.
"My daughter is very used to my health issues and is very accepting of it, which is great," Newman said.
"I cannot just jump out of bed if she calls me. So she's adapted to have to come to me as opposed to me going to her."
But like many with kidney disease, Newman's illness may not be so obvious to others. As honourary chair of this year's Atlantic Canada Virtual Kidney Walk, she's hoping to change some people's perception of the disease.
"My goal is to spread the word that kidney disease is for everybody of all ages, and it doesn't necessarily look the way people think it looks," she said in an interview with Mainstreet P.E.I. host Matt Rainnie.
"You don't necessarily look sick, even though I've been sick for 25 years.… if I walk down the street, nobody would ever have any idea that I'm sick."
If I walk down the street, nobody would ever have any idea that I'm sick. — Sarah Newman
Newman was just four years old — her daughter's age — when she developed flu-like symptoms and was later diagnosed with hemolytic uremic syndrome. In 2017, she received a kidney transplant through the paired exchange list, where her father donated a kidney to someone else on her behalf, and she received a kidney from someone else who was a match.
"Kind of like give a kidney, get a kidney," she said.
First transplant failed
However, her new kidney lasted only about a year and a half before it began to fail.
She is now on the waiting list for a second kidney transplant, doing dialysis at home while juggling work and parenthood. Living through the COVID-19 pandemic with a compromised immune system hasn't made it easier, she said, but she has a "wonderful team" on P.E.I. helping her, which helps her remain optimistic.
"I've always been an extremely positive person. I have always said to everyone who has asked that it can always be worse. That's always been my line. It can always be worse. I have something that they can fix."
Virtual kidney walk
Events like the virtual kidney walk fundraiser Sept. 27 all contribute to that fix, she said. Information on donations can be found at kidneywalk.ca.
Meanwhile, Newman and her daughter continue to wait for the call that could make her well again.
"I've tried to discuss that with my family and prepare my daughter that, at some point, the phone is going to ring and Mommy's going to have to go for a little while, and you're going to stay with Grammie, or Auntie or whoever you're going to stay with. And Mommy's going to get her new kidney and then I won't have to come home and do dialysis anymore, hopefully.
"So leaving her unexpectedly will honestly be the hardest part for me."
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