Cathy Grouwstra divides her life into two parts. There was her life before the surgery, in which every day was a struggle to endure the exhaustion and despair that were symptomatic of her deteriorating liver.
Then there’s today.
Fresh from being discharged from a Vancouver hospital, Grouwstra is now recovering but hopes to return home this week to her son. The Crescent Valley resident is grateful for the transplant that saved her life, and is speaking out during Organ Donor Awareness Month so no one forgets how urgent donations are to the people who need them.
“I always knew it was important even before any of this happened,” said Grouwstra in an interview with the Star last week. “I was always a believer that we need to do that, that when we pass I thought it was important for people to do that, for me anyway. But I never thought I’d be the one going down that road.”
Grouwstra first felt something was wrong in February 2011. She was diagnosed with Primary Sclerosing Cholangitis, a disease that causes inflammation and scarring in the bile ducts, which in turn leads to a build up of bile in the liver.
So began a four-year battle against extreme fatigue, stress and what she calls a mental fog. Even menial tasks were an effort, but because there’s no cure for PSC the only solution was a liver transplant. For that to happen, Grouwstra’s liver had to worsen to the point where her doctors could get her on the waiting list for a transplant.
Grouwstra was only just put on the waiting list last June. She likens the wait to a game of musical chairs — any improvement set her back on the list, but if she got worse it was straight to the front of the line. Over 500 people are currently on a list for organs in BC, according to the BC Transplant website.
People also die waiting for donations that never come — there were 278 such deaths in 2014, according to Health Canada’s website.
“The waiting list is really hard for a lot of people because you are getting sicker by the day, and we don’t have a warehouse of livers for people,” Grouwstra said. “We have humans, and that’s the big thing for me is to promote people to sign the card to donate their organs when they pass.”
The final stages of liver disease — which includes jaundice and vomiting, and in her case a loss of 50 pounds — were setting in when Grouwstra found out Feb. 14 that she was getting surgery. One day later she was under the knife. She ended up staying in a Vancouver hospital for four weeks and needed an extra surgery to stop some bleeding, but lately she’s started taking walks again. Her energy is better, although that sometimes draws Grouwstra into mistakenly thinking her body is healed.
“This is going to take me a few more months to mend physically,” she said. “They took an organ out, put an organ in. The organs have to play nicely with each other, have to accept each other. So it takes a while for the body to heal.”
Meanwhile, Grouwstra’s son Shaun is waiting for her at home. He turns 16 this month, and Grouwstra is looking forward to taking care of someone rather than being cared for. That wouldn’t be possible, she says, if someone hadn’t taken a moment to become an organ donor.
“We tend to forget about this after a while,” she said. “We think about it and [say], ‘oh yeah yeah yeah I’ve got to do that’ and then you just forget about it and get on with your life, but it is extremely important.”