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From 2013 to 2016, Liz Venderbos's life was like a rollercoaster – not that you would have known by talking to her. Born and raised in Winnipeg, Manitoba, Liz has worked in the hotel industry for over 10 years. With a family and a thriving career, Liz's life moved at a rapid pace, just how she liked it.
When Liz's older sister passed from colon cancer in 2000, it was recommended that she and her brother have regular colonoscopies. "It's not a fun test, and I dodged it as much as I could," says Liz. "My GP was pestering me to go and I said, 'no, I'm way too busy.' I was managing 20 hotels across Canada at the time. I had a typical workaholic mentality just, 'I have no time for this.'"
It was 2013 before Liz decided to bite the bullet and schedule the test. By then, her mother was fighting terminal cancer. Liz was taking care of both her parents, while still performing the balancing act of working full-time and raising a family.
"When I finally went in, he asked me a few questions. Without getting too graphic, he asked me if there were any changes going to the bathroom. I told him 'yes.' He asked what my urine was like, and I told him it was really dark, like Coke. Then he said, 'and you're itchy all over aren't you?' As soon as he said that, I started crying. I hadn't told anybody that I was so itchy all the time. I knew it wasn't right. I said, 'what's wrong with me?' and he said, 'I don't know, but I think it has to do with your liver.'"
Over the next year, Liz would undergo a series of tests to pinpoint the cause of her symptoms. In that time, her mother passed away. Her family was heartbroken, Liz's father especially.
"With everything going on, it just felt like I didn't have time to be sick. Eventually, I was called into the doctor's office after all these tests – ultrasounds, CT scans, you name it. The doctor told me I had liver disease and after that, I remember watching him and my husband talking, but I couldn’t hear anything. It was like they were talking underwater."
After being referred to Dr. David Peretz, a liver specialist at Winnipeg’s Health Sciences Centre (HSC), Liz was finally diagnosed with Primary Biliary Cholangitis (PBC) an autoimmune disease that slowly damages the bile ducts of the liver. Liz had been living with PBC for the past five years.
"Looking back, I was ignoring the signs. One of the lessons I learned from this is don't ignore your body. If you're paying attention, it tells you things."
Liz and Dr. Peretz discussed transplant, the only possible treatment for patients experiencing end-stage liver failure. The Soham & Shaila Ajmera Family Transplant Centre in Toronto is the closest option for liver transplant candidates in Winnipeg.
Patients experiencing end-stage liver failure need a MELD score of 18 or higher for a place on the transplant waitlist. Liz was hovering around 16.5 until 2015, when her MELD skyrocketed to 26.
"My husband asked Dr. Peretz if it could be stress-related since my father had just passed away two weeks before that appointment. Dr. Peretz said it was likely. They put me on the deceased donor list right away. They also said if I knew anyone willing to be a live donor, they should get started on the testing process."
Liz's brother and a childhood friend stepped forward for testing. Neither was a match. "It's frustrating because they can only test one person at a time, and when you're in liver failure, time is precious."
With two potential donors eliminated and anxiety running high, Liz's youngest child, 21-year-old Ty, stepped forward.
"You never want your kids to go through major surgery. I told him 'no,' I kept saying 'no' – and he said to me, 'I'm an adult. I'm doing this.' I was so uncomfortable with it but he started the process. We found out we have the same blood type, and it just kept going from there."
In December, Ty and Liz travelled to Toronto for additional tests. On the way home to Winnipeg, Ty received an email from the living donor team – his next appointment was scheduled for January 6. Stepping away from Liz to find a quiet spot in the airport, Ty called his living donor coordinator.
"He came back, and I asked 'what happened? Do you have to keep the appointment?' and he said, 'yeah, it's for the psychosocial test. I'm a match.' All the stress came out at once and I just started balling."
After Ty passed the psychosocial assessment, the surgery date was set for January 18, 2016. After surgery, Liz waited eagerly to see Ty.
"When I finally got to see him, I told him 'I don’t know what to say to you. Thank you just doesn’t seem like enough.'"
The itchiness Liz had experienced daily for the past three years was gone as soon as she woke up from surgery. In the first few days of recovery, she watched as her jaundice receded and her skin colour returned to normal. By the time Liz and Ty were released from the hospital, Liz's energy had increased dramatically, and Ty was well on his way to recovery.
Since her transplant, Liz has shared her story many times, reliving some of the most challenging years of her life. "When I tell my story, I realize just how intense those years were. My closest friends have told me I'm the strongest person they know. I just don't see myself that way."
I just deal with things as they come. At the airport, when Ty found out he was a match, that was a huge emotional release – but I think I felt more fear for Ty than anything else."
Back to work in Winnipeg, Liz makes a point to keep sharing her experience with anyone who's interested.
"When you're going through something like liver disease, or a death in family – or both – it's so important to remind yourself that you're not alone. There are other people out there going through the same thing. And when you share what you're going through, it will shock you how many people will show up to ask 'what can I do? How can I help?' It’s very humbling."
If you were at the 2019 Ottawa Stroll for Liver, you already know Debbie Kleiboer's story. Debbie's been participating in the annual walk, hosted by the Canadian Liver Foundation, for nearly a decade, no small feat for someone who was once too sick to live on their own.
In early 2010, Debbie came home from work feeling out of sorts. It didn't take her long to realize that something was very wrong. "It was just out of the blue," she remembers. "I just got sick." After a series of tests, Debbie was diagnosed with NASH, non-alcoholic steatohepatitis.
She was warned that liver failure was a possibility for her, and was encouraged to change her diet and exercise routine. But her illness had been untreated for too long, and her health was rapidly deteriorating.
The Ottawa Hospital referred Debbie to Toronto General, where she was placed on the transplant list. Her sister shuttled her from Ottawa to Toronto for appointments, and their mother insisted Debbie come live with her, fearing for her safety if she continued to live alone.
"When I moved in with my mother it was really bad. She was looking after me. I didn't think I'd make it. One morning, she couldn't wake me up. She had to call an ambulance. I had to be intubated. That was a scary thing for my mother to go through."
With the advanced stage of her cirrhosis, Debbie was advised to consider living donation as a quicker path to transplantation. She was hesitant. "I didn't feel like asking anyone," she explains. "It's a lot to ask."
Fortunately, Debbie's brother came forward. Without her knowing, he began the work up process. He needed to lose 40 lbs before he could donate. When he was confirmed as a match, the surgery was scheduled for April 2012.
"We've always been close – when he was a baby I looked after him while our mother worked but I couldn't believe it when he told me he was going to be my donor. I couldn't believe he went and did that for me."
During her recovery, Debbie was surrounded by family and friends. "I'd have one friend over one week, then my niece would spend a weekend with me, my sister was always there in between. It was good. I always had someone with me. All the support from my family and friends kept me going."
Two months after her surgery, Debbie signed up for the Stroll for Liver and raised nearly $2,000. "I only walked a little bit, as much as I could. My friends were with me. It was a great day. I've been going ever since."
With her health under control, Debbie has dedicated her time to supporting individuals struggling with liver disease. "A lot of people don't know where to turn when they're faced with liver disease. When I was sick, there was nothing in Ottawa. It was so hard; it was isolating. I try to give support to as many people as I can. I joined the eastern group for the Canadian Liver Foundation a while back. We help organize the Stroll and the November gala. We've also started a Living With Liver Disease Program."
Though her own experience with liver disease is in the past, it’s something Debbie continues to reflect on. "It took a few months before I realized, 'yeah, I'm going to be okay.' Even a couple years ago, when I had my 60th birthday, I remembered that when I was sick, I didn't think I would ever make it this far. I'm glad I did."