In 2009, internationally trained nurse, Tzvia Petliar was completing a critical care course at a Winnipeg hospital when she felt a sharp pain in her stomach.
Tzvia went to the Emergency Department straight from the unit where she was training and was diagnosed with acute pancreatitis, a potentially life-threatening inflammation of the pancreas that can appear suddenly and last for days. Risk factors for the condition include autoimmune diseases, medications and gallstones.
Primary sclerosing cholangitis (PSC) was briefly mentioned as a probable diagnosis but as a newcomer to Canada who was juggling school, work and raising her family, Tzvia assumed it was stress-related. She felt no other symptoms and went back to her normal routine.
"I forgot about being a nurse and a health care professional and I said, 'oh no, it's just a mistake.'"
As the years progressed, so did the symptoms. Tzvia started to feel fatigue, developed gallstones and had another pancreatitis attack. She also developed cholecystitis, an inflammation of the gallbladder.
In 2016, Tzvia underwent a cholecystectomy, a surgery to remove her gallbladder hoping it would resolve her health issues. She recovered, but the blood work still indicated something was wrong.
"I was looking at my own blood results and thought, 'Oh my gosh, if we saw someone like that, we'd put them on life support.'"
By then, Tzvia and her family had moved closer to Toronto and the long shifts on the Critical Care Unit were becoming increasingly difficult.
"Fatigue is something that literally knocks you down," says Tzvia. "After a 12-hour shift, I would sleep for about 10 hours, whereas before I would sleep five or six hours and go, go, go."
In 2017, Tzvia accepted a position as a clinical coordinator at Trillium Gift of Life Network (TGLN), the organization in charge of organ and tissue donation, now part of Ontario Health. Her job was responding to calls from hospitals and coordinating the organ donation process from deceased donors.
By this time, Tzvia was being followed by a team at the Francis Family Liver Clinic, an integrated clinic located at the Toronto General Hospital, for management of PSC. The condition is a chronic liver disease in which bile ducts become inflamed and scarred, and eventually narrowed or blocked. The bile ducts carry digestive liquid bile from the liver to the small intestine, a function that is essential to life.
Tzvia's symptoms continued to progress. She started to feel itchiness and see skin changes. She developed ascites – when fluid builds up in the abdomen. People with the condition often have recurrent infections, extreme fatigue, headaches, anemia and inability to concentrate.
"The decline is so gradual that by the time you start to feel it, the disease has already advanced, it is already eating you up," she recalls.
By then, Tzvia was working as a lung transplant coordinator at UHN's Ajmera Transplant Centre and learning more about what her potential transplant journey would look like.
"You know too much, like the side effects of immunosuppression and the worst outcomes that could happen," she says.
She didn't want the disease to control her life, so she tried to stay centred and lead a healthy lifestyle in preparation for the future. But in 2021, Tzvia was told she would need a transplant.
She was added to the deceased donor liver transplant list in December. She felt both scared and hopeful, but most of all, relieved.
"I knew I had started the final lap, and was looking forward to new beginning," Tzvia recalls.
Living liver transplant would be her best option for a timely transplant. Luckily, she had four people wanting to be her living donor: her sister, her husband and both of her sons.
Prior to Tzvia's diagnosis, her sister Maya didn't know much about liver disease. Once she found out that Tzvia would need a transplant she started researching on the UHN website to find out more about the donor assessment process, the risks involved and the experiences of other donors.
What she learned gave her confidence. She was the first one to submit her application.
"I rushed the application in before my nephew even had a chance to put it in because he's 21," Maya says. "I didn't feel he needed to go through that. I felt like I'm more suited financially and age-wise and mentally."
'It's a very rewarding experience'
Maya's living liver donor assessment started during the COVID-19 pandemic, with diagnostic tests, bloodwork and clinic appointments, many taking place virtually or on the phone. She was convinced she would be Tzvia's donor. She was right, she was a match.
"We're so glad that live donor liver transplantation is available for patients like Tzvia - it allows us to transplant patients before they get to the point of being critically ill," says Dr. Cynthia Tsien, Tzvia's transplant hepatologist, who is also the Education Director of the Ajmera Transplant Centre and an assistant professor at the University of Toronto. "While some patients need to have multiple donors worked up before finding a match, we were pleased that her donor's work-up went pretty smoothly."
On April 4 of this year, Maya and Tzvia underwent the seven-hour surgery.
"I was scared but because I never had surgery before, I didn't know what to expect and so I just took it all in stride," says Maya.
Everything went as planned – her husband drove her to the hospital at 7 a.m., she was taken into the operating room and then everything is a blur after that. All she remembers is being woken up by her brother-in-law checking in on her.
"I think he was just walking between the two rooms the whole night, until at some point I just yelled at him and I said, 'leave the room. I wanna sleep.'" Tzvia says. "And, of course, my husband was there. So I remember both of them visibly relaxing after that."
Maya was back home in time to celebrate Passover with her family but the first week was rough. She spent a lot of time on the couch and needed help to go to the washroom and walk up the stairs. Slowly she regained her strength and three months later she was completely back to normal.
Reflecting on her experience, Maya says, "I'd encourage everyone to consider becoming a living organ donor. It's a very rewarding experience.
"My sister and I were always close, but this created a special bond."
Tzvia is fully recovered and back at work, too. Throughout this journey she has learned to be her own advocate and says going through this experience has helped her connect better with her patients.
"I am one of them," Tzvia says. "And now, I appreciate the people in the system even more."
