Victoria resident Lori Roter, 56, has always led an active lifestyle. A former bodybuilder and avid softball player, she now spends her free time riding her motorcycle along Vancouver Island’s scenic roads, drawing, doing pottery and caring for her two parrots.
That changed a few years ago when she was diagnosed with a rare and incurable liver disease.
“I cried because I thought, ‘I’m too young to die,’” she said.
After experiencing sharp abdominal pain late one night in 2017, Roter went to her doctor, believing she was having a gallbladder attack.
“They discovered elevated liver enzymes,” she said. “They told me that something wasn’t looking right in my liver, so they wanted to keep me for more tests.”
Following a series of tests and worsening symptoms, Roter was diagnosed with primary sclerosing cholangitis.
Lori Roter was diagnosed with Primary Sclerosing Cholangitis (PSC) back in 2017. (Photo courtesy of Lori Roter)
Also known as PSC, primary sclerosing cholangitis is a rare, long-term liver disease caused by inflammation of the bile ducts. Affecting up to one in 10,000 people in Canada, the disease is currently incurable.
The only definitive treatment for PSC, Roter said, is a liver transplant. Without one, life expectancy is typically 10 to 20 years after diagnosis.
However, waiting for a liver is easier said than done, Roter said, as patients often die while waiting for an organ.
According to the Canadian Institute for Health Information, 655 transplants were performed in 2024, while another 609 people were waiting for a transplant. That year, 89 people died while on the waiting list.
Because PSC ranks lower on the transplant priority list, Roter said she is now seeking a living liver donor to bypass the wait and improve her chances of receiving a transplant.
“Somebody who has alcohol use disorder or fatty liver disease will most likely get prioritized for a liver over somebody with PSC in most instances,” she said.
Now waiting for what she called an “angel,” Roter is appealing to Canadians willing to donate a portion of their liver to save her life.
However, she is transparent that such requests come with serious implications and considerations.
“For (donors) it is a big process, so it’s not something to be taken lightly,” she said. “It’s a major operation, and the risk factors are higher than for donating a kidney.”
That said, Roter said she has familiarized herself with the procedure and understands that a large medical team would be involved from the initial assessment through post-operative care if the process were to move forward.
Since Victoria News first reported on Roter’s situation on Jan. 7, she said one person has expressed interest by email. She said she directed the individual to BC Transplant, which oversees all donor procedures.
Potential donors must be in good health, between 19 and 55 years old, have blood type A or O, and have no history of cancer, except certain skin cancers. The evaluation process can take several months and requires visits to a transplant centre in Vancouver. Financial support and paid leave are available for donors.
Roter is asking anyone who meets the criteria and may be interested in helping to contact the Living Donor Liver Program at BC Transplant. The program can be reached at 604-875-4111 ext. 66523, toll-free at 1-855-875-5182, or by email at liverdonornurse@vch.ca.
“It just has to be the right person who feels that they want to really help and understand that it’s not an easy thing,” Roter said. “I want to live, but the last thing is to impact somebody else long term.”