For 42-year-old Lyndsay Richholt, time is running out.
The Kelowna woman's quality of life has drastically declined over the past year due to liver disease caused by Autoimmune Hepatitis (AIH), which she was diagnosed with 18 years ago.
“My auto immune system sees my liver as a foreign entity and attacks it,” she explained in an interview with KelownaNow.
Lyndsay’s condition was stable for many years with treatment and a healthy lifestyle. But things took a sharp turn in 2023, and by May 2024, she was referred for a transplant.
“Given my young age and my healthy lifestyle and the fact that I have a liver disease from an immune disease, not alcohol, I would skyrocket to the top of the priority list,” she said.
Since she was placed on the transplant waitlist in December 2024, her condition has continued to deteriorate. Now, Lyndsay and her family fear she may not survive the wait—and they’re calling on BC Transplant to urgently reform the system they say is failing patients like Lyndsay.
“It’s a desperate plea for myself but also for many others struggling with my similar disease in Canada,” Lyndsay said.
In emailed statements to KelownaNow, Krystal, a family friend, and Lyndsay explained the extensive list of symptoms caused by her condition, which includes refractory ascites, hepatic encephalopathy, sarcopenia, diabetes caused by long-term use of a medicine prescribed by her doctor and portal hypertension.
“I haven’t been able to work in over a year. I can’t drive. I need 24-hour care, I have extreme fatigue and drowsiness,” she said.
While she meets the criteria for a liver transplant and was added to the waitlist, Lyndsay and her family have experienced several obstacles and challenges trying to get her a new liver.
One of the most pressing issues, Lyndsay explained, is the use of the MELD (Model for End-Stage Liver Disease) score—an international standard that prioritizes liver transplant candidates based on blood test results.
Lyndsay said the score may not accurately reflect the severity of liver disease in AIH patients, when compared to those with other liver diseases, including those caused by alcoholism.
Despite her deteriorating health, Lyndsay’s MELD score remains too low to trigger urgent intervention.
“While my doctors have indicated my timeline is only about six months, I’m very low priority with BC Transplant,” Lyndsay said. “Several doctors from Kelowna did reach out to have what’s called exception points added to my MELD score and that was denied.”
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Krystal explained that both doctors have witnessed Lyndsay’s medical situation and watched how much it has deteriorated. They reached out to BC Transplant to advocate for a reconsideration of her situation while emphasizing that her score should not be the sole factor in determining her eligibility for an immediate transplant.
“Unfortunately, despite their efforts, BC transplant has denied and overlooked their concerns” Krystal said.
KelownaNow has viewed copies of the letters from Lyndsay’s doctors, both of which confirmed that she has significantly declined in recent months and urged for immediate intervention to boost her chances of receiving a new liver.
Lyndsay said BC’s living donor program has become another barrier instead of a solution.
Lyndsay and her family received an “overwhelming response” from more than 50 potential donors, however, she claimed they were all rejected because they were from a different province and did not meet BC Transplant's policy of being a close friend or family member.
A statement from Vancouver Coastal Health (VCH) explained that the Living Donor Liver Transplant program was relaunched at Vancouver General Hospital in September 2024.
“Initially, the program only considered potential donors who had a pre-existing relationship with the recipient,” said a statement from Vancouver Coastal Health. “This is no longer the case, and the program now allows solicited or directed donation.”
Lyndsay further claimed that BC Transplant will only test three to five candidates at a time and testing can take up to three months, time that she does not have. The team at VCH said they could not comment further due to “patient privacy and confidentiality.”
Lyndsay compared BC’s system to Alberta’s, where she said testing can be done a lot quicker.
Alberta Health Service (AHS) confirmed that potential donors can be referred to testing within days. However, the testing process for a living donor can take weeks to months but some exceptions can be made for “urgent cases.”
“One of the main factors affecting the length of this process is the number of potential living donors moving through the testing process at once, potentially leading to longer wait times for clinic visits, imaging and support services,” said the statement from AHS.
“We’ve made several pleas to BC Transplant but we keep getting told that we’re not the only ones struggling, this is just how it is, it’s been like this for 20 years and it’s probably not going to change,” Lyndsay said.
Lyndsay and her group of supporters said they fear her MELD score may never truly capture the severity of her suffering and that this could cause her to die while waiting for the transplant.
“While we’re not saying she is more deserving than anyone else waiting for life-saving surgery, we are calling for reassessment of how the transplant list prioritizes patients,” Krystal explained.
Lyndsay said she does not believe she is more deserving than others but the system needs to be overhauled.
“I just think we really need to examine the way we are prioritizing and looking at this,” she said.
“As patients, we can’t just be a number with a score tied to it. We really need our individual cases and our complications looked at.”
