Kelowna mother Lyndsay Richholt was told in March that she has approximately six months to live, her fate now resting on communication from BC Transplant.
When Conservative MLA for Kelowna Centre, Kristina Loewen, heard of Richholt’s plight, she immediately called on the NDP government for immediate reform within BC Transplant.
Richholt was diagnosed with autoimmune hepatitis about 18 years ago and was told that she would one day need a transplant. At the time, it was explained to her that, given her young age and that it isn’t self-inflicted liver disease from alcohol, she would “skyrocket” to the top of the priority waitlist.
“Lyndsay has been a model of patient, advocacy and optimism,” said Loewen. “Yet, she has been repeatedly failed by communication breakdowns, administrative errors, and a system that seems to have forgotten the human being it serves.”
However, patients must be referred by their specialist to the Liver Transplant Team at Vancouver General Hospital in Vancouver.
“They’re supposed to do a follow-up review every three to four months,” said Richholt, of how the waitlist process works. “They forgot about me. I didn’t get a review for eight months, which they said was a communication error.”
Riccholt now follows up with the transplant coordinator every two weeks, as well as two live donors she believes have been approved for her case.
Richholt said that about 50 donors came forward in her case, friends and family, but claimed BC Transplant rejected them because it said they must be related to her. After complaining to the media, Richholt said BC Transplant stated that this was an error and then started testing individuals.
However, according to BC Transplant, accepting live donors who are not related to the patient is a recent change.
“BC Transplant says they can do live testing for donors in three months. I’m at the six-month mark, and since August, I’ve been told that we should have an update for you soon, one to two weeks,” said Richholt. “In Toronto, at the live transplant clinic, they complete testing of live donors in three weeks.”
Now entering her tenth month on the liver transplant waitlist, Richholt feels she is just a number and score in a system that miscalculates the severity of her disease.
Jeremy Deutsch with Vancouver Coastal Health (VCH) said BC Transplant works in collaboration with the regional health authorities and is a program of the Provincial Health Services Authority and that the Living Donor Liver Transplant program was relaunched at Vancouver General Hospital (VGH) in September 2024.
The living donor process is driven by the potential donor and takes a minimum of three months. Throughout the evaluation process for living donors, the donor will be asked if they wish to proceed, which is why donor information is confidential.
“They can change their mind and withdraw from the program at any time without a reason and their privacy and confidentiality will be respected. For these reasons, the status of any potential donors is not communicated to intended recipients at any time during the process,” said Deutsch.
According to VCH, the deceased donor waitlist and living donor process are completely separate and happen concurrently.
“Living donation involves a stringent process that necessitates discretion and confidentiality in order to maintain our ethical commitments,”said Deutsch. “Wait times for deceased donor liver transplants vary widely depending on many factors.”
Yet, Loewen put the onus on BC Transplant, stating that the it “must take responsibility and immediately review both its MELD (Model for End-Stage Liver Disease) scoring process and its communication failures.”
The MELD score is calculated using the patient’s serum creatinine, bilirubin, International Normalized Ratio, and, in newer versions, sodium levels. The MELD score is reportedly continuously being refined.
Richholt explained that she understands MELD as a model for end-stage liver disease which stated is widely known for failing to consider autoimmune patients, then incorrectly calculating their MELD score.
“My MELD score is incorrect. I’m much sicker than what the score they have calculated indicates, but there’s nothing they can or will do about it,” said Riccholt. “It should be a 25, but it’s only calculable to 11; my lifespan is based on that 25.”
In response to questions about MELD, Deutsch said people with “higher MELD scores are usually placed higher on the list and as such people with higher MELD scores are more likely to die sooner than people with lower MELD scores.”
“The MELD-Na score is not the only tool used to assess patients who are waiting for transplant. The transplant program frequently reassesses patients based on clinical updates,” explained Deutsch.
According to BC Transplant, the VCH liver transplant program is constantly reviewing its guidelines and processes to ensure the best care for all patients.
Richholt also said that two G.I. doctors have written letters to BC Transplant on her behalf, confirming that her MELD scores are inaccurate, and that a transplant is needed, but stated the physicians did not received a response.
However, physicians do not refer patients to BC Transplant but instead to the Liver Transplant Team at Vancouver General Hospital in Vancouver, which is overseen by VCH.
“I really went into this with a lot of trust in my healthcare system, that they’re going to look after me and everything’s going to be okay, and I’ve lost all trust,” said Richholt.
Richholt explained that she has 10 people willing to fly to Vancouver and have surgery right away, and is just awaiting updates from BC Transplant.
“Lyndsay’s courage has inspired people across our province. She deserves compassion, transparency, and decisive action, not the silence and excuses so frequently heard from this BC NDP government,” said Loewen.
As of today, Richholt says that she and her family will continue to write, call and speak out about her situation. She said that her first concern is receiving word of an approved donor and surgery date, but then her next battle will be how long the wait will actually be to get the surgery.
Those wishing to support Richholt and her family can do so through her verified GoFundMe.
~Editor’s note: This story has been updated with comments from BC Transplant.