{"id":243032,"date":"2025-10-27T07:59:11","date_gmt":"2025-10-27T07:59:11","guid":{"rendered":"https:\/\/www.newsbeep.com\/ca\/243032\/"},"modified":"2025-10-27T07:59:11","modified_gmt":"2025-10-27T07:59:11","slug":"this-woman-had-to-campaign-to-find-a-liver-donor-transplant-docs-say-there-should-be-a-better-way","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ca\/243032\/","title":{"rendered":"This woman had to campaign to find a liver donor. Transplant docs say there should be a better way"},"content":{"rendered":"

LISTEN | A stranger south of the border donated part of her liver:<\/p>\n

The Current22:58Would you become a living donor to a stranger?<\/p>\n

It’s pretty unusual in the medical system for a patient to be tasked with finding their own cure. But that\u2019s what happened to Stephanie Azzarello in 2023 when she was told she needed a liver transplant or she would die.\u00a0<\/p>\n

Azzarello has primary sclerosing cholangitis, a rare chronic liver disease that causes damage to the bile ducts and the liver.<\/p>\n

A decade after she was diagnosed, there was so much damage to her liver she went on the waiting list to get a liver from a deceased donor. But the Toronto woman was told it was very unlikely she\u2019d ever get an organ that way.\u00a0<\/p>\n

Instead, she needed to find someone who was willing to undergo a major surgery to donate part\u00a0 of their liver to her. No one in her family or close circle of friends was a match, so she was forced to go public.\u00a0<\/p>\n

\u201cI mean, I’m not asking for directions. I’m asking for a vital organ,\u201d recalls Azzarello, now 41. \u201cIt was terrifying, but I knew I didn’t have a choice because I was going to die on that list.\u201d<\/p>\n

\"ADr. Mamatha Bhat, a clinician scientist at the University Health Network Ajmera Transplant Centre in Toronto, is working to change how patients are prioritized for liver transplants. (Elizabeth Hoath\/CBC)<\/p>\n

Dr. Mamatha Bhat is trying to change the system that puts Azarello and so many other patients in that position. She\u2019s a clinician scientist at the University Health Network Ajmera Transplant Centre in Toronto. It\u2019s the biggest transplant hospital in North America.\u00a0<\/p>\n

Patients are prioritized based on the Model for End Stage Liver Disease, also known as the MELD score. This method takes the results of a few blood tests to determine how urgently someone needs a liver.\u00a0<\/p>\n

But Bhat noticed the model put women and people with rare conditions like PSC at a disadvantage. Even though they could be very sick, the results from the blood tests used for the MELD score didn\u2019t put them high on the waiting list.<\/p>\n

For example, one indicator of liver dysfunction is a high level of creatinine in the blood. But the MELD score isn\u2019t adjusted for the fact that female bodies have less muscle mass and therefore lower levels of creatinine to begin with, says Bhat. Likewise, men are more likely to die suddenly in circumstances that lead to organ donation, and some male livers are a poor fit for smaller female bodies.\u00a0\u00a0<\/p>\n

\u201cEach patient is a bit unique,” she said. A linear statistical model like MELD that only considers a few blood tests doesn\u2019t reflect that complexity, Bhat says.<\/p>\n

So starting in 2023 Bhat and her team got funding from the Canadian Institutes for Health Research to develop an artificial intelligence system that would evaluate many different factors and eventually replace the MELD score.\u00a0<\/p>\n

\u201cYou can really bring together multiple parameters, like blood test results, historical changes in those blood test results, changes in the clinical condition of the patient over time,\u201d said Bhat.\u00a0<\/p>\n

She says early results show the AI system can do a better job of prioritizing patients based on need. Bhat says she hopes it will be used in hospitals across the country in a year or two and cut down the mortality rate among people waiting.<\/p>\n

Data from the Canadian Institute for Health Information<\/a> shows there were 655 liver transplants in Canada in 2024. Another 609 remained on the waitlist during that time, and 89 people died while waiting.<\/p>\n

That\u2019s why Bhat tells patients like Azzarello to try to source their own livers in the meantime.<\/p>\n

The campaign<\/p>\n

About half a year after going on the waitlist, Azzarello was too sick to work. She went on leave from her job teaching art history at the University of Toronto.<\/p>\n

Her social media campaign to find a donor took a few months to really take off. But early in 2024, her face popped up on a phone late one night in Portland, Oregon.\u00a0<\/p>\n

\u201cI was kind of an insomniac during that time period,\u201d said Trisha Beard. That night she\u2019d just fed her one-year-old and was scrolling social media when Stephanie\u2019s story caught her attention.\u00a0\u00a0\u00a0<\/p>\n

\u201cWe were born five days apart,\u201d says Beard. \u201cHer having been through so much sickness for so many years \u2026 I could put myself in her shoes of what that would look like and feel like. And the idea that there was something, possibly, that I could do that would make that better for another human that was suffering, I think that really drew me in.\u201d<\/p>\n

At first, someone involved in Stephanie\u2019s campaign told Beard she couldn’t donate because she lives in the United States. But she decided to send her paperwork to the hospital anyway. Within hours, someone with the transplant centre contacted her and asked how soon she could come to Toronto to get tested to see if she was a match. (The Ontario health system would cover her travel and medical costs.)\u00a0<\/p>\n

A few weeks later, Beard was going through tests in the same hospital where Azzarello was once again a patient. Her condition was deteriorating, she had jaundice, was malnourished and had sleep reversal where she slept all day and was up all night.<\/p>\n

Azzarello had been reluctant to meet Beard \u2014 she didn\u2019t want to get her hopes up \u2014 but she eventually agreed.<\/p>\n

\"AAzzarello, left, is pictured with Trisha Beard, from Portland, Ore., at the Toronto hospital where Beard donated part of her liver to Azzarello. (Submitted by Stephanie Azzarello)The moment they met<\/p>\n

She clearly remembers the first moment she saw Beard walking down the hallway.\u00a0<\/p>\n

\u201cI just made a beeline for her. I may have pulled out my IV because she was real,\u201d Azzarello said. \u201cI just grabbed her and I held her and I held so tightly because I thought what if she just evaporates?\u201d\u00a0<\/p>\n

The women chatted and cried for more than an hour.\u00a0<\/p>\n

\u201cShe was obviously very sick,\u201d Beard said. \u201cAnd my just thoughts went to ‘why can’t we do this now? Why can’t we just make a spot in the schedule? Let’s make it happen. Let’s do it today.’\u201d\u00a0<\/p>\n

Beard flew home that afternoon, and the next week they got the news. She was a match.\u00a0<\/p>\n

Beard says she was excited but also nervous.<\/p>\n

\"AAzzarello is now back at her job teaching art history at the University of Toronto. (Elizabeth Hoath\/CBC)<\/p>\n

\u201cI am very aware that this was a very serious surgery. And so my odds were good, but I also knew that there was a chance that things wouldn’t go the way that we had expected.\u201d<\/p>\n

Beard wrote both of her young children letters, just in case. But she never thought about backing out.\u00a0<\/p>\n

\u201cI come from a religious family and so I felt this was part of God’s calling,\u201d Beard said of her thinking at the time. \u201cThis is where I’m supposed to be. This is what I’m supposed to be doing. I’m just sitting in this and trusting that this is gonna work out the way that it’s meant to.\u201d<\/p>\n

On June 12, 2024, after more than 12 hours of surgery, part of Beard\u2019s liver was transplanted successfully. The liver regenerates to full size three months after surgery in both the recipient and donor.\u00a0\u00a0<\/p>\n

\u201cI didn\u2019t give birth to a third life, but I was able to give life a third time,\u201d says Beard. She calls Azzarello her family now. They talk and text every week and are making plans for a reunion visit.\u00a0<\/p>\n

Though Azzarello takes more than 20 pills a day and goes for monthly blood tests, she is back at work and feeling good.\u00a0<\/p>\n

\u201cI have this healthy moment given to me by my beautiful organ, by my beautiful organ donor. I just live my life,\u201d says Azzarello. \u201cI\u2019m alive because of her.\u201d\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":"LISTEN | A stranger south of the border donated part of her liver: The Current22:58Would you become a…\n","protected":false},"author":2,"featured_media":243033,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[49,48,84,392],"class_list":{"0":"post-243032","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-healthcare","8":"tag-ca","9":"tag-canada","10":"tag-health","11":"tag-healthcare"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/243032","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/comments?post=243032"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/posts\/243032\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media\/243033"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/media?parent=243032"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/categories?post=243032"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ca\/wp-json\/wp\/v2\/tags?post=243032"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}