This woman had to launch a campaign to find a liver donor. Transplant docs say there must be a better way

It is very unusual in the medical system for a patient to be tasked with finding his or her own treatment. But that’s what happened to Stephanie Azzarello in 2023 when she was told she needed a liver transplant or she would die.

Azzarello has primary sclerosing cholangitis, a rare chronic liver disease that damages the bile ducts and liver.

A decade after diagnosis, her liver damage was so severe that she went on a waiting list to receive a liver from a deceased donor. But the Toronto woman was told it was highly unlikely she would ever get an organ this way.

Instead, he needed to find someone willing to undergo a major surgery to donate part of his liver to him. No one in his family or close friends matched him, so he was forced to go public.

“I mean, I’m not asking for directions. I’m asking for a vital organ,” recalls Azzarello, now 41. “It was scary, but I knew I had no choice because I was going to die on that list.”

Dr. Mamta Bhat is trying to change the system that puts Azzarello and many other patients in that situation. He is a physician scientist at the University Health Network Ajmera Transplant Center in Toronto. It is the largest transplant hospital in North America.

Patients are prioritized based on the Model for End-Stage Liver Disease, also known as the MELD score. This method takes the results of certain blood tests to determine how urgently someone needs a liver.

But Bhat saw that the model put women and people with rare conditions like PSC at a disadvantage. Even though they were very sick, the results of the blood test used for MELD scores did not keep them higher on the waiting list.

For example, one indicator of liver dysfunction is high levels of creatinine in the blood. But the MELD score doesn’t adjust for the fact that women have less muscle mass and therefore lower creatinine levels to begin with, Bhatt says. Similarly, men are more likely to die suddenly in organ donation situations, and some men’s livers are not suitable for the bodies of younger women.

“Each patient is a little unique,” ​​he said. A linear statistical model like MELD that only considers a few blood tests doesn’t reflect that complexity, says Bhatt.

So starting in 2023, Bhat and his team received funding from the Canadian Institutes of Health Research to develop an artificial intelligence system that will evaluate many different factors and ultimately replace the MELD score.

“You can really bring together multiple parameters, like blood test results, historical changes in those blood test results, changes in the patient’s clinical condition over time,” Bhatt said.

She says early results show the AI ​​system can do a better job of prioritizing patients based on need. Bhat says he hopes it will be used in hospitals across the country in a year or two and reduce the death rate among people waiting.

Data from the Canadian Institute for Health Information Reveals 655 liver transplants expected in Canada in 2024During that time, 609 others remained on the waiting list and 89 people died while waiting.

That’s why Bhat tells patients like Azzarello to try to get their own liver in the meantime.

Campaign

After about half a year of being on the waiting list, Azzarello became too ill to work. She went on leave from her job teaching art history at the University of Toronto.

It took a few months for their social media campaign to find a donor to really take off. But in early 2024, her face appears on a phone late at night in Portland, Oregon.

“I was kind of an insomniac during that time,” Trisha Beard said. That night she had just fed her one-year-old and was scrolling through social media when Stephanie’s story caught her attention.

“We were born five days apart,” says Beard. “She’s been through so much illness over the years… I can put myself in her shoes to see what she would look like and how she’d feel. And the idea that there was something, possibly, that I could do that would be better for another human being who is suffering, I think that really appealed to me.”

At first, someone involved with Stephanie’s campaign told Beard that she could not donate because she lived in the United States. But she still decided to send her paperwork to the hospital. Within a few hours, someone from the transplant center 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 will cover his travel and medical costs.)

A few weeks later, Beard was undergoing testing at the same hospital where Azzarello was once again a patient. Her condition was worsening, she developed jaundice, was malnourished and her sleep was reversed, where she would sleep all day and stay awake all night.

Azzarello was reluctant to meet with Beard – she did not want to get her hopes up – but eventually she agreed.

the moment they met

She clearly remembers the first moment she saw Beard walking down the hallway.

Azzarello said, “I just made way for her. I might have taken out my IV because she was real.” “I just grabbed her and I held her and I held her so tight because I thought what if she evaporated?”

The women kept talking and crying for more than an hour.

,She was obviously very sick,” Beard said. “And all I thought in my mind was, ‘Why can’t we do this now?’ Why can’t we make space in the schedule? let’s make it happen. Let’s do it today.”

Beard went home that afternoon, and he received the news the following week. She was a match.

Beard says she was excited but also nervous.

“I was well aware that this was a very serious surgery. And so my chances were good, but I also knew there was a chance that things wouldn’t go the way we expected.”

Beard, probably, wrote letters to both of his young children. But he never thought of retreating.

Beard said of her thinking at the time, “I come from a religious family and so I felt like this was part of God’s calling.” “This is where I need to be. This is what I need to do. I’m just sitting in it and trusting that it will work out the way it’s supposed to.”

On June 12, 2024, a portion of Beard’s liver was successfully transplanted after more than 12 hours of surgery. The liver of both the recipient and the donor regenerates to full size three months after surgery.

“I didn’t give birth to a third life, but I was able to give life to a third time,” says Beard. She now calls Azzarello her family. They talk and text every week and are planning a reunion trip.

Although Azzarello takes more than 20 pills a day and goes for monthly blood tests, she is back to work and feeling well.

“I have this healthy moment that’s been given to me by my beautiful organ, my beautiful organ donor. I just live my life,” Azzarello says. “I’m alive because of him.”