Healing together: A couple’s path through living donor transplant surgery and recovery
March 1, 2024
Jessica was diagnosed with ulcerative colitis in 2002 and PSC in 2003. The primary sclerosing cholangitis (PSC) diagnosis came quickly after some of her liver enzymes were high and she had some itching. She was fortunate to have a doctor then who knew about the connection between PSC and ulcerative colitis. Jessica had no idea that her liver was under stress at that time.
Fast forward to the first quarter of 2022, Jessica’s health was declining more rapidly as time moved on. She went back on Toronto General’s liver transplant waiting list after initially being on it in 2013. She was advised by her hepatologist that a living liver donation would be her best chance at survival. However, after a few months of waiting, there had been no movement for applicants to be her live liver donor.
So, during the summer of 2022, she and Ian started campaigning harder for living donor applicants. In August, Jessica distributed hundreds of cards describing her need for a live donation at a Norwex company sales conference. Friends, Shawna and Jackie asked Ian and Jessica to start a Facebook page on their behalf to help raise awareness for people to apply to be a living donor. Their Facebook group grew to over 100 people almost overnight after the conference.
This had a huge impact on getting the word out as before, Jessica only had a secondary match (not the same blood type) as a backup donor. While some people had applied to be a donor, they were turned down for one reason or another by the transplant team. As people were hearing back about their applications, they were sharing the experiences of applying and the answers they were getting on the Facebook page. This gave Jessica and Ian some sense of relief. Finally, people were applying! Her urgent need was being shared online, and people were willing to help.
But Jessica’s health was declining quicker in the fall of 2022, when she needed weekly albumin injections to help relieve her water retention. Weekly drives to Toronto General for Jessica’s injections were the new “norm” for them. Their hepatologist said that to turn the corner of needing and getting a transplant, it should be walked around slowly. But with the momentum of her health’s decline, the need for a liver transplant sped up.
Without a match, this waiting was a tough place to be in for them both. Ian could not take it anymore seeing his wife of 14 years continue to suffer as the health of his family comes first. So, he applied to be a living donor, somewhat behind Jessica’s back. Even though they had talked about him applying much earlier, they were both hesitant for him to apply as it was only the two of them and they did not have someone who could easily be both of their caregivers after surgery.
With Jessica’s complicated medical history there was also concern around who they would find to be Jessica’s caregiver and advocate. Ian shared this serious concern with his pre-evaluation nurse. She replied: “It is easier to find a caregiver than to find a donor”. As soon as he had heard this, Ian knew then that he had to continue with his application and informed Jessica of his intentions before she found out by herself. As it turns out, Jessica had already found his application. She had seen the doctors’ letters to Ian on their shared myUHN patient portal online records. Lucky for Ian, Jessica couldn’t be too upset with him, after all, he was going to be her donor!
The transplant team at Toronto General Hospital then called him within two weeks of his application submission. Ian then had extensive health evaluations to see if he could safely donate and would be a match over the next two to three weeks. This involved blood work, X-rays, CT, and MRI scans, and a visit with a social worker.
After Ian’s approval to be a donor, they were scheduled to have the surgeries about five weeks later. However, suddenly, there was concern about Jessica’s gallbladder and blood work status. This led to debate if the transplant surgery would continue as planned. Fortunately, their surgeries successfully occurred on December 7, 2022. Ian was discharged on December 12, while Jessica was discharged on December 17. But they stayed close to the UHN hospital over the next couple of months for follow-up appointments as they recovered. They are now recovered but it has been a non-binary journey. Jessica says that it is a day-and-night difference in her health after the transplant. They are very appreciative of everyone’s support.
Throughout their transplant journey, Jessica and Ian kept a video journal which was later edited to make a film. Jessica stated that when she was listed for the transplant, there was only so much information she could get from friends or hospital factsheets. She couldn’t find any videos of someone sharing their experience of the transplant evaluation process on any online social media platforms. No personal transplant journeys were posted. So, Jessica decided to make videos for herself and others. This was to help people understand what they were going through. Even though there were days when she was sick and did not feel like filming, she would film something and post it.
What had started as a series of video diaries, became a means of huge support for her and Ian. She has received plenty of great feedback and comments from others who were experiencing their medical journey. These became therapeutic for Jessica by establishing connections with them as they shared their journeys. She did not feel so alone. They also have had strangers reach out to them to tell them how much their videos had helped them.
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Our Liver Love Story follows Jessica Travis, a patient living with PSC, and Ian, Jessica’s husband and caregiver, as they travel down a curvy road in search of a living liver donor to save Jessica’s life. Niall McKay, Emmy-winning writer and editor, host of our Living with PSC Podcast, and liver transplant recipient himself, produced this moving, touching short film.
Ian and Jessica Travis of Ajax, Ontario shared insights of their journey with PSC and making their “A Liver Love Story” video with Kristian Hughes, a volunteer writer with PSC Partners Canada.
