Afsana Lallani: From PSC patient to live liver organ donation advocate
December 1, 2022
Many folks in the Canadian PSC community might recognize the name Afsana Lallani. That’s because she is a strong advocate for patients with primary sclerosing cholangitis (PSC) and more recently a vocal proponent for live liver organ donation.
Afsana was diagnosed with PSC while still in high school at the age of 16. Her PSC progressed and she was listed for liver transplant in early 2021. With no live donor match in her immediate family, Afsana took charge of finding a match and created the Donor 4 Afsana Lallani Facebook page.
The first post on Facebook reached 6,176 people and garnered 841 reactions, 566 shares and 252 comments.
Chronicling her journey through social media was a new experience for Afsana. Posting publicly about PSC with images capturing the reality of a PSC patient in the hospital was an important element to the campaign.
Showcasing intimate details of your health, however, isn’t easy. “I felt vulnerable,” says Afsana. “You are conscious about your self-image when you put that information out there.” After an 8-month push, punctuated with the full gamut of PSC symptoms, complications like esophageal varices and additional interventions such as an NG tube for nutrients, an anonymous donor came forward.
Learning you have a match is an emotional journey all on its own, with the mixed feelings of excitement, relief, and gratitude. Afsana recalls the level of uncertainty accompanying the news of a match. “Although you have a match, there is no guarantee that the transplant will happen until the moment surgery begins.”
Compounding the uncertainty is maintaining your physical health to the best of your ability leading up to the transplant date. For Afsana, getting an unexplained set of cold symptoms in the COVID era a few days before the transplant didn’t help. Fortunately, her transplant was a success and Afsana was full of energy walking laps around the unit a few days after the surgery. However, she spiked a fever and went into acute rejection, remaining in the hospital about a month before she was discharged. And while the road was bumpy, Afsana is going on 11 months post-transplant with no symptoms of PSC.
A positive spin-off effect of Afsana’s campaign is that families reach out, almost daily, to tap into her breadth of experience with running a social media organ donation campaign.
Afsana’s impact on promoting living organ donation began while searching for her own donor, as several individuals who sought to be a match chose a ‘non-directed’ option, meaning if they weren’t a match for Afsana, they could be a match for another patient in need. This included one donor from another province who ended up being a match for a pediatric patient at the same transplant centre.
Afsana was featured as part of the Great Actions Leave a Mark Campaign from the University Health Network’s Centre for Living Organ Donation in September. Supporting and promoting the great work of the Centre for Living Organ Donation is personal for Afsana as she was transplanted at the Ajmera Transplant Centre in Toronto, Canada.
She encourages those awaiting transplant to keep their spirits up and try to view the search through the donor’s perspective. She also wants prospective donors to know there are many resources available, including support from the Trillium Gift of Life Network (part of Ontario Health).
Despite a tumultuous transplant journey, Afsana remained positive, “I’ve always been one to look on the bright side. It’s important to have a support team around me. I couldn’t have done it without them.”
Afsana Lallani’s PSC and live donor journey was written by Matt Hodgson, a volunteer writer with PSC Partners Canada.
