Life after transplant: Afsana’s journey with a rare liver disease

_“It was exam week in high school when I came down with the flu, accompanied by extreme abdominal pain that suggested something more serious was lurking in my body. I ended up in the ER, where blood work, procedures, and multiple MRIs revealed the diagnosis: primary sclerosing cholangitis (PSC), a rare liver disease. I was just 16 years old.

My doctor explained that PSC is an autoimmune condition of unknown cause. I was told that people with PSC generally live for about 15 years with their original liver. After that point, most require a transplant. My family was shocked hearing the news, but at first, I felt unaffected. PSC is very rare, especially in kids or adolescents, so I figured that I had fulfilled the prevalence statistic, hoping that no other kids would likely be diagnosed that year. I felt okay being the one to take on that burden if it meant that no other little boy or girl would have to experience it.

Throughout the rest of high school, my symptoms were somewhat manageable, though they got bad whenever I was under a lot of stress. When I went to university, I decided to study nursing. Having grown up with other illnesses, like rheumatoid arthritis and Crohn’s disease, I spent a lot of time at SickKids, and then my experience with PSC further inspired me. Great nurses fuelled my dream, including my mom, while a few bad hospital experiences turned that dream into a mission.

But the stress of the nursing program took a toll on my body. I ended up in the ER with extreme pain and liver infections whenever I had tests or exams. My liver enzymes were constantly climbing and, by the end of my second year, my liver had reached complete failure. New symptoms had even joined the team: pruritus (the feeling of an itch that I could never scratch), internal bleeds, and brain fog.

At this point, I began plasmapheresis, which is essentially dialysis for the liver. I was constantly sick, and my skin turned so yellow-grey from jaundice that I could’ve gone as a pumpkin for Halloween without a costume. I desperately wanted to continue my studies and keep pursuing my dream, but I had to hit pause and focus on my health.

“I was dying and in need of a transplant to survive, or I’d soon be palliative.”

This was the moment my doctors had warned me about. I hadn’t made it 15 years — I’d barely made it six. I was dying and in need of a transplant to survive, or I’d soon be palliative. Unfortunately, I wasn’t a good candidate for a deceased donor, and no one in my family was a blood type match for a living donation. My only option was a living donation from a stranger, but I simply couldn’t imagine asking a stranger to endure the pain, risk, and long recovery involved in donation. I had some hard conversations with my doctors and my parents and even considered applying for MAID (medical assistance in dying).

What changed things for me was when my family and health care team pointed out that there are people out there, good people, who would find great joy in being able to save someone’s life through living donation. ‘Why,’ they asked, ‘would you deny them that opportunity?’

After much reflecting, I decided to choose life. So I took to social media to launch a public appeal for a living donor. The response was incredible. The comments, likes, and shares exploded and, before I knew it, my story had spread globally. It felt like the entire world was hugging me. 

Nine months later, I found my donor and underwent a transplant in November of 2021. Leading up to it, I had a lot of anticipatory anxiety, but felt a wave of calmness before entering the operating room. The recovery afterwards, though, was more difficult than I had imagined. I’ll be immunocompromised and on anti-rejection medications for the rest of my life. Despite everything, I feel nothing but gratitude for my donor and the gift of life every single day.

I was finally able to graduate, and officially became a registered nurse. Being immunocompromised does make nursing harder — I have to be extra vigilant about my health, making sure I’m fully vaccinated, always taking extra precautions, and avoiding truly dangerous situations. But with the support of my colleagues and managers, I’ve always found solutions. I love nursing so much, and my life experiences have only deepened the empathy I have for my patients in similar situations. I’ve especially fallen in love with my job in pediatric palliative care at Emily’s House and look forward to continuing my career there.

None of this would have been possible without my donor. Every day, I look at the big, beautiful scar that marks our journey together — proof of our strength, perseverance, and forever bond — and I smile, grateful to still be alive in this beautiful world.”

‍Return to the Immunocompromised Voices collection.