Doctors told Madimo Mokgosi she would die if she didn’t receive a new liver. That was nine years ago.

At age 18, Madimo Mokgosi had ambitions of becoming a teacher and was enrolled at university to study education. “One day, I had chest pains that felt like spasms,” she recalls. It wasn’t her first symptom – Madimo’s eyes had started turning yellow. Her plans to study were shelved and she spent the next month in hospital. After weeks of tests, a liver biopsy finally confirmed a diagnosis –autoimmune hepatitis

Autoimmune hepatitis is a disease where a person’s immune system gets dysregulated and produces antibodies against the liver,” explains Dr Francisca van der Schyff, a transplant surgeon at Wits Donald Gordon Medical Centre transplant unit. “This leads to chronic damage of the liver tissues over time. The liver attempts to repair the damage but scar tissue is formed (cirrhosis), which then impedes blood flow into the liver (portal hypertension). The result is liver dysfunction with bleeding into the gastrointestinal tract and failure of the liver to break down toxins in the blood stream or produce normal amounts of protein.”

“Autoimmune hepatitis leads to chronic damage of the liver tissues over time.”

– Dr Francisca van der Schyff, transplant surgeon at Wits Donald Gordon Medical Centre.

While there’s no cure for autoimmune hepatitis, it can be managed. Madimo was put on chronic medication and her symptoms cleared up. She was finally able to go to university – a year later than planned – and she felt good. But when her father’s medical aid was depleted, she had no choice but to stop taking the medication. Three years later, her symptoms returned – with a vengeance. During an emergency blood transfusion, a doctor broke the news: the only way for her to survive was to have a liver transplant

The journey begins

Madimo was referred to Wits Donald Gordon Medical Centre. Over the years that followed, it would become a second home. Madimo went on the waiting list for a liver – but before she could receive a transplant, she needed to go through compatibility testing and a psychological evaluation.

A person is deemed a good candidate for a transplant based on three factors, explains Dr van der Schyff:

  1. Medical suitability: “This is the ability to survive a liver transplant. Cardiac, lung and kidney functions are tested.”
  2. Nature of the disease: “The disease should be reversible by liver transplantation with no other treatment options available.”
  3. Psycho-social suitability: “A person should have adequate social support, access to medical care and have no history of untreated psychiatric disease or substance abuse.”

Having passed the tests, Madimo was eligible to receive a new liver – but they needed to find a suitable one. “My doctor met with my family and explained that, because I’m petite, there was a possibility one of them could donate half their liver and over time it could grow into a whole.” The doctor made it clear that without the liver, this was a dire situation – without the liver, Madimo would die. All of the family were willing, but one by one, they were excluded. Madimo’s dad was too old; her little brother was too young. Her older sister came closest, until the last round of testing revealed she was anaemic. It was back onto the waiting list for Madimo.

The call that changed everything

“By this point I was in and out of hospital,” she recalls. The only medication she could take were painkillers to try and ease the excruciating pain that made even the touch of a blanket against her skin nearly unbearable.

Ten days after her sister had been excluded as a donor. Madimo received the call she’d been hoping for – a liver had become available. Within a couple of hours, she was being wheeled into surgery. And after years living with pain and uncertainty, she finally had hope. “I remember I was signing the consent forms and… you know when you don’t even read what you’re signing? Because this is what you’ve been waiting for – a better life and a healthier life.”

Gift of life

Madimo’s surgery took six hours. She doesn’t know who her donor was, only that he was male. She woke up with her family around her. “I saw my brother tearing up over me and I nodded to let him know I was okay,” she recalls.

The past nine years haven’t been all smooth sailing for Madimo. She has to take special care of her new liver. This includes avoiding food that could carry harmful pathogens – seafood is off the table entirely and meat must be very well cooked. She describes an incident where a single bite of braaied chicken that hadn’t been cooked properly nearly caused her body to reject the liver. She also needs to be on chronic medication for the rest of her life, which sometimes comes with its own challenges in the form of side-effects.

“The lifelong chronic medication will include immunosuppressant agents – these drugs prevent the immune system from rejecting the organ, and in Madimo’s case, to prevent the autoimmune disease from recurring and damaging the new liver,” Dr van der Schyff explains. “The levels of these drugs need to be monitored regularly, since over-immunosuppression puts the patient at risk of infections and cancers. Under-immunosuppression will lead to organ rejection.”

However, even with the challenges she’s faced, Madimo is positive and grateful for a life that could so easily have been taken from her. “I’ve been doing amazingly well. I feel healthy. Even when I’ve been sick, I’ve got such a strong, amazing liver that just pushes through. I’ve become more active and I don’t get tired like I did before. It’s literally a gift of life.”

She loves sharing her story and wants to use it to inspire others. “My goals are to continue inspiring, teaching the community about rare illnesses from my experience, and giving hope. I’m also planning on travelling – not just locally, but internationally, giving hope and doing referrals for those who reach out for medical assistance.” 

Images Theanna Breugem

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