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Updated 31 October 2018

'I know how it feels to be on the verge of death' – Liver transplant survivor on her rare disease

Madimo was diagnosed with a rare disease when she was 19 years old. Ten years later the liver transplant survivor is living life to the fullest.

Madimo was diagnosed with a rare disease when she was 19 years old. Ten years later the liver transplant survivor is living life to the fullest. 

This is her story.

“My name is Madimo Mimo Mokgosi.  I grew up in a small town in the Free State called Odendaalsrus, but I call Johannesburg home now. I moved here in 2008 after I was diagnosed with a rare disease called autoimmune hepatitis. I was 19 years old.

Autoimmune hepatitis occurs when your immune system mistakes your liver cells for foreign aggressors and creates antibodies to attack them. In simple terms, my body was fighting my own liver as if it didn’t belong to me. Doctors don’t know precisely why this occurs, but certain risk factors have been identified, including a family history of the disease and being female.

The illness is treatable but not curable. I was on treatment for two years and everything seemed fine when I stopped the treatment due to financial problems. But then in 2013 I started experiencing symptoms again: enlarged liver (hepatomegaly), abnormal blood vessels on the skin (spider angiomas) abdominal distention (swelling). I watched my stomach and legs swell, I had dark urine and black stools, the skin around my eyes was yellow (jaundice) and I was just itching everywhere because of a build-up of bile. This time treatment wouldn’t be enough.

I was introduced to Prof E Song, Prof Jean Botha and the transplant team at Wits Donald Gordon Medical Centre. Prof Song explained to me that my liver was in critical condition and the only option was a liver transplant. I was placed on the organ waitlist in June 2013.  Hope arrived in the form of Prof Botha, head of liver transplantation at Donald Gordon, when he suggested a family member would be able to share part of their liver with me.

I thought, this is my shot. I wouldn’t have to sit on the waiting list for an organ donation – in South Africa, demand far outweighs availability so the list is extremely long. My family all did the tests.

But my father had too many health issues, my brother was too young and my sister was a perfect candidate until the very last test showed she was anaemic and couldn’t help. Prof Botha looked at my dad and said: two things are going to happen. It’s either we get your daughter a liver or we buy her a coffin. And I’m going to make sure we don’t put her in that coffin.

On October 25, 2013 Prof Botha kept his word and I received my gift of life. I’ve just celebrated five good years with Faith. I named my liver Faith because I believed I’d receive a liver but I just didn’t know when. For me, every year feels like a brand-new year due to the possible complications, liver rejection being the major one.

My major support system is my family and friends. I have such amazing friends who I can just call regardless of what time of day it is. They’ll encourage me to push and never give in and people at work have been so supportive too. On my weak days the first thing everyone says is ‘CALL YOUR DOCTOR’. To be honest, I lost my mother when I was 10 and that’s where I mostly draw my strength. I had to become strong for me and the family, and most importantly, God, because I believe He gives His toughest battles to His strongest soldiers. Let me not forget my transplant team for not giving up on me – they are like my spine.

What I have learnt, or what I’ve taken away from the experience, is that I’ve stopped being that person who complains. Instead I’m thankful for the gift of life because I know how it feels to pray, asking only for another day to live.

I know how it feels to be on the verge of death, not being in control or not knowing what could happen next. When you’re reminded, ‘You’re going to die if we do not get you that liver’. I have become the most positive person. Even in a wrong, I look for a right and I constantly remind people to live for the moment and that, every day, you need to make each day worth living.

The major one would be encouraging people to donate organs. I was saved by someone I will never get to know, but I know a part of him lives – he lives in me.”

Do you have an inspiring story you would like to share with us? Simply send us an e-mail at Mystory@Drum.co.za

 
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