Johannesburg - Madimo Mokgosi felt cold on a hot day. She was 18 years old, led an active life, loved going out with her friends, but on this particular day six years ago,her life changed.
“My sister asked me why I was dressed so warmly when it was such a hot day,” the now-24-year-old prep school teacher told The Star.
Mokgosi started having chest pains, which were followed by visible blood clot marks on her neck. She was admitted to the Ernest Oppenheimer Hospital in Welkom for a month.
Doctors did blood tests but weren’t sure what was wrong.
“I was then transferred to (Netcare) Milpark Hospital where a biopsy was done and it confirmed that I had hepatitis autoimmune disease,” she said.
Hepatitis autoimmune disease is a rare chronic condition where the immune system attacks the liver, causing inflammation of the liver, said Dr Sandile Mhlongo, a clinical specialist.
“It’s not clear how it gets initiated but there are clear genetic factors that come into play.
“Over a period of time, it leads to the inflammation of the liver and, therefore, the dysfunction of the liver,” he said.
Symptoms were not specific, Mhlongo said – they ranged from jaundice, chronic fatigue and a feeling of being unwell.
Mokgosi began a course of suppressant medication but had to stop treatment in 2010 as her father’s medical aid was depleted and the costs became too high to sustain.
Last year, her stomach started swelling and her previous symptoms returned.
“I went to Morningside Clinic in 2013, that’s when I heard I had liver failure and was transferred to Donald Gordon Medical Centre,” she said.
Mokgosi needed a liver transplant and she needed one fast.
She had just started working at the prep school in Sandton, and had recently joined Discovery Medical Aid Scheme and wasn’t confident her surgery would be authorised.
Mokgosi’s family was supportive.
Her sister was a match, but was found at the last minute to be anaemic and the procedure couldn’t go ahead.
In October2013, Mokgosi got the call from her medical aid she and her family had been praying for.
She had a new liver.
Transplant co-ordinator at Charlotte Maxeke Academic Hospital, sister Ntswaki Sakhele, said as much as she tried to counsel black families of patients on death’s door at the hospital to consider donating their organs, she is still met with frustration and challenges overcoming perceptions.
“Our (black African) people still have a lack of knowledge on what donating means.
“They fear how the rest of their family will view the deceased person who is now without organs.
“They also believe their ancestors won’t accept them in the afterlife if they are ‘incomplete’,” Sakhele said.
The Organ Donation Foundation of South Africa says that there are 4 300 people who need organ transplants.
The NGO’s executive director Samantha Volschenk said: “Factors such as traditional beliefs, lack of insight and exposure to information about transplantation have played a role in the way black families respond to the concepts of organ donation and transplantation.”
Volschenk said education and access to information and health care had improved and more black families had become aware of renal, liver and cardiac disease, dialysis, organ donation and transplantation.
Volschenk said families that had strong traditional upbringings and were unfamiliar with brain death valued cultural issues.
“They are also likely to only speak their home language, which will also make communication and understanding difficult… some families voice concern that body parts may be sold and used as ‘muti’ by sangomas,” she said.
A UCT study published in the February issue of the South African Medical Journal found that while most South Africans (black and white) felt positive about organ donation, black Africans were still reluctant to donate parts like the heart, liver and corneas.
The study titled “Attitudes to organ donation among some urban South African populations remain unchanged” surveyed more than 1 000 people.
About 41 percent of black Africans felt it was not their responsibility but that of their relatives to decide on whether their organs should be donated upon death.
Sakhele said out of the 100 people who needed transplants at the hospital, 95 were black Africans.
“They (black Africans) are the ones most plagued with lifestyle diseases such as hypertension and diabetes which can lead to renal failure,” she said.
“You’ll find 50 families in Avalon cemetery in one weekend burying their loved ones with their bodies intact, yet those organs could have saved more lives,” Sakhele added.
Volschenk said research data on organ donation was hard to come by as their resources were limited, but based on the numbers of organ donors who requested Xhosa, Zulu and Sotho brochures, it was only 1 000 people on their database of 106 591 people registered. That is less than 1 percent.
While she still felt a bit of pain sometimes and had to take extra care of her health as any attack on her immune system was still dangerous, Mokgosi said since the transplant last year, she had a new lease of life.
“Before, I used to feel lonely because I couldn’t go out with my friends – now I can have a life,” she said.
The Star