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Fawn Rodgers, 25, awaiting lung transplant
Fawn Rodgers has more doctors than friends. The 25-year-old is perfectly likable. She has long brown hair and a pretty smile. It’s not Rodgers’ personality that keeps her out of social circles, but her disease. Her cystic fibrosis, a genetic disease that causes fluid to build up in the lungs, has become so bad she struggles to breathe and needs to be on oxygen 24 hours a day.
Her portable oxygen only lasts an hour or two so she can’t leave the house for long periods. “Last year I was in hospital more than out. In hospital, there’s not much of a normal life,” says Rodgers.
Because of her trouble breathing, Fawn burns energy quickly and is constantly tired. Her mother, Elizabeth Rodgers, needs to give her daughter constant care as even microwaving a meal is too much for her. If the power goes out, Rodgers needs to go to someone else’s house as she needs electricity for her oxygen supplier.
“She’s living in a cage. Even having a friend over is tiring. Just getting her to do anything is hard,” says Elizabeth.
If Rodgers receives a lung transplant, she could begin to live a normal life. “I’m pretty sick already and could get worse. I have to be well enough to get a transplant. It’s really scary,” she says.
“It’s a really tough time for Fawn because she knows she might die, but she needs to stay positive because she’s hoping to get a transplant,” says her doctor, Cathy Baird.
Chisanga Machuta, 21, received a heart transplant
Chisanga Machuta and his twin brother, Chilando, stand side by side. Chisanga is the slightly smaller brother, but otherwise their faces are equally radiant. But when Chisanga was just 17, he would have died had he not received a heart transplant.
The teenager played soccer when he had a viral infection, putting strain on his heart. Within three months, his condition deteriorated to the point where he needed a new heart.
“The doctors call me miracle boy when they see me,” says Chisanga. He had already spent three weeks in ICU and on the day he received his heart, he was intended to be taken off the life support device which was pumping his blood.
“He was quite sure he was going to be fine but we were not so sure,” says Chilando.
But a few weeks after the transplant, Chisanga was out of hospital and on his way to recovery.
“I feel even better (than I did before). I have an opportunity to do things I never used to do. Maybe I used to hold back,” he says. “Not many people get a real second chance at life, I’ve got that chance.”
“He’s fearless,” confirms his brother. “Whatever he wants to do he does.”
Janine Stanley, 39, received a lung transplant
In four years, there were three false calls. The first time, Janine Stanley was already under anaesthetic when the doctors realised her new lungs had an infection. “They promptly woke me up and sent me home,” the 39-year-old says. The second time there was no surgeon available to harvest the organs. But the third disappointment was the most painful. “The donor family withdrew their consent. I was quite tempted to go off the list,” she says.
Stanley suffered from a genetic disorder called Alpha 1-antitrypsin deficiency in which the lung tissue disintegrates. By the time Stanley received her transplant, she had 16 percent lung function and had been on permanent oxygen for four years. Despite that, she battled on to live a normal life and kept working up to six months before her operation.
Since her transplant, Stanley has made a mind-blowing recovery. She was out of the hospital just 13 days after her operation and five months later, she says she feels fantastic. From small things like being able to peel a potato, to making long-term plans, Stanley is able to live again.
“I feel even better than I did before I went on oxygen. I don’t think you realise how sick you are until you are well. The quality of life you give to someone by being an organ donor is just amazing.”
Dudu Ngubane, waiting for a kidney transplant
Dudu Ngubane wipes her eyes with a white blanket stamped with tiny Joburg General logos. “(My illness) frustrates the child. It even frustrates me that I’m not a good parent to him,” she says talking about her 16-year-old son.
“He doesn’t think I will come out of this situation.”
For years Ngubane suffered from hypertension, but had the misconception it was better not to take medication. She was studying for a BCom at Wits University when her kidneys failed as a result of the untreated condition.
That was three years ago.
She shakes her head. “I want to find the right word, my dear. It’s hell.”
This is how Ngubane spends four hours, three days a week, hooked up to a machine that draws out her blood before cleaning it and pumping it back in.
The dialysis sessions take place in the mornings, making it difficult to work.
“This is my home,” she says, looking around the ward, “This is more than being sick; it’s like torture.”
Because of limited space in public hospital dialysis programmes, patients who receive the treatment need to be eligible for a transplant. If they become too sick, they will be removed from the transplant list and will stop receiving dialysis.
Ngubane says over the past few years, many patients have gone off their dialysis programme, a few because they received transplants but many because their health deteriorated and they were removed from the programme or died.
l Receiving an organ does not work on a first-come, first-served basis.
l Your height, weight and age are considered.
l Your blood and tissue type have to be the same as the person whose organ you are receiving.
l Most recipients will never know who gave them this life-saving gift.
l A recipient has to meet a series of criteria which includes passing a series of physical tests and being approved by the transplant panel and a psychologist.
l Recipients must take immunosuppression drugs for the rest of their lives to stop the slow rejection of the organ.
How are they co-ordinated
Transplant co-ordinators around the country in both the public and private sectors collaborate to identify potential donors via information from doctors and paramedics, and once it has been determined a person is a donor candidate they ask permission of the family.
“I see it as a service we give the families,” says transplant co-ordinator Annette Otto.
First they explain to families that the person is actually dead, then they broach the topic of organ donating, says Otto. Sometimes she spends half an hour with a family but at other times she needs to spend a few days talking to a family for them to reach the point of deciding to donate their dead loved one’s organs.
“Many of these families make an informed decision even though they are extremely stressed… Knowledge is the important aspect here.
“We have a lack-of-education issue,” says Mande Toubkin, Netcare’s national trauma, transplant and disaster management co-ordinator.
How are recipients identified?
l An organ donor is someone who has irreversible brain damage to the degree that they are considered brain dead.
l Brain death could be due to a variety of causes, including gunshot wounds or a heart attack.
Transplants by numbers
l About 4 300 people are on the list of patients waiting for an organ countrywide.
l Only 556 organ transplants were done last year. This means many people will not receive the organs they need because of a lack of donors.
l The organs will not be used for donation, but will be used for muti.
l If you become an organ donor you will receive substandard medical treatment.
l The body will be mutilated during removal of the organs.
l Donating organs is expensive.