In 2002, Dr Nerissa Pather was 26 years old, doing her community service at King Edward Hospital in Durban when she got TB meningitis.
Eight years later, instead of enjoying a rewarding career, marriage and motherhood, Nerissa is a paraplegic with extensive nerve damage that causes her excruciating pain.
The TB meningitis, which caused swelling on the brain, also damaged her spinal cord. Nerissa has lost the use of her legs and bladder. She also suffered a stroke that paralysed her right side while the TB spread to her sinuses and spleen.
Complications from various operations to relieve the pressure on her brain and spinal cord have caused extensive nerve damage
As a result of all the medication Nerissa has taken, she has developed osteoporosis, deafness, liver damage and kidney infections.
Nerissa is unable to mother her eight-year-old daughter Kyla properly, while her husband, Dr Shane Maharaj, who she married while they were at medical school, has become her doctor.
Maharaj has had to watch the woman he loves descend into a dazed twilight world of pain, and at times he has been forced to rush home from his Veralum medical practice three times a day to administer to his wife.
“It’s hard to cope when you see the woman you love go to the point of no return and you have this [medical] degree. You know the medicine. You know the theory very well. And you’ve got this black bag with all these expensive drugs and you can’t do diddly squat. You can’t. The only things you can do is live and try and pray and trust God,” says Maharaj.
“There are days when my daughter comes home from school and because Nerissa is screaming so much in the house from the pain we literally have to prevent my daughter from coming into the house,” says Maharaj.
“This is primarily because of the amount of damage that has occurred at the spinal cord level as a result of the TB. Currently Nerissa feels fire in her left arm. If you just touch the arm it’s as though you are electrocuting her,” adds Maharaj.
Despite the nightmare that has stretched over eight years, the family has yet to receive a cent from the Department of Labour’s Compensation Fund.
Four years ago, King Edward Hospital stopped paying her salary, describing her as “a ghost in the system” despite Maharaj submitting regular reports on her condition. He then submitted a file detailing her plight but was subsequently told that her file was “missing”.
Maharaj’s lawyer has taken the matter up, but there has been no progress. In the meantime, he has had to pay for all her care, including two nurses to take care of her day and night.
“To be honest, it’s not about money. It’s about responsibility. If you look at her career and what could have been, if you look at her future and what could have been. Oh boy, you cannot quantify it,” he says.
“My daughter does not know what a normal mother is because for as long as she can remember, her mother has always been sick. As a husband and as a man, our relationship has obviously changed. All that is expected of government is to come forward and stop the bureaucratic paperwork,” says Maharaj, his usual optimism faltering for a moment.
Pather is one of a number of health workers whose lives have been permanently altered by TB that they have picked up from their patients. Yet none have received the government compensation they are entitled to.
South Africa has one of the highest TB rates in the world, and health workers are at high risk of getting the disease. More recently, there has been a surge in drug-resistant TB which, in some cases, is almost impossible to treat and involves highly toxic drugs with life-changing side effects such as permanent deafness.
KwaZulu-Natal healthworkers are six times more likely to get drug-resistant TB than the general public, according to a four-year study released last year.
Professional nurse Dumisane Mdletshe has worked at King George V Hospital, KwaZulu-Natal’s specialist drug-resistant TB hospital, for the past 12 years – and has lost a lung as a result.
“When I started at the hospital, I was screened for TB and clear so I know I got TB while working at the hospital,” says Mdletshe.
First, Mdletshe got ordinary TB, his sickness was “straight forward” and he was cured. But he then contracted MDR.
“It was very distressing. I felt like I was going to die. The treatment is harsh. I lost a lot of weight, sometimes I couldn’t walk and I felt like I was not going to make it,” says the slender 39-year-old quietly.
“I lost the will to live and at times I even became aggressive,” says Mdletshe.
Although he was eventually cured of MDR, Mdletshe’s lungs were permanently damaged: “One day in 2007, I literally started to cough up litres of blood. The residual effects of the TB had weakened my lungs. So I had to have one of my lungs removed.”
Although this is a work-related injury, Mdletshe has never received compensation. He now works in the staff clinic of the hospital so is protected from the hundreds of TB patients.
Dudu Danca, a professional nurse at the same hospital for over 15 years, is hovering on the brink of extensively drug-resistant (XDR) TB after being treated for multi-drug resistant (MDR) TB.
“Although I am supposed to wear a mask to protect myself from TB, many of my patients are deaf as a result of their medication. They lip read so I can’t wear a mask when I talk to them,” says Danca.
She has been on treatment for almost two years, but her strain of TB has become steadily more resistant to treatment. It is now resistant to one of the MDR drugs, which makes her condition pre-XDR, according to Dr Iqbal Master, head of clinical services at the hospital.
Danca, an attractive woman in her forties, has endured nine months of injections five days a week and has had to swallow handfuls of pills every day. Her last test showed her body was clear of the disease, but in January she was still testing positive.
“I am very scared to come back to work in the hospital,” says Danca.
Upstairs in one of the male TB wards, Lindokuhle Mhlongo, 26, props himself up in bed to talk. A staff nurse from Hlabisa Hospital in northern KwaZulu-Natal, Mhlongo is being treated for multi-drug resistant TB at King George.
“I was very sick and weak, and had to come to hospital last month,” says Mhlongo. “I can’t even remember coming here.”
Mhlongo says his hospital does not supply nurses with masks to protect them from getting TB and that ventilation in many of the wards is poor.
Between 2003 and 2008, 288 health workers were treated for drug resistant TB at King George V Hospital and 23 of these had XDR, according to a study conducted by Boston University’s Max O’Donnell and others.
The researchers concluded that healthworkers were six to seven times more likely to get drug-resistant TB than the general public.
"The higher incidence rate among the healthcare workers is explained by occupational exposure and not other risk factors," said O'Donnell. "We are comfortable that they are being infected due to patient exposure."
South Africa has the highest number of people co-infected with TB and HIV and one of the highest rates of drug resistant TB in the world. Lack of infection control has been identified as one of the major weak points in South Africa's TB control programme. – Health-e News Service.
* Watch SABC 3’s Special Assignment tonight (23 March) at 8.30 pm for more details on the effects of TB on healthworkers.
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