In 2002, Nerissa Pather was a dedicated young doctor when she got TB. Today she’s bedridden and in permanent pain.
Her husband Shane ‘ a medical doctor himself ‘ has watched the disease destroy the woman he loves.
They had met at medical school. After qualifying, they moved to Durban where their daughter Kyla was born.
DR SHANE MAHARAJ: Our dreams were the same as every other young, aspiring, blessed young couple to be. Live a glorious life, give our daughter the best life possible and to give her everything that she could ever have and want. And in 2002 let me put it this way, god was wonderful, we had everything.
Nerissa was doing her community service at the clinic in Kwa-Mashu on the outskirts of Durban.
It was here that she was infected with multiple drug resistant – or MDR – TB Meningitis.
DR SHANE MAHARAJ: What happened was the TB itself caused swelling or inflation of the tissues of the brain. That swelling caused the pressure in the brain, the intercranial pressure, to increase. When that pressure increased it’s almost like boiling pot you know and she started developing severe headaches and was not responding to anything. She was screaming in pain.
The MDR-TB spread from her brain, to her sinuses and into her spleen. Nerissa was put on heavier and heavier medication, before it was finally eradicated.
Side effects from these drugs caused her to lose hearing in one ear, and damaged her liver and kidneys.
She has osteoporosis and a stroke has left her paralyzed.
DR NERISSA PATHER: I don’t feel good at all. I feel drowsy most of the time I feel sleepy. The medication is just too strong for me.
Her daughter Kyla was a baby when she got TB and the illness has created a distance between them. It affected her memory and.. for two and half years.. Nerissa had total amnesia.
DR NERISSA PATHER: I’ve forgotten most things anyways.
DR SHANE MAHARAJ: In 2002/2003. In all honesty she didn’t even remember the birth of our baby. In 2003 when she started to regain consciousness I had to use videos and pictures to let her know that she had given birth to a baby girl.
Complications from the TB and the various operations to relieve the pressure in her brain, have injured the nerves in her spinal cord.
DR SHANE MAHARAJ: This damage is primarily is primarily coming from the scar tissue that was caused directly from the TB.
It produces excruciating pain in her arms .. that won’t respond to any painkillers.
DR SHANE MAHARAJ: If you just touch the arm it’s as if there is fire or electricity running into her arm as though you are electrocuting her. She also got these pins and needles. We can’t see them, but for her, she’s literally seeing as though you’re taking out pins. And anything that touches her hand she starts getting as though there is a pin in her hand. These sensations have been traumatic.
There are days when my daughter comes home from school and because she is screaming so much in the house we literally have to prevent my daughter from coming into the house.
I mean, you know, she was 26 when this began. I was 27. The question is how do you cope. How do you handle it? I don’t think I did. I think if it wasn’t for God, I don’t know where I would be. You when you see the woman you love go to the point of no return and you having this degree, MBCHB, you know the medicine you know the theory very well. And you know that you’ve got this black bag with all these expensive drugs in there and you can’t do diddly squat. You can’t. The only thing you can do is live and try and pray and trust god.
The government has paid nothing towards Nerissa’s medical expenses. Eight years on, they are yet to decide whether her TB is an ‘Injury on Duty.’
Even her salary payments stopped, because the file with her medical history got lost.
DR SHANE MAHARAJ: Everything was given to the government so they could see the progression of the disease all through the years. 2002, chest x-rays, MRI’s CT scans, over and over again. It never stops.
While efforts to get compensation continue, it’s the emotional cost that’s impossible to quantify.
DR SHANE MAHARAJ: 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 its changed it’s impossible. But the government needs to respect the fact that we did our time And all that is expected of them is to come forward and acknowledge and be willing to stop doing bureaucratic paperwork. Why? Life is going on. We live this every day. 8 years now. We’ve lived it every day.
With one of the highest rates of multi-drug resistant TB in the world.. more and more health workers are contracting the disease from the patients they treat.
Dudu Danca worked for 15 years as a nurse in the TB Ward at King George Hospital in Durban.
Two years ago she started losing weight rapidly and went for a test. The results showed that she had multi-drug resistant TB.
DUDU DANCA: I worked there for three years because I started in 2005 and I got this thing in 2008 when I was dealing with these patients with mdr and xdr.
Although hospitals should be a safe working environment, health workers can’t always follow the protection guidelines.
One of the side effects of the medication used to treat highly drug resistant TB is permanent deafness. For the nurses, who are in close and lengthy contact with these patients ‘¦. it poses a considerable risk.
DUDU DANCA: you were forced take of the mask and talk so that the patient could look at your lips so the communication was through that. I think that’s how I got this thing.
She was put on an intensive course of injections and medication. Every week she comes to the staff clinic for a check up. This nurse, Dumisane Mdletshe, who attends to her is a colleague, who also got drug resistant TB from patients in the same hospital. He was cured, but had to have a lung removed after he started coughing up blood.
DUDU DANCA: As a person who knows what is going on I was very, very depressed. I think my condition was deteriorating through knowing that now I am having this TB. I’ve been telling people about this thing and now it’s with me, I was very bad. I was totally depressed.
Despite treatment, her strain of TB doesn’t seem to be responding to the medication. She may be on the brink of extensively drug resistant TB.
With no offer of compensation or incentive to stay, she’s planning to resign.
In a country with severe shortages of health workers, we can ill afford to lose another nurse.
DUDU DANCA: It is better to leave this place and start to think about something else to do. Even nursing I don’t like it at all now. I’m very disappointed I didn’t know I will end up like this when I’ve been a nurse. So my happiness is not there anymore
This is Sizwe Hospital in Gauteng. To try and control the spread of the epidemic, patients with drug resistant TB are confined here.. until they are no longer infectious.
The treatment they receive is long, and often with nasty side effects… but faced with of the worst rates of TB in the world ‘¦ doctors need to ensure that they don’t default.
DR DIMIKATSO MALOI: They are in danger to themselves, to the public, to their immediate family’s members to the people they are working with if they are working or any other place. Imagine a bus or a taxi and people with MDR sitting next to you, or in a church
Drug-resistant tuberculosis occurs when patients are incorrectly treated or do not complete their full course of medication.
In 2006, Musa Mukase was diagnosed with ordinary TB. It’s normally cured by a 6-month course of antibiotics, but after two months, he stopped taking his pills.
MUSA MUKASE: It’s just because I was think I’m good, I’m right so I’m not going to take anymore medication, the TB is finished, meanwhile it’s not finished inside.
He fell ill again, this time with multi-drug resistant TB.
Having been exposed to drugs without being killed, the TB bacteria in his body had become resistant, so the usual medication no longer worked.
MDR-TB meant he needed to go to hospital for possibly 18 months, and get treated with stronger and more toxic drugs. .. again he didn’t comply.
MUSA MUKASE: That is too much because I’ve family and I’m looking after them. I’m the only person. I’ve got child. I’ve got a wife. I stay two months here and then I ask for a pass out and then I leave and go out and when I go out, I just disappear from the Sisters, and then I go. And then the TB, it comes back worse, worse and worse.
People with MDR TB can infect anyone who is exposed to their coughing or sneezing. So, for the 4 years between his first diagnosis and finally agreeing to treatment, Musa was spreading the same drug resistant TB that he was carrying.
MUSA MUKASE: Now it is very dangerous. Because if I default again now and I go outside all my family is going to get this sick. They can get sick, and it’s not going to be TB normally it’s going to be MDR.
DR DIMIKATSO MALOI: People don’t realise that the more they default, the smaller their chances for them to recover. You may be healthy in the first year but, later on, they won’t be sensitive to any drugs.
Isolated behind these fences, are the patients with extensively drug resistant or XDR TB. This strain of the disease doesn’t respond to any of the drugs routinely used to treat tuberculosis infections ‘¦. making it almost incurable.
SIMPHIWE SITHOLE : I don’t want to lie. I did not do everything properly. I used to skip taking my pills. When I wanted to go and have fun with my friends, I never took my pills because I knew we were going to drink and dance. I only have myself to blame for getting XDR.
Those with XDR TB may never achieve negative test results, and could literally face a lifetime in the hospital. ‘¦ About half these patients are dying, but if they are also HIV positive, their chances of survival are less than 20 %.
Fear is driving the disease underground, so that some never go to the clinic to be diagnosed. It’s how XDR-TB is spreading.
SIMPHIWE SITHOLE: I was scared because people were telling me that I would die if I came here and diagnosed with XDR. I decided not come to the clinic. I ran away from nurses when they were looking for me.
Gciniswa Madodonke is resistant to 5 of the 6 anti-TB drugs available. Like more than half of all XDR TB patients, she had never been treated for tuberculosis before. So it is likely she contracted the disease from people who already had the drug resistant strain.
GCINISWA MADODONKE: It’s up and down in terms of the results. It’s a very difficult disease to treat. The TB germ it is clever in your body. When you find a way to get rid of it, it somehow finds a way to attack your immune system again. It becomes immune to what you were giving it.
After being in hospital for over 2 years, there’s been little change in her condition.. but she hasn’t given up hope.
When I get out of here I’m going to get fat. I’m going to go to every restaurant I’m going to go to every advert that I’ve seen on TV. I’m going to sit down and eat every kind of food that I’ve ever dreamed of. I’m going to get really fat.
This is King George Hospital in Kwa-Zulu Natal. The province’s worst cases of drug resistant TB end up in these wards.
A recent study in KZN showed that health care workers were six times more likely to get drug resistant TB than the general public.
DR IQBAL MASTER: The pool of MDR and XDR patients in the community has increased, so we are getting more and more patients. So probably, the risk is greater because the exposure has increased.
The twin epidemics of TB and HIV form a deadly combination. With weakened immune systems, TB is the biggest killer of people living with HIV.
Yet many health workers are reluctant to reveal their HIV status fearing stigma or losing their jobs. So.. they endanger their own health by working in wards with TB patients.
DR IQBAL MASTER: There are definitely more health care workers that are immune compromised, so more of them are picking up TB and drug resistant TB. So, I think it is important for more of them to be screened, to be offered VCT HIV testing and ARV therapy. So, that would probably reduce the instances of Health care workers getting TB.
Poor infection control and shortages of protective masks are largely to blame.
Lindokuhle Mhlongo is a staff nurse from Hlabisa Hospital. First, he got abdominal TB and then this mutated into multi-drug resistant TB.
LINDOKHULE MHLONGO: I am sure I got form work because there was no one at home who is suffering from TB.
He worked in the Outpatients Department, screening people who were coughing, for TB. He often didn’t know whether they were carrying the drug resistant strain.
LINDOKHULE MHLONGO: It’s because of the way we worked. When we were working, we would sometimes run out of masks, but we would still continue treating the patients. I think that is what put me in a lot of danger, plus the overcrowding in the wards.
In 2006, the Church of Scotland Hospital in Tugela Ferry was at the centre of an outbreak of XDR TB. Today it’s internationally recognized for its successful handling of TB cases.
DR TONY MOLL: In the early days of the MDR XDR epidemic, when we really had a true outbreak and huge numbers, we know that we had hospital transmission taking place. During those years we lost 8 staff members. 4 died of MDR and 4 died of XDR. That was terrible. These were our colleagues, friends. And the impact on the hospital when we heard of another death, it was quite scary, and really created a gloom and depression across the hospital.
A major problem they had to overcome was getting people identified with drug resistant TB on treatment quickly.. to prevent them from infecting others. But the referral hospitals didn’t have enough space, so patients had to stay at home or in their communities’¦ until they could be admitted. .
DR TONY MOLL: We were identifying MDR patients and we would call our central referral hospital in Durban and say we’ve got a new MDR patient can they come across to start treatment and we would get the answer sorry our beds are full. There’s nothing we can do you know. Keep the guy there and try again in 2 weeks time.
These backlogs meant the hospital had to look for alternatives to start their patients on treatment sooner.
DR TONY MOLL: We were forced to send our patients back home. And to build a programme that would support the patients in the community, at home. And to create a safe environment for that patient and his family and relatives, in such a way that he would not be transmitting MDR TB into the community.
Today, patients are admitted to hospital only until they’re no longer infectious. Then they can go home.. freeing up space for the next person. Nurses now bring the treatment to them.
DR TONY MOLL: So once your patient was put on treatment, taught cough etiquette and understood the basics of protecting his family, there is almost no transmission taking place after that.
They’ve also made changes to improve infection control at the hospital, the most important of which is better ventilation.
DR TONY MOLL: This is absolutely perfect as a waiting area. Because it is outside we don’t have walls on the side of the waiting area preventing air exchange. You’ve got your natural ventilation taking place. Somebody coughing TB over here, that cough will be almost instantaneously diluted into air, making it quite safe for people sitting close to him.
Early diagnosis of the disease has made a huge difference in curbing the spread of infection. So at the entrance to the Outpatients Department, nurses screen nearly 200 patients a day for symptoms of TB.
DR TONY MOLL: And in such a way they will screen patients. By identifying somebody who is a suspect, they will fast track that patient so they don’t have to sit in the queues here and they will get preference to see the doctor. Get sorted out.
Overcrowding is still their biggest problem. This is the TB ward. 35 patients with MDR and XDR-TB are crammed in here.
They’ve installed fans and air ducts to dilute the spread of bacteria.
DR TONY MOLL: There is lovely cross ventilation here. You’ve probably got about 20% of your floor space with windows on the side, which a good measure. There’s cross ventilation, air moving through. You can feel it on the side of your face. That’s very reassuring. We are probably achieving nearly 50 air exchanges per hour in this room, which is safe and reassuring for our patients, should there be 1 or 2 here that are coughing and still infected.
It seems to be working. Their number of drug resistant cases have halved from an average of 30 a month in 2007 to around 12 or 13 today.
But although infection control is improving’¦ staff still fear another outbreak.
DR IQBAL MATER: Staff to a certain extent fear picking up drug resistant TB, so staff leave and we don’t seem to be able to recruit more staff. Doctors don’t seem to want to work with drug resistant TB
This programme was aired on SABC 3 Special Assignment on Tuesday, 23 March 2010.