TB and the girl next door

2008-03-25 00:00

olivia rose-innes

The stereotype of a tuberculosis (TB) patient looks something like this: poor, black, malnourished, probably HIV-positive and living in overcrowded, unsanitary conditions.

Poverty does make you more vulnerable to the disease, as does HIV, but no one — especially in a country with one of the highest TB rates in the world — is immune.

I learnt about Bronwyn Thompson’s TB in a most unlikely context for someone in recovery from a serious respiratory disease: during a veld fire. Thompson (22) and I had recently qualified as members of Cape Town’s Volunteer Wildfire Services (VWS), and were chatting during a lull in the action on one of our first fires when she mentioned matter-of-factly that she was undergoing treatment.

I was struck not only by how “against type” she looked — white, middle-class, athletic and (beneath the soot) glowingly healthy, but also, given the stigma of TB infection, how open she was about it. Still, I chose my words carefully when I approached her for an interview. I needn’t have worried — she was enthusiastic about telling her story.

Thompson recalls the first signs that something was wrong, in August 2006: “My immune system was down. I had respiratory tract infections, a productive cough and flu-like symptoms that didn’t clear up for weeks. I also had pink eye. I was used to chest infections, because I’ve had asthma from childhood, so it didn’t seem that unusual. My boyfriend Tarren had suggested I get tested for TB, but I had the ‘I-can’t-get-it’ mind-set. Also, I didn’t have typical symptoms like weight loss, and the cough was fairly mild. But you don’t realise how long you’ve been coughing. In my case, it was easily six months.”

Thompson works as a medical technologist in a pathology lab, but it’s difficult to determine if that’s where she contracted TB.

“It’s hard to pin down exactly where I might have got it. You can be standing in a supermarket queue and someone coughs, and that’ll be enough to get infected.”

Despite her ongoing health problems, Thompson, who was training in gymnastics at the time, continued to push herself. “It was increasingly difficult to do full exercise routines. My lungs would burn and my legs feel like lead.”

In October 2006, Thompson took part in the SA Aerobics-Gymnastics National Championships. She was required to have lung function tests to prove to the South African Institute for Drug-Free Sports that she needed to take asthma medication, and these showed that her lung function was down — an indication of various respiratory conditions, including TB.

In early 2007, Thompson went to see a pulmonologist, who changed her asthma pumps. Then, with back pain caused by a suspected infection of the pleural cavity (between lung and chest wall), she went on more antibiotics and hydrocortisone.

“Eventually, my doctor did a TB culture — really just to eliminate it as a possibility.”

But this and chest X-rays confirmed the diagnosis. The TB was fairly advanced: it was mostly in the left lung, with some tissue scarring and there was also minor involvement of the right lung.

“When the doctor called with the news I burst into tears. My mother was with a client and I just walked straight in and said ‘I’ve got TB’. I was distraught, but also ridiculously ashamed. I thought it’s what you’d expect to find in the rural areas, in contexts of poverty — it doesn’t happen to people of my ‘class’.”

The stigma around TB doesn’t help when you have to tell those closest to you that you might have infected them. “I had to tell my family and the group of interns I’d been working with. I was sure Tarren was infected (he wasn’t) — just before the diagnosis we’d gone on a camping trip and spent four or five days together in a tent. In the beginning, I was really anxious I’d infect people and put bars of disinfectant soap around the house. But I was never once made to feel rejected or isolated: when I told people they literally just put their arms around me.”

Because of her work background, Thompson knew what was in store in terms of treatment: many months of strict adherence to a drug regimen.

What she wasn’t expecting, however, was that she would have an acute reaction to one of the first drugs, resulting in hospitalisation.

“I’ve never been that sick — nausea, vomiting and abdominal cramps. There was injection after injection, because they had to test different drugs to see which I could tolerate.”

After discharge from hospital, Thompson started an intensive two-month treatment with four different drugs. Usually, this is followed by a period of fewer drugs or lower doses. Unfortunately in her case, she proved resistant to one of the drugs and would need to continue with the full drug regimen for 12 months.

On top of the TB symptoms, the drugs had side-effects: “I felt very lethargic and often at work I’d go and have a nap in the car at lunch time. Also I had occasional nausea and started getting irritable bowel syndrome and headaches.

“You’re forced to slow down. Especially, you can’t push yourself in terms of exercise: you have to learn to listen to your body. My energy levels varied — some weeks I wouldn’t go to gym, other weeks I’d feel up to going four times.”

“It’s hard to stick with the treatment. The side effects get you down, and just the fact of having to take all these drugs — my room looks like a pharmacy. And at first you feel like everyone’s staring at you at the clinic, when you head to the — clearly marked — TB section with your sputum bottle. But you get over that.”

Thompson’s diagnosis coincided with the start of firefighter training for the 2007/08 summer season, but she was determined not to let TB get in the way: “I’d been planning and looking forward to joining the firefighters for a year. I love the mountain and it meant a lot to me to get involved in this way. Tarren was already a VWS member.

“I got the pulmonologist to sign the VWS medical form early on, before my diagnosis. Anyway I thought I’d be cured by the start of fire season. I didn’t ever mention ‘firefighting’ to the doctors (who would’ve certainly objected, as my parents did).

“And I didn’t mention TB to the VWS manager until the end of the training: I thought he’d be less likely to kick me out if I’d already qualified. Finally, when I’d passed the fitness test, I explained why I’d struggled a bit and was so out of breath. As it turned out, he’d had TB himself. He reckoned that as I was in the non-contagious phase, there was no reason I shouldn’t take part in VWS activities.

“So far the firefighting has involved short bursts of activity and I’m able to keep up. I have to be careful about smoke inhalation. I step back if the smoke’s too thick. That’s what everyone has to do, but I just step back a bit sooner. I tell the crew leaders I have TB and they’re not fazed: they just tell me to keep behind them and say if I’m struggling.

With only two months left to go of treatment, Thompson has travelled a long road towards an acceptance and openness about her illness.

“Yes, it’s potentially life-threatening, but I’m also not incapacitated by it. I’m fortunate in that I have good medical care, good support and that mine was a relatively simple case. I haven’t had to go through what extensively drug-resistant tuberculosis (XDR-TB) and multi-drug resistant tuberculosis (MDR-TB) patients do.

“There’ve been times it’s been very limiting and frustrating, but my family hasn’t allowed me to indulge in self-pity too much.

“These days I’m happy to talk about it. It’s so unnecessary that people die from what is essentially a curable disease, purely through stigma and lack of knowledge.

“The most important thing I could say to anyone who’s just been diagnosed is to keep taking your medications. Don’t skip a dose, even on days when the side-effects make you feel really bad. They’ll pass and, eventually, so will your illness. You’ll get there.” — Health24.

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