Fieldset
The end of the journey?

Phumeza looks back on her journey through tuberculosis

I don’t know how I caught tuberculosis (TB). At the time I didn’t know anyone who had TB, let alone drug-resistant TB (DR-TB). It might have been on a bus since it’s always full in the morning. I used to take one every day to university, but then again I could have caught it anywhere.

Life before TB

Before I contracted TB I was a first year student at Cape Peninsula University of Technology. It was a breeze – enjoying the university life, meeting new friends. This year I would have been doing my honours degree and at the same time being an intern somewhere. Well, that’s what my friends at uni are doing right about now.

Probably by next year I would have been in the serious business world being corporate and all, I guess that is not happening anytime soon though. Anyway, I lost interest in the world of business and economics; I think health is more fascinating right about now.

Finding out

It was quite a mission to diagnose me. Never did it occur that I might have TB. I lost weight, but I wasn’t sweating at all at night, neither was I coughing. The doctor said it might be pneumonia – he was just as confused as anybody else.

At the time the gene expert machine (a rapid TB diagnostic machine) wasn’t available here in South Africa so I did the other sputum test, where you wait for three weeks to get a result. At the time I was getting sicker by the day. The results came and there was no sign of TB. The doctor then requested that I do a chest X-ray, then from there he was sure as hell that I had ‘normal’ TB.

Shocked and confused

When I found out I was shocked and confused all at the same time, mainly because in the pamphlets you see about TB, they always say that if you are coughing for about three weeks you need to go and get screened for TB. But I didn’t cough, so now what?!

I only knew one kind of TB, which is ‘normal’ TB where you are told you only drink medication for six months and you are cured. I was as ignorant as most other people – I kinda thought that only people who are HIV positive get TB. Again, the posters and pamphlets you see outside clinics say “HIV/TB’’  so, being human, we kinda block stuff out and assume.

I didn’t know anyone who had TB, let alone DR-TB. I didn’t even know that there was such a kind of TB!

Medication

The worst part of the whole process was taking the medication. Fellow patients will agree on this. At first, when I was diagnosed with multi-drug resistant TB (MDR-TB) I was given a handful of tablets. Horrible little things.  It’s sure as hell a nightmare, being told you need to have them all at once.

It doesn’t stop there. Those li’l things make you even sicker than you already are. There are times where one would swallow his/her vomit because you don’t want to repeat taking the medication.

No, it’s not over yet: there are also the injections that you get every day for six months. That injection has a life destroying side-effect whereby you go deaf.

One’s bum is sore; you don’t wanna sit down anymore, lying in bed will do the trick. Then there is a thing called PAS  or Paser (p-aminosalicylic acid). You take that with yogurt. At this point in time I can’t even stand yogurt, I’m totally fed up with it. Now I take the PAS with sour milk or custard.

Grueling treatment

At  first with the MDR-TB, I took about 30+ tablets a day. This is what TB medicine is: when you have low magnesium levels in the  blood, you get four of slow magnesium. When your potassium is not good, you get three of slow potassium. Then there’s vitamin B6, which can range between 6-12 tablets, then vitamin B-complex supplements. Then you repeat the supplements again at night with the Paser.

Then there’s the injection I took, the kanamycin injection for four months. Then I was told my TB was resistant to it. Then I took the capreomycin injection for about three months and eventually it also didn’t work. My bum got tortured  for nothing.

Changing TB

If I could change anything about having TB it would be the treatment. The question we always ask our health workers is: ‘why don’t they combine all those drugs into one?’ Well, sure, they don’t have the answers, they are just following procedure.

So the biggest difference would be making simpler drugs. I mean, 30+ a day? That’s just too much! Combine all those drugs and make them non-toxic. I don’t know how they will do it, but they must.

There’s always a way. Then there will be fewer deaths and fewer defaults. Taking all those li’l horrible things – it’s just not on! Make them easy to take! Sugar coat them if you must!

Reactions

Surprisingly, people close to me had no idea what MDR-TB is. So with the little knowledge I had about DR-TB, I had to tell them and also Google some useful information.  Since they didn’t know about it, they were not afraid – they just wanted to know more about it, like how does one catch it, etc.

Not much is known about TB here.  A lot of people attach the stigma of HIV to TB. But not everyone who has a form of TB is HIV positive. And also, TB is curable; you just have to follow your doctor’s orders and you should be fine. There is nothing to be scared of, just do what you are told and one day you’ll be free of TB.

Sticking to treatment

As I’ve said, sticking to TB treatment isn’t easy at all. But with the support of family, friends, health workers and even fellow patients, you kinda feel like you don’t want to disappoint anyone and you don’t want to die either. So, you sit down by yourself and think: ‘If this is a dare, bring it on. I’ll do whatever it takes just to survive.’

I did not want to be another statistic of TB. Yeah sure, one day I will die – but not from this horrible disease. There were those days where I was like: ‘No, today I’m taking a day off – I’m not drinking them,’ but then again I will feel guilty and swallow them. Then I will convince myself: ‘That wasn’t so bad, was it?’

Expecting results

At the moment, all my monthly sputum culture results are still negative, and have been negative since February 2012, which means surely I will be cured very soon.  No more li’l bastards going down my throat and having a li’l party in my stomach, making me feel horrible.

My dream for the future would be having the best of everything like all those dreams I had before going to uni. My dream is also to live the good life we all dream about and to be 100 percent healthy for sure.

This was certainly a long break, definitely not a holiday.