30 October:
So do have TB or not?

It’€™s 6 ‘€˜o clock in the morning. I don’€™t feel like getting out of bed this morning. I hope I feel better tomorrow.  

I have taken another long shower that seems to comfort me lately.  But I need to hurry to the clinic today. They are going to run a test or start me on treatment.  I’€™m not sure which it is yet. If they are going to do a test to confirm Dr Miller’€™s suspicions they are not going to start treatment today. More waiting!

This is the second day of my two week sick leave and I still don’€™t know what is wrong with me. As much as there is a suspicion that I have TB, it is still hard for me. I would rather know that I have TB and start treatment than to continue being a suspect without medication.

The nurse at Claremont Clinic took some sputum samples and told me to come back to give more sputum on Monday since today is Friday. If these come back positive I will need to be put on TB treatment. She doesn’€™t seem convinced I have TB so a big part of me is hoping that she’€™s right.

Next Monday I will go to the clinic again. I wonder why they can’€™t just take the sputum all at once instead of me coming there two days in a row. Nobody explained this part to me.

It was hard enough going there today. I had to walk for close to thirty minutes from my house to the station and had to pay R5.50 for the train to Claremont and walk for ten minutes to the clinic.

I need to just get something to eat and watch some movies that will help me get through the day.  Then I’€™ll read and yes, sleep…eventually.

31 October 2009

It has only been a few days of staying home and I already have no idea which day it is today.   I could go to the Library and get some DVDs to watch. I have been thinking of where I could have got the TB and I still don’€™t know.

A part of me is no longer even worried about the diagnosis, if anything I want it confirmed. It hurts to think you might have something and go through all the precautions to avoid spreading it when you are not even sure you have it.

I wear a mask when I go to the communal kitchen I share with my house mates. I’€™m so freaked out I don’€™t even use the cups they use. I open every window in the house, if I could I would even make holes in the walls to make sure there was enough air flow to avoid them from being infected if they aren’€™t already infected.  

2 November 2009:
More sputum please, we are almost there…

I have to go to the clinic again today to give more sputum. This is a trip I wish I didn’€™t have to make. I feel so tired these days it’€™s hard for me to walk from my home to Rondebosch station (about 3km away), I get tired too easily.

I had  sputum taken again today and have been told to come back on Thursday to get the results because it takes about 48 hours(2 days)  to process. So it is the results from Friday and the ones from today.   There goes my two weeks leave. My doctor said I should only return to work after two weeks because I should be less infectious by then. I think by the time I get to the two weeks I’€™ll still be just as infectious as I was when I saw her.

I cannot understand how I can stay at home for more than a week and go to the clinic for all these days and still not know what is wrong with me. The nurse said doctors read an x-ray differently. ‘€˜Another doctor might look at your x-ray and say something completely different to what was said by the doctor you went to.’€™

So I need to bring my x-ray so that the clinic doctor can have a look at it. But this doctor needs the actual film and not the disc. I’€™ll have to go to the private clinic that did the X-ray to get the film.

However I don’€™t know why I need a second opinion when the results we are waiting for have not even been returned yet.

What I hate about these trips is that I go there early and it takes a few minutes to get everything done, but I have to pay money and endure a long walk each time. I don’€™t expect special treatment, but it would be nice if they take into consideration how tired TB patients are and make us a priority. Interestingly I was never offered a mask to protect the other people that I normally wait in the clinic with. Ironically I was using masks we had bought to protect us when we found ourselves in high risk health facilities.

No mask was given to me to take home. I’€™ve been here for three consecutive days and have not been offered an HIV test. I have not felt like I’€™ve been treated like a TB suspect at all.

There is a specific bench at the clinic that one of the nurse said it was reserved for TB patients, yet it is being used indiscriminately by anyone. Some are women with babies and some of us can’€™t help but play with the kids. I wonder if it is safe to do so without a mask on. There are also no open windows where I am waiting. That means there’€™s very little ventilation which may increase the risk of others being infected. I came in and sat beneath one of the windows and opened it today. A lady with her two year old came and sat next to me. She was not here for TB and I started playing with her child. I have a severe, uncontrollable cough. I was thinking that I’€™ll soon start coughing and I’€™ll cough on her child. What if I might have TB? Will the child be infected?

4 November 2009:  
And so, my treatment finally starts  

This morning I got a call from Anso, one of my colleagues saying I needed to get to the clinic. She had called someone she knew in the City Health Department and they had in turn called the clinic who told them I could collect my results today instead of tomorrow.    I wonder why it has been changed to today all of a sudden.

I walked into the nurses’€™ office and she pulled out my file and started asking why I had said I was not offered an HIV test. She had been contacted by her superior in the city health department asking her about my case and whether there was any progress regarding getting me diagnosed. One of the things the person spoke to her about was the HIV test and was being asked why she had not offered it to me.     She said they needed to make sure that a person has TB first before putting them on treatment because TB treatment is complicated and people can develop resistance. She then said ‘€˜you do have TB.’€™

I didn’€™t know whether to laugh or cry. Mainly because of the way she said it. She was still staring into the documents and going on and on about the bad patient I had been for complaining and in the midst of all of this she flippantly confirms my doctors’€™ diagnosis.

My thoughts jetted back to the time Dr Miller called to tell me she suspected TB, to when she told me I had TB. She was the complete opposite to the nurse and I knew Dr Miller was also incredibly busy, but she made the time to make me feel as if she sympathised with me.

Today feels a bit awkward although I’€™m relieved to have it confirmed, this is not how I expected to be told. I told the nurse that it was true, that I wasn’€™t offered an HIV test and that when I asked her whether I could get one she told me their HIV counsellor was not around and she didn’€™t know when she would be back.   I was waiting for her to tell me when I could get the test done.

She told me she could start me on TB treatment today.   4 November 2009. I guess it should be a significant date. She murmured while ticking on the green treatment card saying that I would have to carry the card with me every time I came to the clinic. She said the card would assist in tracking my treatment progress.   Every day I was to come to the clinic between 7:30 am and 4:00 pm, sit on the bench by the window displaying my green card for all to see. I would be seen to by one of the nurses. They would give me my treatment comprising of six tablets 5 orange and a small white or pink one.

She told me that I was expected to take my treatment everyday and finish the course in six months or risk developing resistance and extending my treatment from eight months to 2 years. She said there were cases where people developed resistance even though they had been taking their treatment correctly. I was disappointed to hear that I might not get better even if I had taken my treatment properly.  

I took my tablets in front of her, all six of them two big ones at a time and then the small pink one last. This made the taste of the drugs even worse as they were disproportionately huge.

When I was done, I left the clinic and took a walk to the library. I didn’€™t stay long. It felt like everyone knew each time I said something and every time I coughed.   I left early because unlike the other days, today I knew I had TB and that one cough means I’€™m putting so many people at risk of catching the bug.

So I left for home as soon as I could. While walking home it felt as though the people in their cars looked at me and knew that I was sick and no one was supposed to come near me.   The people I came across in the streets’€¦ they all knew I was sick. I knew these thoughts were a bit crazy and that I was not dying although some days I felt that way.

I got home and put on my stupid mask to protect my house mates although I didn’€™t spend much time with them. I also told them that the results came back positive. I had TB.

They tried to be understanding although I could see how uneasy they were at the same time. Then I started dealing with the part I was trying to avoid.

Sthabile might have TB?

6 November 2009

I woke up early to go the clinic. The nurse saw me and signalled for me to join her in the office.   She gave me my treatment which I took with a frown. She asked me if there were some side effects. She explained that some people suffer side effects such as nausea, tiredness and headaches after starting on treatment. I wasn’€™t feeling sick at the time except the tablets had an awkward smell and were not enjoyable at all. I had no love for them at all.

I was glad that it was Friday and the last day of treatment since the clinic is closed on Saturday. That was until the nurse took out two tablet packets and wrote my name and weekend on them. I asked jokingly why she had to ruin the weekend with treatment now.   She explained that I had to take the treatment even if it was the weekend. She again told me that developing resistance means staying on the programme longer. I told her that was the last thing I wished to do. So I would take my treatment over the weekend.

There was another issue that was worrying me as much as my TB diagnosis was. My daughter was the issue. I couldn’€™t stop thinking of her having TB at the age of two. It was the most devastating thought and it was constantly on my mind.

I would think of her coughing the way I did, sweating – not that I sweated to the extent the sister indicated (such that you could squeeze the sweat out of the clothes I’€™ve been wearing) that was not the case. But I was sweating.

My family had taken her to a clinic in Durban and were told there was nothing wrong with her and they were given cough mixture. No test.The nurses at the clinic reached the diagnosis simply by looking at her. I wished I was in Durban. If I had been there I would have taken her myself and would have gone from one clinic to the next until someone helped us. But being so far away I felt there was very little I could do to make sure she was safe.

Oh another thing the nurse at the clinic told me is that I will complete my treatment by April. It made not impression, April was very long way off.

I went to the clinic and then to the library today. It’€™s just like any other boring day. Everything is so mundane.  I finally saw the HIV counsellor at the clinic to do my HIV test.

When I entered the room she asked me to sit down and asked a few questions like whether I have ever had an HIV test before and when I last tested for HIV. While taking that info down her phone rang and she answered it.

She spoke to someone about an immune booster that she was supposed to give them.   She then started telling me about the immune booster and told me that the reason why I had TB was because my immune system was compromised and I needed the booster. She offered to sell it to me. I was gobsmacked. I had been writing stories about desperately ill people being coaxed into buying untested remedies claiming to cure them. Here I was…one of those people I wrote about.

I politely told her I would think about it and get back to her. I never did.

Read part 3 next week.

Read part 1 here.