My journey to recovery part 3
Read part 3 of a diary that was kept by a TB patient, Lungi Langa as she describes her journey toward recovery from TB.
7 November: TB everywhere!
I have been spending most of my days and nights watching movies, listening to every radio station and reading the best books. I’ve been introduced to Frank McCourt, reading his book Angela’s Ashes and loving it.
What has been funny in everything I’ve been reading and watching is that there is not a single movie set in the 60’s or 70’s that has not had a TB or should I say a consumption victim in it.
I took out the film, Bleak House based on a Charles Dickens’ book from the Library. There were two people infected with TB, a homeless boy named Jo and Richard, a hopeful heir of an estate. They both died. I watched Moulin Rouge where the star of the show, a courtesan by the name of Satine falls on stage. The first signs that told me she might have TB was when she coughed and there were spots of blood on her handkerchief. She then started having these moments when she couldn’t breathe properly and collapsed a couple of times. She even collapsed on stage. In those days,if you were diagnosed with TB, you died. I realised that even though I was in a different era where people could be treated and cured of TB I could have died if I hadn’t been tested.
At the time of my diagnosis I wasn’t coughing up blood yet. But I could have been on my way towards that final stage of coughing blood and dying.
Even on Angela’s Ashes, McCourt starts an affair with a girl while working as a telegram boy. One day when he goes to deliver a telegram and use the opportunity to see the girl. He is told that she is dead and that she had the consumption.
Yeah, there it is. I have it. I’m reading about and watching it… It’s everywhere.
Today Nina (my treatment supporter) and I collected my month’s treatment at the clinic. It has been hard for me to go the clinic every day just to collect treatment and come back home.
I walk to the station for probably 20 to 30 minutes, take a train and walk for 10 to 15 minutes before getting to clinic. I sit at the clinic until one of the nurses is ready to see me and then go back home. This is just not working. I spend too much money and I’m usually too tired to make the daily trips.
I had asked nurse (the sister in charge of my treatment) if I could bring someone who was willing to become my treatment supporter so that I wouldn’t have to collect treatment every day and she said I could. Good news!
She explained to Nina and I that I was expected to take my treatment everyday and Nina had to make sure I did. She would need to sign on my green treatment monitoring card every day to confirm that she has seen me taking treatment.
This is much better. It means I don’t have to go to the clinic everyday and don’t have to wait for anyone to give me treatment. Today at the clinic while we were waiting, a guy who is also taking treatment asked me if I wanted to get a government grant now that I was diagnosed with TB. He said he would be getting a grant. He also told me he was worried that he had not taken his treatment over the weekend because he lost some of it. A stench of alcohol came from him while he was talking. I could tell that he had been drinking heavily either that day or the day before.
I wondered how he was doing with his treatment but didn’t get the chance to ask him as he was called in to see the nurse.
It’s been two weeks. I’ve been taking my treatment religiously and I’m told that I am less infectious and can go back to work! My colleagues and I have been chatting about getting Sthabile tested for TB because even now she still has not been tested. I tried to get my sister to take her to the hospital but she hasn’t confirmed whether she would be able to do so. It’s on days like these that I wish I was in Durban or had taken the opportunity to bring Stha to Cape Town with me when I had the chance.
I have been feeling a bit weak and sick. I’m starting to experience most of the TB symptoms now. I’m sweating, the heavy breathing is still there, I get tired more often and I can’t sleep well because I cough throughout the night. Anso suggested I see a doctor in the public health sector. She had already sent him an e-mail to get a second opinion on the TB and the treatment I’m receiving and he said we could chat some more about it. I am going to be seeing him this week.
My first meeting with the doctor went well. The doctor needed me to give him a full account of how I was diagnosed. From the time I started coughing to when I made the first clinic visit in Durban to the time that I was finally given treatment in Claremont Clinic.
The nurses at the hospital’s TB clinic did a routine check up which included testing my blood sugar and measuring my weight. When I was with the doctor he also examined me. He said it was possible, depending on how far the TB has advanced, to find signed of TB in my glands especially behind one’s ears and ankles. He told me that I don’t have any signs of TB in either areas.
He asked me if there was anything in particular I was worried about with regards to my progress after starting treatment. The reason why it had become important that I see him was that I didn’t feel like I was getting better although it was almost three weeks after starting treatment. I was coughing, had started sweating a lot which had not happenied before. I was not feeling well, despite treatment. I was very anxious about everything. And in addition to my worries was my daughter because she has not been tested for TB. I can just see her coughing as much as I do, her little forehead sweating and her not sleeping. Out of everything that was happening with to me, I could not bear for her to suffer.
I told him that I had plans of getting Sthabile to Cape Town to stay with me. He seemed pleased to hear about it but warned that it might not be safe to collect her as yet because I might still be infectious.
We chatted about the treatment. He wanted to know how the medicine tasted and whether it was easy for me to take it at the time.
The six tablets that I’m taking taste bitter and made me feel sick. I am also experiencing repeated headaches. Some people have reported worse cases of nausea so I’m not too worried about it.
He requested another sputum test (that’ll be two sputum samples). The first one will be taken this afternoon and another one early tomorrow morning – first thing when I wake up.
He said he needed to establish whether I am doing well on the treatment and whether I might not have drug resistant TB.
25 November: A tough decision
Even though my meeting with the doctor went well there is still too much unease in me about the things we talked about. For months I have been planning on finding a way to get Sthabile to come stay with me. Finally I’ve decided that I want to do that as soon as next week. I was so excited I could have done it sooner but circumstances did not allow for it to happen at the moment. I had to first make sure the treatment was working.
He said she could stay with me but would have to be on treatment to prevent her from being infected and urged me to have her tested before bringing her to Cape Town.
If I don’tt have drug resistant TB she could be put on a prophylaxis. But If I have drug resistant TB then it would probably be a different story all together. That is all that is worrying me at the moment. Having to make the decision of whether to take a chance and get her to Cape Town and perhaps infect her and then get her on treatment or let her stay in Durban and not know when she will even be tested for TB.
Going to Durban symbolises something different for me today. I feel like I’m about to do the best and the worst thing I’ve ever done before. To bring Sthabile with me after a long time of not staying with her is the most incredible part of it, but putting her at risk of is the most difficult part. It makes me shiver to think of all the things her little body will have to deal with if she was infected. Infected because of me, by me. That makes me the most selfish person I know of right now.
But knowing that she can’t have the best care anywhere else is what makes this decision the best one for me right now.
I thought the visit with my family wouldn’t worry m, but I’m worried. I have spent the day trying to avoid being in closed spaces. I have avoided coughing around people and just being in the house makes me nervous. Although I know that I can’t infect them by just being near them I still can’t help feeling like an outcast when I’m with them.
I’ve walked outside to cough about ten times since I got here. I have had a couple of cough attacks ‘ that’s when I cough so hard I think I might collapse and die. I’m afraid that if I cough in the house I might forget to cover my mouth and someone might get infected. So I go outside to do it.
Sthabile and I will be leaving Durban on 1 December. It is great that I’m going to get a chance to spend more time with her. Having her near me will also enable me to make sure that she is tested for TB. It is better that we know sooner rather than later.
November 30: Sputum results show promise
I’ m going to be giving sputum at the clinic on 21and 22 December. This will be to check whether there is any progress since starting on treatment. This is a big deal to me. If these results come back positive it might mean a lot of things, I might not be responding to treatment, it might be that my TB was so severe that it is taking too long to respond to treatment. Worst case scenario, I might have drug resistant TB.Somehow I wouldn’t be surprised if I was told I had drug resistantTB.
I haven’t been feeling much better since starting my treatment. I’ve been feeling really tired and drained, I sweat a lot which is something that didn’t happen before starting treatment and I have these persistent headaches (maybe I worry too much).
The doctor sent me an e-mail with exciting news about the sputum test he conducted. Within almost three weeks of starting treatment my sputum test have come back negative. This rules out any chances of me having drug resistant TB. It makes me more hopeful about the decision to collect Stha from Durban. I know it doesn’t mean I’m cured but it means we are going somewhere with this. It means soon I will not have the sweats, the cough attacks and other symptoms. I will be able to breathe normally again. I see a light at the end of the tunnel!
One of the things I miss is to walk without feeling pressure on my chest. Breathing normally was something that I took for granted. It was never one of my worries but now it is. I think of whether I will ever be able to walk for 20 minutes without experiencing shortness of breath and getting a cough attack immediately after that.
I’m in Durban going back to Cape Town with Sthabile tomorrow. It will be her first trip on a plane and my first trip out of Durban with her. I’m worried about the trip, getting to Cape Town and whether I’ll remember opening the windows and avoiding things that will make it easy for her to get infected.
The first thing I need to sort out is getting her tested for TB.