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World TB Day: TB in the family

24 Mar 2015

I am 33 years old. I used to work as a teacher but I stopped because I was put on treatment that takes longer. I thought I had a regular cold, I was coughing. I had all the symptoms of a cold but the coughing continued. I went to the hospital; I was tested and told I had TB. I was put on regular TB medication but after four months, I found out it was not the normal TB I knew about. This is when I went to the Green House, a clinic run by Médecins Sans Frontières, and following further investigation, I was initiated on multidrug-resistant (MDR-TB) treatment.

Now am on my second year of treatment. After one month, I told them I had a weaning small child, they asked me to bring him for testing. His results were negative but the doctors saw it crucial to put him on MDR-TB treatment - the boy was sick, he was not healthy, he was weak and after taking the medications for around 7 months, he started becoming better. This was not the case for me, after 5 months, it turned out I was resistant to some drugs and so they were not helping my body. I was advised to try another drug which was not locally available. I was asked to come after a month for this new dose. This new dose showed that now I was no longer being treated for MDR but I was starting my drugs for extensively-resistant TB (XDR-TB), so the time I had used to take MDR-TB drugs no longer mattered, I had to start anew with XDR-TB drugs.

"It was very stressful. I worried why this was happening to me but with constant counselling by doctors and nurses at Green House I became somewhat confident."

First of all, it was very challenging, even at the start, I was startled when I was informed I had TB. I wondered how I got it and I was not very well informed about the disease, I had never seen anyone with TB but I just had to deal with it. But what was more difficult was the initiation to the MDR-TB drugs for myself and my son – it meant going to the Green House everyday with my son to take the medication and get daily injections for eight months.  It was very stressful. I worried why this was happening to me but with constant counselling by doctors and nurses at Green House I became somewhat confident. But still my child was troubled by the medicine, he was throwing up a lot, he would lack appetite, he would refuse to take the medication and getting the injection to a small child was the most painful, having him injected every day. And even using the XDR drugs, I knew I was going to be the first patient in Kenya to use the drugs – this made me think and question if I had been bewitched. 

It was very challenging and sometimes I was almost crying wondering why this disease has attacked me – I was once a teacher, and now could no longer operate because I had and have to wake up very early to go to the Green House and take medication. The medication have their own challenges, I would feel – I would feel weak, nauseated and so I decided to halt my work and complete my treatment.

On MDR, in my opinion, not so many people are aware what this disease is, some are diagnosed with regular TB and most end up dying because those hospital do not have machines to diagnose MDR-TB. About XDR, it is a new disease in our country and that is why our own government do not have XDR treatment, and that is why my medication took one month to arrive in Kenya, so what I can wish for is that the government can make available these drugs same as they have done with TB drugs. So these MDR drugs take two full years, going to the hospital every day to swallow the medicine and you get a daily injection of 8 months – and these drugs are very strong, I often feel dizzy, nauseated and I can no longer work. So, what I would suggest is these drugs to be reduced and have them with no side effects such that they can be like other drugs one can take and continue with their work. And also this 2 year period is a long time – we used to be many but some drop out of the treatment or stop treatment after a few months due to the duration of the treatment  and such an action can turn the MDR-TB to XDR-TB or the patient can die.

"So these MDR drugs take two full years, going to the hospital every day to swallow the medicine and you get a daily injection of 8 months – and these drugs are very strong, I often feel dizzy, nauseated and I can no longer work."

I wish I will complete my treatment one day, even though I know the duration is long. I wish my child is cured and goes back to school – some children at his age now have gone to school but we will have to wait, and I look forward to taking him to school when he is cured. And I hope I can continue teaching. Teaching is my passion and I like children and now that I know about MDR- and XDR-TB, I am better equipped to give the children, their parents and my community information regarding these diseases so that they can protect themselves from getting TB.

When I went to the Green House, they gave me useful information, advice and health talks because I have two kids – Agnes and John, 10 and 3 years respectively, and I also have a husband. And it was stressed upon me that TB is an airborne disease and that I could infect those close to me via coughing. So I was asked to cover my mouth while coughing and I separated my sleeping space from that of my son as we used to sleep together because he was young. I keep my windows, doors open, air my beddings and I was advised to use my mask at home sometimes when I am cooking or when we are sited at close proximity. I also cut out my social life and avoided visiting people’s houses too much to help contain the transmission. I want to protect my family and those around me. I am very happy that my daughter and husband do not have the disease.

I would like people to be aware of MDR- and XDR- they seem like big things or they do not exist but this is a real disease like malaria and HIV but as of now both MDR- and XDR-TB need more attention – these are killer diseases. I urge everyone to protect themselves from TB. We should have discipline and protect those around us, for example covering our mouth when coughing. I also ask those on treatment not to give up and follow through with their treatment as MDR-TB can be easily caused by defaulting from regular TB treatment. And MDR-TB is passed on as MDR-TB from one person to another, same as XDR and we will soon end up having a lot of people needing treatment for these diseases.

And I strongly want to urge public transport drivers and touts to always keep their windows open. It makes me very angry when I find windows that cannot open in such vehicles. In my case for instance, I think I might have got infected on a public transport car – no one around me had TB. For the passengers, make sure the windows are open – you would rather catch a cold from an open window than get infected with MDR-TB.

 

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