2010 and 2011 living with XDR-TB… Now we are going to enter 2012 in a couple of weeks.

TO ME THIS IS JUST A HORROR MOVIE and it seems like it is not yet ready to end. Just when everything is starting to get better, something will come on the way and there will be “setbacks”.

The question I have in my mind > if DR TB is surely curable, HOW COME SOME OF US DEVELOP THINGS SUCH AS PNEOMOTHORAX AND HAVE TO GO TO SURGERY? AFTER JUST FINISHING WITH THAT YOU FOUND OUT YOU ARE RESISTANT TO SOME MORE DRUGS < that just confuses me really.

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Comments

2 Responses to FINISHING ANOTHER YEAR In HOSPITAL/ HOSPICE

  1. Phumeza, you have done so well to stay on your treatment this far! Don’t give up – XDR-TB is very tough, but it is curable. Stay positive in your mind and keep up your treatment and your nutrition, this will give you the best chance at beating it. Keep looking forward to the day you are cured and can live a normal life again. Wishing you all the best, Sean.

  2. This is a comment from Phumeza’s doctor, posted with Phumeza’s permission:

    The diagnosis of drug resistant TB is not always straightforward. Typically, patients will initially present to their health care facility with TB symptoms, and their sputum may be sent to the lab for smear microscopy which is a quick and simple test for TB. This test only indicates whether or not the patient has TB, it does not specify whether the TB is resistant to specific drugs or not. The test to see if there is drug resistance may take a number of weeks or months, as it usually depends on the time it takes for the TB bacteria to grow in culture. This test is not done routinely for every TB patient due to the high demand on resources, and so it is only done for selected patients such as those who are not responding to regular TB treatment.

    To make things more complicated, full drug resistance testing here occurs in 2 stages. The first stage tests for resistance to two of the most effective TB drugs (Rifampicin and Isoniazid). If the TB bacteria are found to be susceptible to these two drugs, no further testing is carried out. If the bacteria are found to be resistant to both of the two drugs, the patient is said to have MDR TB (multi-drug resistant TB). In this case, the second stage of testing is performed, which involves testing for resistance to a number of other TB drugs – this may then reveal XDR TB (extreme drug resistant TB).

    When Phumeza first became ill, she was initially started on regular TB treatment and received it for a while before the drug resistance test was actually done. By the time the result of the first stage of drug resistance testing was received and it was discovered that she had actually had drug resistant TB all along, she had become very sick because she had only been receiving ‘normal’ TB treatment, which was ineffective against the resistant TB. She had to be admitted to hospital to start drug resistant TB treatment, and an X-ray showed that she had a collection of pus in her chest. An operation was carried out to remove the pus, and it was during this procedure that she developed a pneumothorax (her lung collapsed). This is not unusual in such an operation, and she required long term admission with a chest drain for an extended period of time to help her lung re-inflate.

    It was only some time after her operation that the results of the second stage of the drug resistance tests were received, while she was still in hospital on treatment for MDR TB. These results showed that Phumeza had actually had XDR TB all along, which was why the initial TB treatment had been ineffective and why her treatment had to be changed again, to treat XDR TB. Unfortunately by this stage she had been receiving partially ineffective treatment for a long time and had likely developed even further resistance to the existing TB drugs.

    Phumeza is a young woman who is compliant with her treatment and determined to get better and be cured. This is why she was offered a salvage treatment regimen by MSF, with drugs which are prohibitively expensive and not easily accessible or routinely available for DR-TB patients in South Africa. This treatment regimen is the last option for any chance of cure for Phumeza.

    Unfortunately, there is a lack of new, effective and easily accessible drugs to treat patients in these situations. If there were better drugs available to treat this awful disease, Phumeza may have been offered a stronger treatment regimen from the beginning which would have greatly improved her chance of cure.

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