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'She does not need to die and, had she lived in the US or UK, she wouldn’t'

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One of the biggest challenges for us as a hospital and a country is dealing with drug-resistant TB. Although it is still early, one new development here in Swaziland is that the new MDR (multi-drug resistant) TB Hospital has opened its doors and within the first week I sent our first three patients to be treated.

After eight years of waiting for this hospital to be built and then waiting for it to open; we waited some more making false promises to patients and sitting by and feeling helpless. Eventually we sent them home and conducted home visits (support, education on cough hygiene and isolation).

In reality we know we were sending patients home with TB to rapidly spread the disease among their homesteads and families.

Today, finally, this is no longer the case. We at least have a hospital where some of them can be admitted, isolated, and receive treatment. 

Thembi is 42. She is a mother, grandmother and head of her household. Her daughter and grand-daughter live with her. Her husband is dead (probably from HIV since she is also infected).  Sometimes in this situation, another brother or male relative would step in to care for them.

It makes me wonder if no one wants the responsibility of caring for someone who is HIV infected and too sick to stand up. Thembi had been fending for herself. She had been taking ART (anti-retrovirals), and has defaulted her TB and ART treatment because she is too weak, too thin, and too consumed by AIDS and TB to continue.

When I went to see her at her house back in October, her daughter told me, “she is tired now and just wants to die”.

I find these situations all the time and there is not much to offer. I thought to myself, “well, the least we can offer her is some food and some follow-up.”

We gave her a bag of corn soy powder, contacted the clinic nurses to check on her, and sent around the hospital home-based care team to follow her up monthly… just to make sure she was eating, drinking, properly bathed and had a clean place to lie down. The motorcycle adherence officers also checked on her.

The thing that ate away at me was that she does not need to die and, had she lived in the US or UK, she wouldn’t. She just needed a hospital which could give her IV fluids, nutrition, and help her take these horrendously strong injections and medications that made her weak and nauseated. (We can’t take these patients or we risk infecting our staff and other patients with MDR TB). So by December, I felt completely hopeless about the situation. But I take this all too personally. These patients are not our MDR statistics, culture and Chest X Ray results. We go to their homes, we meet their families. They offer us the only chair in the home whilst they sit on grass mats in the dirt and look up at us hoping we can offer them something. And it feels completely unnecessary. If Swaziland is wealthy enough to have golf courses and an airport then surely they can have a hospital to treat MDR.

So I called the rural clinic last week thinking they would tell me Thembi had died. They didn’t. She was still alive and agreed to come to the hospital. I was amazed. We got in touch with her daughter, sent out the motorbike officers, and gathered up her notes. I can’t explain how long and how tedious this process has been of confirming adherence, confirming cultures, faxing records and patient numbers just to get each of them a hospital bed.

Yesterday, I checked it was all happening. I told the hospital the patient was too weak to move and they would need to send an ambulance to the home. I ask the clinic nurses to prepare the patient.

So today was the big day. Thembi wasn’t taking any chances. She couldn’t walk but was carried onto a bus by her daughter and brought to our hospital to wait for the ambulance to take her to the TB hospital. When I saw her I was fighting back tears. I could see every bone in her face, her eyes were sunken in and she was so dehydrated she had trouble speaking from lack of saliva. She couldn’t have weighed more than 35 kgs.

I knew the ambulance would arrive by Swazi time standards— probably sometime late afternoon. I asked the nurse to pay for the daughter’s bus fare home and to make sure that both Thembi and her daughter received lunch if the ambulance had not arrived. By 5pm when I returned, Thembi was still lying on the wooden bench in the TB waiting area. She had been here with her daughter and granddaughter for 10 hours. I phoned the ambulance. They said they were en route.  At 5.30, this shiny new ambulance finally arrived. The driver put on his face mask, covered Thembi with a blanket and lifted her up into the back. He put all her clothes in plastic bags and made a big production about following proper infection control procedures (after she has been travelling on public buses, sleeping with family, and sitting in clinic waiting rooms for the past sevenmonths). 

I shut the door to the back of the ambulance and wished her good luck. She gave me a very tired looking smile back. They took off in this cloud of red dust and I watched until the flashing red lights were out of sight.

Thembi is now in the care of the national team. She’s finally been given the treatment she deserves after waiting so long. I feel so hopeful for her. Not that she will have a better outcome from all of this. Her chances aren’t great given the TB and AIDS she is up against.

But I feel hopeful because our whole team pulled together and each took a job in making sure we did everything we could. Swazis are tough people and Thembi has got be one of the toughest I have seen so far.

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Readers' comments (1)

  • Susan, do not be disheartened. Eventually, you and the team got Thembi to the appropriate hospital.

    She would, as you say, have a far higher chance of survival if she lived in the US or UK. But she does not, she lives in a 3rd world country which is struggling. People like you who give your time, knowledge and expertise are worth your weight in gold. I take my hat off to you

    You must keep chipping away and improving care and standards, as I am sure you are.

    Remember, the US and UK were once like this

    judith willis Rgn

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