The Anguish of AIDS

Last time I gave a pseudonym to a young patient so I could refer to him easily, he died, making me reluctant to name my young friend.  But she is the same 14yo with HIV and TB that I refer to in my previous entry “Observations of Poverty”.  She has been with us for the past two weeks, but yesterday when her condition deteriorated, she was transferred to another ward where the care is better in that a doctor is based there.  Otherwise nothing changes – she is still on a bamboo mat atop the wooden slats of a bed, with limited medications and no health technology.  Some liquid glucose is fed into her veins through a plastic tube by force of gravity from an IV stand attached to the head of her bed.

She has been on TB treatment for approximately two weeks and today she began the Anti-Retroviral Treatment (ART) for HIV.  Her acute malnutrition, the biggest and most immediate threat to her life, has worsened thanks to continuous diarrhoea and vomiting.  The bloody diarrhoea is probably due to some sort of bacteria or parasite that would make most of us slightly unwell, but which can overwhelm HIV patients with low CD4 count.  CD4 are “helper” white blood cells which help protect us from infections.  HIV infects these cells and slowly obliterates them, making the person vulnerable to many infections, including TB.  Her vomiting could be due to the same infection, or perhaps a side effect of the many medications she is now taking.

This afternoon I went with my translator to the ward to visit her.  She was lying flat on her back with her eyes rolling to the back of her head, underneath a thin blanket which camouflaged her so well that you could easily have missed the fact that there was any shape above the flat bamboo mat she lay on.  Her mouth was slightly ajar but she was not in any apparent respiratory distress.  A wet towel on her forehead had slipped down over her eyebrows.  When she realised we were there she opened her eyes and adjusted the towel with her pale, swollen hands.

Her adoptive father was sitting in a doorway at the end of her bed, looking out to the hospital kitchen which is a series of ramshackle wooden huts where open fires billow smoke into the atmosphere, polluting the lungs of tiny children running around while their parents cut fish caught from the nearby Mekong to cook with rice on the open fires for patients, or collect rubbish from the hospital grounds into wooden makeshift wheelbarrows to cart to the open waste disposal area where more open fires regularly burn.  Small children dressed in rags often enter the hospital grounds with big sacks over their shoulders, looking for aluminium cans or plastic bottles to sell at recycling dispensaries in the hope of feeding themselves and likely their siblings and other family.  Occasionally I’ve seen children, some quite young, walking the streets with plastic bags of glue sealed to their faces.  I asked a local recently what makes the children sniff glue.  Apparently the sensation of being high on glue masks the sensation of hunger.  Unfortunately it also causes brain damage and can provoke psychological disturbance including violent behaviour.

As always, her father was bright eyed and smiling at us from the ground as we stood above him asking for information about her condition and treatment since the ward transfer.  He said that yesterday he had decided to take her home, but then changed his mind.  He did not say why but I assume due to despondence at their situation.  If he takes her home now she is guaranteed a quick death, while there is still currently hope of recovery despite her fragile state.  I encouraged him to keep her in hospital despite how hopeless it seems right now.  This morning he heard her cheyne-stoking and thought she was dying.  As he uttered these words, her eyes widened again from their drowsy state suggesting she had heard the comment.  With any luck the ART and TB medications will begin to improve her condition slowly, the gastrointestinal infection will be diagnosed and treated so that she can begin to eat and drink again, and she may gain strength.  In a First World country she would have a very high chance of survival.  But here?  In these conditions……?

We had a conversation with her father about his children (3 daughters plus this girl who he adopted when his “in laws” both died of AIDS).  I asked if there was anything that he needs for himself (as opposed to our patient) and he suggested that a bicycle-style wheelchair, I imagine much like the picture below (courtesy Google), would be very helpful.  Hopefully another NGO, “Handicap International”, may be able to assist in our quest for one.
Image

I then bent down to the low-set bed where this c.20kg teenager was doing her best to stay awake in our company and put my hand on hers.  Through my translator I said to her that it is very good that she is taking the medicine and not vomiting it, and that she will eventually get better now that she is on all of the right medicine.  She squeezed my hand.  Then she did not let it go.  I rubbed her arm and said some more reassuring words, and she squeezed my hand even tighter – proving that there is still some energy in her emaciated little body.  As we held onto each other I grasped that she was letting me know how afraid she feels.  Some strands of hair were stuck across her knife-sharp cheekbone.  As I stroked the hair behind her ear, despite the visibly sharp bones of her face, it was still a shock to feel the bones against my fingers.  I asked if there was anything that she needs.  The answer in Khmer was quite long, perhaps because there is no one word for it, or perhaps because she was explaining why.  The answer in English was “nappies”, to contain the diarrhoea.  Given that this diarrhoea could kill her, I promised her we would find some and bring them this afternoon, because if this is as dignified as her death can be, then she at least deserves such a tiny request to be met.  Thanks to MSF she is now supplied with some proper incontinence pads to contain the ongoing diarrhoea and hopefully she will rest much easier tonight.

Tomorrow we will visit again.  Meanwhile, debriefing with colleagues, a game of badminton after work, fried rice from the Night Market, upbeat songs on the iPod and a few laughs online with friends in far-flung prosperous places have all failed to quell the sorrow that connection with a dying 14yo, suffering the consequences of catastrophic poverty, provokes.

Poverty is the worst form of violence ~ Mahatma Ghandi

If you have a spare hour, this 1979 award-winning documentary from Australia’s John Pilger gives some historical background into Cambodia’s current plight.
http://johnpilger.com/videos/year-zero-the-silent-death-of-cambodia
The empty bed you see about half an hour into this documentary is identical to the empty bed Tom left behind in November.  And the one which is currently occupied by a 14yo girl on the brink of a death not unlike those featured in the documentary.


4 thoughts on “The Anguish of AIDS

  1. No words Helen. Beautiful post as always, we’re almost living it with you.
    Also, let me know about the monthly donation when you can x

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  2. i think anyone of us reading your account must be thinking about this little girl who has endured so much in her short life. The fact that she was adopted into a family who have obviously loved and cared for her in spite of their own hard lives, make our problems seem really insignificant. I really hope your words to her can come true Helen

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