In Cambodia alone there are thousands of hammocks slung between trees on the shores of the Mekong. I see them all the time, many positioned in fairytale-worthy locations. But there’s always poverty. I am sure it gets boring hearing this from the First World where I am well aware how difficult it is to envisage the scale or impact of such things because we just don’t see or experience it. The last thing I want to be is boring. But I feel confronted everyday by the levels of hardship experienced here. Perhaps no more so than the malnourished 14 month old dying of AIDS who we met yesterday. Fading in and out of consciousness, the size of a wasted-away two month old, bones protruding through skin at every joint, lying on a wooden bed base beside a very healthy looking older sibling who stared at us in fascination while the elderly grandmother sat quietly touching her grandbaby lightly, her face lined with age, worry and sadness. We spoke to her very briefly and she said that the children’s parents had both died. We were there to visit one of our students, an HIV positive orphan hospitalised with an acute lung infection. One of her fellow pre-adolescent orphan “sisters” was with her, sitting serenely surrounded by sick children. Aware of their diagnosis by now, I wonder what goes through their mind when they see these unwell, dying children, all victims of the same virus that has them in it’s grip.
Yet despite the often-overwhelming despondency there are always plenty of laughs and positive or cheerful moments to be had. My translator has encouraged me to take photographs whenever I want because “usually Cambodian people don’t mind. Because your people have a good reputation. We don’t think you would use photographs in a bad way and we think that you are generous and you want to help”. He’s proven to be more than just a translator, he’s a wealth of knowledge and understanding, about both his own nation and culture as well as the many western cultures he has worked with over the years. More of a cultural consultant, than a mere translator. Recently a friend returned to Cambodia from Australia, carrying with her a book of Australian slang for him because he is always throwing unexpected Australianisms at me, eg just before a meeting we had to attend recently “wait here for me, I just have to go to the dunny!” Then a pause while I process what I just heard, followed by a round of laughter, then a check with me “that’s correct, isn’t it, dunny?” Yes! But where on earth did you get it from?! And he laughs his way to the loo while I explain to the room-full of English-speaking but confused Khmer colleagues what just went on.
One of my favourite western restaurants in Kampong Cham is Destiny, who serve gourmet sandwich / pub style food. This morning after 3 hours cruising on bicycles through rural lanes with my Australian and Slovakian housemate-colleagues, we landed sweaty and hungry at Destiny for a late breakfast. The manager was there and happened to mention that this cafe belongs to Destiny Rescue, which I had not heard of, training victims of human trafficking. I knew the staff came from disadvantage but hadn’t realised the magnitude. So I spent a little time browsing their website this afternoon. It is interesting and informative, and they are clearly another organisation worthy of support.
http://www.destinyrescue.org/aus/who-we-are/about-us There are an estimated 27 million slaves in the world today. Destiny Rescue is committed to liberating those enslaved and restoring those that have been abused. Already serving in five nations, Destiny Rescue will keep expanding to reach even more children.
The manager sat near us at breakfast and we chatted with him intermittently in between talking amongst ourselves. Later in the day I returned alone to use the wi-fi and he approached me for more information on how to contact us because he was speaking about us to a doctor working with Destiny who would like to meet us! Things like this happen all the time here – expats seek other expats out, or NGO involved people network with others doing similar things. I’ve been offered the chance to volunteer with three other NGOs once my MSF mission here ends and hope to coordinate all three somehow in order to return and spend more time here.
Last night, in fear of rainfall all evening, we took 16 children to the Night Market for a meal/treat. Two homeless girls, two siblings staying in hospital while their father is very ill, one son of a staff member and 11 of the 12 orphans (because one is sick and had to miss out). Eight of us piled onto four bicycles in true Cambodian style, and doubled our way to the market, with children laughing excitedly all the way. The orphans, also doubling each other, met us soon after. Combinations of fried rice, ice cream, fruit soaked in sweetened condensed milk and cans of soft drink were ordered, all outside of our comprehension of what was being said to the server, amidst chatters of excitement and interspersed with brief shouts in English of “thank you!”, “delicious!” and “happy!” It was clearly a treat, confirmed by the Orphanage Director who said that this morning the children were full of talk about their trip out. In my wildest dreams I could not have imagined this block of rat-infested broken pavement housing grubby outdoor stalls, selling $1 meals, cheap clothes (which a local told me I should not buy because they are over-priced!) and with a few rusty looking childrens’ rides and some trampolines, would be considered a “treat”. But last night I learned that it is!
Meanwhile Tuberculosis continues to teach me daily lessons that in my wildest dreams I could not have imagined possible. Many TB patients are memorable for different reasons. In ten years of working with TB in Australia I remember every one of my patients well and with fondness. Some of them are alive today and far too many of them have died prematurely (thankfully, unlike my Cambodian patients, never from TB). A few years ago we had a patient from a TB-endemic country who had been told by Australian doctors that he probably had abdominal cancer, which appeared as tiny nodules which had riddled the mesenteric lining of his abdominal cavity. Biopsies were taken but the doctors, from a first world country where TB is rarely considered high on the list of probable diagnosis (except when doctors have experience in TB-endemic countries), were fairly convinced of an aggressive and late stage cancer diagnosis which was also supported by the clinical presentation of severe weight loss among other symptoms.
Having only recently married, he and his wife returned to their home country to spend his last days with his parents and family. However, when the test results for TB returned positive eight weeks later (the time it can take for TB bacteria to culture), his diagnosis was altered. He suddenly had a curable disease. When he returned to Australia and met me for his first TB treatment appointment, he had been through a terrible ordeal, facing imminent death, and could not believe his stroke of luck that the doctors had gotten things so wrong. He was also a very interesting case having commenced his TB treatment overseas, in a poor country where health care is fully privatised. His TB drugs had been free via WHO but his doctor had also recommended various additional treatments which he had to pay for. He produced a brown paper bag filled with both anti-TB medications and various extra vitamins and supplements, telling me in detail why he was on the various extra medications and very reluctant at first to consider ceasing these added drugs because his doctor had so convincingly recommended them (something his new doctor successfully addressed). Most surprising of all to me was the way he pointed to each drug and told me exactly how much each individual pill had cost him!
This was my first exposure to the Fixed Drug Combinations (FDCs) used via World Health Organisation, where all of the anti-TB molecules are combined into a single pill. The purpose of this is to reduce the number of pills patients are required to swallow. For example, the standard TB regime begins with four different anti-TB molecules, which when administered as four separate pills can amount to 15 or more pills (depending on the patient’s weight). When an FDC is used, this number reduces to 3 or 4 tablets per dose. This simple measure increases patient adherence to treatment. In Australia we have the resources to increase adherence in other ways and we have not moved towards using FDCs that I am aware of, but in the developing world where resources are so scarce, simple measures such as this are important. I have since seen FDCs in both East Timor and Cambodia, and according to a TB Alliance report, 20 of today’s 22 highest burden TB countries (of which Cambodia is currently listed as number 22) now use FDCs. When I presented an education session on TB recently I showed a photograph of an outstretched hand with single molecule TB medications sitting on it. One of my very experienced nursing staff said to the group “these are the old fashioned medicines we used to use, but now we have FDC so many of you will not recognise these tablets”. I countered with the information that in Australia we still use these single-molecule tablets, to which they all chattered excitedly in Khmer before one of them said to me in English “Australia is supposed to be a developed country!”, clearly fascinated that in this single matter, Australia is not as up to date as Cambodia!
This week’s memorable patient encountered myself and a small team (driver, social worker and nurse) in her village this week. We drove about an hour along dusty bumpy roads following the river south, sighting a group of tourists on race bikes in one remote location, but mostly seeing only Cambodian rural scenes of coconuts on sale from the back of shoddy wooden trailers attached to ancient motos, pyjama-clad women transporting produce on trays balanced atop their heads, horse and ox-drawn carriages filled with various agricultural produce, etc. We went there to locate a Home Based Care (HBC) Nurse for a hospitalised MDRTB patient who is almost ready for discharge, once we find someone who can administer his Direct Observed Treatment at home. At the patient’s home we sat and spoke at length with his sister about the treatment, plans for his return home and the need for a Home Based Care Nurse. She had already nominated someone and confirmed to us in person that this woman would be competent and trustworthy to ensure all doses of the lengthy and difficult treatment were administered properly. My nurse then called the nominated person who lives close by and she arrived moments later on her moto. She sat with us as the team talked to her about the training she is required to attend with us and some of the difficulties she will face as the person responsible to administer 18 months of daily treatment which causes nasty side effects and guarantees bouts of depression and anxiety in the affected patient. Despite not understanding (except for periodic translations given by the team when they were not involved in the conversation), I could see that we had found a good and honest HBC Nurse here. She then offered to show us where she lives, as this is needed for the “surprise visits” we conduct as part of our way of monitoring treatment progress.
On arrival at her home we were offered seats and I looked around noticing pharmacy stock in glass cabinets, customers standing outside waiting for something, and very clean and shiny surroundings. Then a very thin woman of about 40yo appeared in a beautiful pair of blue pyjamas, her hair in a bun and sat with us. It transpired over the next quarter of an hour or so that the HBC Nurse runs a small private, legal clinic-pharmacy from her home, with her husband. I say legal because some home based set-ups here sell drugs illegally – such as “black market” TB drugs which are supplied to the country via World Health Organisation and always available to TB patients for free, through a reasonably tight system. Except that occasionally there are stories of patients purchasing these drugs which have found a loophole into the black market. Such stories are always reported to the Public Health Department whose role it is to address such problems.
The blue-pyjama’d lady told us her story. She is currently staying at the small clinic because she is not well and noone knows what is wrong. When we asked her problem, she reported weight loss. Before she weighed 42kg and now she weighs 36kg. The implication was that this was her only problem. Many things cause weight loss, so with TB in mind we asked some more questions and a lot more information was supplied. Yes, she sometimes has night sweats. Yes, she sometimes has fever, and also has “fever in her stomach”. The HBC Nurse said “it can’t be TB because she does not have a cough”. To which my nurse explained that extra-pulmonary TB patients do not cough (unless they concurrently have pulmonary TB). Going back to her abdomen, we asked if she can feel any nodules in her abdomen? “Mien!”. (She has these). I suggested that it sounds like it could be mesenteric TB, but that she needs to see a doctor for a proper diagnosis. Only then did she mention that actually, she does occasionally have a cough because she has been unwell on and off for 18 years! She has seen many doctors and noone has ever diagnosed this chronic cough which comes and goes.
In Australia where health systems and social structures are functional, it would be almost impossible for someone to be unwell with symptoms, no matter how rare, and not receive some form of diagnosis via a referral system to specialists etc. The chronicity of TB in Australia in my experience was perhaps up to six months at a push – usually much briefer though, before patients sought medical advice and received an accurate diagnosis. I learned the theory around tuberculosis bacteria’s ability to endure in the patient’s suffering body for many years, during my studies in the 1990s. Historically, prior to a good medical understanding of TB or the introduction of TB treatments as recently as the 1940s and 1950s, TB had three standard outcomes, being:
1. The TB victim would become ill and die (usually infecting others during the illness);
2. The TB victim’s immune system would manage to ward the disease off over time, or;
3. The victim would spend years suffering the chronic effects of wasting away with a chronic cough, fever and other symptoms.
These chronic cases, during their infectiousness are considered to infect up to 15 other people for every year that they are unwell
with infectious TB. (Not every case of TB is infectious, however).
When I learned this information it was presented as something which no longer happens because we now understand the disease, have (albeit imperfect) diagnostic methods which can confirm the bacteria’s presence, and treatments are available and free. However, these outcomes do continue to plague many people, in places where health systems are weak, health literacy is minimal and resources are scarce. I first encountered the enduring ability of TB in East Timor where I met a number of patients who had suffered undiagnosed symptoms for ten years or more before receiving an accurate diagnosis. Despite knowing what I thought was a lot about TB, this experience astonished me. And this week, in absolute amazement, I feel sure I have encountered it again, in my longest-suffering patient yet! She agreed to travel to Kampong Cham this coming week, with the family of our hospitalised patient who will attend our clinic for contact tracing. I fully expect she will be hospitalised for investigations and confidently predict that her 18 years of chronic ill health will suddenly dissipate thanks to a six month course of TB treatment!
** Watch this space for an update! **