Fundraising for the 20yo woman with (probable?) Rheumatic Heart Disease needing urgent heart surgery continues. A friend asked me to prepare a Powerpoint presentation for a fundraiser she is organising and I thought I would share it here as it summarises some of the stories I’ve spoken about disjointedly.
Story One: An Inconceivable Connection
In May 2014 I met a 25 year old Islamic woman from a rural village in Cambodia who had been told she had terminal cancer. Surgeons in Cambodia operated twice to remove the “cancer” from her abdomen, first forming a colostomy as they removed some bowel. The diagnosis came purely from the doctors opening her abdomen to investigate the pain she had been experiencing since pregnancy with her now-8yo son. They based their diagnosis on what they could see – inflamed lymph nodes in her abdomen. There were no resources to take a biopsy or other investigations which would give a proper diagnosis.
Surgical practices are basic at best and often dangerous without good equipment. When her pain persisted, they performed a second operation which damaged her bowel, causing a second opening on her abdominal wall to form (a fistula). She now oozed faeces from two sites on her abdomen. This caused acidic burning of her skin and she was unable to absorb food so she became severely malnourished. Doctors finally told her she should go home to die. A short time later she developed a chronic cough and was diagnosed with lung TB.
Although it was thought she was dying, her TB needed to be treated for public health reasons. Constant abdominal pain, oozing faeces which burned her skin and severe malnutrition were her main physical problems when she was admitted to the MSF program I was working on, with drug resistant TB. We were unable to find any muscle mass to inject the second-line TB drugs when she was admitted to us, and she was unable to stand up without assistance. She weighed 20kg.
After a few weeks on the right TB medications her cough eased and her abdominal pains ceased and I was sure that she had abdominal TB rather than cancer but there was no way of confirming this. She continued to ask us if we thought she was going to die and we had no way of knowing the medical answer to this question. She stayed in hospital for two months before we discharged her home.
My nurse team visited her at least once a month and I visited her either with them or at weekends, multiple times but I was at a loss to help in any meaningful way. She needed colostomy bags and protective dressings but they were unavailable in Cambodia. When I came home to NZ and Australia I tried to source them but they were expensive and I was not able to supply more than a few weeks’ worth, so I did not supply them. She had to wipe the openings with tissue or gauze many times during the day and night. All I could really offer was a little financial help to the family for food, school fees and gauze, and some emotional support.
Waiting to die from surgical complications related to undiagnosed mesenteric tuberculosis (2015), photograph courtesy El Pais newspaper who visited the MSF TB project
Her other problem was the debt her family had accrued trying to find a diagnosis and treatment for her. They sold their house. Her father had moved to Malaysia where he could earn a slightly better income selling food at a street stall. Her grandfather had taken a loan out with his house as collateral. Her younger brother, a very eager student, had been told once he turned 15yo that he would have to leave school and was thinking of moving to Thailand to work on unregulated fishing boats. They were financially desperate. Her mother stayed at home to nurse her daughter’s wounds and care for her 4yo son. They were living in an extended family home in crowded conditions. Laundry is done in the nearby Mekong and I was constantly astounded that the open, oozing wounds, had not become infected. This was testament to the family’s extreme care.
In June 2015, a year after I met “Paula”, I was on holiday with an American friend in Provence in the south of France. She invited me to a lunch at a beautiful medieval homestead with some wealthy Americans at an exclusive cooking class. During conversation some of the Americans were very interested in Cambodia and asked me to explain what I meant when I used the word “poverty”. I tried to explain Paula’s situation and the health care system. I described her sitting on her death bed in a wooden hut beside the Mekong as we sat at this lush table with so much more than we needed.
Three American women sitting opposite me were on holiday together. They were especially interested and one of them cried as I told Paula’s story. Another asked me so many questions that I thought she must be a doctor or a nurse. But she eventually told me that her husband is one of America’s leading gastro-intestinal surgeons and he would be fascinated by Paula’s story and would want to treat her himself! When I explained that this was a nice idea but completely impossible, she assured me that it was perfectly possible. She and her husband sat on the hospital board and could influence them to agree to a charity case for free surgery. Someone else at the table was so inspired that she offered to pay for all other costs if the medical costs could be covered.
A very memorable lunch
I returned to Cambodia almost immediately, cutting my European holiday short to organise a million details including passports, American visas, air travel for a critically unwell passenger. She fainted at the photograph store when we took her for her passport photographs; fainted between the tuk tuk and hotel a number of times; fainted twice inside the American Embassy in Phnom Penh during her visa interview. My life from July 2015 until early October 2015 was filled with taking this dying woman to various appointments and helping her fall to the floor as we challenged her to travel and walk distances she was not in any position to tolerate.
In October 2015 I travelled with her, her mother and a Cambodian nurse who acted as our translator, from Phnom Penh to Seattle. A local Imam met us at the airport and drove us directly to the hospital. En route, with the skyline of Seattle ahead of us in the distance, I heard her speaking Arabic to him from the front passenger seat. Some time later he informed me that she had said to him “I can die now, because look at the experience I have had”! She was admitted to the surgical ward and immediately began receiving the type of health care that we in New Zealand take for granted. Within days her nutrition had improved and within two weeks she was deemed nourished enough to undergo surgery.
During our first 24 hours I found myself responsible, as the only native English speaker, for finding Halal food for her and her mother, which was quite a feat in a wealthy inner city area of one of America’s most prosperous cities. After some time searching the streets I found a Vietnamese restaurant and ordered takeaway. When I arrived back at our hospital room, a group of Islamic people were visiting. They approached me eagerly to ask “are you the Australian doctor who brought her here for surgery?”. Errr… no? “Yes you are, it’s you who did this for our sister!”. From that moment for the following two week stay, I was overwhelmed with attention from dozens if not more than 100 Cham people, mostly refugees from Pol Pot’s Cambodia in the 1970s, who have a strong community. I never went looking for food again, as we were inundated with home cooking multiple times per day. I was invited to stay at a family’s home where dozens of Cham Cambodians came for dinner to meet us. The next morning the teenage son of our host family found a shoe box, cut a hole in the lid, taped the lid to the box and said he was taking it to mosque to raise money for Paula’s family. He returned a few hours later with US$3,000. The money was given to me and I was told “you must tell them what to do with it”. I carried it back to Cambodia and gave it to grandad, who took it on the back of Paula’s sister’s motorbike, straight to the debtor, at my request and with me following in Chom’s tuk tuk!
Within two weeks of our arrival in USA an eight hour operation rejoined Paula’s bowel and closed her wounds. She remained in America for five months to recover and to cut a very long story short, this is a photograph of her at home in Cambodia taken last week <not shared online to protect her privacy>. She remains impoverished but she can care for her son and she works, selling homemade rice cakes from outside her house.
Story Two: A Fishy Connection
In February 2017 after more than a year away I returned to Cambodia and am now working on a project with Medecins Sans Frontieres, based in Phnom Penh. The rich-poor divide in the city is visible and extreme. The poor have few options and I can probably count the list of their choices for income on ten fingers. One of them is to run a mobile “restaurant” from a trolley on a bicycle, cycling the streets hoping to find someone who will buy your fried banana.
Searching the streets for recyclable tin, plastic, paper and cardboard is another common income generator and you see very young children and very elderly people pulling trolleys through the streets, as well as parents with children in the trolley with their collection of rubbish.
Last year when I came home to visit I landed in Christchurch at midnight with no way of making my way home to Mum until my uncle insisted on driving the almost three hours one-way to collect me and taxi me home in the middle of the night. This uncle fishes off the shores of New Zealand’s picturesque South Island almost daily. He took me out in his boat to pull up some craypots, and we swam in the open ocean in wet suits. He dons goggles and swims with a long spear, catching butterfish. He has regular close encounters with fur seals and dolphins and has even been up close and personal with Orca. He refused to accept anything from me in thanks and so I promised that I would fix a fishing boat in Cambodia on his behalf.
Across Cambodia and in a particular location near Phnom Penh there are many landless communities of Islamic Cham people who live on boats or, when the river water is low enough, build makeshift shacks with any material they can find, on the riverbank. A friend of mine volunteers with an organisation who work with one such community of about 500 people, ensuring the children have birth certificates, pay the school fees for families who fit their criteria (agree to keep their children in school and not make them work on the boats), work with families in need of health care etc.
For at least part of the year the community live on their boats as the riverbank disappears underneath the rising waters during Wet Season. In April this year a particularly strong storm swept through Phnom Penh. Even from my fifth floor apartment with it’s double glazed windows I could hear the torrential rain and winds. That night one family’s boat sank to the bottom of the Mekong leaving them without their only source of income – access to fish which both feeds their family and gives them something to sell. When I told the organisation a few weeks after this storm, that I had a donation to use on repairing a boat, this was the family they identified.
The family bought a new boat and when I visited about eight weeks later, it was upside down on the riverbank being waterproofed. They told me via a translator that “we do not know how to thank you, there is no way to tell you how much thanks we have for your help”. I also learned on that visit that they could not live on their boat as they had no roof for it. The parents and two youngest children were sleeping in a tiny shack, two other children with a neighbour on their boat, and two children in a land based shack with another neighbour. The wrong (cheaper) roof could potentially pull the boat over in strong winds and they could not afford a better roof. When I asked how much a decent roof would cost they showed me a roof that was for sale at a boat nearby, for $60. We funded this roof for them immediately.
The $60 (unaffordable) roof for sale, in front of the neighbour’s boat. The neighbour has a newer roof (on the boat behind), hence the older roof for sale. This “quality” roof can last for about ten years. The family are able to live together again on their little boat.
Story Three: The Rheumatic Connection
Or so I think. It could be another disease, but it’s most likely Rheumatic Heart Disease, a condition of poverty which occurs at very high rates in impoverished populations, including Central Australia’s indigenous communities.
Last month a friend told me about Sokum, a 20 year old woman dying from heart failure. She could live if she could access the cardiac surgery that would treat her condition, but cannot afford the $6,000 needed.
Her family have no way of raising the funds to pay for her surgery and an American student working with Sokum’s husband started a fundraiser to help them. So far we have raised just over US$3,000 but donations are drying up.
The family went into debt to organise a cardiologist review some months ago, and were told that she will be too unwell for surgery if they wait too long but without the money for hospitalisation costs, they have no choice but to watch her fade away. Without access to her cardiologist I can only guess that her most likely diagnosis is Rheumatic Heart Disease, which is common in populations living in poverty.
When I asked her husband to say something for fundraising purposes in New Zealand here’s what he wrote:
My wife’s name Sokum and 20 Years old.
Before her parents take her go to meet traditional doctor but she is not better and then my parents continue to take her go to public district health hospital a doctor said that lung failure. The doctor provided a lot of medicine but feel not well more serious ill so, my parents continue to take her go to referral provincial the doctor said that can not treatment here need to send Phnom Penh city. In the Calemet health hospital doctor asked her about situation and check with x’ray so the doctor tell her truth about heart problem. need to make surgery very soon.
Before we don’t know but when we were to Calemet hospital and know about her heart problem 1 year.
Now she doesn’t work because too sick of her. She stay at home right now can’t do hard work and can’t eat with salt food.
Before she is works at factory worker 3 years and during work with factory she working hard to find money to support the family.
Thank you helen
If you have more question please feel free let me know.
I should be in a position to provide an update on this fundraiser in a week or two. Things are moving slowly but surely and Sokum had a cardiologist appointment in Phnom Penh today. Some incredibly generous gestures have been made on her behalf which I look forward to speaking about once everything falls into place. All donations continue to be warmly welcomed, either through Go Fund Me or by contacting me directly.