My patients…..Tabitha… (all names are changed)
She is such a cute little girl. 5 years old. Often her mom is not here at the clinic where they have been living for so long. The other mothers watch out for her. Make sure she gets food from somewhere. There is supposed to be some food supplied for patients, but often…. we really aren’t sure how much they eventually receive; we are not in charge of the food distribution. Tabitha’s Mom is off trying to find some way to make some money, in the market, or down by the Nile, weaving baskets, trying to catch fish? I don’t know, really, where she is, because there is so much about the customs and the way of life here that I know nothing of. Tabitha makes me think of my niece, back home in Canada, who has everything a Canadian little girl has to her advantage. A world of things Tabitha and her family cannot imagine. Tabitha has Kala Azar. She has been treated for months, much longer than it would normally take to cure her. For some reason, her tests keep coming back positive. She still has this deadly disease. Our medicine is not working.
And John, who also has Kala Azar (remember, this is the disease I came to treat, but we also diagnose TB, leprosy, pneumonia, HIV, brucellosis, typhoid.... I could go on and on). This disease can be similar in presentation to HIV because they both severely affect the immune system, and the body's ability to fight off other serious illness. My patients often have a few of these other diseases, so it is a challenge...
I met John and his Mom on one of my very first days here at the Malakal Teaching Hospital. I didn’t know much about anything then. I barely had my feet planted on the ground, and not at all firmly. I was just starting to learn. John was on medication, and he was much better, so the nurses told me. But the day I met him, when they called me to see him, late in the day, just as I was about to head home to the compound, he couldn’t walk, he was vomiting, he had diarrhea, he looked absolutely terrible. I didn’t know how he had looked before, and people really do look so sick here; he didn’t look much different from so many of my other patients.
I ordered the (few) tests that we have available, added some intravenous fluids, more antibiotics, really, just hit him with everything we have, ordered some extra Plumpy Nut, the food paste that we give all our patients, to try to get some calories and nutrition into them, and went home for the day. When I came back on Monday, John was almost comatose. I ordered everything else I could think of, and went on to the next sick patient.
Kala Azar, or visceral leishmaniasis, is a disease I did not learn about in medical school. It is considered one of the ‘Neglected Diseases’ and there are conferences in places like London, or Shanghai, or Buenos Aires, where all the folks who know get together to discuss what to do about it, and the many other diseases that so many people here have (people with no money to pay for a cure or a treatment). Part of the significant issue with the neglected diseases of the world is that they are not neglected because few people have them, or they are not serious illnesses. They are deadly diseases. Generally, they are neglected because there is minimal profit to be made from finding a treatment or a cure, if no one has money to buy the finished product.
A weight loss pill, or a sexual enhancement product has millions of wealthy buyers in the West lining up to pay many dollars per pill for a medicine to make you prettier, or feel sexier. Tabitha and John's families don't own much, they live in a mud tukul, they share a cup and utensils with the other patients. They have no money for medicine. So, if the research departments of the pharmaceutical companies choose to focus on these illness, there must be a financial incentive. It's a fascinating look at how the world works and why I can only think of these things in my reflective moments; for now, let's return to the disease and the patient sitting in front of me.
Kala Azar comes from the bite of a sand fly, and it travels in waves; an epidemic will break out in an area, the population can be decimated with so many deaths, and the next year, it will begin in a totally different area. In the past, there have been villages where 90 % of the populace has died. It is difficult to predict where it will go next.
This is the disease I came to treat, and the unpredictability of the disease is why they made it clear to me that I may not ever go to the place I signed my contract to work in. Treatment is difficult. Imagine, a tiny emaciated 5 year old getting IM (intramuscular) injections of a very painful medicine into her buttocks every day for 17 or 30 or 60 days. Usually, the children are stoic. They often put up with pain that would be unheard of at home. But these, these injections, they hurt. They really scream. They whimper while they are waiting in the lineup for their turn. I can’t stay near where the injections are being given for too long without starting to get teary myself.
The national staff nurses (the MSF employees that live here in Malakal) give all the injections, and I marvel at their ability to do the job, day after day, and comfort each patient as they receive their injection. I am trying hard to be able to stay around, but I’m not there yet. I am trying to learn, buck up and move on, there is more for you to do than stand around worrying about how painful an injection is.
So, from knowing absolutely nothing about this disease, to being able to feel comfortable being responsible for the OPD and IPD (out and inpatient departments), has been a challenge. But I am slowly getting there. But yesterday, I learned a hard lesson. I'm learning, sometimes by absorption, and sometimes, it just hits you in the face. It is painful, and then, sorting out the best way forward is also a valuable lesson.
My colleague (The marvelous Kenyan nurse that I told you about before) thought that it was a bit strange that Tabitha’s tests kept coming back positive. We, and other NGO’s, had been treating her Kala Azar for far too long. So she sat down with Tabitha’s mom, and spent an hour with her (precious time in this land of far too many patients), and discovered the true history of her disease and her treatment. And we discovered that what we (and others) had been doing was confused by the difficult history; treated in many different places, each offering a level of care different from the previous. And then, with this history, I was able to use the amazing power of the internet to email our Kala Azar advisor in Amsterdam and ask for advice. Within a few days, I had a response, and suggestions of what to try next in this very difficult case, and was able to move forward with significantly more aggressive treatment, that made me a little nervous, but I took the advice of the expert, and moved on to…
So, the next day, on ward rounds, when we arrived at John's bed, he was no better. I felt terrible. His mom was, as usual, waiting for us. She was always the one to help all the other mothers on the ward; helping other people’s children who were vomiting, holding the pail and their foreheads, or getting a cold compress to put on the body of the 6 month old in the bed next to John with the temperature of 41 degrees. Late one night she helped me and two nurses carry the body of a young mother, across the hospital compound, to the morgue. There was only the 4 of us available, one on each corner of the stretcher, under a beautiful African starry night, to make that lonely walk.
Today, I was doing rounds with my South Sudanese colleague, a man that had been treating Kala Azar for a very long time. I outlined the symptoms that John was having, and the things I had done to treat them, and he very softly and very carefully and considerately, said ‘Do you think that these symptoms could be a side effect of the Kala Azar treatment that we are giving John?”. Oh my. Lesson learned and sleepless nights. So we changed the medicine.
I never got to actually see what happened with my two patients. I had to leave, sent elsewhere, before I knew if they lived or if they died. And so, it was with marvelous relief I heard, from the MSF staff that continued after I moved on, that Tabitha’s tests eventually came back negative and she was considered cured. And John. After much worry and intervention (so many antibiotics, a change of medicine, new other medicine, a blood transfusion and many weeks of daily meticulous care (mostly by his marvelous mother), he turned the corner, started to sit up, to eat, to smile and then to actually make jokes with the nurses.
We sent them both home, well.
But, then, the husband of the woman that I told you about before, the woman who smiled at me, over and over, every time I went to see her in the TB (tuberculosis ward, where she went after we treated her Kala Azar), her husband came up to me, and in the universal language of grief, let me know, with no words at all, that his wife, the mother of his children, had passed. Just then. He wanted to let me know. And he said thank you for all I had done. And he asked for some money, so he could make the boat trip home to tell his children. He said (through my amazing translator) he would return to get her body, and take it home. I said Malish, malish Sorry, sorry again, and again, because I don’t know enough words in his language, to express my sadness.
I am learning, slowly, with the help of my African MSF colleagues, to cope with this. They are supportive, they let me lean on their shoulder when I need to, and they show me how to move forward and continue the work despite my wish to hide away and not do this anymore. They have the experience that I do not have, despite my previous African work history, to really accept that which I cannot change, and to move on to the next patient that I can help. It is hard and exhausting work.
So, it is interesting to watch yourself adapt. To accept that this Saturday night, it is ok to celebrate a birthday, to wish someone farewell as they finish their mission, to dance and to dance some more. I think it is good for coping. It is fine, it is acceptable, it is crucial, to enjoy in the midst of this incredibly difficult work. To really accept that your best is all you can do, and head back the next day rested, restored, and maybe with a headache from a beer too many. At least (so far) I haven't started smoking as a stress reliever. Many do.
And then, suddenly, my PC (Project Coordinator, the boss of me) told me that I could go to where I wanted to go. Pagil.