James Yuan visits with patients in the diabetes ward at Soroti Hospital.
September 20th, 2014
James Yuan: I just returned from a 5-week trip to Soroti, Uganda, where I had the privilege of working with Dr. Etolu and the staff of Soroti Regional and Referral Hospital. During my time there, I was able to help track the diabetic patients who visit the weekly diabetes clinic, and compile data regarding their social demographics and clinical characteristics—this included BMI, smoking history, education level, family history of diabetes, and more. Additionally, I was able to shadow the interns during ward rounds, help educate diabetic patients on proper management of the disease, and assisted staff whenever possible.
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I was most amazed by how the hospital and staff were able to run with such limited resources. What I mean by this is that several of the tests and exams we take for granted here in the US—such as an HbA1c machine, an ECHO machine, specialists (the hospital has an eye and ear clinic but no ENT doctor, only an audiologist), proper cancer treatment—all were too expensive for the hospital to have. Most of the aforementioned services had to be performed in the capital city of Kampala, 4 hours away by bus which costs 18,000 Ugandan shillings one-way (about $7 US). Just prior to my arrival, the entire hospital had run out of glucose strips, and luckily I had brought 1500 with me, along with 4 glucometers, which they desperately needed and were so thankful for. Despite these shortcomings, as we might call them in the US, the doctors and interns still provided quality care for the patients, no matter what they came into the hospital complaining of. They seemed catered toward their specific patient population and diseases unique to that group which we don’t see often here. For example, Soroti had adequate treatment for malaria, TB, and other infectious diseases which are very common there.
Sadly though, I noticed a significant lack of education on the patients’ part, in regards to their health problems. Although Dr. Etolu made it a point to teach each of his patients about their condition, modes of treatment, and possible outcomes, it seemed that many of the hospital staff did not place much emphasis on this. While I tried to help where I could, bringing along proper foot care brochures for the diabetic patients and even helping lead a training for health care workers about NCDs (non-communicable diseases), I felt that many of the issues we were seeing could be prevented with proper patient education. Taking a public health approach and enabling them to take ownership of their body and health could reduce the incidence of diabetes and associated complications (and other diseases prevalent in the area). However, by the time I left, the hospital was beginning to emphasize more the benefits of patient education and reducing the burden of disease by empowering patients. Hopefully with this step in the right direction, and a new partnership with the Global Diabetes Institute, Soroti Hospital can continue to improve and provide quality care for the people of Uganda.
A Uganda physician examining a 60-year-old Ugandan woman who will get an artificial leg custom-made by our partner institution in India
Thursday, October 21, 2010
Dr. Meredith Hawkins: Diabetes Ward Rounds provides a vivid reminder of why we are working in Uganda...or perhaps more broadly, why I went to medical school. Eager residents crowd around a patient's bedside to glean wisdom from Dr. Fred Nakwagala, a talented Ugandan endocrinologist who spent time at Einstein last year.
Over the past five years, I've seen a definite improvement in availability of laboratory tests and medications. Nonetheless, a constant mindfulness of scarce resources makes us rely more on symptoms and physical examination...we work together like detectives, combing over assorted clues to solve cases. With infectious diseases rampant on the Diabetes Ward, I probe the foggy recesses of my brain to recall which brain infections are common in HIV/AIDS and which physical signs are characteristic of endocarditis (infection of the heart's inner lining).
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The first patient is an emaciated elderly woman who has been losing weight since being diagnosed with diabetes. Her daughter proudly tells us that she has been "withholding food" after hearing in a radio broadcast that patients with diabetes need to lose weight! Fred soberly instructs the residents that patients with "thin diabetes" can be harmed rather than helped by restricting food. A subsequent patient illustrates the perils of treating diabetes when meals are unpredictable...an older woman with finely chiseled features is babbling incoherently, having been admitted a few hours earlier in a coma due to hypoglycemia (low blood sugar). This promotes discussion about how combining medications that decrease appetite (metformin), stimulate insulin secretion (glibenclamide) and suppress the symptoms of low blood sugar (propranolol) proved to be a nearly fatal combination in an elderly person.
Today's lecture on diabetes management went 35 minutes beyond the allotted time, mainly due to lively and practical comments from our Ugandan colleagues...innovative ways to store insulin without refrigeration, traditional dance as a form of exercise, and cost-effective approaches to diabetes treatment...Though given permission to leave at the scheduled ending time, most of the audience chose to stay. As the attendees mob us with questions afterwards, we are deeply moved by their motivation to learn and to provide the best care possible...
Dr. Elizabeth Walker, back left, and Dr. Jason Baker, back right, attend rounds on diabetic patients
Thursday, October 21, 2010
Dr. Elizabeth A. Walker: Let me fill you in on my main goal in coming with the team to Uganda this trip—further development of a Ugandan diabetes self-management poster focused on hypoglycemia (symptoms, prevention and treatment). This priority topic was chosen by the 19 Ugandan doctors and nurses who completed our structured interview.
Hypoglycemia in Uganda is especially deadly, as most people do not have access to blood glucose monitoring at home, many people are taking insulin injections, and food is often in short supply—so many risk factors for low blood sugars! Since people living with diabetes in Uganda have almost no educational materials for self-care, we focused on developing a teaching poster.
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The creative expertise of the Graphic Arts Center at Einstein produced a first draft of the poster that we then carried to Uganda. Logan and I have completed detailed interviews of three key Ugandan diabetes providers, with several more to come. This is thrilling for me as they patiently give us feedback about word choices, drawings of faces, foods, etc—all things related to prevention and treatment of a low blood sugar. Here’s an example: we had a drawing of an apple in a segment about healthy snacks. Each interviewee said something like “Oh, that’s very nice, but only the rich can afford them.” (Lose the apple!)
This is truly a translation of the concepts into something that Ugandans will understand, and hopefully utilize, to decrease their morbidity and mortality from hypoglycemia. After several more interviews, we’ll move on to draft #2 back in the States and continue the feedback over the internet.
A young man with a leg amputation walks the corridors of Mulago Hospital
Saturday, October 23, 2010
Dr. Meredith Hawkins: When I asked whether ward rounds happened on Saturdays, the ever-eager students and residents said that they would happen if I wanted them to!
When I arrived this morning, they announced with excitement that they had a case right out of one of my lectures! They led me to the bedside of a patient with classic signs of acromegaly (excess growth hormone presenting in an adult): her hands, feet, jaw, and even her tongue were enlarged, and the loss of peripheral vision in both eyes suggested a large pituitary tumor pressing on the crossing point of the optic nerve. Together, we devised a plan to follow the guidelines from the lecture, despite her lack of funds... a special fund for "teaching cases" would cover the hormone and imaging tests, and pituitary surgery and expensive medication (octreotide) would be arranged with a visiting neurosurgery team and a compassionate drug program, respectively... Where there is a will, there truly is a way...
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This morning, we received good news from India regarding two Ugandan patients with recent amputations. On previous ward rounds, I learned that the cost of artificial legs in Uganda, about $400, is prohibitive for most patients... So, our amputee patients were anticipating hobbling on crutches or being immobilized for the rest of their lives.
I remembered touring our partner institution in India, CMC Vellore, where artificial limbs ingeniously crafted from simple materials were provided to patients for a few dollars. My plea for help was answered immediately by our Indian colleague Nihal Thomas, who offered to provide a few custom-made limbs for our Ugandan diabetes patients, as well as to train a Ugandan technician in their methods. This epitomizes why we developed a collaboration with CMC Vellore... instead of introducing North American medicine into the developing world, we have much to learn from these colleagues about providing outstanding care in a resource-limited setting.
Isaac, a fifteen-year-old Ugandan orphan with type 1 diabetes who cannot afford insulin
Sunday, October 24, 2010
Dr. Meredith Hawkins: The most poignant story we have encountered is that of Isaac, a fifteen-year-old orphan (featured in Einstein's Annual Report) who would sell his insulin to buy food for his grandmother. Since children taking insulin need regular meals and medical attention to survive, we arranged to send Isaac to a boarding school for children with medical needs. Isaac's erratic blood sugars proved too complex for the school, necessitating many trips to the main hospital (Mulago), in Kampala. We recently found Isaac a school closer to the hospital, run by a caring woman named "Momma Rubinah."
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Josephine Ejang, diabetes nurse at Mulago and a good friend to Isaac, visited the school to make arrangements. We were excited that Parents' Day would coincide with our visit! However, our plans hit a roadblock when Josephine lost contact with Isaac. During school break, his grandmother was sent to hospital, leaving him alone.
Unable to reach Isaac by phone for two weeks, we decided to go find him. After Thursday's lectures, Josephine and I drove to the village named in his records. We arrived at the 'trading station' — a small clearing with a meager vegetable stall, surrounded by brick or mud-walled huts. Carrying our brochure with Isaac's photo, we headed on foot down a muddy path, trying not to slip on garbage and pig dirt. We encountered about a hundred people — bashfully smiling adults, excited children squealing "Hi Mzungu [white person]" — but no one recognized Isaac.
Back on the main road, we visited "Voice of Gayaza [region]", a loudspeaker on a short radio tower. For a dollar each, two booming announcements requested anyone with knowledge of Isaac to contact us. No one did. We returned to Kampala, rather discouraged.
But luck was with us, as Josephine learned of a second village with a nearly identical name, located five kilometers further down the road! We headed there this afternoon. The first person we met on the outskirts of this village smiled and pointed down the road when he saw Isaac's photo. A couple of hundred yards further, we found a mud-walled house surrounded by children... and standing in the doorway was Isaac! A kind relative had taken him in, but food was scarce.
Concerned about low blood sugars, Isaac had not taken insulin for a week — so we brought him to Mulago to stabilize his blood sugars before taking him back to school. Isaac's arrival on the diabetes ward causes some excitement. He is very familiar to the residents and nurses, who gather around to give him medical attention. Isaac's story is sufficiently heart-rending that these overburdened health professionals go the extra mile...
Certificates awarded upon completion of the first Ugandan Endocrinology Symposium at Mulago Hospital
Monday, October 25, 2010
Dr. Jason Baker: Our last day in Uganda! Waking up with mosquito netting again somehow wrapped around my head (didn’t know I was so restless at night!) Immediately going to kitchen for a cup of good Ugandan java, the flavor is out of this world! Off to a power-round of good-byes at the hospital, and follow-up on a few patients before leaving for a very bumpy, hot and dusty two-hour drive to the airport. Meredith and I now head to Cairo for a Global Diabetes Alliance meeting, plane to stop in Nairobi and Khartoum, and I’m looking forward to seeing Africa from the plane’s window!
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Part of me wants to fly home instead, missing loved ones and time to process all of the experiences. Experiences that need to be processed, experiences that are simultaneously draining and energizing (seemingly opposite emotions, I know, but this place is too rich not to ride the full spectrum).
Yesterday was particularly hard for me in that I met with a type 1 diabetic with whom I had gotten to know well the past few years. She was diagnosed at age three, and is now 29. After her mother died from HIV, this woman’s care was sporadic and inadequate in large part due to a lack of meds and diabetes supplies. In the last few years, she has had access to more treatments, and has become an amazing peer-educator. She has had numerous diabetes-related complications and is currently on hemodialysis awaiting a kidney transplant (would be done in India most likely).
The sad reality is that the transplant will not likely happen, in part because of immediate expense but even more so that her follow-up and treatment in Uganda would be very limited. No meds, no post-transplant treatment center, no to little chance at success. She has been canvassing families, friends, and organizations for donations toward the operation. I sat with her for over two hours, discussing her treatment, discussing the reality of her situation. Astonishingly, she regarded me with peaceful eyes, eyes that saw the reality of the situation without anger or sadness. I said good-bye, wondering if I would ever see her again. I watched her walk away with a knot in my heart. Again, motivation to help make changes here.
A nurse checks a blood glucometer reading
Tuesday, October 26, 2010
Dr. Elizabeth A. Walker: Endocrine ward rounds these past two days include discussing Isaac, the teen with type 1 diabetes who has no means of support — his family is gone. The students and residents try to sort through the difficult social and physical history; they all show a compassion for his overwhelming situation and a motivation to help him, just as we do.
“If I look at the mass I will never act. If I look at the one, I will.” (From a statement by Mother Theresa of Calcutta)
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The quote above…I think this quote is at the heart of what inspires us: He’s just a boy.
Isaac is hospitalized to stabilize his high blood sugar and figure out the source of his cough and weakness. He has a bed at the end of the ward hallway — a little corner to himself, except for other patients’ family members sitting on the floor. Problems with his care include not yet getting important tests done, including a sputum sample and a Chest X-ray. Why are his blood sugars high again? Why is he anemic? (To do many of these tests, patients must first figure out payment. Nurse Josephine is reluctant to use our funds, since simple tests should be free for disadvantaged patients. Meanwhile, the tests need to somehow get done...)
Food availability in the hospital is an issue as well; patients need money to purchase food other than the one meal a day provided in the hospital. In Isaac’s case, the nurses always collected money to feed him during past stays, and this time our team is eager to step up to the plate. His first night in hospital, I tried to be helpful by bringing him my available American food from our guest house. While he did munch on my Luna bars (9 grams of protein), he rejected my vacuum-packed tuna and salmon. He’d definitely prefer the comfort of Ugandan foods! Tomorrow marks the final day here for Logan and me, and it’s hard to discern how to help. For now, we’re trying to do as much as we can for Isaac and the kind staff caring for him… trusting that, in the process, we will learn more about sustaining the precarious lives of children with diabetes in Uganda.
UPDATE: We are deeply saddened to report that, since the writing of these posts, Isaac has passed away.