Leprosy Outreach: April 2nd

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I met Jackson, the occupational therapist in his office. We ran around organizing our leprosy outreach program. Finally we set out in the safari jeep and wound our way up into the hills on horribly bumpy footpaths (roads). We parked in the shade of exceptionally tall banana trees. Following a narrow dirt path through the banana and coffee plantations we arrived at the our first home visit. There was a cleanly swept dirt patio between two mud and straw huts.  Colorful coffee beans laid out in the sun drying. A radio played in the garden where an old man was bent over working. Jackson called to him. As he hobbled over to the patio where we stood I could see that he had been affected by leprosy. His face was characteristic of an old lepromatous case with missing eyebrows (madarosis), long floppy earlobes, a lion’s nose (flattened bridge), and a toe emerging suspiciously from a hole in his rubber boot, suggesting that he could not feel it: an anesthetic foot.  He smiled with his whole face and eyes and even his embracing arms. He told Jackson he would go to fetch his wife who also had suffered from leprosy. 

The old man disappeared in the garden and Jackson and I waited in the shade. His wife appeared wrapped in two different patterns of African wax cloth. She had no fingers on her hands and yet she carried a hoe. When she came to where we waited she bent over and began working the soil, showing us that she could farm despite her deformity. After she had broken up the ground with the hoe she reached into a bucket of beans and scooped a small pile out with her palm, pouring these beans into her mouth. She bent over the tilled soil and spit one bean at a time into the ground. I was amazed by her innovative farming techniques. She smiled, proud of her work. The husband and wife led us to their pigsty which they had built above the ground to house a sow and her piglets. This sow had been donated by Kagando hospital and now had produced many piglets. We continued down a dirt path to another hut behind their land. 

“This is our neighbor,” the old man told Jackson in Lukonzo. He also had leprosy. I noticed immediately that this neighbor, a young and sinewy man, was missing his left leg from the knee down. He wore a prosthetic limb. I learned talking to him that he had stumbled upon a landmine which cost him his leg; this amputation was not due to leprosy. Besides thickened nerves the young man did not show clinical signs of having had leprosy. Skin lesions can fade and sensation and motor function in some cases scan be partially restored years after treatment. I examined the neighbor and asked questions about his understanding of leprosy and experience having had the disease. He told me he understood it was a bacterial infection that could be transmitted, not a curse or biblical consequence which seems to be the local understanding of leprosy. He said people in his village were educated and also understood that leprosy is a bacterial infection. 

After finishing his examination and interview I followed the husband and wife back to their hut. I met with them one at a time in their tiny hut. Both of them had contracted leprosy as children in the 1950s. They were given the available anti-leprosy treatment at the time which was apparently effective for the man but not for the woman. Years after receiving the anti-leprosy treatment the wife relapsed. By this time MDT, the current treatment for leprosy, was administered and she has not had a relapse since that time. Speaking with the husband and wife about their lives following this disease that has such a physical and emotional burden I was struck by their happiness and content. There was not a shred of self-pity in either conversation. There was dignity, pride, and fulfillment in their lives. They are farmers. They raised a family together. They interact with their neighbors and village community who accept them. 

In a rural setting, to support the life of a person affected by leprosy, education about the disease must be provided to the neighbors and members of the village community. When the village knows how the disease is caused and cured they no longer fear it and push the person affected by leprosy out. In this village education efforts destroyed the stigma of the disease, rendering it a non-issue. 

We left the quiet village and went to the home of another known person affected by leprosy (PAL). This was a much different experience. The family sat outside of their well-maintained brick home. We walked around back to the small mud shack in the backyard. Entering the dark hut from the midday sunlight my eyes took a long time to adjust. Blackness. I couldn’t see anything. Slowly shapes began to emerge: a chicken moving around on the ground, a pile of blankets against the wall, a bigger shape… and as I drew nearer I realized the larger shape was that of a person. He was propped up against the wall. As my eyes adjusted I could see his skeletal frame. I could hear soft moans and labored breaths. I could smell urine. I was staring at a starving old man. His hands and feet showed secondary deformity (leprosy) as he was missing all of his digits. His skin was dry and pulled tightly over his sharp cheekbones. He looked as though he was dying. 

Jackson appeared in the doorway. When he saw the man he dropped to his feet, examining this frail old patient. We must take him, Jackson said. The patient would need IV fluids and “PlumpyNut”, the Ugandan brand of refeeding nourishment (it is made of milk powder, crushed nuts, sugar, a multivitamin, and oil… all the food groups you need plus the phosphates, potassium, and magnesium you need to avoid refeeding syndrome). Side note on refeeding syndrome: when someone was been severely undernourished for more than 2 days, the refeeding must be done carefully because introducing sugar to the starving body leads to sudden increase in insulin secretion. Then cells can take up the sugar and the liver resumes glycogen and fat synthesis which demands phosphates. This depletes the blood of phosphates. When red blood cells are phosphate deficient and cannot make ATP, the oxygen delivery performance is compromised and organs suffer hypoxia. The other danger when treating a severely starved and dehydrated individual is heart failure. If you pump fluids into the low blood volume individual, the heart suddenly has to work much harder and might fail. 

Men from the house carried our starving and dehydrated patient out of the hut and propped him up in the jeep. I sat next to him as we drove back to the hospital. We admitted him to the male medical ward and his refeeding was carefully initiated. 

I am still appalled by the utter neglect in which we found this man. The family had tucked him out of sight, denying him food, water, sunlight, fresh air, bathing, fresh clothes, a toilet– everything that we use to sustain ourselves and experience human dignity. Was this old grandfather neglected in such a way because he had had leprosy? Or was it was it his feeble age (of 60!) that led the family to leave him out there. Either way it is shocking to me that a family would treat their own relative with such indifference for life. 

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Gun Shot: March 27th

Tears rolled down her cheeks as family members closed in around the bed. Her left thigh was elevated and heavily bandaged. “Gun shot wound” the nurse said. “When did this happen,” I asked? The nurse explained that the patient comes from the border of Congo. Last night robbers broke into her house, killed her husband, and shot her in the thigh. As I stood there a file of police and army men appeared at the bed. They were all different sizes: some were very tall and thin, some small and thin, some sturdy, plump, one who looked to be fifteen years old, all dressed in uniforms and carrying guns. They stood in front of her bed, passed papers around, spoke in rapid Lukonzo, and walked out of the ward in a long file. Meanwhile our patient was upset and in pain. Later I would hold her leg up in the operation theater as her massive wound was debrided. The surgeon had to cut out necrotic fat and muscle tissue from the gaping flap in her thigh where the bullet had shredded tissue and infection had festered. The femur was spared from the bullet and thus far from infection; however, there is a risk of bone involvement (osteomyelitis).  I cannot imagine the intensity of this patient’s experience: her husband was shot dead and she has a blindingly painful gunshot wound. 

Angry Hippopotamus: wednesday

 

I was just about to leave the operation theater when  a patient was rushed in on a stretcher. He was moaning, sweating, and dripping blood. His arm was wrapped in soiled shirts and scarves, lying limply across his chest. “Hippo bite” the nurse announced. This was the second hippo bite patient I saw in just over one week. The nurses expertly inserted a cannula (they have magic fingers) and we waited as the patient received 500 mL normal saline pre op. He had ketamine for pain management which made his eyes go whacky. Doctor Uli examined his right arm. The hippo had taken a pretty nasty chomp. The humerus was completely fractured (later I would stick my fingers in the space between the two halves of his humerus and appreciate the spongy feeling of cancellous bone compared to the smooth hard cortex). Dark red veinous blood gushed out of the wound. I could see a jagged cross section through his biceps and underlying muscles and connective tissues down to the bone. Moving his injured arm around with my left arm I could hold my right fingers over his fractured humerus until it was aligned. Uli expertly brought both ends of the humerus together and began drilling while I held the arm in place. The drill is a standard carpentry drill with various bits. We used long metal screws to drill into the cancellous tissue. Uli would detach the screws from the bit and leave them poking out of the patient’s arm about 6 inches above the flesh. Then we took clamps and a horizontal beam to stabilize the fracture. I felt inside the wound and noted that the two ends were articulating as precisely as possible considering the fact that some bone mass had be lost in fragments that we removed from the site. We tightened the bolts like you would tighten bolts on any machine. So with a bit of mechanics and carpentry the external fixation was in place for optimal bone healing. 

I left the theater and met our new guests from England. They are a group of final year medical students just like all the others who currently share the clay house. It is loads of fun having so many young people excited to learn about medicine around. I just want to make sure that I spend enough time with the Ugandans as well. They  live outside the hospital compound so it is more difficult to make arrangements. I went on a short run to the market and back. Then we all ate dinner of irish potatoes, beans, cabbage, rice, pineapple together outside because the electricity wasn’t working. A surgeon from Mercy Ships, an NGO providing women’s health services in underserved parts of Africa came for a visit. She is fantastic. She has a family but they still manage to do all this medical traveling. They pile the kids into a boat and go to places like Guinea where she, mom surgeon, operates on women with fistulas or prolapses. 

Ruwenzori Foothills: Sunday March 22nd

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During the ebola scare when I was not allowed in the hospital I set off on my own up a mountain behind the hospital campus.  I passed a few trading centers before I found myself at the house of a young girl, Lydia, whom I had met previously.  Her brothers and sisters ushered me into their house where their mother had prepared a lunch of cassava, beans, and sweet potato mash on a huge plate to be shared amongst all eight of them. They invited me to eat and found a fork somewhere in the house as they themselves took food with their hands. I felt honored to eat with them. I felt silly as the only one with a fork but I  also appreciated the gesture. Lydia appeared in the doorway and I asked if she would like to join me on my hike to the very top of the mountain. She said yes and her little sister eagerly joined as well. 

The three of us set off through coffee, sugarcane, cacao, cassava, and banana plantations and fields to the little goat path that pretty much went up the mountain vertically. I was exhausted and complaining of blisters after an hour. I took the hiking boots I had borrowed from the Belgian nurse off and hiked barefoot. As we hiked higher and higher we could see the patchwork quilted farmland spread out all the way to Lake Edward. Then in the far distance another chain of mountains. At the very top of the Ruwenzori foothill mountain we could see the real Rwenzoris soaring into the clouds. It was chilly up there. We sat in the shade and shared sandwiches I had packed from the hospital. These small kids whose homes were way up in the peaks stared at us curiously. I gave them bits of a granola bar which was a big hit. The kids went wild, summersaulting and giggling and skipping about. After our sandwiches we descended. I was so thirsty and the temptation to drink the untreated well water was very hard especially seeing Lydia and her little sister gulp down handfuls of cold mountain water. But I was not keen on getting parasites or cholera or any other critter that my stomach probably cannot handle (well at this point maybe it could…).

Ebola Scare: Saturday March 21st

What is going on? Hushed voices of doctors. Worry in their voices. When she finally hung up the doctor turned to me and said: “we may have an ebola case on the male medical ward and my husband has been his doctor”. The patient had apparently arrived with flu-like symptoms. It was not until a cannula was inserted that the staff realized the patient was bleeding from his gums, the cannula site, and all cuts/orifices over his body.  He had a fever and deteriorating composure. He bled out as the staff tried to care for him and mobilize the ebola response protocol. Ebola, causing hypotension (low blood pressure), fever, and disseminated intravascular coagulation (DIC: inappropriate use of clotting proteins and thus hemorrhaging) leads to multiple organ disfunction and is fatal and untreatable.  

Quarantine of all staff and patients who had been in contact with the patient was arranged. The hospital gates were locked so that no students or other staff or visitors could enter. Meanwhile a blood sample from the suspected ebola case was taken in a taxi to the cdc in Kampala (day’s drive) where a test would determine whether this patient had died from sepsis and a DIC or ebola. The problem was that the test takes 24 hours. So doctors and nurses and patients and people waited in quarantine with bated breath until the result came in Sunday night: negative! No ebola! We were all safe.

Leprosy Outreach

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I went with Jackson, the occupational therapist on an outreach mission for treatment and prevention of disability in children. The kinds of disability that we looked for were caused by: leprosy, cerebral palsy, paraplegia, epilepsy, polio, multiple sclerosis, rickets, trisomies or other chromosomal abnormalities. We inspected five schools to see if they had accessibility for kids with disabilities (e.g. ramps). We found that classes were overcrowded, latrines overflowing (feces on the floor in some schools), no sinks or water where kids (or teachers) could wash hands after the latrine (think cholera and typhoid!), unclean kitchens and unsafe cooking arrangements, and no ramps. The schools all look the same: soviet cinderblock rectangles. They were all funded rather carelessly in my opinion by USAID among other big groups. It seems as though major organizations like USAID like to dump money into projects but do not follow through or empower the people to be self-sustaining after the aid. For example, one of the schools had a lovely rain barrel to collect water from all of the roofs. The problem was that the organization didn’t teach the school officials how to fix the faucet or provide any spare parts (which cannot be locally found). So of course the faucet broke and now the whole barrel is useless because the water that collects can just drain out of the barrel freely. 

In each of the classes Jackson would give a small presentation on tolerance. He taught the students about leprosy so that they would be able to identify early signs. We had meetings in small classrooms with the headmaster, school teachers, and members of the school board to ask about the students who might have disabilities and need extra support. It was an honor being a part of these special meetings, listening to health workers and educators brainstorm about the wellbeing of students. 

Fistula surgical camp

Women living in underserved, rural communities out here fail to receive adequate maternity care and gynecological care. Traumatic events such as obstructed labor or violent rape can cause fistulas or prolapse. These women are also at risk of cervical cancer in the absence of screening, complications or even death by ectopic pregnancies, unchecked STIs, urinary tract/kidney infections, yeast infections, ovarian cysts, among other women’s health issues. A team of fistula and prolapse surgeons arrived at the hospital to sponsor a 10-day surgical camp for women. These surgeons made announcements on the radio calling all women with vesicovaginal fistulas, prolapse, or the need for hysterectomy. Vesicovaginal fistula is an abnormal tract connecting the bladder to the vaginal wall allowing for continuous leakage of urine through the vagina.  This happens when the vesicovaginal wall has been weakened by loss of blood supply caused by pressure from the baby in prolonged or obstructed labor. Prolapse occurs in women when the uterus or bladder or other organs fall out of the vagina because the ligaments and muscles holding those organs in place have been compromised in some way. A hysterectomy (removal of the uterus) can solve the problem but the surgeons can also perform reconstructive pelvic surgery. I observed anterior repairs (for fistulas in the anterior wall of the vagina), several hysterectomies, and a few pelvic reconstructions after prolapse. You basically have to reinforce the vagina in a prolapse repair by suturing the anterior and posterior walls to ligaments in the pelvis. 

 

This service for these women was free of cost. I was amazed by how huge of a contribution these surgeons could make in the women’s lives. Imagine being incontinent— urine flowing out of you without control at anytime. How humiliating and debilitating! Imagine prolapse: having your own organs hanging uncomfortably out of you. These repairs not only fix up bodies; they fix lives. They rebuild confidence, repair marriages, families, communities. I would love to have the skills and knowledge to provide such an important and unfortunately unpopular service someday.