doc w/ pen

a journalist becomes a doctor before your eyes

Month: July, 2016

Creating a kid-friendly space in a kid-unfriendly place

Jemella, quite the talented artist, painting her masterpiece dolphin.

Jemella, quite the talented artist, painting her incredible dolphin.

The hospital is a scary place for kids, regardless of what country you’re in. Eva, a Dutch woman who funds various programs at Naggalama Hospital, recently had a children’s playroom constructed adjacent to the pediatrics ward. Before opening it to the kids, she wanted it decorated. So one Sunday afternoon, we (Eva, Randi, Howard, Jemella, and I) all got together and painted the long, narrow room in an aquatic theme — Jemella’s idea. We each took a wall as our personal canvas, then worked together to fill in the gaps at the end. Here are photos of some of the masterpieces. Click on each image for a larger version. (I don’t have pictures of Randi’s or Eva’s work, but it’s amazing too!)

After the paint had dried, Eva gathered toys and books to fill the space. Walking by the room now, even from the outside, you can hear the excited squeals of kids playing with those toys, happy to be away from their hospital beds. Happy to be distracted, if only for a little while. It’s a good feeling to have had a little part in that.

Howard, Jemella, and Randi shaking up the paint cans before starting our works of art. The only type of paint available was oil-based paint, and there were very limited colors. So we did a lot of mixing in the plastic cups you see here. As a result, the playroom is a vibrant mix of all colors, shades, and hues.

Howard, Jemella, and Randi shaking up the paint cans before starting our works of art. The only type of paint available was oil-based paint, and there were very limited colors. So we did a lot of mixing in the plastic cups you see here. As a result, the playroom is a vibrant mix of all colors, shades, and hues.

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Being in Naggalama: “You are welcome”

It’s impossible to represent a region — much less an entire country — after only a few weeks there. But through working with the palliative care outreach team from Naggalama Hospital, I got a taste of life in and around this rural area. These are images and impressions from my time spent there.

To get to patients who live rurally, we took rutted roads for an hour or longer. "Bumpy" completely fails to describe the experience. To quote Jemella, who sat in the backseat with me: "This is what it must be like to be groceries in a bag."

To get to patients who live rurally, we took rutted roads for an hour or longer. To quote Jemella, who sat in the backseat with me: “This is what it must be like to be groceries in a bag.”

To put things in context: each weekday, we would leave from the hospital in vans and head out to patients’ homes to see people who needed palliative care (most often pain management). Some people lived in nearby towns; others on dirt roads an hour or more away.

I was immediately struck by how different life is in Naggalama compared to the places I’ve lived in the United States — Chicago, the Upper Peninsula of Michigan, Tucson, and now New York City. But United States or Uganda, people are people. So as much as I will remember the bumpy dirt roads and cramped brick houses, I will remember the gracious and kind souls who invited us into those houses with a warm smile, a light handshake, and this local greeting: “You are welcome.”

Note: Click on any photo to enlarge and start a mini slideshow.

Rural setting:

Town setting:

Getting around:

The boda-boda is a sort of motorcycle taxi. Most people don't wear helmets, and accidents are a major cause of morbidity and mortality.

The boda-boda is a sort of motorcycle taxi. Most people don’t wear helmets, and accidents are a major cause of morbidity and mortality.

Flora and fauna: Being at the equator, all kinds of things grow here — bananas, coffee, avocados, corn, passion fruit, jack fruit, mangos, and more. Many people here are subsistence farmers who sell a little produce at the local market. Having animals is a sign that you possess a little (though not necessarily much) money.

Cute kids

Thumbs-up“Mzungu.”

That essentially means “white person” in Luganda, the local language in the central region of Uganda. As we’d walk down a street, through a village, or up to someone’s house, we’d often hear little people yelping out the word, in reference to all the big white people (us) traipsing around. I don’t think it meant as an insult, though, at least not in these situations. The kids were simply curious. We certainly stuck out. And they wanted to see what all the hubbub was about.

Who were we to disappoint these little darlings? So we put on a show. We would all snap pictures of the kids with our phones, and then show the kids what they looked like on the screen — something that inevitably brought out shouts of excitement. We shook hands and traded high-fives and thumbs-up. I think Randi was their favorite because she doled out lollipops and balloons (often with our help).

Some kids were shy. But most were friendly, waving vigorously and calling out as we walked back to the van to leave. Some of my happiest moments during the day, brief but key moments that kept my spirits up, were spent with these kids. Here are pictures of those shared moments.

(Click on any photo to see an enlarged slideshow.)

Why many people in rural Uganda don’t go to the doctor

 

Bicycle.jpg

How do you decide between potentially life-saving cancer treatment (sell your bicycle) and your children’s education (keep your bicycle)? That’s precisely the decision one patient I met had to make. He kept the bicycle, pictured here hanging from the wall of his home.

 

Quick, decide: your health, or your children’s education?

No one should have to make that choice. Yet that’s exactly the choice one of the Naggalama Hospital palliative care patients had to make when he was told he had cancer and needed treatment at Mulago, the government hospital in Kampala. He said the only way he could afford this potentially life-saving cancer treatment was to sell his bicycle. But without the bicycle, his children couldn’t attend school. This father made his choice last year — his children’s education — and this year we saw that his cancer has spread.

This is a common story among patients I’ve met here. Someone is diagnosed with a serious illness. The disease has often already progressed because people here frequently don’t seek medical attention when first becoming ill (the subject of my research project). Once diagnosed, the person is usually referred for treatment at Mulago. Often, they don’t go. Or they delay. The reasons for this are complex, I’m learning.

Some people fear Mulago, and not without cause. For starters: it’s an enormous hospital, 1,500 beds, I’m told, with a census that can reach 2,500. Those extra patients sleep on the floor. (Although renovations are now underway in an attempt to fix the overcrowding, and when I visited Mulago I didn’t see any patients on the floor.) Lines are long. Drugs are often out of stock, so the patients’ attendants have to search for medications elsewhere in Kampala. There are few doctors, fewer nurses, and many mosquitoes.

People’s fears are sometimes based on misunderstandings, though. I heard one woman say that she was initially afraid to go to Mulago for a mastectomy because she had seen other women get the same treatment and die soon after. It is likely that those women died because they presented late for surgery and their cancer was too advanced — not that they died from the surgery itself. Because of such fears, people may seek treatment from local herbalists first. When that doesn’t work, they finally go to Mulago. By then, it is often too late.

Beyond the fear, many patients simply can’t afford the treatments at Mulago. One woman told me that after she was diagnosed with breast cancer, it took her family two years to gather the funds so she could have surgery and appropriate chemotherapy at Mulago. I heard about another woman who barely scraped enough money together for her chemotherapy treatment, only to be told after the treatment that her funds covered only one dose. She would need many more doses, the Mulago doctors said — something she hadn’t understood. She couldn’t afford it. So she just stopped going. Her cancer has now progressed too.

Like so many things here, I don’t know what the solution is. Medical care here is cheap compared to in the United States. So it’s easy to say “I’ll pay for this patient’s chemotherapy” or “I’ll pay for that patient’s surgery.” Obviously though, one person or one group can’t pay for everything and everyone. I know being here makes a difference in some people’s lives. The patients all say that. They are grateful beyond belief. But it’s hard to avoid a sense of frustrated futility sometimes.

Labels and culture in Uganda

 

Coke.jpg

Uganda’s version of the “Share a Coke with …” campaign. My first thought when seeing this was of Yasser Arafat, the Palestine Liberation Organization leader. But I’m guessing that’s not what Coca-Cola was going for here. Another soda bottle (I didn’t get a picture of this one, unfortunately) read: “Share a Coke with Blood.”

As a foreigner, there are certain things that stand out to you that a local person might find completely normal. Here are two Ugandan product labels that, as such a foreigner, I found quite interesting. Note that this is a personal reaction based on my own cultural upbringing, not any sort of criticism. I shudder to think what people from Uganda would make of many American product labels and advertising … 

Nice double entendre going on here with this bottle of African honey.

Necessity is the mother of medication

In the United States, we’re used to any medications or supplies being available at any time in any dose: ask and ye shall receive. In Uganda, that’s not the case. Only certain drugs are available through Naggalama Hospital. For example, morphine is the only opioid. Even medications that should be available often run out (and morphine did run out while we were there). For those medications that are actually present, the pharmacy might only carry one dose — a dose that’s certainly not appropriate for every patient. With all of these constraints, palliative care (and any care, really) becomes a challenge unfamiliar to visitors. You learn to make due, and to get creative. Here are a couple of examples of how that played out while I was there.  

Amitriptyline.jpg

Drs. Jemella Raymore and Randi Diamond halving 25 mg tablets of amitriptyline for a patient with spinal stenosis. We hope the medication (now at a more appropriate dose) will help relieve her neuropathic pain as well as her depression.

One day, we visited the home of a patient with horrible spinal stenosis. Her lower limbs were essentially paralyzed. She was unable to walk or even stand. Her upper limbs had become extremely weak too. She could no longer raise her arms above shoulder height, and grasping anything in her hands had become impossible. To help treat her neuropathic pain and her depression, the palliative care team decided to use a drug called amitriptyline. But the only dose available, 25 mg, was far too high for this situation. The round, bright pink pills were coated, so couldn’t be broken easily by hand. Thankfully, though, they were scored in the middle. So we asked for a knife. What we got looked like a small rusty machete, but it did the trick, and now she has a more appropriate dose. 

Zofran is a great drug to treat nausea after chemotherapy. But it’s expensive, and therefore not available at Naggalama. So for a woman who’d had a mastectomy, and is now undergoing chemotherapy, the team decided to try a drug called haldol. A dose of 0.5 mg or 1.0 mg is where we would start in the United States for a case like this. But the only dose available was 10 mg — enough to completely knock her out. So as we sat talking to the woman in her home, Dr. Randi Diamond broke the round, white pills into halves, and then quarters, to get a 2.5 mg dose (roughly). It’s something. And hopefully it will control her nausea and vomiting without making her too tired.

Getting patients their medications is a start, but just like in the United States, medication compliance is another issue — though perhaps for different reasons. The woman with spinal stenosis, for example, was afraid to take her morphine (and other medications) without a family member around because she gets dizzy. And no one is around on weekdays. So she’d only been treating her excruciating pain on the weekends. The palliative care outreach team from Naggalama Hospital does supply its patients with needed drugs like morphine and amitriptyline. But for many other people, the cost of medication — priced in Uganda at pennies a pill — is simply too expensive.

Spanish? In Uganda?

“Es un día de turquesa!” I belted out as Jemella and I walked down the path to the adult medicine ward at Naggalama Hospital. I was commenting on the fact that four of us had randomly worn turquoise shirts and khaki pants that day. Obviously, no one here speaks Spanish. It’s the weirdest thing. Being here in Uganda, hearing the local language (Luganda) all around me, I suddenly have the urge to speak the only foreign language I do know — Spanish.

This is what I’ve concluded about that impulse: Most of the international traveling I’ve done has been in South America. I’m fluent in Spanish, so language wasn’t an issue there. I told my taxi driver where to go, ordered pisco sours, bought fresh bread, and did pretty much everything else without a problem. Uganda is a different case entirely. I know all of four words in Luganda. With so many strange sounds flying around, I think I’m grasping at something with both foreign and familiar flavors (Spanish). While not helpful in the slightest, the urge remains. And it remains unhelpful, though entertaining.

Dr. Randi Diamond and me, out in the field doing palliative care house calls — in our matching turquoise and khaki outfits.

 

“I will not repeat”

Dr. Jemella Raymore, the ward nurse, and I must have talked with him for a half hour. He was a slight man, wearing black pants too big for his spindly legs. His shirt, camel colored with blue plaid sleeves and collar, was only buttoned halfway up. He was seated on his hospital bed, which was covered with a purple- and gold-flowered fleece blanket. He kept his hands folded and his eyes down, speaking softly, almost inaudibly, as if he weren’t even here. Or didn’t want to be. We were almost the same age, I realized as I looked at his chart. He looked so sad. He’d swallowed poison two days ago and been brought in on a motorcycle. He survived the suicide attempt, and was about to be discharged. But he was clearly still in great distress. So his doctor consulted the palliative care team. 

This man’s case isn’t technically a palliative care case. But it seems that any time feelings are implicated, the palliative care team gets called. (Under normal circumstances, this means calling the local palliative care nurse and her assistants, but it also means calling the American doctors when they’re visiting.) There’s unease around feelings, and what doctors can, or should, do about them. So Jemella and I talked to this man. We listened to his story, one I guarantee no one else at the hospital had heard: his family and his wife have been verbally abusing him. He told us that as a result of this abuse, he’d thought about suicide before, even picking up the poison, but always putting it back down again — until a few days ago. We asked him about his life. About his children, his work, what brings him joy. We encouraged him that his life matters — to his friends, and to us, even though we may be strangers. We encouraged him that finding someone to talk to about his struggles, whether a religious figure or a friend, is not a sign of weakness. It’s a sign of strength. We told him he’s a strong person for enduring so much pain. 

We also asked whether he still felt like hurting himself. At that, he finally made eye contact. The nurse translated his words as this: “I will not repeat.” 

My first birth, and a death

In palliative care, it’s called a “warning shot.” When you’re about to give someone bad news, you give them a heads up before you drop the actual bomb. One late afternoon, I got a warning shot in the operating theater here in rural Uganda when I witnessed my first Caesarean section. But like so many people, I believed in the best. So the next morning when I returned to see the mother and new baby, I did so with hope. 

I didn’t expect that my first birth, nor my first Caesarean section, would be in Uganda. I’m learning that here, the unexpected is the expected. We had simply gone to the hospital for a quick tour. We ran into one of the doctors just as he was headed to do a C-section. He was happy to let me and Jemella, who is a palliative care physician from New York, watch. As Jemella and I watched the surgery, she talked me through what was happening — she described the layers of flesh the surgeon was cutting through. She prepared me for the gush of amniotic fluid (cause for the surgeon to wear a plastic apron and white rubber galoshes). What neither of us was prepared for though was the actual birth — a premature baby, umbilical cord wrapped around his neck, skin blue blue blue. That’s all I could think when the doctor pulled the baby out through the incision in the woman’s abdomen — “I can’t believe how blue that little baby is.” I wondered to myself: “Is he even alive?” 

Not how I expected this birth to be. I expected the baby to come out pink and healthy, to wail, to be placed in his mother’s chest as she roused from her anesthesia. I expected to see that maternal glow as she saw her child for the first time and stroked his head. None of that happened.

I was standing near the foot of the operating table with a good view of the surgery, which was still in progress. The doctor was closing the uterus with sutures and sutures and more sutures. As he did so, the woman started to wake up and moan — clearly not enough anesthetic was used. At the same time, I watched with horror as across the room, the nursing assistant (I think that’s what she was) massaged the baby’s chest, suctioned out his nose and mouth, put a tube in his nose for oxygen, tried to help him breathe with a mask. It felt like forever before he made a sound, before I saw his fingers wriggling in the air.

There were just so many things wrong with the picture, to me as a medical student coming from the United States. When that baby was delivered blue, he should have been rushed to a NICU, surrounded by a team of neonatologists. His mother shouldn’t have nearly awakened from her anesthesia. But other things too, smaller ones — we were all wearing green cloth masks and cloth headscarves. Rather than gauze for soaking up blood from the surgery, they used sterilized cloth. One of the surgical assistants was actually wearing a scrub dress, her legs exposed, and open-toed plastic sandals on her feet.

Those differences, and their potential impact on patient care and safety, burned in my mind when we returned that next morning to check on the mother and her new baby. He had died in the night. His mother never even got to see him, much less hold him. She was distraught and traumatized, and for good reason. Babies aren’t supposed to die. Not ever, and especially not like that — in a way that might have been prevented had he been born somewhere else.

As I stood there with the grieving mother and her family, I had no words. I had gone into her surgery so excited for the outcome — my first baby! I imagine maybe she went into her surgery excited too, excited to meet her new child. If I felt like this, like someone had cut out my heart and wrung it dry, how must she feel? How humbling that she would allow Jemella and me in her life at this dark moment. 

And yet, as Jemella and I turned to leave, she and every family member there shook our hands and thanked us for having come to see her. For what? What had we done for her? In practical terms, nothing. Her baby boy was still dead. She was still in the postpartum ward at the hospital, recovering from her surgery and listening to the echoes of other women’s babies crying when that’s something her own baby would never get to do. 

We had listened, had held her hand, had tried to reassure her that this wasn’t her fault. Whether it helped I don’t know. But I hope so.

Qatar Airways #704

It’s been years since I’ve taken a major international trip. And even longer since flying to a hub like Doha, Qatar, where I switch planes to Entebbe, Uganda. Even before taking off from New York’s JFK airport, my experience was already an international one. Living in NYC, I’m used to distinct people wearing distinct clothing. But the crowd taking my flight is of all colors — literally. There’s the man wearing a brown-and-blue plaid suit and a black fedora, and women in flowing headscarves, gold, pink, jet black. Then lots of people like me, wearing T-shirts, jackets, and casual pants — trying to be comfortable for this 12-hour flight. Standing in line on the jetway, waiting to board, I yawned. I’d gone to bed too late and gotten up too early. “Tired?” The white-haired, lanky, black man in front of me asked. “Yes,” I said, smiling. We started talking — he’s from the Chicago area, Wheaton to be precise. The same suburb where my best friend from childhood lived so many years ago. He’s headed to Sudan to visit his parents. “I’ve never been to Uganda,” he told me when I mentioned my own destination. “But I’d like to go.” There’s been lots of rain in Africa lately, he added — cools things off. Good to know. 

Seated next to me on the flight was a brown-haired, petite nurse, on her way to the Philippines to visit her college-age daughter. She works in a plastic surgery practice in Manhattan. We talked about medicine, how it’s nurses who really take care of patients, how some wealthy people are nice and others are bit**** (just like normal people, I told her), how her daughter wants to go to medical school someday. 

Most people, though, aren’t much for conversation — they’re either tuned out or plugged in. There are more movies available on this flight than I’ve ever seen, in languages from English to Spanish to German to French to Portuguese to languages in cryptic, non-Latin characters I can’t make out. A slice of the world is up here at 30,000 feet with me.