I had the great privilege of returning to Uganda for the fourth time with visits to Kampala, Jinja and the wild north - Kitgum. This trip was special for many reasons - first, I was going with "new eyes" after my tropical medicine course last winter. I was excited to see if I would feel more capable seeing the illnesses and infections common here. Secondly, it was a blessing to travel with my sister Lynnette and her daughter Hannah. They came north from Australia and neither had been to Africa - so it was fun to introduce them to this wonderful place.
Our first stop was in Jinja - the "source of the Nile" as it leaves Lake Victoria. I wanted to return there to visit with good friends Tamara and Jeremy Boone, and Amazima Ministries (of Kisses from Katie - if you know of that book). Jeremy and Tamara are missionaries who work in the poorest slum I've ever seen with the Karamojong tribe. They focus on sustainable development, community health and micro-enterprise. I wanted to learn more about the situation there and see what options the people there had for health care.
There are 5,000 people in the area - previously it was an "IDP" camp for internally displaced people. But unfortunately, they were never re-settled back to their lands. Lynnette and Hannah saw a lot of similarities with the Australian aboriginal people, although the conditions in this slum were markedly worse. The problems of hopelessness - alcoholism, unemployment, poor health status, inadequate educational options are all present and then magnified by a very high AIDS rate. The land they are confined to does not have any electricity, latrines, trash removal - and only a few water taps for all of them to use. There is one little government clinic - staffed only by a nurse for a few days a week. (often without needed medications).
This is Lynnette with a little one who looks a lot healthier than most of the kids we saw.
Also a couple of pictures from our "tour" around the village of Masese that day. We walked with a social worker from Amazima, and Jeremy Boone who helps with a community health group made up of a group of local Karamojong.
Hannah trying to film a bit of video... kids going up to the school (many are not enrolled due to lack of money, but can get food once a day thanks to Amazima.) Very young kids carrying babies - they are responsible for them all day, carrying them on their back.
I was asked to see a woman in a mud hut who was "sick". She was widow who had 7 kids - and she wasn't older than 30. She was HIV positive - but had not been started on HIV meds yet. Her med hut was about 8 feet wide and 12 feet long (no exaggeration) and Her 7 children lived in there with her. She was exhausted and looked short of breath – working harder than she should to breathe. She did not have a fever and her lungs were clear – but I was worried she had TB or another infection due to her immunosuppressed state. Without the proper tests and correct diagnosis, I could not help her. We spoke with a social worker that assists the Boone’s in their work and she arranged transport for her to the government clinic. I wondered what would happen to her kids if she was hospitalized. As we toured around some women showed us a homemade still that they used to make liquor to sell, one of the only businesses that was able to make a go of it in that difficult place – incredibly tragic. It was dangerous, hot work and several of the women had their children and babies with them around the vats and the fires. Most of the men I saw were drinking or gambling at cards or both. It would be hard to keep coming back here, trying to change attitudes, nurture hope.
Starting a clinic here would need cooperation with the
government as the Karamajong do not own the land (another barrier to developing
a sanitation system, improving houses etc.)
We were asked to see the “chief’s” mother, who had not been eating much
due to abdominal pain for weeks. They
had taken her to the hospital for an ultrasound – which I looked at and the
simple reading said “stomach tumor”.
They had not told her it was likely cancer – because they didn’t want
her to lose hope. Well, some things are
not any different from the U.S. ! The
poor older woman was in a lot of pain, but of course she didn’t have any
medication for the pain because they didn’t want her to know her diagnosis. We were able to refer the case to the local
hospice – they visited her the next day and worked with the family to allow
morphine (and hopefully a discussion of her likely stomach cancer.) I was impressed with Jinja Hospice – and they
are looking for volunteer physicians – hmmmm.
Here is a link to a video that they have on their website about their
work if you are interested – it is fairly graphic about the people they are
treating, but also poignant and real. jinja hospice video
We also visited Ekisa – an amazing place for disabled kids
who have significant medical or behavioral needs. There were kids with autism, seizures, AIDS, hydrocephalus, spina bifida, cancer, etc. We were humbled by the great staff (international volunteers along with local caregivers.) I don’t think I could have done one shift
there, I’m not made of the right stuff.
It was filled with love for “the least of these” and I still tear up
when I think of what it takes to do that work.
We traveled north toward Kitgum to connect with my friend
Dr. Andrew Wright from Australia who has been trying to assist with local
healthcare in the northern region for the past 13 years (on frequent visits). I worked with him the last time I was in
Kitgum in 2011. Andrew and his wife Anne, and another couple
would be in Kitgum for 3 weeks working with a clinic that he is mentoring and
supporting with local staff.
My friend Francis – a great driver who I met through IJM – agreed to take us up by car. Bus travel has presented challenges in the past so we thought we would try a car this time. Here is a photo of a classic vehicle we saw on the road trip.
Well, “best
laid plans” and all - we did fine for
about 8 hours and then when were about 45 minutes away from Kitgum we were
halted by a truck mired in a mud hole and it blocked the road completely.
We waited for awhile – rooting for the guys who were trying
to dig it out (while other vehicles tried to go around by driving into the
fields and getting stuck- at one point 4 vehicles including one from the UN- were stuck in mud trying to bypass the truck). It was pretty
comical actually – until a huge storm came in with massive rain and
lightning.
Now were are stuck behind the
truck and behind us a huge line of cars blocked us from going backwards. It was
a conundrum. We called ahead to Kitgum
and it was decided to send a vehicle toward us to shuttle us in – and Francis
would just turn around when he was able, and head back to Kampala at night (not
ideal). Because of the rain, it took the
guy 2 hours to reach us – all the while the water is rising along the side of
the road toward the car as we are hemmed in on all sides. When we get out of the car in the downpour to
walk around the truck and up a hill toward our “rescue car”- we realized that
not only was it pitch black except for lightning, but the road beyond the
truck had washed out and was now a small river.
No choice but to forge ahead carrying our bags as high as we could
manage and wading in. Of course I had
gotten Hannah and Lynnette into this, so I went first, sinking to mid thighs in
mud and rushing water. I pondered
whether poisonous snakes would be in the water, then dismissed it because I
rationalized that they don’t like rushing water. (or at least I hoped that was true.) We got to the car eventually, covered with
mud. I know you WISH there were pictures of this moment, but alas, we were not in the mood :)
Then in a classic “TIA – This is Africa” moment, the rescue
car became stuck in the mud. The driver
tried to engage the 4WD, pushing all the buttons as fast as he could. I am wincing, and trying to bite my tongue as
the grinding sound gets worse, and he revs the engine above 9000 rpms (Oh that
is really going to help)… and you guessed
it, we are stuck about 50 yards farther down the road with a broken
transmission.
Still in a massive storm – now 8 pm. No food since a piece of bread with jam at 11
am , and only a little water left. But
that’s ok because we haven’t seen a bathroom since then either – so a little
dehydration is helpful. Plus, if we got
thirsty we could just stand outside again with our mouths open. The driver calls ahead to Kitgum and we hear
lots of Luganda – not understanding anything until he says in English…
“No! We are in crisis mode” then back into
Luganda (the local language). The three
of us don’t know whether to get scared or to start laughing. We laughed a bit and kept sending up prayers
for a new rescuer.
A bit after 11 a landcruiser came up, slogging through the
mud and tried to pull us out. (I knew
that was going to be a tall order in that rain, but give them credit, they
tried!). After a while, they gave up and
left the car there as we all piled into the land cruiser for a very slow, white
knuckle ride – finally arriving in Kitgum at 1:30 am. Nice entrance for us – really subtle! To add a funny footnote, the landcruiser
drove the whole way in low gear (with lots of grinding) because they couldn’t
get it into high gear. I was almost
convinced we were going to completely ruin the third successive vehicle on this journey.
Our friend and first driver Francis called the next morning… he lost
his suspension and his front bumper during the night as cars had to go through
washed out roads/rivers and push each other out with their cars. Of course I needed to pay for all the various
car repairs – pricey journey. This place
is trying to tell me something - you think?
So now back to Kitgum – we were supposed to stay at a guest
house owned by the Catholic church since we were volunteering at their
hospital. Earlier that day, Dr. Andrew
had arrived and found that the Italian priest did not want to lend the house to
us (reason unknown) so he and his wife Ann, and their friends Malcolm and
Shirley, had scrambled around to find an empty house for rent. Foam mattresses, linens, kitchen supplies,
mosquito nets were bought and borrowed.
So there was a place to stay when we arrived like tired, filthy
travelers. I wish I would have taken a
pic of our luggage – YUK! (as a
footnote, even though there were bathrooms and a kitchen, the house didn’t have
running water much of the time – and the electricity was out in the city most
days as well – but at least we had a roof over our head!)
One tiny house story - The house had a brick wall and a gate, and came with a "guard/gatekeeper" whose name was John. One night we heard a commotion between John and some men who apparently were trying to get over the wall - knowing visitors were staying. John woke us up with his yelling "emergency! emergency!" and I think the fact that we turned all the lights on and called the police scared them away. However, John went out the next day and borrowed a bow and arrow to defend us. Here is the fierce guard posing for a photo the next day for me. As somewhat comical as this looks - older man with handmade bow and arrow- we heard that people are more afraid of the metal tipped arrows than a bullet... really? But no one tried to break in again.
Over the next 8 days we volunteered at St. Joseph Hospital –
a 200 bed facility that has been run/funded by an NGO from Italy and the
Catholic Church.
Here is the road sign we saw while riding on the back of motorcycles (boda-bodas) to work ... note that veering left takes one to South Sudan - we kept straight ahead.
I had visited there on
my last visit and I am sorry to report that it has deteriorated. The staff is not well organized, there are
not enough people, medications and supplies. We did bring medical supplies of course and tried to help with teaching rounds and hands on care. Here are a few vignettes.
Lynnette and Hannah volunteered in the maternity ward –
helping to care for new babies (see this very tiny one that Lynnette helped
with).
They shared in a delivery with a midwife and were dumbfounded when the new mother was expected to bring her own linens to the hospital to lie
on while she delivered – and a rubber sheet and razor blade to cut the
umbilical cord. In addition, the mom has
to get up from the bed in the first hour and go outside to wash her sheets and
hang them up to dry while someone else nearby tends the new baby. Here is the mom a few hours after the delivery - I think she shows incredible dignity - her husband is working in the Sudan, this is her second child and she is basically ready to leave after the delivery.
Here are some pics I took outside the maternity ward – a one
month old twin getting a bath from his grandma. The mother is right behind against the wall - see below...
Tough place, northern Uganda.
I spent my time with the young doctors and clinical officers
in the medical ward and the HIV clinic.
There is really too much to say (and I know you already think I am
saying a lot). Briefly, the summary is
that the staff has basic training using algorithms for fever, cough, etc – but
they have a hard time with any critical thinking skills, because they haven’t
been trained, and they have so few resources.
An example is a man
referred to the hospital over the weekend with a month of cough and new night
sweats. He had gone to the pharmacy and
gotten 3 consecutive cycles of antibiotics but they had not helped him. (People can just buy medications over the
counter) He denied fever or weight loss.
The clinical officer was going to give him chloramphenicol (round 4 of
antibiotics). I mentioned that it might
be wise to check sputums for TB, a CXR and
an HIV test. He said that since
it was the weekend, they couldn’t get those tests, but he could tell the man to
come back next week. Clearly this is
not ideal… he could be unable to return, or mis-directed when he came back – if
he was sick with TB, then he would be infecting more people in the mean
time. Classic frustrating problem.
In HIV clinic, I saw a 13 year old boy who had failed both
regimens for AIDS (he was infected at birth).
He was incredibly malnourished and weak – and just looked like he
couldn’t go on anymore… I was impressed
by the clinic doctor, he wanted to make some calls to the government department
of health, “could they offer any other medications for the HIV?” I was glad he was trying, but I think it was
a long shot. I would suspect that this
young man was not going to make it until Christmas.
So much HIV in northern Uganda, it seemed like everyone was
infected.
Along with the "get tested" "know your status" HIV awareness posters around the clinic and hospital, I saw this one.
However, it struck me that the sign depicts kids that don't look at all like the kids in Kitgum - nice clothes and shoes getting into a car. And I wondered what people would think of the poster - pretty scary title! I don't think it would fly here in the US... try explaining that to your 2nd grader.
When we started working at the hospital, I was horrified to
find that they had not had any morphine or other pain medication other than
Tylenol (and a little Toradol – a non-steroidal medication) in the past 8
months. They had patients with
fractures, burns, surgeries, cancer – NO strong pain medication. In those first couple days, I thought I would
scream several times a day because the suffering was so needless. Toward the end of our visit, some morphine
was delivered, so I was able to do a teaching conference with the medical
officers and staff on practical pain management and palliative care. They seemed to appreciate the teaching and
promised to try to keep Morphine in stock… they are still years away from a
hospice program, so there is a long way to go.
I also visited an HIV program sponsored by Blood:Water
Mission and Food for the Hungry. They
follow about 800 patients and focus intensely on pregnant women so that they
can be on medication that will prevent transmission to their babies. The program uses community health workers to
go visit the women in their homes and make sure they are taking their
medications – and so far this year the program has had amazing success – None
of the 40 babies born have HIV. I was
impressed! The costs are borne by the US
charity, and I am sure it is expensive to fund the transportation to visit the
women – but this is the only way to turn the tide of this disease – STOP
maternal to child transmission. It is a
lot more expensive to treat a person lifelong, than it is to prevent the
infection in the first place. I hope
other clinics in Kitgum can start similar efforts.
While we were at the hospital, the other Australians worked
on a generator for the clinic, also mentoring the staff at a little pharmacy
they started to help the clinic become more self sufficient (medication sales
do not need prescriptions in Uganda, but also many are also counterfeit/useless - therefore reliable, safe and affordable
medications are valuable to a community.)
Dr. Andrew also did pediatric rounds at the hospital and did some
clinical teaching too.
We visited an old friend Lois who runs Tender Trust orphan program in Kitgum. Lois is a Kiwi - but she and Australians have a good relationship nonetheless :)
Her program also focuses on rejected or disabled children... what a place. Such hardship, but amazing love and joy there as well.
Here is Hannah surrounded - she has an amazing connection with kids, singing and playing with them - soon they crowned her with flowers. Then a picture of Pippa, a little charmer who was carrying her "baby" Tigger on her back, just like the mom's carry their babies.
Given my history of “complicated” travel to and from Kitgum
(that was said with tone of irony)
Lynnette, Hannah and I decided to start for Kampala on the bus a day
early…. Just in case we might not get through in one day.
So it was no surprise the bus came to a
halt between Kitgum and Gulu because of a truck blocking the road at a
particularly bad spot. Everyone piled
out of the bus except the chickens, and we all stood around outside watching
people try to dig the truck out for an hour or so… this was our bus - everyone getting out and walking forward. You can see the quality of this road and why we could not get around the truck... (AGAIN!!!)
Miraculously, the truck was eventually extricated and we
pretty much traveled the rest of the way without a hitch. The trip only took 11 hours (longer than the
usual 8 – but I was in a grateful frame of mind anyway.) We heard that the next day, the bus did not
get through – so we had made a wise move and didn’t miss our planes! We stayed at a nice hotel near the airport
and enjoyed a real bath before the long plane ride, and also had a great lunch
with our driver/friend Francis and his wife Harriet on the shore of Lake
Victoria in Entebbe.
An interesting aside is that while I was in Uganda, a noted
NY Times reporter filed a story on breast cancer in Uganda – how about that for
a coincidence? I read it when I got home
and it really resonated with me. I
attach the link below and hope you will read it and watch the embedded video about
a woman from Gulu (near Kitgum). This
will give you a feeling not only for someone with cancer, but how difficult it
is to get help for any medical problem in Uganda. Can you imagine a country of 30 million
people with six oncologists, one radiation machine, and very little
chemotherapy? Here is the link to the article: http://www.nytimes.com/2013/10/16/health/uganda-fights-stigma-and-poverty-to-take-on-breast-cancer.html?ref=world
So in conclusion, I am always left with the “what next” question. Uganda is
a beautiful, but complicated place. It
is seen as a stable country (by African standards) and has made great strides
in treating HIV since the earliest days of the epidemic. However, it shows signs of persistent and increasing
governmental corruption, crumbling infrastructure, and purposeful
discrimination of people in the north of the country.
I am drawn to the people and the possibility of
helping teach and train Ugandan healthcare workers. My experience in London this winter at the
tropical medicine course helped me immensely
- on this trip I had a better understanding of which conditions are
treatable and which are best approached with palliative care. I’ll likely go
back a couple of times next year, probably to the Jinja area. I feel like I have a lot to contribute, but a
lot to learn. AND, I think I have
finally convinced Steve to come with me next year. That blog will be worth reading :)
Finally (I know you are exhausted by now) – I want to end
with an excerpt from “One Thousand Gifts” by Ann Voskamp – which I read while I
was in Uganda. One of the greatest
struggles with getting close to extreme poverty is a feeling of guilt for what
I have, and questions about how I should respond. Why such inequity? Where is God?
I found her writing very compelling…
Ann
recounts an episode staying with her sick child in the hospital...
"The
moaning of babes, the crying of sick children, the murmur of nurses with grim
prognoses on lips and morphine in hand, these haunted through the endless
hours. I did not sleep, the pain of that place begging me to pray.
After our son was given the thumbs-up and the signature of release, I
came home to bedrooms and bathrooms and kitchen and fridge and windows and
unmerited, luxurious health and I threw up my arms in giddy gratitude.
Here? This place? Surprise! I was a woman who saw what her
life could well have been, a woman who didn't live by a deathbed or in a
refugee camp or a war zone or the rubble of an earthquake. I laughed at
the surprise of dishes in my sink and the wild surprise of turning on the stove
to boil water and a flush toilet and I was healthy and I got to be here and
do this! And things but forty-eight hours prior I entirely took for
granted---even rather half resented as flawed and less than -- I spun around:
All surprising grace! And there has not been a single night
the nearly ten years since, that my son and I haven't whispered in bedside
prayers for those who cry out in the dark, for we witnessed and we remember and
we will always carry... "
