Archive for October, 2012

Children’s Cancer Institute

Oct 21 2012 Published by under Uncategorized

The Mulago Children’s Cancer Institute is where, so far, I have spent most of my time. Josephine is the nurse who goes there and I have found that it is helpful to assist her as there are very many children on hospice there. What she said to me the first day is really, all of these children should be on hospice for pain control. When we make visits to either home or hospital we anticipate the medications the patient being seen will need and bring that. Morphine is dispensed in three concentrations, 5mg per 5 mls, 50 mg per 5 mls and 100 mg per 5 mls. The different strengths are color coded, green, red, blue, and put into 500 ml plastic recycled water bottles. The label will indicate the concentration, the current dose, the volume dispensed and the patient’s name. The nurses carry a kit as well with the most needed and frequently used medications, Colace, dexamethasone, metronidazole, haloperidol, to name a few. Most of the nurses currently working for HAU have gone through the 9 month training required to be prescribers of morphine.

We walk into the ward that is crowded with beds and cribs all containing a very sick child. Parents squeeze into the small space between beds. I notice one woman lying on the floor next to her sick child’s bed nursing a baby. There are families and children outside sitting on steps, leaning against the walls. I notice that behind the nurse’s station, next to the large red contaminated waste container, is lying another child and his mother. Seemingly the nurse’s station is not used as such.

Josephine is whisked away by the hand by one of the doctors to go see a patient who is in pain. The Children’s Cancer Institute has run out of morphine and the child, who is really a young woman of 19, is crying in pain. She is familiar to me as I saw her at the Mulago hospital a few days ago. They have not gotten a definitive diagnosis yet. She has tumors behind her right eye, her scalp and right foot. These are grossly disfiguring and I am told she has essentially lost her site in the right eye and is now having difficulty seeing out of her left. These tumors remind me of the disfigurement of so many of the children here who have Burkett’s Lymphoma, which is an AIDs related cancer. As I walk through the wards it seems to be what most of the kids have here. Luckily this patient is enrolled in Little hospice Hoima an affiliate of HAU and also that Josephine always brings extra morphine with her as frequently there are hospice patients at the institute that were not expected. She gives our patient 7.5 mg of liquid morphine and she is pain free within a short time. Her caregiver who is her sister looks to be about 16. Apparently the parents have both died of AIDS and there is only an aunt who visits infrequently.

We visit Joseph, who I had met at an earlier visit. Joseph is 4 years old with Burkett’s lymphoma. He has literally the most horrendous tumor I have ever seen. It is overtaking nearly his whole face. There is a small area on one side of his mouth that is still viable and which he can take small amounts of liquids. His tumor is fungated and the metronidazole tablets that are crushed and placed on the wound to diminish the odor of rotting flesh have limited effectiveness. His parents are with him. His dad tells me that they took another biopsy today as the chemotherapy is obviously not working. They are discharging him today to return in 2 weeks for the biopsy results. Their home is hours away and they have no money for the bus ride. His dad tells me that they have been away from home for many weeks and that it would mean so much to them and to Joseph to go home to their village. Hospice tries to assist people with transportation costs when they can but Josephine did not bring any money for this. Between the young doctor volunteer and myself we easily come up with the 15000 shillings ($ 6) for their ride home. Joseph is so happy to be going home that he finds the strength to ambulate out the door which is the first time in ages that he has had the ability to stand. I watch in wonder at the idea of taking this very sick child on a bus for hours. But people in Africa are tough and do what must be done with little complaint. We make sure that he has enough medications, especially morphine to last until they return.

Burkett’s Lymphoma is a pretty curable cancer if caught and treated early enough. Mulago hospital in Kampala is the only place to receive chemotherapy or radiotherapy in all of Uganda. As I have heard it said, to tell a family who lives in a village far away that they must go to Kampala for treatment is like telling them to go to London. Many people have never left their village and very few have the funds to travel, let alone pay for treatment. The only assistance comes minimally from a few organizations. Hospice Africa Uganda attempts to pay for a child’s first chemotherapy round. Their resources are very limited but they do what they can. I can only imagine the horror of being told that my child had a potentially curable disease but treatment was inaccessible to them because I could not afford the cost. “It is very difficult,” Josephine repeats many times today with a certain resignation in her voice.

I asked around about the morphine. How could this happen that they ran out! Where does it come from and why would it not be readily available to suffering children. I was absolutely appalled and very angry. I directed this anger at the first world countries, like my own, that could, without conscience go into a country like Uganda, exploit its resources for profit and turn a blind eye to the suffering of that countries children. Morphine is very cheap. 40 American cents can keep most cancer patients pain free for a week.

It was the next day before I got any insight into this problem and as with most problems related to the distribution of resources, especially in a third world country, it is complicated. We were invited to lunch at Dr Annes home on Saturday. There I met a woman who works for an NGO that monitors the distribution of morphine in Africa. This young woman was working specifically here in Uganda. She described some of the problems she has come up against, from lack of ink cartridges for making labels, to running out of recycled water bottles, to shipments of the powder being mysteriously half of what they were supposed to be. And then there is the general lack of organization and infrastructure that seem to plague all of Africa. She does not believe there is much of a problem with diversion, as far as she can tell it is not sold on the streets. Uganda, however is much better off than most of the rest of Africa where there is no morphine at all. Many African countries resist the use of morphine as being a dangerously addictive drug. She specifically sites a hospice she visited in Rwanda where the nurses where so frustrated trying to care for the terminally ill without the ability to control pain. After much education and negotiating with the Ugandan government (much done by HAU), morphine has become increasingly available here. As it turns out Hospice Africa Uganda is the only manufacturer of morphine from the powder that is brought into the country. They manufacture it and then sell it for a very nominal profit to those who then distribute it to the hospitals. They hope that with the small profit they will be able to continue the outreach and education regarding pain control in Uganda and in time to other African countries as well. She tells me that she did not know that the Childrens cancer institute ran out of morphine but promises to look into it right away.

At this lunch we also met other dedicated NGO workers who are assisting the Ugandan people. One man said,” I came to work here for 6 months and I am still here 9 years later.” He is providing education for the children, many of whom are orphans, in the slum here in Kampala. Another man works with the refugees that are still living in the northern part of the country. There were 2 Irish doctors present who came to volunteer their time as well. I felt privileged to be in such a group of people. The two NGO men were there with their families and there were beautiful little, very healthy looking, children running around everywhere. It was a good reprieve from the Children’s Cancer Institute and I wonder how many of the same children will be there on Monday.

4 responses so far

Hospice Africa Uganda

Oct 18 2012 Published by under Uncategorized

It is Friday afternoon and after a 2 hour cab ride find ourselves at the gate to Hospice Africa Uganda. We head to what seems to be the main office. When I explain that I am there to volunteer they are confused and send me to someone else who checks and tells me that they cannot find any of the information I had sent them. They had confirmed months ago that they had recieved it. My son and I look at each other, laugh and say “T.I.A” (this is Africa) for the hundredth time on this trip.
They make a call to Dr Eddie and I am confirmed as a legitimate nurse and volunteer. The whole mood changes and everyone seems to appear suddenly out of nowhere to welcome us. I have found Africans in general very friendly, but Ugandans in particular. They are extremely affectionate as well and hand shakes and even hugs when introduced are the norm.
We are put up in one of the guest houses here which are very adequate. We are told to ask for anything we might need and feel very looked out for. The first day we are given a tour of the facility. There are several buildings that house the pharmacy, clinic, administration, education (with library) and doctors and nurses. As I am introduced I am struck by how professional and seemingly organized it all is. In fact it feels very much like the hospice organization I am familiar with.
HAU was founded by Dr Anne Merriman about 20 years ago. She is a British woman who was called by her profession and her Faith to do something about the suffering of the very ill and dying people of Uganda. She is now 77 and still very much involved.
We are invited to her house for dinner soon after arriving. I am nervous because I admire her so much. She lives in a very comfortable but extremely modest home. There are two other volunteers joining us for dinner. Both young women, one a physician from Ireland and the other a physiotherapist from the UK. We share our stories and have a lovely evening. Dr Anne is warm and down to earth and I feel comfortable with her immediately. Tomarrow we will start our clinical time here.

Day one, Monday.
Every morning is started with prayers, which consists of a gospel song and a brief prayer. All the staff seem to join in. Then there are announcements if any. That first morning Sequoyah and I are intoduced and asked to say a few words about ourselves. When it was Sequoyahs turn he stated that he had no medical experience but that he was happy to be put to work doing anything that needed to be done including playing his guitar if that was something some of the patients would like. Dr Anne had already gotten him in touch with a man she knew who assisted with the children in the local slum and they planned on meeting on Wednesday.
After prayers and announcements there is a clinical report session where difficult cases are brought up to the teams and discussed. There are 5 teams. HAU has a census of over 1000. Many of these patients are AIDS patients and many of those are discharged after their pain is stablized. Not being a government funded program they can take any patients on who need symptom control even if their prognosis is not set at 6 months or less. In each team there is a team leader who is a nurse, a visit nurse and an MD. Sometimes it is the whole team that goes out and sometimes just the visit nurse. Each team goes into the field 3 alternating days a week. The other 2 days they remain on site to assist in the clinic that exists on site, or do paperwork. The ambulatory patients that are able to come to be seen there. Bed bound or hospitalized patients are visited.
Patients here often continue to receive treatments as the funding here is very different than the US. Hospice of course does not fund treatments but there is a lot of care coordination with the oncologists, hospitals and AIDs organizations. Many, many Ugandans are HIV positive and the health organizations attempt to get as many on ARVs as possible. Other than AIDs the patients are primarily cancer patients. One physician told me it is not unheard of to take on a cardiac or respiratory patient but is unlikely to happen unless they have pain. There are many children on hospice here. Many are HIV positive and many have cancer. We have heard from the people here that cancer rates in Uganda have risen drastically in recent years. There is an increase in industry and with that, pollution. One person told Sequoyah that there was a plan to dump DDT into Lake Victoria to try and kill the hyacinth that has started to invade there. It interfers with the fishing! The burning of plastic is common as there is poor garbage infrastructure. Bottom line, I can see some very immediate reasons why the cancer rates have risen.
That first day Sequoyah joins us on our visit with one of the nurses to the general Kampala hospital. As I said, they are very welcoming to us and never gave it a thought that he should not see the patients also. I keep telling myself that I should not be shocked by what I see and I am continually shocked nonetheless. This hospital is the main hospital that people from all over Uganda go to who have no money. It is 6 floors. I am told that the 6th floor is where the “paying” pts are treated and it is much nicer. We do not make it to the 6th floor.
Our patient is in a ward which is a very large room that is filled wall to wall with beds. Every bit of space in the center of the room has beds also. There is literally 2 feet between beds at best, barely enough room to walk around in. Every single bed is filled with a man, woman or child. No screens, no curtains,no privacy whatsoever.
Our patient, Julia, has rectal cancer. She is obstructed and they were intending to do surgery but she has declined so much that even the surgeons have given up that idea.
I have to pause and tell you here that patients must be cared for by their family. There are not enough nurses to care for the patients. There is no food provided by the hospital so this is brought in by the family. For poor families who live hours away this is an extreme hardship as you might imagine. On top of that the patient provides their own medications. The doctor will write a prescription and the family will go to either the hospital pharmacy or one of the many street side pharmacys and purchase the medication and bring to the patient to be kept at the bedside and administered by the patient or family. (And we thought our health care needs improving!!!)
So for Julia, our patient, her caregiver is her 12 year old daughter. There luckily happens to be one other empty bed next to her moms where she is sleeping. I wonder as I watch her if she understands that her mother is dying and wonder what will happen to her then. Looking at her mom I think it is douptful that she will be leaving the hospital alive.
Julia is nauseous and vomits into a small bucket and then asks us to assist her to the (literally) bucket under the bed. At this point Sequoyah quickly pardons himself and goes into the hall.
We see several other patients here. As you walk the halls and outside corridors there are people “camping” in every free space. Mostly they are the patients family. Some are patients waiting for a bed. I am overwhelmed by human bodies, poverty and suffering. It felt at time surreal, and I could imagine it was just movie set. Like those war movies where there are cots of suffering beings lined up in rows to waiting to die. Not that everyone there was imanently dying, I am being dramatic, but it felt dramatic.
We left there and headed back to HAU by way of the vans that transport the clinical staff. The roads are so bad here and traffic so horrendous that they have found it much more efficient to have drivers take the docs and nurses to where they are going. Its a good idea as I would have been too shaken up to drive after my first day.
That was only day one, much more to come.

3 responses so far

Africa is a wild ride

Oct 06 2012 Published by under Uncategorized

Milamani backpackers was where we stayed the first four nights we were in Africa. It Is in Nairobi but down a fairly quiet street. There is a 24 hr security guard at the metal gate who lets people and cars in and out and a dog named Scooby do who assists in guard duty. Scooby has the run of the place and is not above snapping at someone who might be sitting in his spot. Most of the travelers stay in a dorm that consists of 5 bunk beds. The first few nights Sequoyah and I had our own smaller dorm room to ourselves which was conducive to my acclamation process. The beds are $10 US a night. There is an open air restaurant with a bar and fire area in the center. This is where everyone mostly hangs out when not in their room or on the computer. It is has a rustic charm. It did take me a day or two to get used to the dorm style bathrooms that you share with all the hostels residents male and female alike.

The food is different here and I am getting used to it. I really like the chapatis which remind me of a very thick and greasy tortilla. It is relatively expensive to eat at the hostel and so for breakfast we walk to a small very “local” open air café. We eat chiptatis, beans, cooked cabbage and very sweet chai. We are the only white people and this is a source of many stares. But the owners always seem happy to see us. The breakfast costs less than $ 2 US. Every one mostly eats with their hands. There are sinks or containers of water in most eating places to wash before and after eating. No towels of course.

I have learned to carry toilet paper with me always and am prepared for squatting over a hole, which actually is preferable to most of the toilets I have encountered. There is a large barrel of water in the bathrooms with buckets to dip the water out to “flush.”

We are constantly meeting the most interesting people here. Kevin, an older white Kenyan seems to be a fixture at Milimani. He owns a home in Uganda near the border of Congo and as best as I can understand it , his job is to facilitate the transfer of aid into the Congo. I imagine this is could be a sketchy business at time.

Ali is 42 yrs old and also a native Kenyan with Pakistani parents. He also lives in Uganda but works as an IT guy in Nairobi. Milimani is his home base while working. Ali went with us one day to the Kibera slum. I could tell that he was impressed with Sequoyah’s relationship to the people there and also somewhat surprised at the conditions despite having lived here for so long. It is always different to see things first hand. He had some very good ideas regarding the establishment of a web page and how, if the means were ever there, teaching the children how to become comfortable learning the computer.

Both Ali and Kevin are open and friendly and seem happy to meet new people but they suffer no fools and do not hesitate to express their strong minded opinions. They are vastly independent individualists that remind me of the men I met on a trip in Alaska years ago. I speculate that a white man born in Africa must fight their own particular battles to survive here. (I have yet to meet any white African women)

Then we meet Paul and Bill. Sequoyah brought a suitcase full of books for Paul from a friend in the US. Paul is in his senior year of high school. He is a voracious reader and has not limited his education to the school curriculum. He is well versed in the politics of Africa and the world. He said he would like to make a change in the world and I believe he will. He lives in Tanzania and took the bus to Nairobi from his home in Dar. He arrived at night and was almost immediately robbed at knife point.
Paul’s friend Bill, who he is staying with while here, lives in Nairobi. He is quiet and thoughtful, watching and listening all the time. Both young men are very intelligent and will certainly be an asset to Africa as they grow up.

THEN there is Jennifer. Jennifer is from Northern Ireland. She is petite, has red hair, green eyes and freckles. A classic Irish beauty. She is 22 yrs old and came to Africa months ago with an NGO. They started their work in Gana. The last few weeks she has spent living in a hut with a Masai woman and her children. No electricity, no running water, a 20 minute walk to the next hut. She told me how at one point one of the children tipped over the lamp oil container and after that they had no light after dark as something like that is not readily replaced.

Jennifer is understated in her quiet humble way. In truth she is spunky and brave. She travels confidently through the streets on her own, which I very much admire. Her next project in Tanzania was not inspiring to her and after talking to Sequoyah decided to visit the Kibera slum with us. When we left Nairobi she was established as a volunteer teacher with them for the remainder of her time in Africa.

We take a bus with Regan to a small town called Miguri. He needs to check on the land that St Catherine’s has purchased and we would like to see it. It is an 8 hour bus ride with one bathroom stop. I deliberately drink as little as possible and have no chai that morning. The driving in Kenya is really insane. I have no doubt that Sequoyah saved my life at least 3 times the first couple days walking around Nairobi. They drive on the other side of the road here and so the first thing one must get used to is looking right instead of left first. Other than having designated sides of the road to drive on, there seems to be no rules. And I think even that one is really just a suggestion. You could not drive here if you didn’t have a horn in good working order. It is standard practice to honk your intention to pass someone or to let a vehicle or pedestrian know that you have no intention of slowing down for them, so get out of the way fast. I have not seen anyone run over yet but witnessed a few close calls including involving myself. In Nairobi the streets are full of more traffic than I have ever seen in that amount of space. Buses, cars, taxis, matates rule the road. Pedestrians have no rights and must find their own way across the streets. There are no cross walks, few lights, no stop signs. Many of the people who live here are either very brave or have just lost their patience for it as they just step out in front of the cars to cross the street. It is like playing a game of “chicken” but a more deadly version than I grew up with.

On the bus I decide that it is better not to watch the driving and concentrate on the countryside instead, which is fascinating. We travel along a narrow highway, with no room to spare, thru small dusty towns. The speed bumps are the only thing that protects the people and animals from being run over. If our bus comes up behind a slower vehicle he will pass, it seems, no matter how close the oncoming vehicle happens to be, sometimes missing it by inches. The Matatus are the worse. They are mini buses that literally cram as many people and animals in as possible and then go screaming down the road at an ungodly speed. We passed one that had just run off the road. We went by too fast for me to see it there were casualties.

At one point in our journey to Uganda we took a 2 hour cab ride rather than take a matatu, our only other option. While riding with Ben, our driver, I started to get a better understanding of how it all works. For all the speed we traveled, (I noted at one point 120 Km/80 mph) Ben was a very good driver. There seems to be a whole system of signals that are apparently agreed upon here. These consist of honking, blinkers, and hand signals. East African road language. He got us safely to the bus station for another long bus ride over the boarder to Uganda.

On the bus to Uganda I sit next to Javenta and her beautiful 5 month old baby girl Faith. Javenta tells me that she is soon to join her husband in Chicago. He is a doctor and she is a teacher who have acquired Green Cards for the US. He has been there several months already looking for work. She is on the bus returning home after a short trip to finish the last of the money exchange for her Green card. She expresses how strange it was to hand over so much money (and here she holds her hands about 12 inches apart) to receive just 3 small pieces of paper in return.

Javenta asks me what it is like in Chicago. I tell her I have never been but share what I know. She has many questions about the US. Can you buy land? What are your crops? What foods are available? I tell her that you can get anything in the US for the right price.
I spend much of the journey holding Faith. She sleeps easily on my shoulder and I am grateful for the baby fix. She is a happy, smiley, lovely child. Her mother is graceful in her manner and speech. We both have to repeat everything at least once due to the difference in our accents. We laugh and take it in stride. When we reach our destination we exchange information and I tell her to call me when she gets to the US. She says she will. And I decide that riding the bus is a wonderful way to travel.
More to come, love to you all.

3 responses so far

Kibera slum

Oct 01 2012 Published by under Nairobi

Today Sequoyah took me to the Kibera slum. It is one of the largest in Nairobi only about a 15 min bus ride from Mirimani backpackers hostel where we are staying. Kibera was not so very different from what I imagined but imagining is far from experiencing. Nothing really could have prepared me. Poverty of the most profound sort that is not just a vision in the mind but that is experienced by every sense of the body. We wound thru a maze of narrow pathways between structures. Homes made of mostly mud, cement and coragated steel.  All materials are utilized. Sewage runs in streams thru these “streets.” Garbage is piled up in mounds everywhere. Truly my sense of smell was most assaulted. The smell of life packed into a small space, the smell of garbage and excrement, charcoal cook fires and unfamiliar food. The children everywhere repeating the standard greeting “how are you?”  “how are you?” And I respond,”Fine, fine and how are you? Over and over as we passed. Obviously we stand out.

We followed Sequoyah’s friend Regan through the maze to St Catherines school and orphanage. St Catherines was started by his father, a Christian minister, years ago in response to the need that existed here. There are 24 “adopted” children that they care for and about 100 students from kindergarten up that attend the school during the week. On Sunday he has services there. They are truly doing God’s work in its rawest and most profound form.

Regan was giving me the tour of course as Sequoyah was returning after a year and half.  He lived here and taught the children while in Africa before. There were some changes since then, including a whole new building, if you could call it that. It was more like two small rooms above the kitchen and bedroom of the older boys. I know that I cannot do justice to the scene but I will do my best. Imagine stepping though the door way into a very cramped and dark (the electricity was out) low ceiling hall that led thru to the steepest most narrow wooden staircase ever made. Upstairs is the girls living quarters which is two rooms about 10 x 10 crammed with several bunk beds. One small window to each room. Of course it is hot anyway and much hotter upstairs. I could not help but think what a complete fire trap it was up there with its single exit down those stairs. The construction is amazing and its seems that even upstairs is a dirt floor. The walls may be cement or clay over a sketchy thin board framework. But I was too busy thinking about the earthquakes we have back home and wondering if they have earthquakes in Kenya too to inquire further about their building materials.

So while the whole physical scene itself is overwhelming I am being introduced right and left to all the people, adults and children that live and work there. They are so happy to see Sequoyah again,  quite a reunion. Hands are clasped, hugs given. They obviously love my son and are very happy to meet his Mom.” Sequoyah is a celebrity here” Regan tells me. And I can see it.

By this time it is all that I can do not to break into tears. Tears of frustration for the injustice of this poverty, tears of sorrow for the suffering here, tears of amazement for the grace and beauty of these people I am meeting and tears of utter gratitude for this amazing young man, my son, who is so at home here, so loved by these people and so present for them. It seemed to me that it would have been very selfish of me to cry there and then and so I do not.

Later I asked Sequoyah about the toilets as there were obviously none indoors. He tells me that the only toilets are privately owned.  A line of wooden outhouses numbers on them. They cost 2 shillings per use, all opportunities to make a living utilized here.  He told me about the “flying toilets.” What people must do who cannot afford 2 shillings every time they need to use the loo is use plastic bags. They then fling the bags as far away from their homes as possible, landing, as you may imagine, anywhere.

We visited the men who grind bone to make jewelry without masks or ventilation. The bone powder filling the air. They sit there for hours, days, weeks, lifetimes breathing it in. The jewelry is beautiful and I bought a bracelet and earrings for their asking price, about $ 4.

There were men and women carrying large bundles of wood on their backs. They cut it in the forest and carry it back to sell. It is totally illegal and sometimes they get shot. Regan told us a story of how in an attempt to shoot one of the thieves the person missed and the wild bullet killed a woman in the slum.

People do not dress in rags here. They are clean and neat. They, at least those I met, were gracious and very friendly. They are big on shaking hands, and I received a few hugs. There were smiles all around. Kenyan accents are strong and I struggle to understand everything that is said.

Last public testing that was done  of the children from St Catherines they ranked very high. With some financial help they were recently able to purchase land. Their goal is to become self sufficient and grow their own food with hopefully enough left over to buy books and other needs. Interestingly the land is about 7 hours away by bus. They have not worked out all of the kinks but the inspiration and motivation is there. And the intelligence. There may not be a lot of people with higher education here but intellectual sophistication abounds. I think living on the edge of survival must make people smart.

In general all the people I have met, residents and foreigners alike, have a much more in depth and sophisticated analysis of world politics, and specifically how it relates to the U.S. than most U.S citizens do. I have had some awesome and educational conversations in the short time that I have been here. But that will  have to be the subject of another blog. Or not.

I am blessed to be alive and here and to have such dear friends who would actually take the time to read this.  Baddaye! (see you later)

10 responses so far