Limping our vehicle home last night felt like a major accomplishment considering the alternative would have been a massive headache trying to get Turtle towed back here to FAME while still managing to supervise our neurology clinic for the day. It was really essential for us to fix it as we’d need it for Saturday which was going to be our first neurology mobile clinic to Rift Valley Children’s Village and on Sunday we were planning to go on safari to Tarangire National Park. But having a vehicle here to use is truly a double-edged sword. Having grown up in California and been of age in the 1970s, everyone had a car and drove wherever they needed to go. I’ve owned a car from the age of 16 and really couldn’t imagine ever living without one if only for the independence and freedom. I now live in downtown Philadelphia and ride my bike to work every day so I only drive on weekends or vacation, but I still can’t live without one.
So, it goes without saying that I’ve always had a vehicle here to use from my early visits and have never considered being without one. Oh yes, the double-edged sword part of the deal is that as great as it is to have a vehicle here, it is equally as disappointing when that vehicle breaks down and leaves you stranded. There is no AAA here to call and tow you to the nearest repair shop. Help is not always a phone call away. The other part of this equation that must be appreciated also is that vehicles here just are the same as they are in the US. It’s not that they are built differently, but rather that they are used tremendously longer and the miles they’ve drive, or really kilometers, have been much more difficult than at home. These vehicles are truly driven off-road. Where at home perhaps an SUV is driven 95% on pavement and 5% off-road (which is being incredibly generous, I imagine), here their vehicles are easily driven 95% on very rough dirt roads and the pavement, which has speed bumps in every town, is not the same as what we have at home. Needless to say, these vehicles take a beating and are constantly in need of repairing something to keep them running smoothly.
Over the last few years, we’ve had some significant break downs in some very remote spots and have been incredibly lucky that we’ve made it home each time, though each one clearly altered our plans and caused us not to be able to do certain things. Despite all of this pain and suffering, having a vehicle here to use not only for our mobile clinics, but also to visit friends, go on safaris and transport us from the airport to FAME has been critical. The neurology mobile clinics have been critical to our efforts here, as we visit the remote villages of the Mbulumbulu region and see patients who live in these villages and are either unable or unaware that they should travel to FAME for their medical care. Many of these patients are unaware that they have conditions that are treatable such as epilepsy and only require a diagnosis to begin treatment that can often be lifechanging for them.
I will have to admit, though, that having a vehicle here in East Africa where I am driving through regions that I had only dreamed about visiting, let alone driving, has been a dream come true for me and something that I wouldn’t have considered any other way. I think it has contributed much to my ability to have been successful here not only in what we are trying to accomplish, but also as a part of the community. Every trip I take anywhere, I see people who know me from FAME, whether it is in downtown Karatu, or as far away as the Serengeti. And I am so happy to be a part of their community here and treated as family by many.
Our fundi (Swahili for expert) was coming in the morning which was a good thing since not only did he have to fix the transmission with the broken bearing, but he now also had to reattach the stick shift that had come completely off the night before. By 9 am I was getting a bit worried since he hadn’t yet arrived (he had told me 8:30-9 am – remember, “TIA”), but I bumped into Anton from the lab who had translated last evening and he told me that he had just gotten into a NOAH (a small minivan, but much nicer than the Dala Dala) coming from Arusha and should be in by lunchtime. He finally arrived at around 1 pm and took the keys from me to go fix Turtle and said he be back by evening time with everything fixed and operational.
Meanwhile, we had a full day of neuro clinic to get started and one of the first patients was the young women with the rheumatic heart disease that Lindsay had seen. She and Steve had placed her on some furosemide to see if it would make her feel better and it apparently did, so the while they worked on coming up with something temporizing, they also put in motion referring to the cardiac center at Muhimbili University Medical Center where they could evaluate her, but it would be very unlikely that they would do anything for her beyond that (i.e. surgery) if she were unable to contribute something towards her having that kind of procedure. It is unfortunate, but if she were a child, any necessary heart surgery would be completely covered by the government and they do not cover it for young adults.
We had had a similar problem previously with a young (but not young enough) Down syndrome patient we had here in whom we had diagnosed leukemia and were told by the center at Muhimbili that they were unable to treat her as they were only currently treating leukemia in children and not in adults. It was very difficult at the time to have had to tell this mother who had cared for her disabled child for so many years that there was no treatment for her daughter in Tanzania and that the cost for her treatment elsewhere was something that could not be paid for even by an average person in the US, let alone Tanzania. We will contact one of the cardiologists at Muhimbili for our young woman with rheumatic heart disease and at least have her evaluated to see what is available for her, but I don’t think we have high hopes that she will get what is really necessary which is surgery.
Our young Maasai women her presented with venous sinus thrombosis and a venous infarct in the setting of pregnancy and probable anticardiolipin antibody syndrome (we have no way to confirm the latter diagnosis here, but have no doubt given her clinical history) has done amazingly well, so much so that was walking outside with her mother and husband and had little in the way of any apparent deficits. During her seizures, she had bitten her tongue badly and her lip, but she seemed to be otherwise unscathed. She did have a somewhat flat affect, but this is always a bit difficult to fully interpret in many very traditional Maasai women as it is purely cultural. She speaks Swahili, so it is not a language issue, but as I have mentioned in the past, many Maasai woman who never really leave the boma speak only Maa and therefore it is difficult as we are communicating with both a Maa and Swahili speaking interpreter unless we’re lucky enough to have a Maasai interpreter working with us.
At one point during the day, Lindsay and I met with the patient, her mother and her husband so that Lindsay could do a final examination on her (in which she found only the subtlest of deficits) and we could answer any final questions that they may have. I took the opportunity to tell them how incredibly fortunate they were to have had Lindsay assess her when she arrived as her diagnosis is one that can often be very difficult even with all the tools we have at home and that the fact that she was treated so quickly was very likely the reason she had done so well. We had also made sure that all of the clinicians here are now well aware of this entity and how it needs to be treated, though I will have to admit that even in the best of circumstances, these patients can often do poorly and putting a someone on anticoagulation with even a very small amount of blood in their head can go rapidly south and without the availability of a neurosurgeon, vascular imaging and repeated CT scans, it can be a bit trying to even the most hearty vascular neurologists.
Our other patients for the day were a general smattering of neurology and general medicine. Amisha evaluated a very interesting patient baby who was cognitively intact, but way behind in motor skills and was found on examination to have a significant decrease in axial muscle tone and had a very poor such. After reviewing all of our pediatric neuromuscular disease we felt that she most likely had congenital myotonic dystropy. On further exam of her mother (who was only 24), she also had some features suggesting myotonia which would make the diagnosis a very reasonable one, though without further testing, of course, it was really not 100% as is often the case here. Hannah had a case of a young patient with a Bell’s palsy (facial weakness) that was clearly peripheral on examination and had occurred two months prior with incomplete recovery. In the US, we always check for Lyme disease as it is a common cause of Bell’s palsy there, but here you have to check an HIV as it is the most common infectious cause of a facial palsy. The HIV test was negative so there was little else for us to do in an uncomplicated facial palsy, though we would typically obtain an MRI scan after four months if there were very poor recovery to rule out a tumor.
Hannah also saw a women who came in with symptoms of depression and when she took the history (and reviewed the chart), it turned out that had been seen several months ago with a new breast mass and was recommended to have it biopsied, which she hadn’t done as she was afraid. The mass was now larger and she an axillary lymph node on examination that was worrisome. We convinced her that it was best for her to get the biopsy (which was set up for the same day by Dr. Kelley, a US surgeon doing a fellowship here for the year) and we also placed her on fluoxetine, an excellent SSRI antidepressant medication that we have here to use. John also saw a patient with prostatitis, clearly not a neurological problem, but he had complained of numbness and pain and so was put in our clinic. John artfully obtained a urinalysis and then recommended that he be seen in the general clinic at a later date.
Our fundi for Turtle finally arrived from Arusha around 1 pm and I gave him the additional news of the disconnected stick shift that would require him to take the vehicle to town so that he would have the ability to weld it back on. He said that he would need several hours to do the work so I gave him the keys and hoped for the best. By the time we were finished with clinic he was still not back, but Anton was going to be around and said that he would have one of the Maasai askari come find me at the house when the fundi had returned. I was a bit under the weather with a stomach bug and decided not to eat the dinner that was made for us that night (Peter was over and happily took me up on my offer to have my dinner rather than heading home to make something) and so I sat down to have a bowl of corn flakes with the very last morsels that were left in the box. Having just poured the milk into the bowl, the askari came knocking at the door to let me know that the fundi had returned. As much as it is difficult to understand how one could possibly look forward to a small bowl of corn flakes (half of which were crumbs), I reluctantly parted with my dinner for the moment knowing full well that on my return I would basically have corn mush for dinner. It goes without saying that the corn flakes here are like everything else meaning that they are not even close to the corn flakes we have at home.
I met with the fundi and, thankfully, Anton, since the fundi didn’t speak a word of English, to find out what he had done and what the damages were going to be. He first told me that he had spent about $50 USD in parts (that was additional to the $30 I had given him the night before for the bearing he needed to buy) and that the labor cost was about $100. Not really knowing if this was reasonable or not, I got Jones on the phone to be certain. He spoke with the fundi and the labor cost was reduced to $70, to the total cost I gave him was $120, far less than it would have been in the States, but still a hefty amount for here and what I used to paying for any repairs. When they had to remove our drive shaft in Ngorongoro Crater at the Sopa Lodge on a Sunday in March, they had worked for two hours and had asked for 20,000 TSh, or less than $10, and I had given than an extra $5 considering how amazing that was. This fundi had traveled from Arusha twice, though, and brought extra help with him today, so all things considered, this was quite reasonable and, most importantly, I now had all five gears working and stick shift that was actually connected to the vehicle.
We were a happy family again, all of us and Turtle, which gave everyone a good feeling and that night we decided to watch a movie. Lindsay and Amisha crashed early, but John, Hannah and I watched Bridesmaids and made popcorn and thoroughly enjoyed the evening with laughs. It was my first time to have seen the movie. Tomorrow would be our last advertised neurology clinic of the big push week as Saturday we were heading to Rift Valley Children’s Village.
2 thoughts on “Thursday, October 11, 2018 – Turtle is back in action….”
Would $500 help in any way with the treatment of the Down syndrome child
Unfortunately, the young woman with Down’s and leukemia was seen over a year ago and I’m sure has passed away in the meantime. We appreciate your generous offer and we can always use something to help with other disabled children or even reserve it for a child with Down’s in the future.
Thanks as always for your support.