Hon. Aggrey Tisa Sabuni: My Personal Experience with COVID-19 of Which I was Rumored Dead Twice

MY PERSONAL EXPERIENCE WITH COVID-19

By Hon. Aggrey Tisa Sabuni, Juba, South Sudan

Friday, June 25, 2021 (PW) — As I share what follows below, I want to thank the Almighty God, who through His Grace, gave me a second chance of life. Possibly to do a few things that I have so far neglected to do and also to share with others what follows below. Putting it in a layman’s language, I want to: (1) State that until I went through the experience, and still continues to go through it, I didn’t know half of what I thought I knew about COVID-19. (2) Share what it feels like to spend some days(weeks in my case) in the Dr John Garang infectious Diseases Unit(IDU) in Juba. (3) Capture the overall impact of my falling ill with the disease.

I was admitted to the Dr John Garang Infectious Diseases Unit(IDU) in Juba in the afternoon of February 19, 2021, following a positive COVID-19 test result the previous day.I was forced to request for the test as my health had been deteriorating right from the beginning of the month. The main COVID-19 symptomswere there(flue, dry cough, fatigue, loss of appetite for food, etc.) which were unknown by me then. But by then I had already totally lost my sense of smell as well as my sense of taste!As I go to press, some four months after the onset of my infection, I have only partially regained my sense of taste. But my sense of smell is still totally down.I went to the Public Health Reference Laboratory for the COVID-19 test accompanied by my wife together with my daughter, both of whom were also exhibiting COVID-19 like symptoms just like myself. The test results for these two also came out positive.

The Juba IDU to which I got admitted as a patient is a special ward facility created and dedicated for the treatment of COVID-19 in-patients. It was hurriedly created late last year in the wake of South Sudan’s first wave of COVID-19. Donor funding and technical support facilitated its establishment. The USAID is one of its major donors. WHO provides technical support services. However, the heavy lifting activities of the Unit are performed by the International Medical Corps(IMC). They are responsible for the key administrative and logistical work at the Unit.So far the Unit has a total of 48 patient beds out of a planned ultimate capacity of 200. The available beds are spread across 6 prefabricated blocks.

After testingpositive, a team of Doctors was sent to my house the following day to assess my condition as well as those of my wife and my daughter. While the other two were found fairly strong, my condition was bad, with my blood oxygen saturation hovering as low as 85%. At this low level of oxygen saturation, the doctors decided to order for an ambulance and had me immediately taken to the Unit for admission. Upon arrival I was ushered into a large ward fitted with 8 beds. It is a large, open hall, with no attempt made to screen off the beds one from the other. So while the patients can see each other and what is happening to any one of them, they cannot talk to one another, not only due to sagging body energies, but also due to the encumbrances created by the oxygen tubes.

As soon as i sat on the bed allocated to me, I was at once fitted with oxygen tubes to help me breathe normally and also improve my blood oxygen saturation.

Fitting me with the oxygen tubes made it difficult for me to talk and socialize with the lone patient i found at the ward. Here, the problem is that getting fitted with the oxygen tube is like being chained to your bed. You are already tied down and cannot move one meter beyond your bed. This guy and I were occupying the two extreme beds of a four bed row. My attempt at talking on top of my voice in order to greet and get to know him didn’t help as he was not in a shape to talk. The Juba February temperatures in the order of 40 degrees centigrade just made things worse.

When I first entered the ward, the sight of its lone patient was both shocking and frightening. He was half naked, looked terribly haggard, and was in the process of easing his bladder. Little did I know that within days I would not only look like him, if not worse, but would be doing the very things he was doing in the open ward. The day after my admission i asked the nurses to show me where to go for my toilet call as there was none in the entire hall/ward. My request shocked them as patients don’t go out or anywhere without their oxygen fittings on. The thing to do was to express one’s need for one to ease himself and they would improvise. Somehow I managed to persuade them to allow me to go to a toilet facility that was only five meters from outside the door of the ward. This meant unshackling myself from the oxygen fittings. The whole operation of my toilet visit appears to have lasted not more than seven minutes. As I emerged from the toilet room dizziness and fatigue overcame me such that I began to stagger. Fortunately, after letting me go the nurses realized their mistake. So one of them was already standing by the toilet door. She caught me and quickly pushed me into the ward as her colleague was standing ready with the oxygen fittings to connect to my nose.Thereafter my condition deteriorated to the extent that I didn’t even have the chance to make the same mistake again!

The IDU categorizes its patients into three conditions, namely, stable, severe and critical. I oscillated between all these categories at one time or another, throughout my stay at the IDU, totaling 20 days.

Again, the day after my hospitalization, Hon. Mou Mou Athian, the former Under Secretary of South Sudan’s Ministry for East African Community Affairs, passed on. A colleague and truly genuine friend of mine. A South Sudanese nationalist and a man endowed with a lot of integrity and enormous capacity for work in the service of the country. I single handedly selected him for appointment as Under Secretary for our Ministry for East African Community Affairs. He had been battling COVID-19 for weeks. This gave the chance to a certain Valentino Bak Wol, to publish on his Facebook my photograph jointly with that of Hon. Mou Mou and declaring both of us as having succumbed to COVID-19. This proved very traumatizing and destructive to the members of my family. My wife in particular, who was already suffering from the disease could not handle the flood of condolence messages coming both from within as well as from the outer world. Two days later she joined me at the IDU as a patient. Fortunately, her condition improved rapidly, and within two days she was taken off oxygen support.Two of my children are still receiving medications as a result of Bak’s Facebook announcement.

Incidentally, in May 2020 during South Sudan’s first COVID-19 wave I was also declared to have succumbed to the disease. Within days President Salva Kiir Mayardit and Uncle Amin Akasha were also declared to have died of the same disease. All the three of us are still alive. Just like the one of this year, that announcement also caused quite a stir. It took the intervention of Radio Miraya who came to my rescue by interviewing me on air on a certain topic so that the general public could hear me speak. Up to now I have no clue as to who executed that mischief on me.

I spent a total of ten days in this ward. The most traumatizing period in my life. During this period, a total of six patients shared the ward with me. Of these four passed way in my full view. All passed away in the evening. Usually between 6 pm and 8pm. Each on his own day.
Each died in his own style. Starting with the first patient I found in the ward. His demise started one afternoon. He quietly got up, removed the oxygen supply tubes and attempted to walk out. He had had enough! The look on his face made it clear that he had voted for the bliss and tranquility beckoning him from the other side. Of course he was restrained by the medical personnel and returned to his bed. By six pm his condition deteriorated beyond rescue. He departed quietly, just like the biblical ram, and in a dignified manner. The second to go as I watched, was brought in one morning on a stretcher. The next day he passed away quietly. The other two who followed came to their end in a rather dramatic manner. They just could not endure the agony quietly. They shouted, cursed, blamed the doctors, the country, before they departed.Of the remaining two, one improved rapidly, tested COVID-19 negative and was discharged. The other one, who was not doing badly, got transferred to another ward. Thereafter I had no way of knowing how he fared, but i believe he made it out alive.Apart from my ward, one could also hear cries of agony from the other wards. A real mental pollution and very, very unbearable!

From here they transferred me to another ward, of the same size. Mercifully to find that i was its sole patient. However, they decided to move my wife here to help them handle me after realizing that she is actually a trained nurse.After a day here they took samples from my wife and from me for COVID-19 testing. Both results came out negative. Normally this would be good news. Indeed, it was good news for my wife. But in my case my condition slipped from stable state to severe and then to critical.After another two days samples were again taken from both of us for another COVID-19 testing. They came out negative, confirming that the disease had definitely left us. But by this time my body temperatures were rangingfrom 37 to 39 degrees Celsius and my blood pressure readings were never below 170 and at times shooting well above 200! During one measurement the reading recorded 216/130.Given this state of affairs, my children decided to work for a way to transfer me to Nairobi, Kenya. With the active cooperation and collaboration of the doctors, they moved me to The Nairobi Hospital on 11/03/2021.

Patient management at the IDU is provided by a team of medical personnel under the leadership of experienced and internationally recruited doctors. A taskforce of 100 doctors supported by 40 nurses is the planned target to provide the needed patient management services once the Unit is fully established. Less than half of these are currently available. They are recruited predominantly from within the country.
Of all the happenings, two things stand out very impressively: One is the tiredless dedication to duty by the medical personnel as they go about serving their patients and saving their lives literally from eminent death. They work an average of twelve hours a day, literally running around the ward either performing routine activities or answering to emergencies which happen all the time. The routine activities include the timely administration of drugs, replacing oxygen cylinders that are soon running empty, patient feeding and keeping them clean, monitoring each patient’s vital indicators or monitoring their original underlying medical conditions, carrying or rolling oxygen cylinders(some of them weighing up to 100kg) to and from the store, among others. The emergency activities include rushing to assist patients whose oxygen fittings have accidentally fallen off(I saw one who deliberately pulled his fittings off just to put an end to harrowing and unbearable pain), putting in order or replacing ventilators that suddenly fail to function, helping patients cope during power failures(a frequent happening), responding to a patient thought to be doing well suddenly relapsing to a severe or even critical condition, rushing to be by the side of a patient whose condition has taken a turn for the worst.

In the course of time I soon came to accept itas normal for doctors and nurses to congregate around a patient whose condition has taken a turn for the worse in an attempt to stabilize his condition. In most cases they succeed and I would end up hearing the lead doctor giving instructions to those in charge of the patient as to how to proceed thereafter.However, in the case of each of the unfortunate cases I witnessed, the lead doctor gave the following instructions when the battle was lost: invariably he would say, a)inform next of kin and b) bring the body bag!All doing their best to calm the patient nerves that are all the time raw and edgy. They do all these while fully aware that they stand a very high chance of contracting the disease as they are not fully protected against it.
The other noteworthy aspect of the IDU is the range of free and quality services they offer to the patients. In addition to free hospitalization, drugs, toiletry and laundry, they also provide adequate and well balanced diets. The Unit provides to its patients the following food items on a daily basis: chickens, beef, mutton, goat meat and eggs, accompanied by a variety of fruits, yoghurt and fresh milk spread across the day. Only that the patients hardly enjoyed them. Take my case. I suffered total lack of appetite for anything food! My salivary glands were completely blocked, resulting in a dry and cracking mouth and a tongue that was continuously getting stuck to the roof of my mouth.

The less complementary remark I must make at this juncture concerns the administration of drugs to the patients. The issue here is that during medication time, more often than not the patients are asked to state which of their medicines had been given to them by the outgoing duty shift and at what time, yet the one asking is holding the treatment sheet of the patient as handed to him by his outgoing colleagues. The point here is that they are asking a patient who is already talking with his God/gods and or long departed ancestors. How could he know drug names and or times of the day or night. By the way, the treatment sheet is actually a bundle of sheets appropriately designed by USAID and bearing its logo. It is designed to capture a range of information including vital data, drugs and drug administration schedules etcetera.

The costs of the management and operational activities at the Unit are mostly met by the IMC with donor funding provided on humanitarian basis. The cash incentives for the health personnel working at the Unit is also donor provided.Two key supplies in the management of COVID-19 patients need to be highlighted here. These are power and oxygen.

After a long struggle the Unit is now connected to the Juba Electricity Distribution Company (JEDCO) grid. This is not only expensive, but highly unreliable given its outage records, as far as patient care is concerned. One only needs to see the look of terror and anxiety in eyes and faces of the patients whenever the JEDCO or the emergency power generator goes off! Just ten seconds without power, which translates to no oxygen supply, means a lot to a COVID-19 patient under oxygen support.These are the moments when the medical personnel also find themselves under maximum stress.Talking about the processing of oxygen locally in Juba or anywhere else within South Sudan has been in lips of South Sudanese policy makers since the 1970’s. It is yet to materialize. This is unimaginable everywhere else in the world.As a result, IMC is forced to source oxygen from neighboring Uganda. It costs USD 1000= to refill a 100kg oxygen cylinder. Some patients in critical conditions can consume up to two100kg cylinders in a day!

From the foregoing it is clear that the IDU is doing quite a lot with very little and for very few. Clearly the biggest challenge facing the Unit is funding and sustainability of funding.Currently the government is only exercising oversight and sovereignty functions over the Unit.The expansion of patient wards to the full planned capacity of 200 beds is predicted on donor funding. The construction of the ward blocks out of prefab structures is a clear demonstration of this fact. The land area on which the IDU is situated is quite large and to think that all the blocks to accommodate the ward structures for the planned 200 beds is quite worrying. As we are continuously reminded these days, just like HIV/AIDS, COVID-19 is here to stay. The government must therefore seriously think of getting into the act and comprehensively budget for the Unit.

As mentioned earlier, my evacuation to Nairobi was done with the cooperation and support of the IDU management. They provided a full report about my medical background, my management at the Unit and what they tried to do. They also did the best they could, to secure my consent to be evacuated. The reason for the cautious approach is that, done differently, I could conclude that my condition was so bad that the Unit had thrown in the towel, as far as my case was concerned, or that i might raise objections on account of the associated costs involved. They also enlisted the support of my wife, who was by this time fit and strong, except for the mental burden in her mind caused by the condition I was in, to explain to me why I was being evacuated and also to make sure I didn’t worry about the cost implications of my evacuation. Even after spending seven days in The Nairobi Hospital, my wife continued to urge me not to worry about the financial costs of my stay there. It was much later that i learnt how my children created a network of relatives and friends to raise the money for my evacuation and hospitalization in Kenya.
So I was informed about the start of the movement. And soon after I felt four pairs of hands gently lifting me up from my bed and carried me out to a waiting ambulance for the travel to JIA. Thereafter I must have fallen into a deep sleep as the next time I knew anything I was laying on the ground face up and trying to shield my eyes from the glare of the hot Juba sun. I was lying near a waiting aircraft.The next thing I knew or rather felt was some kind of manipulation that was taking place on different parts of my body, like some prickings here and there. Thereafter I again found myself lying face up on the ground near an aircraft. It turned out that this time around i was already on the grounds of JKIA. I did not feel or notice my transfer from JKIA to Nairobi Hospital. However, I was aware when they began to stripme of my clothes and dress me with hospital clothings. I also remember hearing clearly somebody(who later on turned out to be my lead doctor during my treatment at The Nairobi Hospital), giving instructions for my oxygen level to be raised to 15 liters before I was rolled into my ICU residence.

Throughout that evening and night, they did quite a lot of interventions on me, including injections, infusions and feeding, following investigations and assessments.The next morning, during what became his regular visits to my room, the lead doctor informed me that in addition to my being terribly dehydrated and badly malnourished, my lungs were damaged by COVID-19 to the extent of 98%. Indeed, my weight had plummeted from 98 kg to 65 kg.Two days later, l was surprised to feel my mouth wet, tongue loosened from the roof of my mouth and saliva flowing out of my mouth. Right from that morning I was able to push food down my throat aided by the availability of saliva that acted like a lubricant. My appetite for food also improved significantly, facilitating more food intake which resulted in weight gain.Much later after I had regained my speaking ability and my health improved, I got into the habit of chatting freely with my doctors and nurses. This was when I came to learn about the drama regarding the assessment of my lung damage as standing at 98% at the time of my arrival.They told me that when they usually do CT SCAN for lungs, they look for the damaged parts to be expressed as a percentage of the total lung area. In my case they couldn’t quickly “find” the damaged parts! They then changed the approach, only to find out that actually there were no undamaged parts in my lungs. They came up with the percentage of 98% simply because they felt that somehow there must be a little portion of the lungs that must have remained undamaged.
After spending five days in the ICU, my condition stabilized considerably. Although I still relied on blended preparations for my food intake, the quantity had increased a lot, with appreciable impact on my health. My speaking and articulation of words had become more coherent. My medicinal treatment now became more focused, targeting the massive coverage of my lungs with fibroids(scars left by COVID-19 wounds), and the stabilization of my heart rate and blood pressure. The other serious treatment that had to start immediately was for the restoration of the mechanical functioning of my various body parts that had all shut down during the period of my total immobility. This is the work to start in earnest at my next station, the HDU(High Dependency Unit).

I read in a summary of a US magazine on longevity which in part reads “If you do not move your legs for two weeks, your leg strength will decrease by 10 years”. Again on the same topic, a University of Copenhagen study found that both old and young, during the two weeks of inactivity, the leg muscle strength can weaken by a third which is equivalent to 20-30 years of aging. I was down for 8 weeks!

The physiotherapy treatment that I am still undergoing started in earnest right from day one of my arrival at the HDU at The Nairobi Hospital.I had to learn to sit upright on the bed without props from the back. To sit at the edge of the bed with legs touching the floor and to start to walk. The hands had to be taught how to pick up a cup of tea from the table and take it all the way to the mouth. Again the hands must learn to pick up a spoon, scoop some food from a plate on the table and take it all the way to the mouth. The teeth and the mandibles have to learn how to chew solid food and with the help of the tongue, push it down the throat.The same thing applies to the back, the hips, the shoulders, the chest, the arms and the hands.
By the time I was moved to the HDU my tube oxygen requirements had been reduced to a five-liter level. Within one week here I went down to two liters, but this could be raised to three liters if I got fatigued after engaging in activities like eating, bathing, standing up and or visiting the toilet. At these levels my lungs were opening up. It means I was already partiality harvesting oxygen from the atmosphere. At this stage there were times when the oxygen tube would be reduced to zero level. Quite honestly after being on oxygen tube for over 40 days one gets to like it as it feels cool and reassuring to inhale it. It there for feels scary to be told that it would soon be disconnected! On 05/04/2021 I was finally disconnected from tube oxygen, and place under observation, and was then discharged after two days.

From the foregoing as based on my personal experience with COVID-19, I am at a loss as to what kind of other diseases I should compare it with. In terms of how humans pick it up, it shares some similarities with malaria parasites. It works this way: if you lock up a group of people into a room heavily infested by malaria bearing mosquitoes overnight, the results will come out over the next few days as follows: some will emerge scathe free, others will display, some mild body temperature rise or headache and some will go on to fall sick with malaria of varying intensities. But unlike the malaria parasites that are there in the body of its victim that must be fought and destroyed by drugs, COVID-19 simply destroys the human body and quits on its own, leaving no viruses to be fought.As for the COVID-19 virus there is as yet no antidote against it, so the victim gets treated not against COVID-19, but against injuries and disabilities inflicted by the disease. The nearest similarity to COVID-19 attack is that by either a lightning or an electrical current. As the current passes through the victim’s body it leaves a trail of destruction on the body. The victim is then treated against injuries caused by the electric current but not against electricity per say. I am still being treated against COVID-19 caused injuries, but the COVID-19 left me within 10 days after attacking me way back in February.

Doctors both in Juba as well as in Nairobi openly expressed surprise as to how I pulled it off against the odds I went through. My discharge report from The Nairobi Hospital reads in parts as follows: “On his presentation he appeared ill and dehydrated”. ” The patient had an HRCT on the way to the ICU which showed 90% lung involvement with bilateral diffuse ground glass opacities associated with crazy paving pattern in some areas and consolidated areas in both lower lobes. There was hardly any normal lung visible. There was calcification of the thoracic aorta. “He was given additional fluids and was started on Clexane 40mg SC OD, Pirfenidone 200 TDS, Medium 40mg IV BD and Solumedrol 90mg IV OD. The high dose steroid was in the hope of being able to decrease his fibrotic changes and get him off the ventilator”. “The patient did surprisingly well”.

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