Chapter 3: Held Hostage in My Own Body
THERE IS WAR IN MY BODY: Chapter 3
TESTS AND MORE TESTS
After the ECG test the doctor told me that I had a BIG heart, and I said to her oh yes doctor I know, and that's true I have a very big heart and ladies always tell me that. She initially didn't pick the humour but after it sank in she laughed hysterically like a toddler. There were only two of us behind the curtains. I couldn't stop her hysteria and I didn't know either which button to press to stop her. I am sure people outside were wondering what was taking place behind closed curtains. I offered her my apologies for cracking her ribs and I blamed my big heart for that. She told me I was cute and that I was able to take away the job stresses and strains. She then told me that more tests needed to be done. After pulling the curtains off she instructed me to go back to my seat then she left. I mumbled the words thank you, but I doubt if she even heard me. I laid on the bed for less than a minute after she was gone then I, buttoned my shirt then looked for my stick and I left the examination room.
****
I had almost finished writing chapter 3 and wanted to edit one of the sections.i was so pissed off after realizing that I copied over the completed section and lost all the information. I was using my mobile phone so I can't redo. It was gone. If I was using a tablet I could have recovered. The application I was using didn't have that functionality. I had to start again. It required patience and dedication to start all over again. I told myself that I wasn't gonna stop I was focused like a marksman trying to neutralize the target. A bee can sting him on the face or sweat can drop into his eyes but still won't lose focus. I am generally a lazy writer or I just don't give it time and focus but when I do, naturally my creative juices start flowing. I will stop thinking, my brain goes on autopilot. I will be like Legion possessed with so many demons of creativity. The creativity becomes so strong that I can cut it with a knife. I can't guarantee that the lost material will be as good but I just recounted to the best of my ability.
Being in the hospital for a long time is draining. There are so many possibilities that one can contract airborne diseases like pneumonia, TB etc. This has the capability of making one's sickness multiply. I wasn't gonna be able to stomach another disease at that moment. I didn't observe any criteria the nurses used when putting a patient on a Ward. It appeared they just mixed patients regardless of their condition. I have never been to prison in my life but from what I have read and seen on television hospital feels the same. It is worse in my case because of the lack of mobility.
Nurses at Helen Joseph operated on shifts, the day shift started at 7 am until 7 pm then night shift kicked in. Since I came to Ward 15. I had a very good relationship with my night nurses. They respected and treated patients with dignity. Early in the morning, they would bring me warm water to bath. Always smiling regardless of how rowdy the patients were. The day nurses were like gangsters they didn't care. I started having these gangsters of nurses when the nurses were rotated. I didn't even know which Ward they are come from. If it was within my power I would have sent them packing back to where ever they came from. There were two male nurses on the day shift one was a sister and the other one was just an ordinary one. Naturally, if a male patient would want to go to the bathroom I would have thought a man would be willing to assist a man. These two were not like that. The nursing interns were very lovely whether it was male or female. I spend two days without visiting the bathroom and without bathing because no one seemed willing to help me. It was painful. I started thinking and I remembered when I was in school we were taught about Florence Nightingale. She lived and developed certain nursing principles that nurses should internalize, live by and practice. I started wondering what the nursing schools teach their students most of the day nurses seemed to be a cut from the same crap cloth. There were however few good apples among them. I used a container to pee whether it was day or night. Imagine asking for the container and you are pressed and the nurse takes donkey years to bring it, worse still emptying it. I accepted my predicament at the time. I hoped for change for these day nurses, so that they would take their crap elsewhere. I felt pity for the department they would go to.
***
The ER doctors were the first ones to draw blood from me for testing. I was thinking to myself then that day the blood tests were gonna provide all the answers needed about what I was feeling. All I wanted was for my blood to be analysed then boom the problem is detected. My first ER doctor was a beautiful woman and I guess that is where my path of association with beauty was born. When I was moved to ER Ward I lost count of how many blood tests were done on me. Averagely I had two blood sessions per day meaning they could either fill one tube or two. There was a day three tubes were collected but still, nothing came up. I started to wish that the doctors just find anything, cancer, pneumonia, TB, or kidneys. I was thinking something along with kidneys or cancer. Like I explained in the previous chapter that I had been having these premonitions. I guess I was just seeing things. I didn't understand why many blood tests were done without any positive results. In my layman understanding, I just thought they would just put the blood under the microscope then all those funny diseases would show. I then discovered that a specific sample was needed for a specific investigation. I couldn't ask the doctor why.
After about 3-4 days in the hospital, I started to feel that my left side facial muscles gave in. I started speaking with a slur, words were not coming out clear and my smile was now only one-sided which was the right side. My grinning, smiling, laughing, winking of the left eye were all affected. The eye was not closing properly and it would become dry because it wasn't blinking as much as normal or necessary. It became sensitive to light. Sometimes tears would just run on that left side. Doctors call this condition Bell's palsy. I had to do a google medical crush course. I had to learn medical terminology and conditions fast, and how to do facial physiotherapy. It wasn't a walk in the park. Doctors told me that with time the facial reflexes would be restored. Any spare time that I would have on hand I would do facial therapy. Misfortunes never come singly but in my case, it was a learning curve and hoped that I will be the light to others suffering from the same rare conditions. I realised that even if life throws lemons at you just crush them and make lemonade. Such is life and there is no reason to mourn about it.
All the blood tests came up with nothing and then neurologists came and took over they sent one of their own to my Ward to fetch me. When I got to the neurology department I was greeted by another young female white doctor vivacious and humorous.there was also another young female doctor who was assisting. I failed to understand why this positivism and jovial mood can't rub off to the nurses. Maybe this is something taught at medical school only and is non-existent at nursing school. The doctor asked me to lay on my back and she started sticking those same stickies they used on me when they were doing ECG test for my heart.
I laid on my back and pulled my pyjamas pants up so that the doctor could start her examination. It was like we were playing a game called do you feel my hands. I was giving out yes or no answers. She then connected her machine on my legs on a specific area then adjust the current between 18-100. Hundred was a shocker to me because electrical pulses were very strong. She was shocking my legs through my veins. The computer was recording every action and every shock, now and then they would stop shocking me and start discussing inconsistencies of the pattern they were measuring against. The shocking continued for about 45mins. At that moment I just wanted them to stop. Electrical currents are not a joke. I imagined torture as we see it on TV and imagined that the real deal is like a journey to hell and back.
DIAGNOSIS: Guillain-Barré syndrome or GBS syndrome.
When the neurologist finished what seemed to be a shocking escapade, she discussed with her other colleague the computer analyzed results. They were convinced that it was GBS Syndrome. To cement her finding she called her boss and explained to him the results, he then gave the green light of the diagnosis.
National Institute of neurological disorders and strokes defined GBS as follows:-"Guillain-Barré syndrome (GBS) is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances, the symmetrical weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed. In these cases, the disorder is life-threatening - potentially interfering with breathing and, at times, with blood pressure or heart rate - and is considered a medical emergency. Such an individual is often put on a ventilator to assist with breathing and is watched closely for problems such as an abnormal heartbeat, infections, blood clots, and high or low blood pressure. Most individuals, however, have good recovery from even the most severe cases of Guillain-Barré syndrome, although some continue to have a certain degree of weakness.
Guillain-Barré syndrome can affect anybody. It can strike at any age and both sexes are equally prone to the disorder. The syndrome is rare, however, afflicting only about one person in 100,000. Usually, Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally surgery will trigger the syndrome. Recently, some countries worldwide have reported an increased incidence of GBS following infection with the Zika virus. In rare instances, vaccinations may increase the risk of GBS.
People may experience:
Pain areas: in the muscles
Muscular: muscle weakness, abnormality walking, problems with coordination, or weakness of the arms and legs
Whole-body: fatigue or high blood pressure
Heart: abnormal heart rhythm or fast heart rate
Also common: difficulty raising the foot, difficulty swallowing, facial muscle weakness, impaired voice, shortness of breath, slow reflexes, uncomfortable tingling and burning, or urinary retention
Treatment consists of transfusions
Special blood treatments (plasma exchange and immunoglobulin therapy) can relieve symptoms. Physiotherapy is required."
After the nerve tests, the doctor just said it's GBS, it was Greek to me. I didn't even have the energy to ask questions my nerves were still painful. I just wanted to go and relax on my bed. I was wheeled back to Ward 15 by a nerves staffer. I was tired and in pain but was glad that finally someone knew what was wrong with me and that medication was gonna start. So it took all these doctors two and a half days to find the problem. I was not on any medication not even a panado on these two and a half days. I was admitted walking with my golf stick but my condition deteriorated. By now I couldn't even stand on my own, never mind walking. The condition was moving up from my legs going upwards. It felt like I had two 20kg tied on my legs. The nerve doctors prescribed immunoglobulin or just polygam in short. I started Polygram on 31 August 2017 to 04 September 2017, I was going to take 24g per day for 5 days through IV or simply drip. It came in bottles of 12g so I would take two bottles per day.
Wikipedia defined immunoglobin as follows, "An antibody (Ab), also known as an immunoglobulin (Ig),[1] is a large, Y-shaped protein produced mainly by plasma cells that are used by the immune system to neutralize pathogens such as pathogenic bacteria and viruses. The antibody recognizes a unique molecule of the pathogen, called an antigen, via the Fab's variable region.[2][3] Each tip of the "Y" of an antibody contains a paratope (analogous to a lock) that is specific for one particular epitope (similarly analogous to a key) on an antigen, allowing these two structures to bind together with precision. Using this binding mechanism, an antibody can tag a microbe or an infected cell for attack by other parts of the immune system, or can neutralize its target directly (for example, by blocking a part of a microbe that is essential for its invasion and survival). Depending on the antigen, the binding may impede the biological process causing the disease or may activate macrophages to destroy the foreign substance. The ability of an antibody to communicate with the other components of the immune system is mediated via its Fc region (located at the base of the "Y"), which contains a conserved glycosylation site involved in these interactions.[4] The production of antibodies is the main function of the humoral immune system.[5]...."
Polygam's main function is to stop the progression of the syndrome and it's very difficult to say if it has stopped. It is not a silver bullet rather nerves have to start healing and this is a natural process where the body restores itself, it happens at a snail's pace and there is no medication to speed up the nerve repair process. It requires patience and perseverance and dedication. Generally, all the days in the hospital are the same, they are militarized or rather follows set down routines. The day starts at four am, early morning tea, 6 am beds are made, doctors rounds begins, sleep again, porridge at 9 am followed by tea, sleep or relax, time for medication at 10 and 11:45 am lunch, visiting 3-5pm and supper at 4:30 pm, shift changes at 7 pm followed by medication. This is pretty much what happens a day in the hospital at Helen Joseph
*****
My main doctor came on the next doctor's rounds, he was in the company of the pretty beautiful doctor whose hands connected with my soul. She didn't say much on that day she glanced at me about once or twice. I wished I could read her mind, and then read what was hidden in her heart. Which I assumed was pretty too. My doctor asked me if I had a smartphone. My answer was affirmative. He told me to google GBS SYNDROME so that if I had any questions we would discuss them the next day. I started googling whilst they were on my bed. They wished me a pleasant day then they left.
Progress was barely visible, after a few days since I finished the Immunoglobulin therapy. I was sure by now that all my folks knew that this condition can't be treated but rather reversed. Recovery is individual specific. It differs in different cases. Some recover pretty much faster and regain functionality pretty quick. Whereas others will remain with pretty bad battle scars. I am positive that I will be fine. My palms are still tingling and arms still have not enough strength. My hands feel felt like there were some crawling insects under the skin.
On Sunday 10 September 2017 during visitation hour my aunt Martha, three friends came to see me and one of them brought his wife and kid. Visitation hours were so refreshing because it took away the prison environment. We discussed various issues from my health, domestic politics and the politics of our home country. I was still very tired from the physio of the past three days. After they left supper was served by a lady with a beautiful soul, a real African woman, humble, respectful and down to earth. This lady must have a degree in working with people. She had the right attitude, always smiled and was chocolate dark beauty. Her job was cleaning and serving breakfast, lunch and supper which we eat at 5 pm. Each time she entered the room she was always bubbly, cheerful and greeted everyone in all the South African official languages. She made it her job to make sure everyone ate before she collected the plates. I know that an attitude is like a flat tyre and one won't go anywhere unless if the tyre was changed. After finishing serving and collecting plates she told us that it was her last day. I told her it wasn't fair for us and why couldn't her bosses take those other women with stinking attitude to go to the other Ward. She told me it wasn't for her to decide and she had to go back to her Ward. We were all saddened and however wished her the best.
I was humbled by Angie Chikwanda after learning about my sickness on Facebook she contacted me and we started chatting. I worked with her at the then one of the biggest indigenous financial Institution in Zimbabwe for about ten years. I realised the true value of friendship. Being in the hospital is a trying time and needs support from friends and family. She called me and told me that her mother, sister and hubby were going to come to visit me. I thanked her for that and as per her words the three visited and offered prayers. It was an amazing moment for me.
****
I believed then that my story wasn't sad but rather it is a story of inspiration. It wasn't a story of sympathy but of hope, belief in God and healing. All I wanted was for my story to be the light in the world so that it would shine upon many people, then they get inspired and get healed. i wanted them to write their own stories. As rare as the condition was many people are either misdiagnosed or do not even get help. Some will believe that their sickness was an act of witchcraft. Whilst others are sent home because either clinics or hospitals cannot assist them
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During the early days of my sickness, I would worry so much about the impact of my death. It wasn't because of my fear of death but the pain my death would cause in my family. I lost my young sister in February of 2017 it would have been unbearable if I were to die in August or September of 2017. Death affects those who remain behind not the one who dies. I am the eldest followed by my young brother Kuda and the sister Rumbi who passed on in February 2017. And my lovely eight-year-old niece. She was very worried when she heard I was in the hospital. On the flip side of it, I have a big nucleus maternal family full of brothers and sisters who overflows with love. I realised early in my sickness that acceptance was divine. No matter whatever situation one is in, it's important to accept one's situation, condition or disease. This brings inner peace and internal healing. Even accepting that you will eventually die. I resigned to my fate but did not lose hope. I strongly believe that TIME is what kills people not sickness. I have seen people coming out of the intensive care unit (ICU) and those that are as fit as a fiddle dying. I had four scenarios I was faced with to choose from, Death, Paralysis of the whole body or partial or full recovery and semi recovery with partial paralysis.
The easiest choice was death followed by recovery. I juggled the four options like football. I then accepted the eventuality of any of them. Above everything, I told my soul, body and mind that I would walk out of the hospital. I was not going to die or get paralyzed. My mind, soul and body knew that there was only one option, which was walking out of the hospital and full recovery. That was my plan A, B, C and D and nothing else.
Accepting your situation is empowering and liberating. It takes the whole weight from you. My humble observation was that most of the diseases that kill people are not as dangerous and as scary as people portray them, accepting one's situation does not mean giving up and waiting for death.
Algorithm triage system
Wikipedia defined triage,' as the process of determining the priority of patients' treatments based on the severity of their condition. This rations patient treatment efficiently when resources are insufficient for all to be treated immediately. The term comes from the French verb trier, meaning to separate, sift or select.[1] Triage may result in determining the order and priority of emergency treatment, the order and priority of emergency transport, or the transport destination for the patient.....' So there are different colours used ie Red, Orange, Yellow & Blue as per Helen Joseph Hospital. Since I stepped into the ER I was categorized a Yellow patient. My blood pressure was measured after every thirty minutes or hour for four hours depending on the last reading. And the vitals were to be checked the same way. If there was still warning signs then the doctor would have to be called. Red and orange were the more serious ones and they were nursed in the high care cubicle.
My blood pressure was inconsistent, it was like a see-saw or a swing. The other minute it's up and the next it's down. It was as frustrating to me as it was to the doctors because they couldn't understand the cause of this pattern and why it was going up given that I didn't have any BP condition before my admission. So a series of tests were done ever since I stepped into the ER.
LEARNING TO WALK AGAIN
I started physiotherapy a few days after I completed my 5-day Polygam treatment. I never skipped ever since then, the two physio ladies come every day. We did different exercises for different muscles then they would leave me with the homework of exercises to work on. I always pushed myself and did more after our session. I continued with my training on my bed and with my walker walking around as painful as it was. Like Jesus turned water into wine that's how I felt when I was standing on the walker for the first time. It was effortless and I felt strength and control on my legs. It was a Eureka moment for me and that gave me hope for the first time in a long while. My legs didn't have any iota of strength before this moment. They were so weak I couldn't even stand without holding on to something. I had some degree of control of the legs. I saw hope and light at the end of the tunnel.
It was on 6 September 2017 when I started physiotherapy. Kate from physio ie OT(Occupational Therapy department.) came through we spent about 15 mins doing some basic exercises. She told me I could do as many times as I could. She explained that the muscles have to be reconfigured. After she left I continued with the exercises like I was possessed it was painful and draining but still I didn't want to stop. It was frustrating relearning something that I once was able to do effortlessly for the past thirty years or so. Like a rabid dog, I forced myself until I could feel the pain of the muscles.
On the second day of physio, Kate came with another lady Kayleigh her colleague. Kayleigh specialises the upper body. We continued with the exercises. I walked with the help of a walker. It wasn't easy but there are times when a man has gotta do what a man has gotta do. Just like any form of exercises, it's painful and also the effects are felt the next day. I knew that no pain no gain so I just had to force myself. That was the only option I had and like Gideon Gono once said, "failure is not an option" in his Casino economy book. GBS condition damages the nerves so when the brain sends signals to the lower parts of the body, the signals will be incomplete. It's like an electrical gadget with broken or faulty wires it won't function properly or at all. I understood totally that my recovery was dependent on physiotherapy.
On the 8th of September, I was woken up at 4 am as usual for bathing. The tea lady also came after I had just finished wiping and with her pitchy voice shouted tea or coffee my usual was tea. At around 6 am the nurses came with medication and we had tea again, one slice of brown bread and a small cup of tea. I survived the food and diet thus far. Around 10 am I asked the male sister to assist me with the bathroom. He came to my bed and asked me why he should assist me because I had a walking frame. I told him I couldn't walk I needed a wheelchair or something to take me there. He came back with something that looked like a moving toilet seat. I jerked myself from the bed on to the trolley and he wheeled me to the bathroom. A toilet is an intimate place, each time I asked someone to take me there, it bit a chunk of my self-esteem and to this day I am not even sure what's left. When in the bathroom I told him to wheel me in and close the door. Physiotherapy sucks all the energy out of one's body. At that moment I relied upon my arms for shifting but that day they were weak after the physiotherapy session with Kayleigh. He told me to press the nurse call system button when I was done. I struggled to pull the pyjamas down. I had to be strong there are certain things you can't ask for help. It used up all my remaining energy. Out of all the challenges I have had in my 39 years of living this was the hardest. I managed to pull them down after what seemed like an eternity or experience from hell. When I was done I then started the reverse struggle again of pulling pyjamas pants on. I barely managed then started the process of seating on the trolley with a toilet seat. During the struggle, I fell then hit the alarm button with my head. There was no strength left in my legs and my arms. My arms couldn't pull my body and my legs didn't have the strength to balance my body. I had to be a man. The nurse came running and regretted. All the time he was saying, 'but I told you to call me when you are done'. He grabbed my shoulder so that I couldn't go down to the ground. I told him I was sorry but I didn't want to put him in a difficult position. I was lucky not to be injured or it was by the Grace of God. He then wheeled me back to my bed. I then rested for some few minutes then speech therapist came. Followed by Kayleigh the physiotherapist for another session.
*****
The speech therapist came on 08 September 2017 she did a lot of physical tests, swallowing etc. when I swallow water or saliva I felt like something was stuck in my throat. She was upset why she wasn't advised in the time since it was highlighted on the 4th that she must come to see me. She concluded that I should see ENT Doctors (Ear, Nose & Throat ) she then booked it for 14 September 2017. After that, she wished me a happy weekend and said she was coming again on Monday
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Monday came and the speech therapist showed up as promised. When God created her, he threw away all the crap and made sure that he used the best. She was Indian.we repeated the tests. I guessed she wanted to make sure that there was a need for me to have a date with ENT Doctors. My main doctor came very early in the morning and I did not doubt in my mind that he wants to see me gone. As in going home or rehabilitation centre. The nurses' issue medication based on the script the doctor write which is found in the file. A day before the nurse told me that my script was finished and my doctor had to write another one for my BP tablets. I told him the moment he showed up and he said his junior doctor would write it. He liked calling these junior doctors his interns. Both the intern Dr and my doctor forgot to write a new script and I spend that day without hypertensive tablets, the BP didn't even go up then I told myself that one day I will not take these tablets. I am not a fan of tablets.
On the 14 September 2017 my speech therapist had booked an appointment for me to see ENT Drs. She came in the morning of that day and advised me that my appointment was at 1 pm so the sisters were told to bring me without fail to their department. ENT closed at 2 pm and only operated Tuesdays and Thursdays. Surely by 1320 hrs sister Anza took me there. The consulting room was packed and we were told to wait inside whilst they cleared off other patients.
TESTS AND MORE TESTS
After the ECG test the doctor told me that I had a BIG heart, and I said to her oh yes doctor I know, and that's true I have a very big heart and ladies always tell me that. She initially didn't pick the humour but after it sank in she laughed hysterically like a toddler. There were only two of us behind the curtains. I couldn't stop her hysteria and I didn't know either which button to press to stop her. I am sure people outside were wondering what was taking place behind closed curtains. I offered her my apologies for cracking her ribs and I blamed my big heart for that. She told me I was cute and that I was able to take away the job stresses and strains. She then told me that more tests needed to be done. After pulling the curtains off she instructed me to go back to my seat then she left. I mumbled the words thank you, but I doubt if she even heard me. I laid on the bed for less than a minute after she was gone then I, buttoned my shirt then looked for my stick and I left the examination room.
****
I had almost finished writing chapter 3 and wanted to edit one of the sections.i was so pissed off after realizing that I copied over the completed section and lost all the information. I was using my mobile phone so I can't redo. It was gone. If I was using a tablet I could have recovered. The application I was using didn't have that functionality. I had to start again. It required patience and dedication to start all over again. I told myself that I wasn't gonna stop I was focused like a marksman trying to neutralize the target. A bee can sting him on the face or sweat can drop into his eyes but still won't lose focus. I am generally a lazy writer or I just don't give it time and focus but when I do, naturally my creative juices start flowing. I will stop thinking, my brain goes on autopilot. I will be like Legion possessed with so many demons of creativity. The creativity becomes so strong that I can cut it with a knife. I can't guarantee that the lost material will be as good but I just recounted to the best of my ability.
Being in the hospital for a long time is draining. There are so many possibilities that one can contract airborne diseases like pneumonia, TB etc. This has the capability of making one's sickness multiply. I wasn't gonna be able to stomach another disease at that moment. I didn't observe any criteria the nurses used when putting a patient on a Ward. It appeared they just mixed patients regardless of their condition. I have never been to prison in my life but from what I have read and seen on television hospital feels the same. It is worse in my case because of the lack of mobility.
Nurses at Helen Joseph operated on shifts, the day shift started at 7 am until 7 pm then night shift kicked in. Since I came to Ward 15. I had a very good relationship with my night nurses. They respected and treated patients with dignity. Early in the morning, they would bring me warm water to bath. Always smiling regardless of how rowdy the patients were. The day nurses were like gangsters they didn't care. I started having these gangsters of nurses when the nurses were rotated. I didn't even know which Ward they are come from. If it was within my power I would have sent them packing back to where ever they came from. There were two male nurses on the day shift one was a sister and the other one was just an ordinary one. Naturally, if a male patient would want to go to the bathroom I would have thought a man would be willing to assist a man. These two were not like that. The nursing interns were very lovely whether it was male or female. I spend two days without visiting the bathroom and without bathing because no one seemed willing to help me. It was painful. I started thinking and I remembered when I was in school we were taught about Florence Nightingale. She lived and developed certain nursing principles that nurses should internalize, live by and practice. I started wondering what the nursing schools teach their students most of the day nurses seemed to be a cut from the same crap cloth. There were however few good apples among them. I used a container to pee whether it was day or night. Imagine asking for the container and you are pressed and the nurse takes donkey years to bring it, worse still emptying it. I accepted my predicament at the time. I hoped for change for these day nurses, so that they would take their crap elsewhere. I felt pity for the department they would go to.
***
The ER doctors were the first ones to draw blood from me for testing. I was thinking to myself then that day the blood tests were gonna provide all the answers needed about what I was feeling. All I wanted was for my blood to be analysed then boom the problem is detected. My first ER doctor was a beautiful woman and I guess that is where my path of association with beauty was born. When I was moved to ER Ward I lost count of how many blood tests were done on me. Averagely I had two blood sessions per day meaning they could either fill one tube or two. There was a day three tubes were collected but still, nothing came up. I started to wish that the doctors just find anything, cancer, pneumonia, TB, or kidneys. I was thinking something along with kidneys or cancer. Like I explained in the previous chapter that I had been having these premonitions. I guess I was just seeing things. I didn't understand why many blood tests were done without any positive results. In my layman understanding, I just thought they would just put the blood under the microscope then all those funny diseases would show. I then discovered that a specific sample was needed for a specific investigation. I couldn't ask the doctor why.
After about 3-4 days in the hospital, I started to feel that my left side facial muscles gave in. I started speaking with a slur, words were not coming out clear and my smile was now only one-sided which was the right side. My grinning, smiling, laughing, winking of the left eye were all affected. The eye was not closing properly and it would become dry because it wasn't blinking as much as normal or necessary. It became sensitive to light. Sometimes tears would just run on that left side. Doctors call this condition Bell's palsy. I had to do a google medical crush course. I had to learn medical terminology and conditions fast, and how to do facial physiotherapy. It wasn't a walk in the park. Doctors told me that with time the facial reflexes would be restored. Any spare time that I would have on hand I would do facial therapy. Misfortunes never come singly but in my case, it was a learning curve and hoped that I will be the light to others suffering from the same rare conditions. I realised that even if life throws lemons at you just crush them and make lemonade. Such is life and there is no reason to mourn about it.
All the blood tests came up with nothing and then neurologists came and took over they sent one of their own to my Ward to fetch me. When I got to the neurology department I was greeted by another young female white doctor vivacious and humorous.there was also another young female doctor who was assisting. I failed to understand why this positivism and jovial mood can't rub off to the nurses. Maybe this is something taught at medical school only and is non-existent at nursing school. The doctor asked me to lay on my back and she started sticking those same stickies they used on me when they were doing ECG test for my heart.
I laid on my back and pulled my pyjamas pants up so that the doctor could start her examination. It was like we were playing a game called do you feel my hands. I was giving out yes or no answers. She then connected her machine on my legs on a specific area then adjust the current between 18-100. Hundred was a shocker to me because electrical pulses were very strong. She was shocking my legs through my veins. The computer was recording every action and every shock, now and then they would stop shocking me and start discussing inconsistencies of the pattern they were measuring against. The shocking continued for about 45mins. At that moment I just wanted them to stop. Electrical currents are not a joke. I imagined torture as we see it on TV and imagined that the real deal is like a journey to hell and back.
DIAGNOSIS: Guillain-Barré syndrome or GBS syndrome.
When the neurologist finished what seemed to be a shocking escapade, she discussed with her other colleague the computer analyzed results. They were convinced that it was GBS Syndrome. To cement her finding she called her boss and explained to him the results, he then gave the green light of the diagnosis.
National Institute of neurological disorders and strokes defined GBS as follows:-"Guillain-Barré syndrome (GBS) is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances, the symmetrical weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed. In these cases, the disorder is life-threatening - potentially interfering with breathing and, at times, with blood pressure or heart rate - and is considered a medical emergency. Such an individual is often put on a ventilator to assist with breathing and is watched closely for problems such as an abnormal heartbeat, infections, blood clots, and high or low blood pressure. Most individuals, however, have good recovery from even the most severe cases of Guillain-Barré syndrome, although some continue to have a certain degree of weakness.
Guillain-Barré syndrome can affect anybody. It can strike at any age and both sexes are equally prone to the disorder. The syndrome is rare, however, afflicting only about one person in 100,000. Usually, Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally surgery will trigger the syndrome. Recently, some countries worldwide have reported an increased incidence of GBS following infection with the Zika virus. In rare instances, vaccinations may increase the risk of GBS.
People may experience:
Pain areas: in the muscles
Muscular: muscle weakness, abnormality walking, problems with coordination, or weakness of the arms and legs
Whole-body: fatigue or high blood pressure
Heart: abnormal heart rhythm or fast heart rate
Also common: difficulty raising the foot, difficulty swallowing, facial muscle weakness, impaired voice, shortness of breath, slow reflexes, uncomfortable tingling and burning, or urinary retention
Treatment consists of transfusions
Special blood treatments (plasma exchange and immunoglobulin therapy) can relieve symptoms. Physiotherapy is required."
After the nerve tests, the doctor just said it's GBS, it was Greek to me. I didn't even have the energy to ask questions my nerves were still painful. I just wanted to go and relax on my bed. I was wheeled back to Ward 15 by a nerves staffer. I was tired and in pain but was glad that finally someone knew what was wrong with me and that medication was gonna start. So it took all these doctors two and a half days to find the problem. I was not on any medication not even a panado on these two and a half days. I was admitted walking with my golf stick but my condition deteriorated. By now I couldn't even stand on my own, never mind walking. The condition was moving up from my legs going upwards. It felt like I had two 20kg tied on my legs. The nerve doctors prescribed immunoglobulin or just polygam in short. I started Polygram on 31 August 2017 to 04 September 2017, I was going to take 24g per day for 5 days through IV or simply drip. It came in bottles of 12g so I would take two bottles per day.
Wikipedia defined immunoglobin as follows, "An antibody (Ab), also known as an immunoglobulin (Ig),[1] is a large, Y-shaped protein produced mainly by plasma cells that are used by the immune system to neutralize pathogens such as pathogenic bacteria and viruses. The antibody recognizes a unique molecule of the pathogen, called an antigen, via the Fab's variable region.[2][3] Each tip of the "Y" of an antibody contains a paratope (analogous to a lock) that is specific for one particular epitope (similarly analogous to a key) on an antigen, allowing these two structures to bind together with precision. Using this binding mechanism, an antibody can tag a microbe or an infected cell for attack by other parts of the immune system, or can neutralize its target directly (for example, by blocking a part of a microbe that is essential for its invasion and survival). Depending on the antigen, the binding may impede the biological process causing the disease or may activate macrophages to destroy the foreign substance. The ability of an antibody to communicate with the other components of the immune system is mediated via its Fc region (located at the base of the "Y"), which contains a conserved glycosylation site involved in these interactions.[4] The production of antibodies is the main function of the humoral immune system.[5]...."
Polygam's main function is to stop the progression of the syndrome and it's very difficult to say if it has stopped. It is not a silver bullet rather nerves have to start healing and this is a natural process where the body restores itself, it happens at a snail's pace and there is no medication to speed up the nerve repair process. It requires patience and perseverance and dedication. Generally, all the days in the hospital are the same, they are militarized or rather follows set down routines. The day starts at four am, early morning tea, 6 am beds are made, doctors rounds begins, sleep again, porridge at 9 am followed by tea, sleep or relax, time for medication at 10 and 11:45 am lunch, visiting 3-5pm and supper at 4:30 pm, shift changes at 7 pm followed by medication. This is pretty much what happens a day in the hospital at Helen Joseph
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My main doctor came on the next doctor's rounds, he was in the company of the pretty beautiful doctor whose hands connected with my soul. She didn't say much on that day she glanced at me about once or twice. I wished I could read her mind, and then read what was hidden in her heart. Which I assumed was pretty too. My doctor asked me if I had a smartphone. My answer was affirmative. He told me to google GBS SYNDROME so that if I had any questions we would discuss them the next day. I started googling whilst they were on my bed. They wished me a pleasant day then they left.
Progress was barely visible, after a few days since I finished the Immunoglobulin therapy. I was sure by now that all my folks knew that this condition can't be treated but rather reversed. Recovery is individual specific. It differs in different cases. Some recover pretty much faster and regain functionality pretty quick. Whereas others will remain with pretty bad battle scars. I am positive that I will be fine. My palms are still tingling and arms still have not enough strength. My hands feel felt like there were some crawling insects under the skin.
On Sunday 10 September 2017 during visitation hour my aunt Martha, three friends came to see me and one of them brought his wife and kid. Visitation hours were so refreshing because it took away the prison environment. We discussed various issues from my health, domestic politics and the politics of our home country. I was still very tired from the physio of the past three days. After they left supper was served by a lady with a beautiful soul, a real African woman, humble, respectful and down to earth. This lady must have a degree in working with people. She had the right attitude, always smiled and was chocolate dark beauty. Her job was cleaning and serving breakfast, lunch and supper which we eat at 5 pm. Each time she entered the room she was always bubbly, cheerful and greeted everyone in all the South African official languages. She made it her job to make sure everyone ate before she collected the plates. I know that an attitude is like a flat tyre and one won't go anywhere unless if the tyre was changed. After finishing serving and collecting plates she told us that it was her last day. I told her it wasn't fair for us and why couldn't her bosses take those other women with stinking attitude to go to the other Ward. She told me it wasn't for her to decide and she had to go back to her Ward. We were all saddened and however wished her the best.
I was humbled by Angie Chikwanda after learning about my sickness on Facebook she contacted me and we started chatting. I worked with her at the then one of the biggest indigenous financial Institution in Zimbabwe for about ten years. I realised the true value of friendship. Being in the hospital is a trying time and needs support from friends and family. She called me and told me that her mother, sister and hubby were going to come to visit me. I thanked her for that and as per her words the three visited and offered prayers. It was an amazing moment for me.
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I believed then that my story wasn't sad but rather it is a story of inspiration. It wasn't a story of sympathy but of hope, belief in God and healing. All I wanted was for my story to be the light in the world so that it would shine upon many people, then they get inspired and get healed. i wanted them to write their own stories. As rare as the condition was many people are either misdiagnosed or do not even get help. Some will believe that their sickness was an act of witchcraft. Whilst others are sent home because either clinics or hospitals cannot assist them
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During the early days of my sickness, I would worry so much about the impact of my death. It wasn't because of my fear of death but the pain my death would cause in my family. I lost my young sister in February of 2017 it would have been unbearable if I were to die in August or September of 2017. Death affects those who remain behind not the one who dies. I am the eldest followed by my young brother Kuda and the sister Rumbi who passed on in February 2017. And my lovely eight-year-old niece. She was very worried when she heard I was in the hospital. On the flip side of it, I have a big nucleus maternal family full of brothers and sisters who overflows with love. I realised early in my sickness that acceptance was divine. No matter whatever situation one is in, it's important to accept one's situation, condition or disease. This brings inner peace and internal healing. Even accepting that you will eventually die. I resigned to my fate but did not lose hope. I strongly believe that TIME is what kills people not sickness. I have seen people coming out of the intensive care unit (ICU) and those that are as fit as a fiddle dying. I had four scenarios I was faced with to choose from, Death, Paralysis of the whole body or partial or full recovery and semi recovery with partial paralysis.
The easiest choice was death followed by recovery. I juggled the four options like football. I then accepted the eventuality of any of them. Above everything, I told my soul, body and mind that I would walk out of the hospital. I was not going to die or get paralyzed. My mind, soul and body knew that there was only one option, which was walking out of the hospital and full recovery. That was my plan A, B, C and D and nothing else.
Accepting your situation is empowering and liberating. It takes the whole weight from you. My humble observation was that most of the diseases that kill people are not as dangerous and as scary as people portray them, accepting one's situation does not mean giving up and waiting for death.
Algorithm triage system
Wikipedia defined triage,' as the process of determining the priority of patients' treatments based on the severity of their condition. This rations patient treatment efficiently when resources are insufficient for all to be treated immediately. The term comes from the French verb trier, meaning to separate, sift or select.[1] Triage may result in determining the order and priority of emergency treatment, the order and priority of emergency transport, or the transport destination for the patient.....' So there are different colours used ie Red, Orange, Yellow & Blue as per Helen Joseph Hospital. Since I stepped into the ER I was categorized a Yellow patient. My blood pressure was measured after every thirty minutes or hour for four hours depending on the last reading. And the vitals were to be checked the same way. If there was still warning signs then the doctor would have to be called. Red and orange were the more serious ones and they were nursed in the high care cubicle.
My blood pressure was inconsistent, it was like a see-saw or a swing. The other minute it's up and the next it's down. It was as frustrating to me as it was to the doctors because they couldn't understand the cause of this pattern and why it was going up given that I didn't have any BP condition before my admission. So a series of tests were done ever since I stepped into the ER.
LEARNING TO WALK AGAIN
I started physiotherapy a few days after I completed my 5-day Polygam treatment. I never skipped ever since then, the two physio ladies come every day. We did different exercises for different muscles then they would leave me with the homework of exercises to work on. I always pushed myself and did more after our session. I continued with my training on my bed and with my walker walking around as painful as it was. Like Jesus turned water into wine that's how I felt when I was standing on the walker for the first time. It was effortless and I felt strength and control on my legs. It was a Eureka moment for me and that gave me hope for the first time in a long while. My legs didn't have any iota of strength before this moment. They were so weak I couldn't even stand without holding on to something. I had some degree of control of the legs. I saw hope and light at the end of the tunnel.
It was on 6 September 2017 when I started physiotherapy. Kate from physio ie OT(Occupational Therapy department.) came through we spent about 15 mins doing some basic exercises. She told me I could do as many times as I could. She explained that the muscles have to be reconfigured. After she left I continued with the exercises like I was possessed it was painful and draining but still I didn't want to stop. It was frustrating relearning something that I once was able to do effortlessly for the past thirty years or so. Like a rabid dog, I forced myself until I could feel the pain of the muscles.
On the second day of physio, Kate came with another lady Kayleigh her colleague. Kayleigh specialises the upper body. We continued with the exercises. I walked with the help of a walker. It wasn't easy but there are times when a man has gotta do what a man has gotta do. Just like any form of exercises, it's painful and also the effects are felt the next day. I knew that no pain no gain so I just had to force myself. That was the only option I had and like Gideon Gono once said, "failure is not an option" in his Casino economy book. GBS condition damages the nerves so when the brain sends signals to the lower parts of the body, the signals will be incomplete. It's like an electrical gadget with broken or faulty wires it won't function properly or at all. I understood totally that my recovery was dependent on physiotherapy.
On the 8th of September, I was woken up at 4 am as usual for bathing. The tea lady also came after I had just finished wiping and with her pitchy voice shouted tea or coffee my usual was tea. At around 6 am the nurses came with medication and we had tea again, one slice of brown bread and a small cup of tea. I survived the food and diet thus far. Around 10 am I asked the male sister to assist me with the bathroom. He came to my bed and asked me why he should assist me because I had a walking frame. I told him I couldn't walk I needed a wheelchair or something to take me there. He came back with something that looked like a moving toilet seat. I jerked myself from the bed on to the trolley and he wheeled me to the bathroom. A toilet is an intimate place, each time I asked someone to take me there, it bit a chunk of my self-esteem and to this day I am not even sure what's left. When in the bathroom I told him to wheel me in and close the door. Physiotherapy sucks all the energy out of one's body. At that moment I relied upon my arms for shifting but that day they were weak after the physiotherapy session with Kayleigh. He told me to press the nurse call system button when I was done. I struggled to pull the pyjamas down. I had to be strong there are certain things you can't ask for help. It used up all my remaining energy. Out of all the challenges I have had in my 39 years of living this was the hardest. I managed to pull them down after what seemed like an eternity or experience from hell. When I was done I then started the reverse struggle again of pulling pyjamas pants on. I barely managed then started the process of seating on the trolley with a toilet seat. During the struggle, I fell then hit the alarm button with my head. There was no strength left in my legs and my arms. My arms couldn't pull my body and my legs didn't have the strength to balance my body. I had to be a man. The nurse came running and regretted. All the time he was saying, 'but I told you to call me when you are done'. He grabbed my shoulder so that I couldn't go down to the ground. I told him I was sorry but I didn't want to put him in a difficult position. I was lucky not to be injured or it was by the Grace of God. He then wheeled me back to my bed. I then rested for some few minutes then speech therapist came. Followed by Kayleigh the physiotherapist for another session.
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The speech therapist came on 08 September 2017 she did a lot of physical tests, swallowing etc. when I swallow water or saliva I felt like something was stuck in my throat. She was upset why she wasn't advised in the time since it was highlighted on the 4th that she must come to see me. She concluded that I should see ENT Doctors (Ear, Nose & Throat ) she then booked it for 14 September 2017. After that, she wished me a happy weekend and said she was coming again on Monday
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Monday came and the speech therapist showed up as promised. When God created her, he threw away all the crap and made sure that he used the best. She was Indian.we repeated the tests. I guessed she wanted to make sure that there was a need for me to have a date with ENT Doctors. My main doctor came very early in the morning and I did not doubt in my mind that he wants to see me gone. As in going home or rehabilitation centre. The nurses' issue medication based on the script the doctor write which is found in the file. A day before the nurse told me that my script was finished and my doctor had to write another one for my BP tablets. I told him the moment he showed up and he said his junior doctor would write it. He liked calling these junior doctors his interns. Both the intern Dr and my doctor forgot to write a new script and I spend that day without hypertensive tablets, the BP didn't even go up then I told myself that one day I will not take these tablets. I am not a fan of tablets.
On the 14 September 2017 my speech therapist had booked an appointment for me to see ENT Drs. She came in the morning of that day and advised me that my appointment was at 1 pm so the sisters were told to bring me without fail to their department. ENT closed at 2 pm and only operated Tuesdays and Thursdays. Surely by 1320 hrs sister Anza took me there. The consulting room was packed and we were told to wait inside whilst they cleared off other patients.
I was called in and then the Nigerian doctor started asking me questions about my condition and I explained all I knew. He was amazed but kept on saying I was far better than the cases he had dealt with before. He even hinted misdiagnosis I was worried but I told him I had immunoglobulin treatment and was recovering. The white doctor told her colleague that she was gonna do the G-Scope. The instrument was long and had a camera and light at the tip or end. I was wondering how this thing was going to enter my body.
The female doctor then asked me whether I had a blocked nose or not, of which I told her my left one was blocked due to sinuses. She told me she was going to insert the camera through my right nose. I cringed I was wondering how on earth was this gonna happen. I hesitated for a moment and she picked it, then started telling me that she had had the procedure done on her more than five times. That gave me little hope and confidence. The other beautiful doctor held my head up straight whilst the other white female doctor started inserting the camera in.
She sprayed some substance into that right nose for numbing but I still felt pain. It was the most uncomfortable thing that had ever been done to me. I felt like I was gonna die. The doctor hit so many brick walls inside my nose and that was painful. She tried about five times without success, it was the longest time of my life. She stopped then she left the room to go and call another doctor. He came and appeared to know what he was doing.
The pain was the same but at least the camera was going in. I wanted to throw up and I couldn't breathe and he constantly told me to breathe through my nose. My tears started rolling on their own, I was gagging but the doctor didn't stop. If I had energy then I would have pulled that camera off down my throat. These doctors wanted to see why I felt like there was a lump in my throat. The doctor took what seemed to be like eternity inspecting my throat. When he was done he pulled slowly the camera, the pain was the same for me I thought I was losing my faculties.
Doctors have this tendency of apologizing after doing a procedure and am not sure if they were taught this at medical school or generally all doctors are compassionate. The sister came in and then wheeled me off in a wheelchair back to Ward 15, when I reached the Ward I laid on my back with cotton wool on my right nose feeling tired and worked out ten minutes later it was visiting hour at 3 pm.
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