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Roshan’s Story

In the month of November 2003 I was feeling unwell. I started to feel general malaise and loss of appetite and weight. Painful rashes started to appear around the soles of my feet, ears, cheeks and this exacerbated to an ulceration of my mouth. My parents initially thought this was part of the growing up process but they became concerned so arranged an appointment with my G.P.

Roshan's photo

I was diagnosed with flu and chilblains (because of the season) and was prescribed ointments for the rashes and antibiotics for the ulcer. Despite these symptoms, I still managed to go to school when I felt able and tried carrying on with normal activities but I did not expect what I was about to find out.

Weeks went by and my symptoms were getting progressively worse, so my parents suggested a blood test with my G.P. I went to my local A&E department to have the test and days later I received a phone call from the G.P with the results. At that point I began to feel concerned and asked my parents what was going on with my body.

The G.P revealed that the blood results were alarming and he had ordered a taxi for me to go to the local hospital immediately. In the A&E department, doctors were ordering blood tests and X-rays to see what was going on. At that stage I was worried and I did not understand the severity of my condition. The doctors admitted me for further investigation and I was frightened because it was my first time away from home and I had a lack of understanding about what was going to happen.

My health deteriorated even more while I was in hospital, which became a concern for the doctors because they could not pin point an exact diagnosis. It came to a point where I developed facial paralysis. This was a very frustrating period for me, I couldn’t drink from a cup, I had to use a straw and I was unable to communicate properly with anyone, which meant that I had to write everything down. A CT scan was then ordered to check if everything was functioning well.

The facilities of treatment were limited at the local hospital, so a doctor from Great Ormond Street (GOS) came to do a bone marrow biopsy to determine a diagnosis. With the result of the bloods and the biopsy, a final diagnosis concluded that I had Systemic Lupus Erythematosus (SLE), a condition that both my parents and I did not know what entailed. I was rushed to GOS to start treatment and sophisticated investigations. My family was very confused and worried because none of the medical team at the hospital was explaining anything but we assumed that if I was being transferred to GOS it must be serious.

It was a great strain on my parents because they had to go to work. From work my father would visit me, as for my mother, she would pick my brother up from school and take him to see me, while she would see me for a short while before going to work.

Times were very hard and we did not have any immediate family to support us but we all seemed to manage. Gradually my health started improving, I was hooked to a machine to wash my blood, a process known as a ‘Plasma Exchange’. I was also given a steroid called Methyl Prednisolone and a powerful anti rejection treatment called Cyclophosphamide, which made my hair fall out. Due to the severe weight loss, I had to drink some supplements, which helped me with the side effects of the steroid and also helped me to regain my appetite.

At this stage, I still didn’t understand my diagnosis until a nurse came to give an explanation. I was very inquisitive and asked a lot of questions for instance, “what was the prognosis of the condition?” The nurse was unable to give me a direct answer because each patient experienced different symptoms but she reassured me by writing to the society, Lupus UK to give me more advice.

My parents, who are nurses, had not heard of this condition before so they read through textbooks. They were puzzled as to how I became diagnosed with the illness and for a young male, aged ten at the time it was even more peculiar. The doctors ordered a kidney biopsy because my kidney function was not normal. Subsequently after that I caught an infection, E. coli.

My blood pressure deteriorated and I experienced nausea and diarrhea. I was unable to walk so I had physiotherapy and hydrotherapy to help me. I also had to have a seven-month course of Intravenous Cyclophosphamide, used to treat autoimmune disorders, which made me weak and nauseous.

I had spent Christmas and New Year in the hospital and after 2 months I was stable enough to go home. I had to adapt to a different lifestyle by taking medication and having regular visits to the hospital. My school life was an emotional roller coaster because I was in and out of hospital; often admitted in because my blood results were abnormal but they remained supportive and understood my condition.

Making friends throughout my academic years were difficult because I was very restricted on going out after school and doing sport activities. This made me frustrated at times but I tried to resolve it by doing other things to help me get through it. I never made the condition deter me from learning.

I always had a positive outlook towards my studies to achieve similar to my peers and beyond. I managed to complete my studies and I had the opportunity to go to University. I was a bit reluctant to go for health reasons and I thought that since I’d be away from home, if I did not complete my studies, I’d be left with the guilt of all that money spent by my parents so I decided to look for a job. I managed to get a job at Moorfields Eye Hospital, which was a great achievement for me. Having not been on holiday for over 10 years, my family was longing to visit home (Mauritius) but my health had prevailed us from going on a regular basis and this was very strenuous on us. Eventually we all managed to make a trip, we took precautions and we all had a well-deserved break.

In the year 2004, I had a severe relapse of my condition, I thought, “not again!” especially as I had just started a new job. This worried me because the tabloids had been highlighting the issue of sickness at work and this made me fear that I may lose my job.

I went into renal failure, also known as kidney failure so I had to have an expensive treatment that was still on trial, named Rituximab to reverse the damage. I had a kidney biopsy, which revealed that I had scaring and thrombosis so to treat it, I had to go on a medication called Warfarin. Due to the amount of steroids I had been taking, I developed Osteoporosis, corneal scaring out of my left eye, which meant that I could not see properly, as well as thyroid, inflamed piturity gland and skin problems.

I was prescribed different treatments and regular investigations to treat the list of ailments that I had acquired. I started to recover slowly but one the night I started to feel unwell with terrible pains and I was unable to get out of the chair. My parents took no chances and called for an ambulance. I went to the local casualty unit, where they gave me strong analgesics to dampen the pain but it didn't work. They ordered an MRI scan of my kidney and the results were not encouraging. They took my parents aside to have a conversation. I didn’t know what was going on, so a surgeon came to see me and explained that I was internally bleeding from the kidney. The only options were to remove the kidney but both my parents and I objected to that. They demanded that I go to Guys hospital to have the treatment there. I was escorted in the ambulance via police to the hospital.

At Guys, another surgeon had bad news to break; he had a long conversation with my parents. My parents were upset and they could not compose themselves to tell me that I was bleeding so much that I should say my goodbyes to all my relatives, as I might not survive the operation. That made me tremble and cry. I was very scared but with willpower, I decided to have the Laparotomy surgery that would hopefully stop the bleeding and thankfully, I managed to survive. I was in intensive care for a week; I was unaware that I was sedated for that length of time. Gradually I was improving and was able to be discharged.

During the month of April 2012, I was asked to have another kidney biopsy because my kidney function was abnormal. This time I wanted to make sure everything was safe because of my experience with the last biopsy. With hesitance, I had the procedure. Immediately after the biopsy I started to deteriorate rapidly. My blood pressure was irregular, my lungs were not functioning properly and as a result, they had to incubate me and insert a tracheotomy because I was internally bleeding. I suffered from infection after infection, from E. coli to Septicemia. It was a long battle, I was catheterised and drains were inserted; the pain I endured was unbearable. Strong analgesics were administered but it did not ease the pain. I was very emotional during the nine months

I was in intensive care and my family and friends were very supportive, which I am still grateful for. I was unaware that I was heavily sedated and my parents explained to me that I was incoherent unresponsive and confused. They also told me that I was temporarily on dialysis because I was building up fluid. Due to the prolonged infections, I had to have one kidney removed because it got very infected and eventually failed. This made me fearful and I began to continuously question whether I was going to be dependent on dialysis. The renal doctors reassured me that I was not and continuous renal profile blood tests were ordered to make sure my other kidney was functioning. My stomach was also perforated due to the Nepro nutritional supplement I was being fed, so I was unable to eat solids or fluids for some time. This made feel down as I was reliant on ice cubes at a minimum and was fed through a needle named Total parental Nutrition (TPN). Sometimes I had to cheat on the fluid intake just to make my life bearable.

I lay in bed for nine months so my stamina and limbs were not strong. I had intensive physiotherapy to reeducate me to walk again. This was tough for me sometimes and because of the pain I was suffering and the drains and catheter, I refused to get out of bed. It was very strenuous for me and I had not been eating, which made it worse. Finally, after nine months I was allowed to come home. This was a great relief for my family and I. With weekly physiotherapy and appointments at the hospital I gradually began to regain strength.

Due to the length of time catheterised I was unable to control my bowl and bladder movement, which was very debilitating and embarrassing for me. I was managing to walk a little distance and my aim was to go back to work soon but as I was about to return to work, I faced another setback, which was very distressing for me just as I was reaching the final hurdle. My left ankle started to hurt and I was in excruciating pain.

Fortunately, I had a routine appointment and they ordered an X-ray, which showed discouraging results so I was admitted. Due to the prolonged infection and being bedbound in intensive care, I developed necrotic left heel with plantar fasciitis, also known as jogger’s heel. I had to wear an air cast boot with two crutches to hop around. It was very difficult and frustrating to cope with. I thought to myself, “why me? Just as I am gradually beginning to walk again.” I was very restricted and found it hard to bare my body weight on my legs so I had to stay in my room. With determination, I started to walk with the assistance of the one crutch and the air cast boot. I still go for regular investigations and monitoring of my condition to make sure everything is functioning.

-A NOTE FROM ROSHAN-

I would recommend anyone who has been recently diagnosed with Lupus, to not let the disease take over you. Although you may not accept that you have a condition, try to understand the trigger points. Try to keep yourself busy and have a laugh, whether it is at home or with your work colleagues; this is what keeps me going from time to time. It can be lonely at times when people may not understand you, or how you’re feeling. Just because someone suffering with Lupus may look well on the exterior, inside they may be suffering and the fatigue they experience could be misinterpreted as being lazy.