My lupus journey started in 2009, shortly after turning 18 years old. I had always been a healthy child, and never had any health issues growing up. Then out of the blue, I started to feel some joint pains.
As an 18-year-old I just thought it was the way I slept or growing pains. Never did I think it could have been anything serious but, after weeks of constant pain, I booked an appointment with my GP. My GP gave me some anti-inflammatory tablets and said it should clear up, but it made no difference. If anything, the pain got worse.
This is when my life changed forever. I went back to my GP, and this time they referred me to Ealing Hospital, where I had to have a blood test and provide a urine sample. The doctor there told me that, due to the symptoms I was experiencing, he was 95% certain that I had lupus.
Now, at the time, I had no idea what lupus was. I did some research and found out lupus was an autoimmune disease which can affect parts of your body, e.g. skin, kidneys, joints, brain, heart and lungs.
In my case, it was my kidneys that were affected. As you can imagine, at 18 years old, just as my life was getting started, this was a big shock – not only for me but for my family. I was enjoying my life I was in sixth form, I had a partner at the time, was doing my driving lessons and was playing football for both my sixth form and my Sunday league teams.
It took me a long while to process all of this – I literally stayed in bed the whole of summer 2009. I was depressed and embarrassed to be around anyone, the only place I would really go was to the hospital for check-ups on my condition. One good thing, though, was I had two different treatments called Cyclophosphamide and Rituximab which were drips which helped my joint pains and I never experienced any symptoms again.
My kidneys managed to last about three years before I found out my kidney function was getting lower, and that I would need a kidney transplant. Family members were tested including my mum, gran and grandad, and thankfully my grandad was a match. After months of tests, we had a date set for the 13th of January 2012 for the transplant.
All went well with the procedure, and I started to get back to some sort of normality but, unfortunately, due to circumstances out of my hands, after about a year I was told the kidney was deteriorating and that I would need to start dialysis (dialysis is a procedure to remove waste product and excess fluid from the blood when the kidney stops working correctly). I had to have dialysis three times a week, for 4 hours at a time, for 10 months, while I was waiting for my second transplant. This time, my dad was tested and he was a match, so he donated his kidney to me in November 2013, thankfully, that kidney has managed to last for over 9 years – which is amazing, considering the things I have had to go through during this time.
In 2018 I was hospitalised for 6 months on and off, due to having lymphoma (which is cancerous cells), but after having weekly courses of Rituximab through a drip into my bloodstream, I managed to overcome this obstacle, despite having to learn to walk again with physiotherapy.
2019 was by far the worst time of my life due to me having 3 heart attacks and almost losing my life. This was caused by a clot in my heart. I am thankful every day that I am alive.
In 2021 I was in hospital for 4 months due to being weaned off some medication too fast and I even had to spend three weeks at a rehabilitation centre at another hospital, to regain muscle and strength in my legs.
Lastly in 2022 I one day suddenly started getting stomach pains. I was admitted to hospital and found out I had a perfused bowel. Doctors removed a metre of my bowel and formed a temporary ileostomy – I am waiting for a procedure to reverse this.
Also in 2022, I got married and as of January 2023, I am in the process of writing a book about my life and I also am also a peer leader for the young adult kidney group.
Finally, my message to anyone that suffers from lupus is that while there is not currently a cure for lupus, you can still go on to have a good quality of life and do anything you put your mind to don’t let this condition hold you back – minor setbacks, major comebacks!
Follow Khiry’s Journey HERE.