"My name is Fez and I was born with renal failure, spending a lot of my life in and out of hospital.
Kidney disease has affected my whole life and the decisions and actions I take on a day-to-day basis. I was born with a condition called reflux nephropathy, which means that urine I was producing flowed back to my kidneys as my bladder was not emptying as it should do. This meant that my bladder was expanding, ultimately damaging my kidneys beyond repair.
Many attempts and procedures were done during my young age to try and fix the problem - the first being as early as six weeks old. Unfortunately, this and other attempts were not successful, with one such attempt required me to have a blood transfusion. It was here that my parents were told that my blood type was B Negative.
Many of my early years were difficult for my family, but as I was so small and young much of this information, was written and kept for me when I was old enough to understand by my mother over the years. Having other siblings meant that my parents were often away with me at the hospital, meaning that my brothers and extended family did have to adapt and make sacrifices for me from an early age. I don’t think this could have been particularly easy for my parents and brothers as due to my ill health they did not always get sufficient quality time, with aunts and uncles looking after my brothers which I’m sure was strange and tough for them.
I had my first kidney transplant when I was aged three on 1st April, a date I will remember as at first my father thought the call was an April Fool’s prank. Fortunately, on a further attempt to call my parents my mother picked up the phone and they both took me to the hospital. After my transplant was also the first time I had the pleasure of solid food, as previously I was “fed” through a Nasogastric tube as I could not keep food down and needed nutrients in some manner. So, my taste buds have developed later than the general population and throughout life it has been like retraining my tastebuds at certain hurdles. Sadly, there was a severe rejection episode on the 10th day of my admission but with more heavy-duty medications thankfully the kidney started to function properly.
I was persistently getting a lot of Urinary Tract Infections (UTIs) while growing up with my first transplant, and at the approximate age of eight it was thought that removal of my native kidneys may lessen the frequency and severity of UTI’s. This did help somewhat but with the earlier expanding of my bladder I also had to self-catharise at set times to make sure my bladder was emptying properly.
It was around this time that I feel I personally started to really realise that I was different to other young children my age; I had tubes and bags connected to me, I had medication which left me a lot hairier than other children and had a very round face. As you may imagine as children when something is new or different it can at times be “picked on” and this is really where I encountered bullying and certain self-image issues within myself.
My transplant started to fail around the age of 12/13 and the decline was slow. I was told I would need dialysis so a Peritoneal Dialysis (PD) catheter was inserted and when this healed I was back in hospital for PD training to learn how to use the machine at home. This meant falling behind at school with only a small number of friends that really knew what was going on and why I was away.
Nightly PD meant I was on the machine early evenings (6 nights a week) so I was ready for school the next day. Growing up with these symptoms and having to use the machine, I thought about how stressful this would have been for my parents and brothers when I was still a child. I felt burdensome to everyone and I missed lots of socialising with peer groups as well as school itself as I was adjusting and getting used to a new type of life again. I buried myself away in music and comic books as a way to cope. I do feel left behind in some ways, especially when I compare myself to people my own age who might have already established themselves in their careers or who are settling down with families.
Due to missing so much schooling and potential further education, my second transplant came sooner than it may have if I had waited on the waiting list, as my second transplant was from my father at the age of 14.
The first year and a half after my 2nd transplant was very difficult as during surgery one of my lungs collapsed and I was in ICU for a number of days. I ended up getting Meningitis/Encephalitis, CMV and many bouts of rejection.
My 3rd transplant came during the Covid-19 pandemic which was an altogether strange experience, as I did not even know the transplant programme was back up and running at this stage. It was in July 2020, and before the call I was very settled in doing home haemodialysis overnight. My clearances were good and generally I was doing ok, however following this 3rd transplant this new wonderful lease of life is amazing.
I’m a big advocate for raising awareness for kidney disease and organ donation and have many volunteer roles to help educate and raise awareness around these topics, especially coming from an ethnic minority background. The inequalities in which we face and need to learn from are very important, for example, the Black, Asian and Minority Ethnic community make up 31% of the organ donor list but only 10% of the population, and that fact alone shows the vast difference in numbers. If you add to that the matching process and lack of donation rates from minorities, it gives a small insight into what ethnic minorities face. I don’t think the public know enough about the conditions or the complications that come with it, or what it means for people in society who live with it. Some of the treatments I have had to undergo to keep me alive have side effects that significantly impact on my day-to-day life. A transplant is not a cure, it is just another form of treatment. This is after all a chronic illness and will be something I navigate for the rest of my life.
Today I’m in a more positive place and I’m lucky to have supportive family and friends around me. The last few years during the global pandemic have been a challenge, as I’ve had to isolate myself to stay safe while I’ve been healing from my latest surgery. However, I’m optimistic for the future. I have career aspirations to work with and mentor other people with kidney disease, especially the younger population who can at times get and feel an ageist atmosphere around “being too young to be ill”.
I know how difficult it can be. I have lived it, I’m still living through it and shall do all I can to help support and decrease the health inequalities faced by the marginalised parts of our communities.
