Fez's Story

Day 2 of Organ Donation Week!

Have a read through Fez's story in which he highlights physical issues he's faced with CKD and how it has caused others to treat him. He also speaks about how the pandemic has affected us all and gives some stats on organ donation within ethnic minorities. Plus, he talks about his volunteer work and how he is helping others with CKD.

Also, if you haven't already, head to https://www.organdonation.nhs.uk/register-your-decsion/ to register your decision and help save up to 9 lives!

"Kidney disease has affected my whole life, and the decisions and actions I take on a day-to-day basis continue to be influenced by my condition. Last year during the global pandemic, I had my third kidney transplant. I’m 35 years old.

I was born with renal failure and have since spent a lot of my life in and out of hospital. I had my first kidney transplant when I was aged 3, this 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 public, and throughout life it has been like retraining my taste buds at certain hurdles. My second transplant was from my father at the age of 14. As a child I knew I was different. The life-saving treatments I was given altered my appearance, and led to name calling and bullying at a young age. I was always conscious of that because people noticed things like a moon face, excessive hair or having a catheter. I missed a lot of education and some big milestone events growing up due to not feeling well or having to make hospital visits. The first year and a half after my 2nd transplant was very difficult as I ended up getting Meningitis/Encephalitis, CMV and many bouts of rejection. 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.

I’m a big advocate for raising kidney disease and organ donation awareness, and have many volunteer roles to help educate and raise awareness around these topics, especially coming from an ethnic minority and the inequalities in which we face and need to learn from are very important. For example, we make up 31% of the organ donor list but as a whole in the population there is only 10% of us 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 light into what ethnic minorities face. I don’t think the general-public knows enough about the conditions, 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 and 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, after all this is 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 year and a half 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. Even though I have had my vaccinations, I’m part of the population that unfortunately has not produced antibodies and am currently waiting for a third booster jab. 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.

I shall leave you with a few thoughts.

If you or a loved one needed an organ, would you take it? If so, why not also think about the positive benefits of donation now within yourself and also talk and share your wishes with your family and loved ones, as they are the ones who will ultimately have the final say on when you leave this earth. So please share your wishes and make them known and inform your loved ones, you could save someone’s life, potentially many lives."