In early 2019 I was constantly tired. I knew I was working hard as an events producer and also a DJ and radio presenter, so I began to be intentional with having early nights and also ensuring that I was eating healthily. Despite my best intentions I didn’t notice a change, so I booked an appointment with my GP to request for a blood test. My doctor called me whilst I was at work with my results and told me that I needed to go the the local hospital immediately for further tests.
Hospital consultants carried out various tests including an ultrasound and a biopsy, and a few weeks later I was diagnosed with IgA Nephropathy, also known as Berger’s disease. My kidney function was around 32% at that time.
By 2022 I was diagnosed with kidney failure as my kidney function had declined to around 8%, so as part of my ongoing treatment I started dialysis. I have very small veins so it was decided that I should do peritoneal dialysis rather than have a fistular for hemodialysis. I had to administer four fluid exchanges a day, every four hours. As a result, this made it impossible for me to continue working as an events producer in a busy central London office, and I had to change my role.
Doing peritoneal dialysis four times a day also made it very difficult for me to make plans that took me far away from home, as I would have to return home to do dialysis or carry the heavy fluid around with me to do it on the go. My work as a DJ meant that at times I had to travel, sometimes overseas. I tried my best to maintain this but the logistics of trying to send the dialysis fluid to the destination ahead of my arrival or to carry it myself in a very large, heavy suitcase, was very stressful.
In January 2022, I was added to the NHS Organ Transplant Waiting List, and in a bid to help maintain my life, both of my parents were tested to see if they were a match, however it was confirmed that they are too old and that a younger kidney donor would be preferred.
Unfortunately, in March 2023 I developed pneumonia due to complications with peritoneal dialysis and I was hospitalised. There were complications with attaching the second chest drain to my body to drain the fluid from my lungs, and I had to have an emergency operation. I spent 3 months in hospital and then a further two weeks in hospital in August 2023 due to infections.
Developing pneumonia and being unwell for a long period of time made me nervous about continuing with peritoneal dialysis, so I made the decision to switch to hemodialysis via a line, not a fistular as I have small veins. I do dialysis three times a week, 3.5 hours a session.
Kidney failure is an invisible illness, on face value, looking at me, perhaps you cannot tell that there is anything wrong with me. However, kidney failure comes with many other health complications including anaemia, extreme tiredness, vitamin D deficiency, muscle cramps, shortness of breath, high blood pressure and of course needing dialysis to maintain life.
At the time of writing this blog there are currently 6210 people waiting for a kidney donation. As I wait for the call to be offered the gift of life by having a kidney transplant, I do my best to remain positive. Whist a kidney transplant is not a cure for kidney disease, it would significantly improve my quality of life. Currently, dialysis keeps me alive, but it also limits my freedom in many ways. The frequent treatments (3.5 hours a session, 3 times a week), which I am very grateful for, tie me to a very strict schedule and make it difficult to travel, work, and enjoy many aspects of life that others might take for granted.
Receiving a transplant would remove the need for regular dialysis, freeing me from the machine and allowing me to regain more control over my day to day life. I could enjoy more flexibility, spontaneity, and the ability to make plans without constantly thinking about when I will need to do my next treatment. I would have the energy to focus more on my passions, such as my work in music and events, and to pursue new opportunities that are currently out of reach.
That being said, I know that a kidney transplant is not a cure. It is another form of treatment and requires lifelong care, including taking immunosuppressive medications to prevent my body from rejecting the kidney. These medications come with their own risks and side effects, such as a higher likelihood of infections. Even so, a transplant would mean less restriction on my life and offer a level of freedom and normalcy that I have not experienced for a long time.
The thought of being able to live more freely again, without the constant burden of dialysis, gives me hope as I wait for a donor. It is a reminder that organ donation has the power to transform lives, not only by extending life but by vastly improving the quality of it.
By registering as an organ donor, you have the potential to save lives, offering hope to those like me waiting for a second chance. Will you consider signing up today and making the gift of life possible for someone in need? It only takes just two minutes to register your organ donation decision: https://www.organdonation.nhs.uk/register-your-decision/donate/
How can you help?
Consider becoming a deceased kidney donor
Share your decision with your family
Share this blog and the work of the African Caribbean Kidney Education Enterprise™ (ACKEE) to help inform and educate others. Also find us on social media @wearetheackee
Do you have ideas on how we can promote deceased kidney donation within the Black African Caribbean community? We welcome collaboration and partnership suggestions. Reach out to us via our contact page if you believe we can work together.
Comments