Teenage kidney patient opens-up about life as a young person on dialysis
A kidney patient from Hackney, London, is speaking out about what it is like to be a young adult on dialysis, as he tries to help others feel less isolated.
Since being diagnosed with chronic kidney disease as a baby, 18-year-old Delano Joseph-Myers has experienced two failed kidney transplants, spending more than half his life as a dialysis patient.
As he waits for a third kidney transplant, Delano attends his dialysis unit three times a week, for four hours each session.
Delano says: “Being the only young adult on my dialysis unit can be lonely. I have family and friends to support me. However, you only really understand kidney disease when you live with it yourself. In the past, I’ve tended not to share how I’ve been feeling, but I want to tell my story to help others understand they’re not the only ones going through this.
“Speaking openly on my social media pages has helped me connect with many young people living with kidney disease. A lot of us have suffered in silence and there will be many more people out there who still feel alone.”
Delano’s story
At just two weeks old, Delano was rushed to Evelina Children’s Hospital where his blood pressure was found to be dangerously high. His kidneys were failing and he was transferred to Great Ormond Street Hospital (GOSH).
By his fourth birthday, he needed to start dialysis. This treatment continued until he received a kidney transplant from a deceased donor at five years old. That kidney functioned for five years, before failing in 2018 when Delano was ten.
By the time he started secondary school, Delano was back on dialysis, waiting for a second transplant. He spent five years waiting.
Delano says: “It was tough. I spent more of my life in hospital than I did in school. I was there three times a week for dialysis, for four hours each session. I’d often have to leave school halfway through the day to go for treatment.
“There was a six-month period when my blood pressure was extremely low, and I needed to stay in hospital for dialysis six days a week. I was away from school for so long that rumours started circulating with other kids that I had died.
“I had school lessons at GOSH. However, the treatment was so draining, making it hard to learn. I didn’t do well in my GCSEs because of how much I was affected.
“I felt like the only person going through something like this. I didn't know anyone in my day-to-day life who was affected by similar health problems. It was very isolating.”
What is it like being a young person on dialysis?
In 2023, Delano finally received a second kidney transplant, at 15 years old. However, within two years, this kidney had also failed, leaving him back on dialysis.
Delano says: “It was very up and down with my second kidney. It didn’t wake up straight away and later my body began to reject the kidney, causing it to become infected and swollen. It failed and I’ve been back on dialysis ever since.
“It was gutting but there was nothing I could do. In the end, doctors had to remove the kidney because the swelling was causing me a lot of pain. It was a relief when it was gone. I’m on the waiting list again now, hoping for a third kidney transplant.
“Being a dialysis patient isn’t easy. It is hard juggling school and work against needing to have four-hour-long sessions, three times a week. There are days when I want to give up or not get out of bed, but after I take a minute, I have to keep going.
“It’s hard when there isn’t enough understanding of kidney disease in the wider community. It’s a hidden illness and people can mistake my symptoms for laziness. They just don’t get it. Just because we look ‘normal’ doesn’t mean we are healthy on the inside. You should never judge a book by its cover.”
Delano is passionate about sharing his vast experience of being a kidney patient to help others better understand kidney disease, treatments and medications.
He says: “I want people to know that dialysis doesn’t have to be as scary as you think. If people see that I can do it, maybe they’ll realise they can too. I’ve been living with kidney disease since I was two weeks old, but I don’t let it stop me from living life as best I can. I enjoy being creative and have designed my own clothing brand. I’m also starting a career as a sports coach alongside my delivery riding jobs
“I hope I’ll be able to have a transplant soon, although I’m aware of the lack of kidney donors from Black communities. Maybe if people see what patients like me are going through, it’ll help the consider becoming organ donors to improve others' lives.
“My wish is that one day I can have a kidney transplant that will last me a lifetime and allow me to fully pursue my dreams. Until then, I will keep getting up every day and giving it my best.”
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