Maddy Warren, aged 39 from Warwickshire, will be completing a trail ride on horseback across the Cambrian mountains from Clyro to Aberystwyth to celebrate 25 years on home kidney dialysis and to raise money for the Young Adult Kidney Group (through Kidney Care UK) and Kidney Wales.
Maddy is amongst a very small number of people in the UK to have lived continually on dialysis for well over two decades without having a successful kidney transplant. She started dialysis as a 14-year old when her kidneys failed due to an autoimmune disease. She learned to do all her own treatment at home, which has supported her against the odds to sustain an active, independent life, hooking herself up to her machine using large needles for 6 hours, 5 nights a week. She underwent an unsuccessful attempted kidney transplant from her father in 2003, but it would not be safe to attempt another one so she will likely rely on dialysis for the rest of her life.
Despite dialysis being an incredibly time consuming, constant and often gruelling medical treatment, doing it at home enabled her to complete her education and subsequently thrive in careers in finance and now running her own business. She loves to pursue challenges and adventures pushing the boundaries of what’s physically possible whilst being reliant on a life-support machine. She is a passionate advocate and campaigner for people with kidney disease/on home dialysis, and has personally supported hundreds of patients, lobbied the government, given talks all around the world and fundraised over £35,000 for kidney charities.
To celebrate her 20th year on dialysis in 2018, Maddy became the first woman on dialysis to run the London Marathon. She is also as far as she’s aware the only person on dialysis to have become a qualified skydiver, competing with her formation skydiving team “Fireflies” to win a silver medal at the British Skydiving National Championships in 2017. Her latest challenge to mark a quarter of a century on dialysis combines her passion for physical endurance with her love of horses, riding around 20 miles a day across the Welsh hills, bridleways and drover routes from Clyro at the border to the beach at Aberystwyth, in a group led by the fantastic FreeRein Riding Holidays.
As Maddy can’t take more than 2 days off dialysis at a time, she will also need to travel many miles away to a hospital on 2 nights of the trail to do her dialysis treatment for 4 hours, then travel back to continue the ride, which adds significantly to the logistical and physical challenge but she is optimistic:
“I have an overwhelming sense of gratitude to not just still be surviving but thriving after all these years on dialysis. When I started as a teenager and learned that a transplant wouldn’t be possible for me it was absolutely devastating, and based on the available dialysis survival data it felt like a looming death sentence. Yet against all the odds, I am having the most fulfilling and joyful life. My situation has taught me how to be resilient and determined, to see the light in even the hardest circumstances, to laugh at everything, become an excellent problem solver and grab every opportunity life offers. I want to use this milestone anniversary to raise money for two fantastic charities, but also to show other people with kidney disease that it’s worth keeping on going. I dialyse to live, I don’t live to dialyse.”
The money Maddy raises will be split between Kidney Wales and the Young Adult Kidney Group (YAKG) which is part of Kidney Care UK.
She was one of the founding peer supporters for the YAKG and helped to grow it to over 1000 members across the UK and beyond. It is a unique patient-led peer support group and community for people with kidney disease aged 18-30 which offers friendship, empathy, fun and a listening ear, as well as an annual residential trip to Mount Cook Adventure Centre in Derbyshire. Maddy remains an advisor to the group and funds will go towards the operational costs of the 2024 residential trip.
Maddy’s dear friend Brett who died from complications related to dialysis in 2022 was the Patient Information and Support Manager for Kidney Wales. She wants to raise funds in celebration of his legacy and to help them continue their fantastic work. Link to Maddy’s fundraising page: https://donate.giveasyoulive.com/fundraising/maddys-welsh-border-to-coast-horse-riding-dialysis-challenge