Scots nurse seeks fourth transplant after lifetime with debilitating disease
Johanna Hughes, from Glasgow, was just three years old when she was diagnosed with focal segmental glomerulosclerosis (FSGS).
A Scots mental health nurse who has lived with kidney disease for 35 years is praying for a fourth transplant after a lifetime of debilitating dialysis treatments and endless hospital visits.
Johanna Hughes, from Glasgow, was just three years old when she was diagnosed with focal segmental glomerulosclerosis (FSGS) and spent much of her childhood on dialysis before receiving her first transplant in 1995.
As reported by Glasgow Live, two further transplants followed - including one from her younger brother Joseph - but each was eventually lost to her kidney disease.
Her most recent transplant failed earlier this year and she was forced to return to dialysis after being told she may never be able to have another transplant - however, she remains hopeful of a fourth.
The 38-year-old said: “I’ve spent most of my life battling kidney disease and at times it felt like it took everything from me – my education, my career, my relationships, and my mental health.
“I know that my antibody levels are so high now that I may never receive another kidney transplant.
"That’s frightening but I’m trying to work my life around dialysis, and I’m so grateful to the amazing staff at New Stobhill dialysis unit and the people who support and love me. I’ve never given up and keep doing my best every single day to make the most of life.”
Despite the setbacks, Johanna has built a life she is proud of – qualifying as a nurse, becoming a mum to her daughter Ramona, and finding strength in the support of her fiancé Mark and her wider family.
She will join the Kidney Research UK Glasgow Bridges Walk later this month, walking across the city's bridges to raise awareness and funding for research. She will join hundreds of others walking either the one or six mile route from Glasgow Green on Sunday August 31.
She continued: "I used to feel so much shame and embarrassment around my illness but now I want to share my story to make a difference.
"I’ve never given up and keep doing my best every single day to make the most of life. I hope joining the Glasgow Bridges Walk will be a nice distraction from the challenges that come with kidney disease, and I’m so looking forward to the atmosphere. Hopefully we’ll raise plenty of money for life-saving research and can bring attention to the importance of kidney health."
Joanna is one of over 110,000 people estimated to be living with chronic kidney disease across the Greater Glasgow area, with 396 on dialysis in 2023. That number is projected to rise to 1,883 by 2033, while just 40 kidney transplants were carried out in the Greater Glasgow and Clyde NHS area in 2023.
Lucy Sreeves, executive director at Kidney Research UK, said: “We’re so proud to have Joanna walking with us. Her story is a powerful reminder that a transplant is not a cure, and many of those in Johanna’s situation face a lifetime of uncertainty. By sharing her story and taking part in the Glasgow Bridges Walk, she’s helping to shine a spotlight on why more research is so desperately needed.
You can join Johanna and her family at the Glasgow Bridges Walk. For more information, go to: Glasgow Bridges Walk - Kidney Research UK.