A young graduate from Peterborough who experienced mental health trauma when her kidney transplant failed has spoken out about the experience as new research into how patients can be better supported is announced.
Ummae Kulsoom, 22, is sharing her experiences in support of the study which aims to develop new resources for patients and their families, The study is being funded through the Andy Cole Fund, which was set up in 2020 by former Manchester United and England footballer, Andy Cole and facilitated by Kidney Research UK. Inspired by Andy’s own experiences with kidney disease, the fund aims to improve transplantation and patients’ mental health through research.
Ummae spent six years on dialysis before she received a kidney transplant at just 14 years old. Within months it was failing, and she was forced back onto dialysis. For most people, kidney transplantation will change their life, but Ummae was among the small number of people who suffer significant complications such as the kidney failing after a very short time, or it being rejected by the patients’ own immune system. These events can have a huge impact on patients’ emotional wellbeing, yet there has been little research into this area of care for kidney patients.
Transplant surgeon Emma Aitken from Queen Elizabeth Hospital, Glasgow, is working to rectify this. Using her Andy Cole Fund Award clinical training fellowship, she is aiming to understand the effect that adverse events can have, particularly on patients and their families, to recommend developments in mental health support.
Emma said: “We’re hearing directly from patients and their families in their own words about their experiences. We looking at coping mechanisms, support networks, and what resources are out there to help people. The hope is in the long term that we will be better able to inform and develop mental health resources for patients who’ve had kidney transplants.”
Ummae’s experience shows why this work is so urgent. Diagnosed with kidney disease at three years old, her kidneys soon deteriorated further. By the age of ?? they had failed completely, and from then on she had to receive dialysis, three times a week, for four hours each time at Queens Medical Centre in Nottingham, over an hour away from home. She said: “My earliest memories are of being in hospital. I missed out on school, needing two or three weeks off at a time with urine infections or problems with dialysis. I was bullied and didn’t have a social life. Nobody wanted to be friends with the ill child that didn’t have energy to play.”
After finally receiving her transplant, to be back in kidney failure within months was a real blow. Ummae said: “I was upset and angry that my kidney had given up on me when I was trying my best to look after it. When it was removed due to infection, that hurt me emotionally. I’d lost the only good thing in my life, and I had a mental breakdown.”
Ummae refused to go back on dialysis and stopped taking her medication. She said: “I’m a Muslim, and in my religion, suicide is not permitted. That doesn’t mean I haven’t had those thoughts. For me, saying I didn’t want dialysis was an attempt at suicide because I needed it to live. I was just so tired and couldn’t carry on.”
Ummae’s nurses eventually persuaded her to return to dialysis and in 2023, aged 21, she unexpectedly received a second transplant, seven years after her first, and is now living with a healthy transplanted kidney. She said: “This kidney is amazing, but I am terrified at the thought of it failing. I have post-traumatic stress disorder (PTSD) from losing my first, and I don’t know if I could go through that again. It frustrates me that some people think a transplant is a cure, as they don’t consider that they only last 20 years on average.
“Seeing people living with their transplants for a long time gives me hope, and I try to stay optimistic. I was barely living on dialysis but I’m so proud of what I’ve been able to achieve. I’ve recently graduated from University Centre Peterborough with a first-class degree in psychosociology.”
Sandra Currie, chief executive at Kidney Research UK, said: “Ummae’s journey has been extremely tough. If she’d had access to specialist and appropriate resources and support when her transplant failed it may have lessened the damaging effect on her mental health and wellbeing. Through the Andy Cole Fund we are committed to funding research that changes the game for kidney patients’, reducing transplant rejection and increasing understanding of the holistic care needed for everyone living with kidney disease.
