‘Dialysis and a failed transplant left me feeling hopeless’

10 October 2024

After six years on haemodialysis, Ummae Kulsoom, from Peterborough, was just 14 years old when she finally received a kidney transplant. Cruelly, within months, it was failing, and Ummae was forced back to dialysis, leaving her feeling hopeless.

Adverse events, like Ummae experienced post-transplant, can have a huge impact on patients’ emotional wellbeing, yet there has been little research into this area. Now, Emma Aitken from Queen Elizabeth Hospital, Glasgow, is rectifying this through her research, made possible by an Andy Cole Fund Award clinical training fellowship.

This World Mental Health Day (10 October), Ummae, now 22 years old, is sharing her experiences to emphasise the importance of mental health support for kidney patients.

Close up of an Asian female, wearing a tan colour and black burka. Houses in the background

Ummae Kulsoom

A childhood on dialysis

Diagnosed with kidney disease at three years old, Ummae spent most her childhood receiving haemodialysis, three times a week, for four hours each visit, and being treated for infections at Queens Medical Centre in Nottingham, over an hour away from home. She was then moved to the adult haemodialysis unit at Peterborough City Hospital.

Ummae says: “My earliest memories are of being in hospital. I missed out on school, was bullied, and didn’t have a social life. Life at home was difficult too. I was a young carer for my mum and siblings from 11 years old. I had long days supporting them while having dialysis. I felt so drained and was very isolated. I couldn’t escape it.

“There are a lack of compatible kidney donors in Asian communities due to cultural and religious misconceptions about transplantation, and it was painful spending several years longer on the waiting list than most children because of that.”

Transplant heartbreak

At 14 years old, Ummae finally received a transplant after waiting six years. She says: “It was a hopeful time. However, doctors quickly realised that the transplanted kidney wasn’t working. I went through kidney failure all over again. There is so much stigma attached to organ rejection, and I was scared people would think it was my own fault.

“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.

“I felt a lot of complex emotions. I did miss the haemodialysis unit, as it had been my safe space for so many years away from home and school, but I was devastated that my chance at freedom from dialysis treatment had been snatched away. I took my anger out by not taking my medication and refusing to go back to haemodialysis.

“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.”

After the heartbreak of her failed transplant, Ummae reluctantly agreed with her nurses to go back to life on haemodialysis. She says: “I never thought I’d get a second transplant. I was resigned to being on dialysis forever. When I moved to the adult dialysis unit I looked so out of place. I was so small and quiet. Most people were old, I’d see them and think ‘that’ll be me, still here on dialysis’. It felt inevitable I’d die there like others I’d known on the unit.”

Post-transplant anxieties

In 2023, aged 21, Ummae unexpectedly received a second transplant, seven years after her first, and is now living with a healthy transplanted kidney.

Ummae says: “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.

“This kidney does feel different to the first. I feel healthier and more energetic. Being able to eat and drink what I want without feeling ill is amazing. I savour the taste of everything. Every time I go to pee it is emotional, to finally have that physical feeling of relieving myself. I feel so lucky to be able to do these things after so many years. Everyone deserves the chance to be healthy and enjoy their lives.

“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 left school without GCSEs, but I’ve recently graduated from University Centre Peterborough with a first-class degree in psychosociology.

“I want to go into counselling now. There is a gap in Muslim counsellors who understand the religious aspects of mental health, so I want to fill that. I’m bilingual, which helps. I also want to focus on supporting kidney patients because I know what it’s like.

Female muslim at her unviersity graduation holding her degree scroll about her head in celebration.

Ummae at her graduation

“It is such a relief to share my story. Looking at me, you wouldn’t know that I was unwell. That’s a challenge for all kidney patients. You don’t always receive the understanding and compassion you need. It’s incredibly hard to have kidney disease and get on with life. I haven’t received much support with my mental health. Doctors check your kidneys, but they don’t always check how you are or if you’re struggling.

“I hope telling my story makes a difference to people and helps them feel less alone. Being supported can help lift someone, and it would have made a difference to my mental health. I wish there was more emotional support for patients like me post-transplant, whether the kidney functions well or not. There is a lot of worry regardless.”

Andy Cole Fund research

The Andy Cole Fund aims to raise £500,000 for research to improve kidney transplants and patient wellbeing. It was set up in collaboration with Kidney Research UK in 2020 by former Manchester United and England footballer, Andy Cole, in response to his own experiences with kidney disease.

Emma Aitken from Queen Elizabeth Hospital, Glasgow, has been awarded a £5,300 clinical training fellowship by the Andy Cole Fund, to aid her research. She is aiming to understand the effect that adverse events can have on patients, families and surgeons, to recommend developments in mental health support.

Emma Aitkin says: “Psychological support for people with kidney disease is lacking. This research will give patients and their families a voice in shaping the future of that care."