It’s hard to accept that my transplanted kidney is failing

07 May 2025

An award-winning human rights lawyer from Glasgow was given her life back in 2009, when she received a kidney transplant that put an end to four gruelling years on dialysis. Devastatingly, the deterioration of her transplanted kidney now means she faces the heartbreak of kidney failure for a second time.

Jelina Berlow-Rahman was just 18 years old when her kidneys began to fail due to an aggressive form of lupus. Now 46, she is facing the imminent need for another transplant, or a return to dialysis, as her kidney function has fallen to just 15%

Jelina says: “It’s a very emotional time. Having gone through dialysis and different complications before, I know what is coming and it’s scary. My transplant gave me a wonderful life, and I just wish it could continue. It’s hard facing the possibility of a future where I have no choice but to go back to dialysis to stay alive.

“People don’t understand that having a transplant is not a cure. The average length of time a transplanted kidney lasts is only 20 years. Mine has lasted just 16.

“It’s not always straightforward to have another transplant either. There are lots of hurdles and things that can go wrong. It is not even an option for everyone. I hope I can find a match so that I’m able to have a new kidney before I need dialysis again.”

Jelina’s story

Aching hands and painful lesions on her lips and tongue led to Jelina being diagnosed with lupus in 1996. Her kidneys were attacked by the condition and became inflamed.

Jelina was prescribed steroids to boost her kidney function, but a bout of flu in 2005 led to an emergency admission to hospital. It was at that point that dialysis became necessary, and Jelina received the treatment for four hours at a time, three times a week, over the next four years.

Jelina, taking a selfie, smiling for the camera with water and bridge behind her.

Jelina Berlow-Rahman

Jelina knew that a transplant was her only hope of leaving dialysis behind. However, acute pancreatitis and a superbug infection meant she was removed from the transplant waiting list for two years.

Despite constant fatigue and many complications, Jelina built her own law firm and was named one of the 30 most promising lawyers aged under 30 years old in Scotland in 2008. She persevered until her transplant from a deceased donor in 2009, and since then, her and husband, Matthew, have beaten the odds to start their own family.

Jelina says: “I went on that journey of nearly dying and then going on to have my daughter, Aliyah, in 2016, even though I was told I couldn’t have children. My transplant transformed my life and I’m very grateful for everything it has given me over the past 16 years. I’m so thankful to my donor and their family.

“It is mentally hard to be facing kidney failure again, all these years later. I am experiencing fatigue, but I’m determined to keep running my law firm and to stay active with my karate and football. I’m a big believer in keeping a positive attitude and continuing to live a healthy lifestyle.

“I present myself as a very able person and push myself even when my kidney disease is causing me to have a bad day. However, that does mean that people can overlook how serious my condition is.”

Jelina during her time on dialysis

Dialysis fears

One of Jelina’s biggest fears is the impact that returning to dialysis would have on life for her and her family.

Jelina says: “I really do not want to have to go through dialysis again. It takes away your freedom and traps you into a strict regime. It’s incredibly lonely and exhausting.

“My daughter is nine now and it worries me that she might have to see me connected to a dialysis machine. She’s becoming more aware of kidney disease and has even asked me if I’m going to die.

“If I do need to have dialysis, I’d prefer to have it at home to give me a little more freedom. That comes with different challenges though, as you are responsible for your own care outside of the renal unit and have to have lots of medical equipment at home.

“It is positive that home dialysis machines are starting to become more portable now. I found it incredibly difficult to travel for work when I needed treatment previously. Even so, I would still have to consider moving closer to London to maintain my career and be nearer to family. That would mean completely uprooting our lives.”

Hope for the future

Both Jelina’s sister and brother have put themselves forward as potential kidney donors. However, they will need to wait and see whether it is medically possible to go ahead with either sibling for a transplant.

Jelina says: “After 16 years, I thought research would have moved on further to find ways to prevent kidney failure and make receiving a transplant more straightforward. It does take time, but I think it’s realistic to envisage a future where kidneys can be made available for more people. If you could tailor a kidney for individual patients to take into consideration things like blood type and antibodies that would be amazing.

“At the other end of the spectrum, if we can identify kidney disease earlier, particularly in groups at higher risk, then we can intervene to prevent or delay kidney failure. Both approaches would help reduce the number of people needing dialysis.”

The future that Jelina hopes for is currently being worked on by researchers, including Professor Mike Nicholson and Serena MacMillan, who have successfully altered the blood type of donor kidneys. Learn more.

Jelina continues to be an extraordinary advocate for kidney health, raising awareness about organ donation in minority ethnic communities, campaigning for change at the Scottish Parliament and providing a patient perspective to influence research as part of Kidney Research UK’s lay advisory group (LAG).

She has also broken new ground, having been selected as the first female player for the Scottish transplant football team for the European Transplant Football Championships which took place in April 2025.

Jelina says: “We need to raise more awareness of kidney disease so that action can be taken to make a difference to patient’s lives. Research takes time, so it’s important to me to campaign for change and contribute to those studies from a patient perspective today.”