Leeds man who has been waiting years for kidney transplant feels 'incarcerated' as restrictions on his life remain in place

Min Minhaj, 48, was diagnosed over three years ago but has not yet been matched up with a suitable donor for a kidney transplant.

His current life now bears little resemblance to his pre-diagnosis life.

Min, from Calverley, said: “It’s been life-changing, you feel like you have been incarcerated.

"I lost all my freedom after I was diagnosed with kidney disease. My life has turned into one endless hospital appointment. As well as all the check-ups, I need dialysis every second day, for four hours each time.

"Outside the hospital, my life is strictly controlled. I can’t travel far because I need to be on hand for dialysis, and everything I eat and drink is monitored. I can’t even have a cup of coffee anymore.

"I am scared that my dialysis might stop working, or my health will deteriorate, so I might not even be able to have a transplant when a match is found.”

He still works in his role in technology innovation but has seen his social life impacted significantly.

He explained: “Going on dialysis was life-changing for me. I was just like a normal person – I used to work a certain pattern of hours, go out eating and drinking and indulge in my hobbies.

"Over night, everything changed.

"I had to adjust my working patterns, I cannot travel for work now because I have to be in Leeds three days a week for dialysis. It’s a very committing process.

"I go for dialysis after work around 3:30/4pm, then I come back at 9:30pm depending on traffic, that happens three days a week

"The hobbies and activities I used to indulge have been curtailed a lot.

“After work on a Friday, I used go to the pub and catch up with work colleagues. Now, I’m in the hospital."

This week has marked Organ Donation Week and a new research study with the aim of reducing health inequalities around live organ donation has been launched in Leeds.

The study has been made possible by funding from Leeds Hospitals Charity, who have provided almost £50,000.

There are currently 455 people waiting for a kidney transplant and there are not enough donors from black, minority and ethnic (BAME) backgrounds to meet demand.

Just 14% of living donor kidneys in Leeds come from ethnic minorities.

The study intends to identify barriers to living donor kidney transplantation for people from BAME backgrounds.

The research will be led by Dr Sunil Daga, a consultant nephrologist and clinical academic at Leeds Teaching Hospitals NHS Trust.

He said: “The initial review I undertook in February 2021 found that there were several barriers to living kidney transplantation from BAME communities.

"We saw that there was a lack of relevant knowledge, fears about the risks of transplantation for the donor, as well as religious, cultural and financial concerns.

"This made me realise we need to do more to raise awareness and tailor resources and support we offer to patients and their families to reassure them that a living kidney transplant would give the best quality of life.”