'When you're diagnosed, your world turns upside down'

A man who had his life "turned upside down" by kidney disease has set up a group to support other patients.

Izzy Mohammed, from Bradford, was diagnosed with the condition in 2012 while working as a paramedic.

The following year, he received a living donor kidney transplant from his brother, but it failed in 2021 and he has been receiving dialysis treatment ever since.

"It can be a very lonely place living with kidney disease and undergoing dialysis," the 50-year-old said.

"When you're diagnosed, you feel a little bit lost, you don't know what to do, your whole world's turned upside down."

While in hospital the first time around, Mohammed was informed about organ donation, which was a subject he did not know how to broach.

"It was so difficult, especially within ethnic minority communities, there almost seems to be a sense of shame or apprehension," he said.

"We approached the imam at the mosque and he said, 'there's no misconception around if you can save a life, you should be able to save a life'."

Mohammed said he had also felt conflicted about taking a kidney from his brother when he offered.

"You don't want to feel as though because of your situation and misery, you're putting that onto someone else," he said.

"He said, you're my brother and this is what I want to do."

Eight years later, Mohammed was back to square one when his kidney went into failure again, leading him to fall into depression.

However, a turning point came when he was invited to attend a patient workshop at the University of Salford, where people with kidney conditions shared their experiences.

"It offers patient support, information, guidance, peer support, and it's just an opportunity for us to come together because it can be quite a lonely place," he said.

"A light bulb went off and I thought, well, why isn't this everywhere?"

Mohammed therefore set up BrAdKIN - the Bradford & Airedale Kidney Information Network.

Its first event saw patients, carers and clinicians come together at St Luke's Hospital, part of Bradford Teaching Hospitals NHS Foundation Trust, where Mohammed receives renal dialysis three times a week.

"People sometimes just want to talk to somebody who understands what it's like to be on dialysis, live with kidney disease or be waiting for a transplant," he said.

"When you're used to working for 28 years, waking up, going and earning a living, to then suddenly just being at home and going to hospital, you isolate from your friends and people that love you because you're in this dark hole.

"But fortunately for me, I've got a loving family, loving friends, and I needed a new purpose."

Mohammed has now spent four years on the national transplant waiting list in the hope of a second life-saving transplant.

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