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“Chronic kidney disease severely impacted my mental health”

15 May 2024

In 2012, while working as a paramedic, Izzy, 48 from Bradford, received the shocking news that he was at stage four of kidney failure. Izzy had been living with a type of kidney disease called IgA nephropathy, which had caused his kidney function to drop to just 15%.  

Living with kidney disease has had huge ramifications for Izzy, a father of five, forcing him to leave his career, lose a significant part of his income and struggle with his mental health.  

Izzy says: “When I was diagnosed, I just stood there. There were people talking but I couldn’t hear what they were saying. It was all muffled. It’s so shocking and you don’t absorb any of it. You just think it’s the end.” 

Selfie of a muslim man
Izzy

Shock diagnosis 

Six months prior to finding out he had kidney disease; Izzy had been diagnosed with type-2 diabetes. At a routine appointment to monitor his condition, the diabetes team became alarmed when they discovered Izzy’s blood pressure was particularly high. The next day, Izzy received a phone call telling him to go into hospital immediately because of his high creatinine levels. 

Izzy says: “I discovered my kidney function had dropped to 15% and I was at stage four kidney failure. I was thinking ‘what now?’ I knew I would need dialysis, but it became frustrating because I was being told my kidneys weren’t quite bad enough at that point to get treatment, despite being exhausted and unable to work. 

“Looking back, there were signs of my kidney disease before my diagnosis, but I mistook them for something else. I had back ache and felt tired all the time, but working as a paramedic I was always lifting people and working night shifts, so I put it down to that.” 

Challenging taboos

Izzy’s brother, Fiaz Ahmed, came forward to provide a donor kidney and Izzy had a successful transplant which lasted for nearly a decade. Izzy says: “It was quite taboo. There’s a shortage of donors from black and ethnic minority communities because of that. I never knew people could donate organs and still be healthy before I went through it with my brother. 

“There are a lot of misconceptions with people around religion, and how donors' bodies are treated after death. but we managed to get a Muslim Imam [preacher] to talk to our community to let people know it’s not against religion to donate a kidney. 

“Unfortunately, my transplant failed two or three years ago, and I nearly lost my life. I’m now on dialysis and the transplant waiting list. It did affect me quite badly and I ended up in a really dark place. I went from being the main breadwinner and having a mortgage to not being able to work and being on a pittance of a pension. 

“Mental health is difficult to talk about as an Asian bloke. In our culture, you can be looked at as 'crazy' in some circles and treated differently. I was petrified of what was happening with my health. I wasn’t sleeping, it made my blood pressure go higher and made me more unwell. I’d encourage people to talk about it to get themselves out of that hole because otherwise it just consumes you. It can be lonely, and you feel useless, like you’ve been thrown on the scrap heap. 

“I spoke to a psychologist but also to friends. It’s important to know that having kidney disease isn’t the end of your world, and thankfully we have the glorious NHS to help people like me out too. You’ve just got focus on your health and family and take one day at a time.” 

Looking forward

Izzy is currently receiving dialysis while he waits for a kidney to become available for transplantation. He says: “I’m not getting my hopes up, because there is a shortage of donors. I don’t want to be waiting for a phone call that never comes. I’m just trying to get on with my life and do the best I can.” 

“I didn’t know anything about kidney disease until I got diagnosed. It’s a scary thought how many people are on dialysis and the prospect of that growing so much over the coming years.” 

“I think it should be taught in the curriculum about eating a healthy diet to look after your kidneys. We should teach our children about the risks to your health so they can change their lifestyle. Also, about organ donation. I never knew people could donate some organs and still be healthy.” 

Izzy is now using his time to raise awareness of kidney disease, support new patients and offer insight for medical practitioners. He says: “I helped set up a patient association at my dialysis unit and I volunteer with NICE [the National Institute for Health and Care Excellence] as a patient expert. I want to pass on some of my knowledge and what I’ve learnt to help others.” 

“You can’t underestimate lived experience because it makes so much more sense when you talk to someone who has been through it.” 

Mental health support

Like Izzy, it is perfectly normal to experience a wide range of emotions in response to being affected by kidney disease. It is not a sign of weakness if you are finding things hard and you are not alone. There are several sources of support available to you. 

It can sometimes help to talk with friends or family, but it can also be beneficial to reach out for additional support. Your renal healthcare team or GP can be a good first point of contact to access appropriate care. 

There are also other organisations you can contact directly to find support which is right for you: 

  • Kidney Care UK counselling and support service – free help and emotional support for kidney patients and their families. Call 01420 541 424 or email info@kidneycareuk.org  
  • National Kidney Federation free UK helpline – call 0800 169 09 36 (Monday to Friday, 9am-5pm) for specialist emotional and practical support for kidney patients. 
  • Mind – visit website or call 0300 123 3393 (Monday to Friday, 9am-6pm – excluding bank holidays) for mental health resources and guidance on where to get further support. 
  • Samaritans free helpline – call 116 123 for mental health crisis support (24 hours a day, 365 days a year). 

Your mental health is just as important as your physical health, so please make the most of the support available. 

Read more about kidney disease and mental health

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