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James and Emma’s story – life-changing challenges

After having a kidney transplant fail, James and Emma talk about their struggle to cope.

Doncaster couple James Fenwick and Emma Ross have had to face many life-changing challenges as a result of James’ kidney disease.

James was diagnosed with stage 3 renal failure in 2007 and received a kidney from his dad the following year, but the transplant began to fail in 2014.

Within the space of just over 12 months the couple had to deal with transplant rejection, accept the reality of living on haemodialysis and cope with a devastating diagnosis of avascular necrosis – an unexpected complication which has destroyed bone tissue in James’s hip due to a lack of blood supply.

James Fenwick and Emma Ross

They have also faced serious infections, numerous operations and family bereavement – all while trying to adapt to life as new parents to their daughter Charlotte.

Although James’s physical condition was always well-monitored there was no similar system in place to focus on the emotional impact of his experiences – a situation which eventually led to James suffering a breakdown.

“Things had been getting on top of me for a while. I was struggling with it all. I went to dialysis one day and just broke down,” says James.

“I was referred to the in-patient counselling service. She came to see me for an initial consultation, saw what state I was in and decided to see me straight away. She was fantastic.

“I’d get hooked up to the machine in a private room and then we’d have our counselling session in there. I had 12 two-hour sessions for 12 weeks and that just about got me back on my feet."

"The sessions were only supposed to last for eight weeks but we knew we needed more support and that’s really the point – dialysis doesn’t last for a few weeks. You need ongoing support.” says Emma.

The couple believe that specialist renal counsellors should be available at the point of diagnosis for all patients and their families.

“Each renal unit should have a counsellor attached to it who fully understands how kidney disease – especially dialysis – can have a massive impact on your whole life,” says Emma.

“People still don’t understand how difficult dialysis is for patients and families. They just think ‘Oh he’s better then’ – and that couldn’t be further from the truth.“

A similar service already exists for conditions like cancer and heart failure but renal failure is just as devastating but it just doesn’t seem to be given the same consideration nationally.

“We can see the light at the end of the tunnel now but it’s taken us a long time to get to this stage. And we know other patients and their families are struggling too.

“We need more support right from the start rather than having to wait until we’re at rock bottom before we can get anybody to help us.”

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