Accepting help was the best decision of my life

09 May 2022

Nikki Fretwell was just 17 years old when she was diagnosed with focal segmental glomerulosclerosis (FSGS). Now, the 51 year old is thought to be one of the UK’s longest surviving dialysis patients, after more than three decades receiving the treatment.

A full and active life

During that time, Nikki has become a mum, led a full and active life as a primary school teaching assistant, and even become a radio presenter. But in recent years, as the toll of continuous dialysis becomes more apparent, she’s had to retire from teaching, and the burden of her condition has become difficult to bear. She’s incredibly grateful to have the support of a renal counsellor to help her through moments when everything has fallen apart.

Nikki says, “I was a teenager when I started to feel unwell, unable to get out of the bed in the morning. I got a job after leaving school, and noticed my ankles would swell up on the walk home from work. It wasn’t until I fainted at the GP practice that they took it seriously, and sent me to Nottingham City Hospital. I was very ill for the next two years, and even had suspected renal vein thrombosis.

“I went on haemodialysis in March 1990, first in hospital and then at home. I’ve been dialysing overnight at home since 2014, which gives me independence and control over my life.”

But there was another surprise around the corner – in 1992, Nikki got pregnant. She says, “My consultant told me we might as well have a go. I had dialysis every other day and went into hospital at six months with abdominal pain. They monitored me and eventually I gave birth at seven months to Daniel. He was just 2lbs, but perfect. He turns 29 next month!”

Nikki and son Daniel

Adapting to life on dialysis

Nikki got married and settled into life as a young mum, training to be a teaching assistant. She adapted well to life on dialysis and had put the thought of a transplant to the back of her mind – until she got the call in 2007.

“The whole transplant experience could not have gone more wrong,” she says. “The kidney never worked properly, and I was in hospital for four months until it was removed. It was horrific. I like having control, which is why I dialyse at home, and I had no control whatsoever. I didn’t leave the house, I hated the effects of the drugs I had to take, and it took me a long time to get over it. My marriage ended at the same time too. I decided not to put myself on the transplant list again after that, especially as the dialysis worked well for me.”

Four years ago, Nikki started seeing a renal psychologist, who thinks she’s been suffering from PTSD since the transplant. Despite that, Nikki’s always been determined to live a full life, and put huge effort into making sure that those around her enjoyed what she calls “the Nikki Fretwell experience”.

She says, “I give 110 per cent in everything, and most of my colleagues didn’t even know I was on dialysis. But then it all fell apart. There were stresses at work and one day I thought, ‘I don’t want to go today.’ I happened to be seeing my consultant, who suggested I talk to a psychologist. But it wasn’t until a week later, when a nurse I’d known since day one, told me that she didn’t recognise me, that I finally agreed. It was the best decision of my life.”

Nikki on dialysis

Having emotional support is vital

Nikki started seeing Emma, the renal psychologist attached to Nottingham Hospital, every two weeks, and believes having a psychologist who understands what you are going through emotionally is vital.

She stresses she’s lucky to have a great GP and an understanding consultant with whom she has a good relationship, but says some medics think, “’If your kidneys don’t work, then your brain doesn’t either’. I want to be treated like a normal person, not a kidney patient.”

With Emma’s help, Nikki finally made the difficult decision to retire from work. “She said to me, ‘You are living on a cliff face and the cliff is crumbling. I suggest you buy a caravan and enjoy the view before the cliff crumbles.’ I still feel guilty because I miss the job and was good at it. But I didn’t want to die while I was working. There’s no data for someone like me who had been on dialysis for so long. I don’t know how long I have left.”

Survival rates for people on home haemodialysis are higher than for other types of dialysis, but as Nikki says she is now in uncharted territory as few people survive for as long as she has. The dialysis has left Nikki with little sensation in her hands and feet, and she has problems with her eyesight and hearing. Last year, she suffered another breakdown when the stresses of the pandemic combined with her mother’s ill health became too much.

“I crumbled,” she says. “For the first time, I didn’t want to do the dialysis, and thought to myself, ‘What’s the point?’ I was worried about not waking up in the morning and who would find me. But with the support of the psychologist, my son and my friends I got through it. Emma made me realise I couldn’t just keep carrying on, shoving everything down. I took the antidepressants without question. I couldn’t have coped with everything in the past two or three years without her.”

Not giving up

Now, with Emma’s help, Nikki is embracing life again. She’s decided she wants to do something different every month, from riding a 100-year-old steam roller to self-teaching herself the piano. She might have planned her own funeral, but she’s not ready to give up on life just yet.

“I want to go to different places, do different things,” she says. “Life now is all about making amazing memories. I’m not ready to give up yet. My son needs me, my dog needs me, and I’ve got people who love me.”