Shoreham woman filled with hope after kidney transplant: “The future is so much brighter”

Kirsty Biss, 27, is sharing her story today on World Kidney Day to encourage people to sign up to the organ donor register and find out if they are at risk of kidney disease.

Kirsty was born with Cystinosis, a metabolic disease affecting her kidneys and eyes, but she lived a relatively normal life until 2015.

After a wonderful summer spent the summer travelling the country to perform burlesque at festivals, Kirsty fell ill and was diagnosed with renal failure.

Doctors found her kidneys were functioning at just 12 per cent and at one point told her they were surprised she was still standing.

Daily struggles

Many major life adjustments followed – something that ‘free-spirited’ Kirsty struggled to adapt to at first.

For the last three years she has been on dialysis, with her most recent routine seeing her travel to hospital in Brighton four or five times a week for three-hour sessions.

“It’s like a part-time job,” she said.

The disease affected all aspects of her life, with Kirsty struggling with fatigue, vomiting and nausea everyday, as well as muscle cramps and ‘brain fog’ - confusion and forgetfulness caused by urea in the blood.

She decided to set up a blog to document the little-known effects and the everyday struggles of living with an invisible illness, called Kirsty’s Kidney Chronic-ill’s.Kirsty said: “Running the blog has allowed me to make the best out of a bad situation. It’s given me a sense of purpose and belonging through my journey.”

“I was posting a lot when I was in hospital. Although I was at my illest, I wanted to be real, I wanted to show that side.”

Getting the call

One of many people on a long transplant waiting list, Kirsty said she had 'almost given up hope' of receiving a kidney.

Her family had even started preparing for her mum to be a donor, though Kirsty said: “That’s a major procedure for her. I didn’t want to have to put my mum through something like that.”

But out of the blue two weeks ago, Kirsty got a call from the hospital to say there was a kidney available which matched her requirements.

“It was suddenly all go,” she recalled.

She hurried to the St Richard ward at Guy’s Hospital in London and, after completing the necessary checks, underwent surgery.

'A whole new world of opportunity'

Waking up with her new kidney, Kirsty said she felt an ‘overwhelming’ mix of emotions.

“Your body has just been through a massive trauma, but you know the future is so much brighter,” she said. “There’s hope.

“I can’t believe how much this will change my life – I’m so excited.”

While she will be on medication for the rest of her life and will face challenges along the way, Kirsty said having a new kidney would open up ‘a whole new world of opportunity’ for her.

From being able to eat a relatively normal diet, to going on holiday with her boyfriend – something that has not been possible for more than three years – she now has a lot to look forward to.

“As someone in your 20s, you just want to live your life and earn money and go out and see your friends,” she said. “I wasn’t able to do that.

“It’s opened up a whole new world of opportunity – I can’t wait to grab it with both hands.”

Raising awareness

Kirsty is determined to pour her new energy into raising awareness of kidney disease and organ donation.

According to the NHS, three people die in need of an organ everyday because not enough organs are available for transplant.

While the law around organ donation in England is changing in Spring 2020 to an ‘opt out’ system, until then, people must still record their decision to be donor if they want to do so.

Kirsty is urging people to sign up here. She said: “It’s a great thing to do. It’s not just one life - you could possibly be saving and changing multiple lives.”

She also urged people to undertake a kidney health check, even if they feel well, as people often suffer with kidney disease without being aware of it.

Going forward into her new life, Kirsty said she had learnt a lot and felt ‘much stronger as a person’ than she did three years ago.

“I value life a lot more, I don’t take things for granted,” she said. “I’m going to protect this kidney with everything I have.”