A woman from north Norfolk has opened up about the many surgeries she has needed to survive over the past 20 years due to her kidney disease.

Caroline Culot, who lives near Aylsham, was excitedly preparing to be a new mum back in 1997 when doctors noticed something unusual.

A blood test indicated that Caroline was anaemic - something that is not uncommon in pregnancy - but what spooked doctors was her elevated creatinine levels.

Caroline’s consultant hoped that after the birth her levels would return to normal - but she then found out she would need dialysis.

North Norfolk News: Caroline Culot enjoying a walk with her partner KitCaroline Culot enjoying a walk with her partner Kit (Image: Supplied)

She said: “I was in denial, I just didn’t believe it.”

“I looked and felt well and had just had a baby and was so excited about the future.

“Yet doctors were telling me my kidneys were failing and I needed dialysis, it just didn’t seem possible.”

Caroline, a former EDP journalist, said she had always been sceptical and challenged everything, so fought against the idea her idyllic life was under threat. 

She said: “From the moment of becoming a mum to my son, Leon, I was prepared to fight every step of the way for him. I didn’t want him to be without a mum.”

North Norfolk News: Caroline and her son Leon celebrate his graduation at Cambridge UniversityCaroline and her son Leon celebrate his graduation at Cambridge University (Image: Supplied)

Caroline’s life was plunged into a world of medical jargon, clinic appointments and multiple surgeries. 

She was fitted with a central venous catheter or ‘neckline’, a tube inserted into her neck, to help her dialyse, and later more surgery was needed to fit a fistula - the connection of an artery with a vein to enable large needle insertion.

She said: “The worst part about some of the operations was that I had to be awake and I’m such a squeamish person.

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North Norfolk News: Caroline Culot recovering from surgeryCaroline Culot recovering from surgery (Image: Supplied)

“I originally chose peritoneal dialysis because I could do it myself at home, so it gave me the flexibility to work part-time and to look after my son.

“My spirit plummeted when a few years later I was told I needed haemodialysis at hospital three times a week because I knew my freedom was slipping away.”

Caroline’s surgery count continued to rise when her first fistula failed, and she had to have another made in her right arm instead. 

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Her anaemia meant that she also required many blood transfusions, one of which unfortunately gave her the antibodies that doctors feared would prevent her from ever having a transplant.

But against the odds, she would go on to have three separate transplant operations.

Her first transplant in 2007 gave her seven years of joy despite suffering from complications.

Her second, in 2016, was a result of her 78-year-old mother donating a kidney, but this soon had to be removed after a spate of pneumonia, which meant she had to come off some vital medication.

She went on to undergo another operation to have the kidney removed – and found herself back on dialysis again.

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Caroline went on to have a third transplant in April last year - and this kidney has served her well so far. 

She said: “I spent much of my life believing that I would never be able to have a transplant, so I remember feeling a mix of emotions – predominantly joy and disbelief - when the call finally came.

“However, I also felt guilty about where the organ had come from, anxiety about whether it would work and fear because I’d gone through two failed transplants. 

“You learn not to dare to dream.

“When the new kidney starts to make urine and you need to go to the loo, something so many people take for granted, or even see as an inconvenience, it is a truly euphoric moment. Suddenly hope returns.”

Kidney disease: A UK public health emergency

Kidney Research UK estimate that in Norfolk alone, 129,000 people are living with kidney disease, 45pc of which (58,000) are living with the most severe stages (three to five).

Kidney disease is a chronic condition that requires multiple surgeries just to keep patients alive but as the number of people affected rises, so too do the costs to the NHS.

A recent report for Kidney Research UK estimates that the economic impact of the disease on the UK could reach £13.9 billion by 2033, nearly doubling the current £7 billion figure in 2023.

Caroline has become a volunteer and ambassador for the charity, and along with others, is looking to spread awareness of the condition and the vast impact that it has on the domestic economy.

Through proper intervention, the government can reduce the burden the disease has on the health service and save an estimated 10,000 lives by the next decade.

Caroline volunteers for the UK Organ Donation and Transplatation Research Network, part of Kidney Research UK. To find out more log on to UKODTRN.org