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I had the world’s largest kidneys removed – now I'm scared I’ll die without a donor

It was an operation that promised to give Warren Higgs a new life. In October 2021, surgeons removed his record-breaking kidneys after they grew to such a huge size that they began crushing his other organs.

However, two-and-a-half years later, a shortage of donor kidneys means he is still waiting for the transplant that would save his life. In that time, Warren has become so weak that he struggles to stand. He spends four days each week having dialysis and fears he is running out of time.

“When I had my kidneys removed, I thought my life was going to get better, but it is so much harder,” says the 54 year old, who lives in Windsor, Berkshire. “I don’t know if I will make it to the end of the year without a donor.”

At 30, Warren was diagnosed with polycystic kidney disease, a genetic condition that caused fluid-filled sacks to grow on his organs. His kidneys swelled to around 15kg each, the largest ever recorded.

The strain on his body caused him to suffer several major strokes, the first when he was just 35 left him paralysed down the right side of his body and he spent a year in hospital undergoing rehab.

Despite this, Warren remained active, competing in archery competitions and completing two triathlons with his nurse. “I hobbled through the run, but I could cycle as well as anyone,” he recalls.

Almost 20 years later, he was even cycling to hospital appointments. “The doctors didn’t think my kidneys could be as bad as they were if I was still doing that,” he says. “It wasn’t until they did a scan that they realised how big they had got and said they needed to operate as soon as possible.”

Sadly, Warren’s health has deteriorated rapidly since beginning dialysis, and hospital sessions often have to be cut short as his body reacts badly to the treat- ment, causing his blood pressure to plummet until he passes out.

“In a few minutes, my blood pressure can go from 180 to 40 or 50,” he explains. “That makes it hard for them to finish the procedure, so I’ve gained 30kg in retained fluid. I regret having my kidneys removed so quickly, even though they were killing me and I was struggling to breathe.

“I wish I could have waited longer because I have deteriorated so much and just keep getting worse. I have to use a wheelchair to get around now. I just want to get back on my bike and back to the person I was before.”

On days when Warren has dialysis, he typically only eats one yoghurt and a croissant. Healthier options he used to favour, such as bananas, are off the menu because they are rich in potassium, which needs to be processed by the kidneys. Fluids have to be limited to just 750ml a day.

“I have a cup of coffee in the morning, most of which is used to wash down 16 tablets,” he says. “I get two gulps to enjoy without pills, then I can’t drink again until the evening so I have enough left to take my tablets at 6pm and 9pm.”

Despite this, Warren tries to maintain a positive outlook and is having physiotherapy sessions in a bid to walk again. “Sometimes I get very down, but I hope my story will encourage people to consider donating a kidney,” he says.

Several strangers have offered to give Warren a kidney, but only one proved a suitable match. She completed all the tests and psychological assessments, but pulled out two days before the transplant was due to take place in February 2023.

“That was heartbreaking,” Warren says. “I was getting ready for the operation. I’ll never know why she changed her mind.

“I have a 21-year-old son, Sebastian. I want to see him settled before I go, but I don’t know how much time I have left without a transplant.”

Give a Kidney and Kidney Research UK are campaigning for more living donors to put an end to people dying while waiting for a transplant. Learn more at donateakidney.co.uk and organdonation.nhs.uk


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