Warren Higgs has suffered multiple strokes and aneurysms due to his condition, he told Citizen Free Press.
According to a GoFundMe page, he had a severe stroke 15 years ago due to ERP. That incident was followed by six other strokes.
“It’s horrible, it’s a nasty, nasty disease,” he said, adding that his kidneys were now so big that he couldn’t breathe properly because “they are crushing my lungs.”
The 54-year-old said that ERP causes cysts to grow in his kidneys. In some cases, the disease can reduce kidney function.
Higgs kidney function has been maintained but the organs have grown significantly.
His doctors don’t know the exact weight of his kidneys, but they estimate that they weigh between 30 and 40 kg each.
Higgs told Citizen Free Press that a surgeon said his kidneys were larger than those of the current record holder for the largest kidneys in the world.
In 2017, the Guinness Record said a man in Dubai who had a 4.25kg kidney removed was the record holder.
Two years later, Citizen Free Press reported that surgeons successfully removed a kidney weighing 7.4 kg from a patient in India.
“It is stealing life slowly,” Higgs said of his illness.
Higgs said he used to ride a bike and participate in triathlons, but is now unable to do so due to his condition. He is scheduled to undergo major surgery on July 12 to remove both kidneys.
“It’s a great operation,” he told Citizen Free Press, adding, “It’s really risky.”
Higgs will have to start dialysis after the operation and will likely need three or four surgeries after the first procedure.
He hopes to donate one kidney for research and take the other home as a souvenir in a glass jar. “I want to have some kind of life again,” he said.
Higgs is a beloved figure within his community in Windsor, where many people are contributing to a fundraiser to help him recover.
The fundraiser was organized by the Windsor Cars taxi company and the Driven Forward charity and the money raised will go towards a specially modified electric tricycle.
“It will help me regain my fitness,” Higgs said. “Then I can hopefully come back to life.”
The 54-year-old man particularly misses participating in sports with his 19-year-old son Sebastian.
Higgs had planned to participate in a Spartan Race, a major obstacle course, before falling ill.
“I’d like to go back, ride my bike, and do one of those Steeplechase with my son,” he said.