Katie’s PKD belly: ‘I can’t believe I carried all that weight’

Back in 2022, during PKD Awareness Week, Katie Banks from Swansea took the brave step of sharing the reality of living with an extremely large ‘PKD belly’.

Katie’s abdomen had become so large that people regularly assumed she was pregnant. In reality, her kidneys had become enormously enlarged by PKD cysts, and her liver had also grown. She became so tired of explaining herself, sometimes, it felt easier to pretend she was pregnant. “To save people’s embarrassment, I often just go along with it and let them go on their way,” says Katie.

Alongside the pain and infections, Katie struggled to find clothes that fitted. She was a size 12 elsewhere but needed much larger sizes around her middle. Eventually, she turned to maternity clothes simply to feel comfortable.

Her story struck a chord with many people living with PKD from all over the world. A ‘PKD belly’ happens when cysts grow in the kidneys, causing them to become enlarged and change shape. Healthy kidneys are usually about the size of a fist, but PKD kidneys can grow much larger.

Both women and men with PKD can develop a large abdomen, which can cause ongoing pain, digestive problems, breathlessness and even difficulty bending to perform day to day tasks, such as tying shoe laces. As cysts gradually replace healthy kidney tissue, kidney function can decline and, for many people with PKD, eventually lead to kidney failure.

Katie received a kidney transplant on 18 March 2023 – a gift she says she will always be grateful for. But her problems with her old kidneys didn’t end there.

“A couple of months later, a cyst erupted, leading to significant blood loss and sepsis. After that, I could literally feel an orange-sized ball on my left side” she explains. 

A year after her transplant, Katie was referred to a surgeon in Cardiff. At the time, the risks of removing her kidneys (nephrectomy) were thought to outweigh the benefits. But over the next two years, Katie felt her abdomen was getting even bigger.

“I felt absolutely massive.”

This year, Katie pushed for another referral, and the surgeon agreed that removing her old kidneys was the right option. Her PKD liver had also grown and was sitting on top of her kidneys.

Katie had both kidneys removed using keyhole surgery – removing part of her liver too would have required open surgery and a much longer recovery. It was still a major operation. Her old kidneys weighed a staggering 5kg on the left and 3kg on the right.

Recovery has been slow, with Katie needing a drain for several weeks and dealing with low sodium levels. But although she is still healing and a little swollen, she is already noticing a difference.

With less pressure on her stomach and intestines, she is beginning to experience some relief from her digestive problems and is finding it easier to breathe. “I can’t believe I carried all that weight for years! I’m so glad I pushed for them to hear me,” she says.

And there’s more good news. Katie’s new kidney is working better than ever, with her eGFR now at 59, compared with her usual level of around 40.

“I might actually be able to buy something in a normal size! I can’t wait to show off my new body!”

Katie hosts the PKD Cardiff group, although she is taking a break while she recovers. The group’s next meeting will be held online in October.

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