‘My dad’s kidney was 30cm wide and weighed six kilos’

Polycystic kidney disease (PKD) certainly has not dampened 23-year-old Cameron Dyer’s spirit but he is still longing for a cure after seeing his father’s struggle with the disease.

Thanks to a clinical trial being carried out at Westmead Hospital in conjunction with the Westmead Institute for Medical Research, a safe and cheap treatment may not be far away.

PKD is a common genetic condition that forms numerous cysts within the kidneys, causing them to grow and lose function over time. Because it is inherited, multiple generations in a family, as in Cameron’s case, can be affected by PKD. Cameron’s sister also has PKD.

“I got polycystic kidney disease from my father and my sister has it too,” Cameron said.

“My dad was quite sick. Before his kidney was removed, it was 30 centimetres wide and weighed six kilos.

“Medical students were visiting my dad at his hospital bed to witness the size of his kidney.

“He was running on three per cent kidney function for a few years, so he is really lucky he got a kidney transplant at Westmead Hospital about 18 months ago.”

Cameron was the first to join Westmead Hospital’s trial to explore the effect of drinking water on the kidneys, which can influence the growth of the cysts.

The trial is being conducted by a team that specialises in PKD at Westmead Hospital’s renal department led by Dr Gopi Rangan, Dr Annette Wong, Ms Carly Mannix, Professor David Harris and Professor Jeremy Chapman.

The study commenced in December 2015, and the final (287th) trial participant was selected in May 2018.

It has been strongly supported by the PKD community, with patients travelling as far away as Broome to be involved.

The study is separated into two groups – one group will continue their usual water intake and the other will drink a prescribed amount of water per day.

The researchers are using MRI scans of the kidney to accurately identify the ideal amount of water to drink to slow the growth of cysts.

Dr Rangan said this trial is an important step forward.

“I believe that this trial will provide the first step towards understanding how to eradicate kidney failure due to PKD. The four to five million people estimated to have this condition around the world are counting on us to get it done,” Dr Rangan said.

“The final results of the trial are expected in 2021, after which they will be combined with other study results to develop clinical guidelines on water consumption for people with PKD.”

The PKD trial is funded by the NHRMC, the Westmead Medical Research Foundation, The University of Sydney, PKD Foundation of Australia and Danone Nutricia.

For more information about PKD, visit https://pkdaustralia.org/