Living with Chronic Kidney Disease
Darwin local Rob Smith is battling chronic kidney disease and has been on dialysis for the last 10 years of his life. Taking the disease in his stride, Rob is hopeful research will find a cure and change his life.
With your support, our researchers are determined to find better treatments and an ultimate cure for Rob and so many others living with this chronic condition.
Rob began noticing something wasn’t right around six months before his eventual diagnosis with IGA nephropathy, a common type of chronic kidney disease.
“I had been perpetually exhausted, but I had a stressful job at the time and I was doing very long hours, so being a bloke I just ignored it and thought I was getting old,” Rob said.
“I then noticed my urine was quite foamy and a dark colour. No matter how much water I drank it wasn’t getting any lighter. Whilst this was happening my palate began to change, the taste of meat and beer made me feel sick – I knew something was really wrong!
“All I wanted to do was eat fruit, it was quite odd. So eventually I went to the doctor and I blew the mercury out of the blood pressure gauge. That’s how it all started.”
Rob’s kidney disease had moved fast, and by the time he saw his doctor, his kidneys were at 25 per cent function, meaning dialysis would not be far off.
“A couple of months later I was on dialysis, I went downhill quite quickly. I was on haemodialysis for about a year at the clinic in Darwin, and then I changed to peritoneal dialysis for six months before I had a kidney transplant.”
In what appeared a stroke of luck, Rob’s wife Jo was a perfect blood match, and in 2007, a kidney transplant was performed at The Queen Elizabeth Hospital in Adelaide.
“The transplant itself went extraordinarily well, but sadly the original disease came back at lightning speed,” Rob said.
“I was back on dialysis within a few months. It was a bit of a rollercoaster.”
At this point Rob explained he opted for Nocturnal Home Haemodialysis after researching that dialysing three nights a week or alternate nights was sufficient, but dialysing six nights a week provided the best clinical results.
Soon after Rob was dialysing eight to 10 hours, seven nights a week.
“When I was having dialysis at the clinic I felt like half a human being, I had no energy and I constantly felt mildly nauseous,” Rob said.
“With nocturnal dialysis I set myself up, watch a bit of television and then I go to sleep. Don’t get me wrong it’s a pain having to do it every night, but the benefits far outweigh the drawbacks. I can eat fruit and have a glass of water pretty much whenever I want, which I could never do before.
“My blood results are now almost like I’m a normal human being.”
Not letting his kidney disease define his lifestyle, Rob and his wife have travelled overseas and have even toured around Europe in a caravan with a dialysis machine. Currently working part time, Rob is one half of the ABC radio show ‘Tales from the Tinny’ in Darwin, where he has taken outback fishing trips with his dialysis machine in tow.
“My wife and I decided once the transplant was over, if I was going to be on dialysis, then we were going to be the world champions at it.”
Rob is confident research will continue improving treatment options for others like him living with chronic conditions.
“For the moment I’ll maintain dialysis, but down the track, who knows. I’m hopeful research finds new ways to help me live my life.”
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