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Luke's story

Luke was diagnosed with end-stage-kidney-disease at just 23 years old. Now, he supports the Kidney Youth Program and is on advisory committees to improve kidney care.

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A few days before I was diagnosed, I went to a new clinic and saw a new doctor for a foot problem I had. My foot was swollen, slightly yellow, and very sore. It first hurt when I put on a shoe that had been outside for a while, so for about 3 weeks I believed it was a spider bite and had medication meant to treat that. The new doctor believed it was gout and took a blood test. I remember being very faint and having trouble walking that day. When I got home around 9pm, my dad was called by the doctor, who said my creatinine was 800 and indicative of a severe kidney problem. He had organised for me to be admitted at Flinders Medical Centre Emergency, and I was to go there immediately. Once there, I spent three days in hospital, doing blood tests, urine tests, ultrasounds etc. On the third day, a team of doctors told me and my parents that I had end-stage chronic kidney failure, and that with dialysis and a transplant I’d live a normal life. I was 23. They also said that my last blood test, taken when I was 18, showed a creatinine of 150 (2x the average healthy amount), suggesting I had been declining for a long time.

“Spider bite” being gout as above; I was not aware I had kidney disease. I believed the lethargy, exhaustion, faintness, headaches, and difficulties focusing and remembering, were all symptoms of depression, for which I sought counselling. I also remember having very itchy legs.

Before diagnosis, between the ages of 18 and 23, my personal, academic, and work life all severely declined. I went from the highest grades in all of my high school classes, to receiving two strikes from the university I attended due to failed classes and non-attendance. My friendships and romantic relationship, and relationships with my family to a lesser extent, were dismal. I was not engaging in hobbies or sports, and I was binge-drinking in social settings. I did not make any lifestyle changes as I believed my problems stemmed from depression, and the counselling seemed ineffective.

I received a living transplant from my father in November, 2017. I was briefly on the deceased donor transplant list in 2017 after diagnosis, in case a perfect match turned up that would mean my father didn’t have to donate.

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I had zero awareness of kidney disease – I vaguely understood that kidneys could be injured or fail like any other organ. But I trusted none of my general knowledge which came from medical shows like House.

I was misdiagnosed and suffered needlessly in every aspect of my life because neither me nor anyone around me understood that I was showing symptoms of kidney disease. Although it is more rare, it does present in young people, who have a lot to lose. Raising awareness means a better chance of early detection, more effective treatment, and maintaining a higher quality of life than otherwise.