Nicole Scholes
Australia
The Diagnostic Journey: I was diagnosed with IgA nephritis (IGAN) at the age of 42 following a case of strep throat, which led to me needing to go to hospital. Following a blood test, they informed me that I had a very low kidney function. Four weeks later, I had my first kidney biopsy and was diagnosed with IGAN. I was prescribed high-dose steroids at this stage, but they did nothing to improve my kidney function. I then caught swine flu in the next 12 months, which also impacted my kidney function, and was told in July 2013 that I would need to start dialysis soon. I started peritoneal dialysis in March 2014 and received a living donor kidney transplant from my younger brother, Andrew Burgess, in November 2014. My new kidney, nicknamed “hand-me-down,” is going very well, and I am truly amazed at all the incredible things that I can do with a transplant.
Living with the disease: For me personally, the most significant aspect of living with kidney disease is the amazing people, both patients and health professionals, that I get to meet. Having kidney disease led me to a new career in research and patient involvement, which has opened many opportunities for me personally. One of my favorite opportunities was spending two years living, working, and attending appointments in the remote town of Alice Springs, Australia. I got to meet amazing Aboriginal and Torres Strait Islander patients from very remote parts of Australia who inspired me so much.
Everyday Barriers: For me, there are not too many barriers, but fatigue has been a constant issue throughout my chronic kidney disease journey. I have had to learn to pace myself more and to rest when I need to. This has probably been the greatest challenge, as I am not good at resting or pacing myself. Most of the barriers I face, I am able to find a pathway around, through, or over.