Fiona Loud
UK
After years of health problems (such as anemia and hormonal issues), it was only after the birth of our daughter by emergency cesarean that the signs of kidney damage were actually identified. I was fortunate to have a son two years later in a better-managed pregnancy. However, it took a further five years before routine screening for another medical problem indicated that there might be something seriously wrong. I was eventually diagnosed with kidney cancer and a rare genetic condition called tuberous sclerosis. I was told that my kidneys were likely to fail in 10 to 15 years. In the end, it only took three years. I spent five tough years on dialysis, both peritoneal dialysis and then hemodialysis in a hospital. First, one kidney and then the second kidney were removed after the cancer returned. Our young children had to live with the distress all of this caused. Eventually, I received a transplant thanks to my husband in 2006. Transplantation is an excellent treatment, although it carries its own side effects, such as (for me) skin cancer and vulnerability to infections.
I would very much like to see a system that is better at detecting a condition before it becomes a life-threatening problem. Once identified, I would like to see active treatment and advice; all I was ever given was blood pressure medication and iron. That is why I spend my time focusing on improving the quality of life of people with kidney failure, advocating for earlier detection and better access to the services and choices available to them, including transplantation. Since 2013, I have been policy director of Kidney Care UK, the UK kidney patient support charity, where we see the impact of kidney disease every day.
I am involved with numerous groups working to improve standards of care for kidney patients and lead the charity’s work on Covid-19, the organ donation opt-out law, and the continuation of dialysis provision in the EU post-Brexit. I set up and chaired the UK Renal Registry patient council and have contributed as a lay representative to many of the kidney guidelines produced by NICE. I am a member of the ISN Patient Liaison Advisory Group and was delighted to contribute to the international and national advocacy efforts that led to the WHO prioritization of kidney disease.
I am chair of the Organ Donation Committee at West Herts Hospital. In 2015, I was voted a Health Service Journal Top 50 Patient Leader. I have been elected as an honorary member of the UK Kidney Association in recognition of my outstanding contribution to the UK kidney community. My profile is in The Lancet.