Kidney disease can be life-changing
Kidney Research UK volunteer Melany Gray wants to make a difference. She hopes that by sharing her story, she can help to persuade the Scottish Government to create a national strategy to combat chronic kidney disease (CKD).
The effect of a long-term condition
Melany has lived with chronic health conditions since the age of 12. Just after starting secondary school she was diagnosed with type 1 diabetes.
It was tough at times, managing the condition whilst going through the key life stages of becoming a teenager and then entering adulthood. But she took care of herself and kept her diabetes under control.
But just as she reached her thirties everything changed. A sudden bout of extreme sickness resulted in a hospital admission after her GP diagnosed sepsis, caused by a severe urinary tract infection (UTI). Antibiotics failed to clear the infection and she was hospitalised once more and then prescribed long-term low dose antibiotics to manage recurring infections. During scans to try to determine the cause of the infections doctors discovered that her kidneys were badly damaged.
“Prior to the scans, there had been no indication of any issues with my kidneys. I’d had my usual blood tests for my diabetes a month before I fell sick and everything seemed fine,” says Melany.
“Then suddenly I found myself in a situation where I was being told that my kidney function had deteriorated so badly that I would need dialysis by the end of the year.”
Further investigations eventually revealed that a bladder condition had caused the recurrent UTIs which had then caused the kidney damage.
In 2018 Melany began having haemodialysis sessions, three times a week (where blood is pumped out of the body and filtered through a machine) but she encountered many problems. There were difficulties connecting the dialysis needles to entry points in her arm and chest and she felt instantly drowsy, ill and sick as soon as each session began.
“It was very traumatic for me and I started having panic attacks. There were even days when I refused to go in for my dialysis sessions because I got so distressed before I even left my flat,” says Melany.
After five months on haemodialysis, Melany decided to try peritoneal dialysis instead (where the abdominal cavity is regularly flushed with fluid to drain away toxins using a catheter through the abdomen). But she had to leave her fifth floor Aberdeen home and move into a ground floor flat in order to have enough storage space for all the equipment she needed and to ensure that her dialysis supplies could be easily delivered, without the risk of lift breakdowns.
In 2020 Melany prepared herself to undergo a procedure to assess whether she could proceed with preparations to receive a live donor kidney transplant from her father, but just as the procedure was due to go ahead the country went into lockdown.
Her transplant operation eventually went ahead in March 2021 and Melany’s new kidney continues to do well.
Helping to raise awareness
Melany learned about the work of Kidney Research UK during her frequent visits to hospital and her renal unit. She joined social media groups, linking other kidney patients, and volunteered to take part in a roundtable event organised by the charity in September 2022.
She joined other patients, clinicians, researchers and representatives from the Scottish Renal Registry, the Scottish Donation and Transplant Group, the Clinical Trials Network and the UK Renal Data Network at the event to identify opportunities to transform outcomes for people with CKD in Scotland. Their conversations revealed that kidney disease is often invisible and overlooked within the country’s healthcare system.
“Kidney Research UK has been a great support for me and now I want to share my story to help others,” says Melany, who is supporting our Ken Yer Kidneys campaign to urge the Scottish government to develop a national strategy to combat chronic kidney disease.
“People need to know more about kidney disease and understand the effect it can have on your life.
“When I knew I would require dialysis I couldn’t comprehend what that would mean for me, what it would involve and how it would change my life. It was overwhelming and frightening.
“Dialysis is the only treatment for kidney failure bar transplant, but it has its risks – and it can’t cure kidney disease.
“There are circumstances where kidney disease cannot be prevented, but just like many diseases, early detection is vital and for many people disease progression can be slowed down if it can be picked up early and people can make small changes to reduce this.”