Polycystic kidney disease
"I was diagnosed with polycystic kidney disease (PKD) when I was about 15 and at that age, it didn't really sink in. When I was first diagnosed, I was just told to go and live my life. I was only young, and I was told that my kidneys would fail eventually but that it was years away. I just wasn't really aware of what was ahead of me. My mum and sister were later diagnosed with PKD in their 50s. We have a history of it in the family.
"Around the age of 36, that's when I started having problems. I found out my kidneys were slowly deteriorating, my function was dropping, and that was when it really hit me that I might end up on dialysis. I think I went into denial. It was the fear of the unknown and I pretended it wasn't going to happen.”
Dialysing at work
"When I started treatment, I went onto continuous ambulatory peritoneal dialysis (CAPD). One of the dialysis nurses told me to make dialysis work around me, not the other way round. Thanks to that conversation, I learnt to get efficient at the exchanges, and got it down to 20 or 30 mins per exchange. I carried on working full time, doing exchanges before work, then in my lunch hour, then after work. I went abroad to Spain, had all my fluids delivered to the apartment I stayed in and did exchanges there. I was even able to go swimming in the sea. I didn't let dialysis stop me doing anything.
"I think what made me so nervous about starting dialysis was having seen my mum on haemodialysis (HD). But the dialysis units we have today are a lot better than they used to be – I've seen how much it has changed in 30 years. My sisters have been on HD, too, and I must admit I've found the CAPD a lot easier on my body than they ever did.
"I have a niece at the moment with PKD. She is early 40s and she will eventually go on dialysis which she knows, and I've said to her when she does, just to carry on with her life. I tell her what the nurse told me: 'Make dialysis work around you.'"
Getting the transplant call
"It was an August bank holiday in 1993 when I got a call from the kidney unit saying they had a kidney for me. I had loads of tests and I remember the consultant said the donated kidney was a near perfect match. I knew my life was about to change.
"It didn't seem real until it happened, until I was in hospital surrounded by bags of fluid. I was in hospital for nine days and then they let me go home. I went to the unit every day to check bloods, and then just carried on with life as normal – as normal as normal can be. I took it as it came, really, one step at a time.
"As with my initial diagnosis of PKD, I don't think I was really prepared for how dramatically my life would change. After the transplant I could eat anything that I wanted – it was great to have cheese again! A few months after my transplant I went on a Caribbean cruise. The places I went to were unbelievable, I felt so lucky. Today, 30 years on, my transplanted kidney is deteriorating is a little, but it is still holding its own."
Cruising into the future
"A friend told me about Kidney Care UK when she was on dialysis, and I signed up to the email list. I then contacted the charity during the pandemic; I remember ringing up for information as I had been told I had to work from home, given my low immune system, and they were so helpful.
"For me, kidney disease means you’re not an ordinary person. You've got to be more careful about certain things in life. But, like my nurse said to me about dialysis, you have to make kidney disease work around you. You just have to adapt.
"I've booked a cruise for 2024, cruising around Croatia and Italy with my partner and my niece. We’re going for two weeks. We're stopping off in Sicily, so I’m hoping to try the food out there as I love Italian food! Do not be afraid of kidney disease and live your life as much as you can."
