My family has a long history of kidney issues. My grandma died of kidney failure, though she was completely oblivious of having kidney problems her whole life. My mum ended up in hospital in her fifties. Again, she knew nothing about the problem before then, but suddenly was told that she had something called polycystic kidney disease, which would eventually lead to full kidney failure. She would need to either start life on dialysis, where she’d need to be hooked up to a machine several times every week, or else she’d need to get a kidney transplant.
That moment felt like a big box opening for all of us. Suddenly everybody realised that the health issues the family had been experiencing were linked. We knew next to nothing about the kidneys before then. Even afterwards we didn’t know much about it at all, so we just pushed on with our lives. What else could we do?
Fast forward many years, and I found out that I had a water infection. I didn’t think much of it at first and assumed it would get better on its own, but it gradually got worse and worse, until I ended up in hospital. I told the hospital team that my mum had kidney disease and they immediately realised my issue. They treated my infection, but also discovered that I too had polycystic kidney disease. They explained, it’s quite common for people to live with some sort of early kidney disease and never even realise, until it reaches a precipice and drastic action is needed.
I’m married to a mountaineer. He first really introduced me to outdoor living and making the most of the natural world. We lived a better life than I ever did before – we stayed fit, drank lots of fluids, and ate well. That all helped to keep me fitter for longer. But I still knew that this was just delaying my kidney disease. It would progress slower because of my healthy lifestyle, but it would still progress.
Dialysis or donation
When I was told that I would either need a kidney transplant or to start dialysis, I knew what my preference was. I had seen what dialysis involved for my mum, and I knew it wasn’t something I wanted for myself if there was any alternative. Dialysis keeps you alive, but it takes away your capacity of life. Three or four times a week getting attached to a big machine that takes out your blood, cleans it, and puts it back in. I didn’t want that for myself.
I hadn’t discussed my kidney disease much with friends and family. They knew I lived with it, but I didn’t want to be defined by it or let it rule my life. At this point, though, I realised I needed to speak more openly about my illness. Otherwise, nobody could step forward and donate, even if they would be open to it.
I put a message on social media explaining my situation and that I was looking for a kidney donation, or else be faced with life on dialysis. In the end, my friend Lisa came to the rescue.
