Congratulations on your pregnancy,” a well-meaning older lady calls over to me. I’m standing on a bus, in Greece, on holiday with my husband Richard. I simply nod and smile but she then makes a big deal of telling a passenger to give up their seat for me. I’m mortified.
It’s a situation I’ve become oddly accustomed to, but I’m not preparing to bring a child into the world. I have autosomal dominant polycystic kidney disease (ADPKD) – a condition that could ultimately kill me.
I have a cyst in my kidneys that will continue to grow until there’s no kidney left. It causes my stomach to protrude. And my kidney, which is meant to clean my blood and rid my body of toxins, will soon be completely unable to function.
I’ve learnt to hide my visible symptom – the swollen stomach – with baggy clothes in the winter. However, in the summer months, especially on holiday, it’s more difficult. Plus, I still want to wear nice things and feel pretty. I have to accept the dirty looks I get for ordering a glass of wine while looking pregnant.
It was 2010 when I was told my body, and more specifically my kidneys, were betraying me.
My mum had ADPKD and as it’s hereditary, I thought it was sensible to get checked out, despite feeling healthy at the time.
When the doctor told me the results of my ultrasound, I was shocked. It felt like my world was coming to an end. Richard was really upset but he tried to be strong for me. We kept a lot of the realities of my diagnosis from the children.
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