September is Polycystic Kidney Disease (PKD) awareness month.
I have autosomal dominant polycystic kidney disease (ADPKD) which I inherited from my father, who died of kidney failure in 1998.
The ‘dominant’ bit means that there is a 50/50 chance of passing it on to my children. My family was unlucky: my brother and sister are also affected. We’re currently waiting until our children are in their late-teens or early twenties to learn whether they have inherited it from us too.
Disappointingly, ADPKD is the most commonly inherited kidney disorder in the world affecting between 1 in 400 and 1 in 1000. If I was going to have something wrong with me, I at least wanted something exotic and rare!
ADPKD is a caused by a genetic fault that affects some cells in the kidneys. It disrupts the normal development of the kidneys causing cysts to grow.
Over time, the kidneys continue to grow as the cysts get larger.
If you have normal kidneys, they are roughly the size of your fist. Mine are bigger than that—they can’t see them on a single ultrasound scan. Some people, like some members of my family, currently have kidneys that are about the size of a rugby ball or American football.
On a day to day basis, my kidney disease doesn’t affect me much. I feel more tired than I would otherwise. I have to avoid taking salt in my diet. I have to drink a lot more water and I avoid caffeine drinks like tea and coffee which just make me feel terrible.
I have a renal/nephrology check-up every six months at the hospital where they test my urine, take a few vials of my blood and send me home telling me to try to lose some weight and maybe consider trying their new medication, Tolvaptan, which seemingly halts the development of cysts… at the cost of making you pee about 7 litres a day (including through the night).
I’m trying to improve my diet and exercise more (difficult with a herniated spinal disc!).
You can find out more about PKD on the NHS website.
The PKD Charity UK does an amazing job supporting people with PKD and their families.
You can find out about the latest goings on throughout September by following the #PKDAwareness hashtag on Twitter.