I thought about contacting them to share mine, but my story isn’t much of a story at this stage. It’s more like a prequel. So I’m sharing it here instead, and if anyone thinks it’s worth sharing around to raise awareness, then please do so.
And if not, no problems. But you might learn something new about me. You might even learn something new about someone you know who seems perfectly healthy and carefree, but is actually carrying around a disease and the knowledge that one day, that disease will render one or more of their internal organs useless.
I have polycystic kidney disease.
It’s something I’ve discussed on the blog before. But it’s been a while. And things have changed around here since then. So it’s time to discuss it again.
I discovered I had polycystic kidney disease (PKD) when I was 20 years old. My brother had just turned 18, and mum told us we were both at risk. It’s a dominant-gene thing, my form of PKD. Our dad had it, so our chances were 50/50.
We were both tested. They found no cysts on my brother’s kidneys (and still haven’t to this day – HOORAY! – although that technically doesn’t rule it out yet). Mine? Well, let’s just say that the nurse doing my initial ultrasound mustn’t have known why I was there. Or figured I already knew. Or decided to try and calm my nerves with over-the-top chirpiness. “Ooh, there’s a cyst! And another one! My goodness, there are a lot of them! Look at them all clustered together there!”
So what does it mean? Using the most basic terms I can (because let’s face it, that’s how I understand it myself), having PKD means that my kidneys are covered in cysts. They continue to grow, and I can’t stop them from doing so. And as they grow, they impede kidney function to the point where one day, my kidneys will fail.
Kidney failure is a long way away. Kidneys are resourceful; according to Kidney Health Australia, people can live a near normal life with as little as 20% of their total kidney function. There were other, more immediate concerns. Kidneys control your blood pressure. And at 20 years of age, mine was already high. (And high blood pressure affects your kidneys. It’s a fun cycle where each condition exacerbates [and potentially accelerates] the other.)
High blood pressure and PKD are also connected to strokes. And, given my family history (both my father and my grandfather died following strokes), I was immediately checked for aneurysms. I’ve had surgery on cranial aneurysms four times, and thanks to the miracle of modern medical science (and the femoral artery), they’ve not yet had to crack my skull open to perform said surgeries. Although telling people that you’re limping because you just had brain surgery raises some eyebrows.
Boohoo, right? Not really. Knowing I have PKD actually puts me in a great position. I discovered as a fit and (outwardly) healthy 20-year-old that I have to manage my blood pressure and take care of myself. I know that I have cranial aneurysms, and while not all of my surgeries have been successful, I’m in a great position because we know what we’re dealing with. We know the risks of action versus inaction.
I’m not going to pretend that aspects of having PKD and aneurysms don’t suck. They suck hard. The blood pressure meds suck. The blood pressure meds I had to take while trying to conceive, during pregnancy and while breastfeeding sucked harder. The blood thinners I have to take infrequently suck even harder again. The surprise early birth of my daughter was terrifying. The MRI machine is a claustrophobe’s worst nightmare, and I have to slide headfirst into that tunnel every year. And the overwhelming, incapacitating days of pain I feel when a cyst ruptures? They suck the most. Super crazy big-time levels of sucking.
But when you play the comparison game, it all sounds so pathetic. These things are all so minor, so manageable, so NOTHING compared to not knowing what’s happening. Compared to finding out I have PKD later in life, when the damage is done and the only course of action left is to go on dialysis and pray for a new kidney.
I know about my PKD. I can manage it. I even have a friend who is adamant that she is all set to go when it’s time for a kidney transplant. I have an incredible team of doctors and specialists. In particular, my nephrologist is wonderful. No matter what his news or observation, I always leave his office feeling better. Calm. In control.
I know my body inside and out. My imperfect body. My imperfect yet perfectly capable body that has lived through almost 33 years, six major surgeries, two pregnancies and what is only the beginning of a lifetime of happiness and love. Only the beginning because we are ALL. OVER. THIS.
It’s Kidney Health Week next week. Go see your doctor. Get your blood pressure checked. Get your kidney function checked. Get your EVERYTHING checked. If you can’t remember the last time you saw your doctor, just go. GO. You might be nervous about something. But I believe that not knowing is worse than knowing. Knowledge brings power. Not power of the all-consuming, evil genius kind (MWAHAHA). Just power over your body, its limitations and your future actions.
So here’s some more knowledge for you, courtesy of Kidney Health Australia: every day, more than 56 Australians die from kidney-related disease. Most dialysis patients need treatment at least three days a week for five hours a day to stay healthy. 11,446 Australians are on dialysis. 1,087 Australians are waiting for a kidney transplant.
And there is no cure for kidney failure.
It’s Kidney Health Week (#KHW15) next week. Wear red. Support Kidney Health Australia (if you’re in a position to do so). Support anyone and everyone you know with a chronic kidney disease. It’s not a particularly sexy disease (for want of a better word), and it’s hard to get word out there. So help us spread it, if just for this week.
Do you have a kidney disease, or know someone who does? Do you have a story to share?