‘It’s a disease that’s fatal at some point’

Steve
Steve Bartlett
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Organ donation is eventually the only option for people with polycystic kidney disease

Averell Childs figures he’ll die young.
He expects something called autosomal dominant polycystic kidney disease, or PKD, will take him.

Averell Childs is living with a medical condition called autosomal dominant polycystic kidney disease. — Photo by Rhonda Hayward/The Telegram

Living with it is a burden, but he does what he has to.

“A lot of people plan their retirement and what they are going to do with their golden years. The realist in me knows that I don’t have that option. I’m probably going to die at a young age,” he says. “I know that’s going to be the long-term impact.”

Today is the first National PKD Awareness Day. Canadians are sharing their plight with a disease that starts with cysts on the kidneys.

“The cysts grow and burst and create scar tissue,” explains Childs. “Eventually scar tissue becomes the dominant part of the kidney and it renders the kidney less functional to the point where it becomes non-functional.”

The 49-year-old Conception Bay South resident discovered he had PKD in his late teens or early 20s after he started suffering gout.

His dad suggested it was part of the disease “they” have.

PKD is hereditary and it eventually claimed his father. It’s also taken his grandmother and other relatives. His 50-year-old cousin and friend was recently put on dialysis with it.

“For the most part, it’s a disease that’s fatal at some point,” says Childs, who’s originally from York Harbour, a west coast community where PKD is well-known.

But rather than give up, he’s doing what he can to manage the disease and live a regular life.

He eats healthily, watching portions as well as salt and protein intake.

“I’m the guy at the grocery store picking out the smallest steak,” Childs jokes.

Childs also hits the gym regularly. He’s among a fitness minority — he actually enjoys the treadmill.

“I’m a big believer in the fact that regular exercise is a good medicine for anything that ails you,” he says. “I’d like to think it’s helped me control my blood pressure, which is one of the things they try to get you to do to manage PKD.”

There’s no cure or treatment. A kidney transplant is the only possible option.

Right now, Childs’ kidney is functioning at about 45 per cent. He’ll become a transplant candidate when it dips to 10 or 15.

His disciplined approach to fitness is part of the preparation for that day.

He wants to avoid a situation where doctors say he’s not healthy enough for a transplant — if, as he suggests, he’s lucky enough to get one.

“Amazingly, in this day and age, a lot of people still don’t sign their organ donor cards,” he says.

That’s ridiculous, really.

We as a society have completely dropped the ball when it comes to organ donation.

People are suffering, often for long periods of time, as they wait for transplants. Some die waiting.

Someone who needs a kidney, for example, often has to wait years.

It’s time we collectively changed this and helped people live longer and healthier by signing a simple card.

An organ is like money. It’s no good to you when you’re gone.

 

Steve Bartlett is managing editor of The Telegram. Email him at  sbartlett@thetelegram.com. On Twitter, he’s @TelegramSteve.

Organizations: The Telegram

Geographic location: Conception Bay, York Harbour

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  • ula laing
    September 06, 2014 - 17:40

    i do believe the man in this story is my first cousin, i also have pkd and suffers a great deal of back pain quite often , so please if you could just sign that doner card, you would be giving quite a gift to someone who badly needs it.

  • Kathy Brinston-LeRoy
    September 04, 2014 - 18:06

    You can have one of mine anytime Dear Cousin...proud of you...