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WEBISODE 2: Coming to Terms with ADPKD

"In some ways, ADPKD feels like a deeply personal disease. It’s something that’s happening inside you that no one can see. But it’s also a family disease."




Ever since Tony, Chris, and I were diagnosed with ADPKD, it’s been…overwhelming.

Six months ago, Lisa’s dad died of ADPKD. When she learned the disease was hereditary, she and her family got screened immediately.

Lisa was diagnosed with ADPKD, as were her brother Chris and her son Tony.

Her daughter tested negative.


It was like a bomb dropped on our family. I’m so glad my niece Sophie doesn’t have ADPKD, but my sister Lisa and I weren’t so lucky. Then my nephew Tony…

Children of a parent with ADPKD have a 50% chance of inheriting the disease.


It’s weird. In some ways, ADPKD feels like a deeply personal disease. It’s something that’s happening inside you that no one can see. But it’s also a family disease.


I’m slowly getting my bearings. For one, I realized how lucky I am to have my health insurance. I’m a high school teacher, so I have great benefits.

But what if I wanted to switch jobs? Now I have to think about health insurance.


Now that I know about ADPKD, I understand some of the symptoms I’ve been dealing with for ages. Abdominal pain. Frequent urination. My high blood pressure. I know it’s only going to get worse – maybe not tomorrow, but eventually.

My son Tony’s response has been different. He’s focused on all the scary end-stage stuff. Dialysis. Kidney transplants.

He called me the other day and said that some people with ADPKD have so many cysts on their kidneys that their kidneys get so big they have to wear maternity clothes.

I tried to be brave. I told him that he wouldn’t have to worry about those things for years. But I was scared too.


My sister Lisa calls me, bawling. Telling me that Tony’s taking it hard…real hard. So one weekend I showed up at his dorm.


I’m at a big conference for work, and all the sudden my phone starts beeping. Tony’s texting me. And there’s a picture of my brother, Chris: pink sweater vest, visor, argyle socks up to his knees. A golf club over his shoulder, and a stupid grin across his face.


I figured, why not? I’d never golfed before, and I’d never wanted to. But part of what was making Tony so upset was that he had to stop playing rugby. If he got tackled in the wrong way and hurt his kidneys, he could be in big trouble. So we went golfing.

And, man, we were terrible. Must’ve gone through a hundred balls, all lost in the woods and in the ponds. But we didn’t care.


As I saw the pictures come in, dozens of them, I couldn’t stop smiling. Tony and Chris are the last people in the world you’d expect to see on a golf course. But they were having a blast.

I told Chris he should put the pictures online. Post them to an ADPKD website to show other people how to cope with the disease.

When he did, he got some great comments from other people with ADPKD. He actually emails some of them now. It’s sort of like an informal support group.

I think it’s great. We have to learn to live with ADPKD.

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