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WEBISODE 1: Getting an ADPKD Diagnosis

"We flew out to California for our father’s funeral. On the plane, mom told my sister and me that he may have died of a kidney disease. That was a surprise."




I take care of myself. I eat right and exercise. I’ve always been in pretty good health. Then this.

Chris recently lost his father. It wasn’t until after he died at age 63 that Chris learned the cause – autosomal polycystic kidney disease. ADPKD.


If dad had been in our lives, and if I had known about his disease… I don’t know if I would have started a family. Now my children might have it.

ADPKD is passed on genetically. Children of a parent with ADPKD have a 50% chance of inheriting the disease. Lisa had two children long before she knew ADPKD was in her family.


We flew out to California for our father’s funeral. On the plane, mom told my sister and me that he may have died of a kidney disease. That was a surprise. Apparently, he’d always had problems with his kidneys. I asked my mom if there was any chance that it ran in the family, and she said she had no idea.

When Chris and Lisa’s parents divorced, they were both young children. Their father moved away, and they rarely saw him.

Apparently they never talked much about his health problems. But then I got to thinking about my own life – my high blood pressure, the nagging pains in my sides. Was it kidney disease?


Maybe a month after the funeral, my brother Chris calls me. I could hear something in his voice, just from the way he said hello.

He told me what he had learned about this disease… that it’s genetic, and that it runs in our family.


I told Lisa that I had seen a kidney specialist, and that I had ADPKD. And I told her she needed to talk to her doctor, too. And, of course, her kids.


I got online, and it was like a nightmare deepening with every click.

Even though everything I read said that the disease progressed slowly, I panicked. I called my kids, Sophie and Tony, first thing in the morning. They’re in college, and I told them to make an appointment with the doctor on campus.


I told Lisa to take a deep breath and not to search for ADPKD online until she talked to her doctor. I doubt she listened to me. I know I wouldn’t have.


I was awake all night thinking and worrying. Did I do the right thing telling the kids to see a doctor? What would it mean for them to be given this label? But, in the end, I decided knowing was better than not knowing.

My appointment was about a week later. My doctor didn’t know much about ADPKD, but she referred me to a nephrologist who specializes in kidney health.

Another week goes by between appointments, and then the nephrologist tells me to make an appointment with radiology. Somehow, I managed to stay calm throughout the ordeal.


One of the hardest things at the beginning is you feel like you’re in a maze. You’re told that you have to make another appointment with another doctor and wait another week for tests. It’s hard to get straight answers from anyone.

The whole thing takes weeks. But you have to keep at it. The biggest mistake you can make is to ignore it and hope it goes away. It won’t.


When my daughter Sophie’s results came back clear, we were so relieved. But a couple days later, I found out I had cysts. And then it was another few days before we found out about Tony. He’s only 21, and already they could tell he had ADPKD.

And he’s apparently quite young to have the number and size of the cysts that he does.

He was the most upset about stopping rugby. He loves his team, but the hard contact could be dangerous. It felt like we were telling him he can’t be himself anymore.

But me, I couldn’t stop thinking about the big picture. Tony has always wanted to be an entrepreneur, but now he’s going to make health insurance a priority. His options have come more limited.

At the time of diagnosis, there are few signs or symptoms of ADPKD. After diagnosis, people with ADPKD often describe it as an “invisible” or “hidden” disease. ADPKD transforms their lives, but there are no signs that anything is wrong.


Even though our world has been turned upside down, we don’t look sick.


I called Tony and told him that we’d sort this out together. Now we have to figure out how.

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