Lisa:

It sounds like a paradox, but I asked my doctor anyway: “How do I stay healthy with ADPKD?”

A year ago, Lisa, her brother Chris, and her son Tony were diagnosed with ADPKD, a hereditary disease that causes cysts to develop throughout the kidneys. At the time of diagnosis, there are few signs or symptoms of the disease, but eventually, ADPKD leads to end stage renal disease (ESRD) and kidney failure for most patients.

Chris:

After we got diagnosed, I took my nephew Tony to go play golf. We both love sports and I thought this would be a safe way for us to get out and have some fun.

Hard physical contact can rupture the cysts on the kidneys and cause dangerous complications. People with ADPKD must be careful as they participate in sports and other physical activities.

Lisa:

My son Tony had to stop rugby. He was devastated. When I think about what might have happened if we didn’t find out, and if he took a bad fall… it’s terrifying.

Chris:

The golfing didn’t last. At first, it was laugh. We were just goofing around. But it wasn’t a solution as much as a distraction.

Lisa:

But then at the same time, the doctor said we should exercise. Chris was annoyed by that. Stop exercising, start exercising… which is it?

Chris:

After a while I settled on swimming. Good aerobic exercise, but without any physical contact. I’ve signed up for a 2-mile race in the bay this summer. Should be fun. 

Lisa:

I walk as much as I can. I go for 10,000 steps per day. 

But it’s not like walking will cure me. So it can be hard to stay motivated. Especially because I’m already struggling with the kidney pain, and I know it’s only going to get worse.

Chris:

If you look online, there’s so much contradictory information.

About how fast it progresses. About what to eat. About salt, caffeine, alcohol, and even calcium. It feels like anything I eat might be bad for me, but no one can say for sure.

Lisa:

And then there’s Tony. I was really worried that he was depressed. He kept mentioning how he wouldn’t be able to start his own business anymore – because of the insurance problem.

He’s a smart kid, and he likes to have all the answers right away. But ADPKD doesn’t work like that.

Chris:

I’m thinking that me, Tony, and Lisa should start a local ADPKD organization here in town.

I’ve been emailing with some people I met online, and they say getting involved has been great.

After all, we’re not the only ones with this disease. I read that in the U.S. there are over 120,000 people diagnosed with ADPKD. I want to bring these people together. To draw attention to ADPKD.

Lisa:

I remember when my mom had breast cancer. And she and I walked in this huge march downtown, and there were bands, and food trucks, and thousands of people.

There needs to be more things like that for ADPKD. I think Chris might be just the man for the job. I think I’d prefer to focus on my family.

But I think it’d be great if there were more attention for this disease. If there were more resources online. More places to turn.

Chris:

But sitting around won’t make it happen. We need to do something.