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Managing the Different Stages of PKD in Our Family

“Everybody with PKD is going to be a little bit different, have different needs… Kate and Owen have very different courses of disease”

Sean Williams



Everybody with PKD is going to be a little bit different, have different needs.  You can't see one PKD patient and assume that you know everything for every PKD patient in your family or outside of your family. 

Kate and Owen have very different courses of disease, which I’ve found sort of fascinating from a science perspective.  I’ve been very fortunate.  Kate’s mid-30s and hasn’t really been burdened by her PKD too much.  I think she gets full faster than most folks do.  Little tenderness, little sore spots every now and then, and it’s hard to discern which is PKD versus which is, “Hey, if I do squats and pick up the kids a bunch of times, my back hurts.”

I think the biggest challenge for Kate is probably twofold.  One is that now that she’s started to have some of the symptoms and pain going on with it, I think it’s become a lot more real for her, and I think mentally for her having Owen.  I think having the child.  It’s easy at times to throw all of your energy at your child, because you’re concerned about them, but I think the flipside of that is we now know how PKD came to Owen, and that’s scary for her I think.

Owen’s is a much more aggressive nature, I think probably because he was born with it.  We know his kidneys are much larger.  I think the example I always give when I speak with friends is his kidneys are about the size of ours as grown people when they should be the size of his fist.  They’re more the size of our fist.

So, they’re pretty accelerated there, although in the grand scheme of those with polycystic kidney disease, he’s still fairly early stage.  So, we’re fortunate there.


Owen and I each have a nephrologist.  His nephrologist is at the hospital.  So, she works really closely with the endocrinologist that we see as we’re tracking his growth.  We also see a nutritionist for him, because we’re working on having him continue to grow and pick up weight.  His last checkup, he was at about one-third percentile, and they say he’s not falling off the curve.

So, we’re doing okay for now.  He’s kind of keeping his own growth curve, but we’re still watching that.  Right now, I continue to see my OB/GYN once a year, you know and then I see my nephrologist usually twice a year.

We do have a blood pressure cuff so that we can take his blood pressure at home, but it’s a little bit tricky just because finding one that works well for a child is really hard.  That’s difficult even at the doctor’s office.  It’s just really inconsistent, but for taking care of his health, we really try to make sure that we are encouraging him to eat things to pick up weight, keeping a low sodium diet as much as we can, making sure he’s drinking lots of water. And his teachers at school know that he needs bathroom breaks often.


We’re a very fortunate family with polycystic kidney disease.  It sounds silly to say that, but we are.  Owen rock climbs.  He plays at school with his buddies.  He plays soccer.  He loves tee-ball.  He likes swimming and diving and doing all the things that a 7-year-old boy does, wrestling with his brother notwithstanding, and Kate, we’ve been very fortunate that her job hasn’t changed.

She’s still able to teach.  She loves dancing and takes the time to do that.  We’ve been in all reality fortunate with the degree of impact that PKD has had on us in our lives at this point in time.

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