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Living with PKD

“The most challenging thing for me is trying to give my body what it needs all day and balancing that out with my work.”

Kate Williams

Transcript

My name’s Kate I am a mom, and a dancer, a teacher, and I have PKD.

For me with my job as a teacher, I don’t have a lot of flexibility in how often I’m leaving the classroom, and that can be hard just in terms of drinking tons of water and needing to go to the restroom a lot.  That’s the most challenging thing for me is trying to give my body what it needs all day and balancing that out with my work.

It’s hard to tell if being fatigued for me has anything to do with PKD.  My doctor says not, because my function is so close to normal at this point and also being a working mother.  It’s difficult for me to tell if fatigue is just part of my daily life or if that’s coming from PKD. 

For the most part, I am fairly healthy, but I do get back pain.  That’s the biggest thing, and I take a blood pressure medication even though my pressure is fairly stable, but because it’s been shown that lower is better, but for the most part I have very few symptoms.  I can tell in my body that my kidneys have become more enlarged, and they’ve—you can see it on the ultrasounds and CT. 

I’ve been fairly stable since I was diagnosed.  My creatinine has gone up and down, but my function continues to be pretty good, and from what my doctor has said, it could be really good until it’s not.  They haven’t given me any sort of a set time that I should be looking toward that would be looking toward transplant or dialysis.

There’s so much that we still don’t know about PKD and so much that’s changing all the time, and it is, it’s hard not knowing what comes next.  I have a wonderful group of students in the high school that have helped with the PKD walk the past couple years, and I always go and explain to the ninth graders before they come help out what PKD is, and I had a student one time say wow, so you just have that hanging over your head all the time, that must be a really heavy thing to carry around, and I thought yeah, it is, but it creeps in sometimes.

For the most part, the best way for us to deal with it is to continue to talk about it and to advocate.  The more we talk about it, the more we show people that we’re living with this, that it doesn’t have to be something that stops your life in its tracks.  That’s how we deal with it at the moment.

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