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Processing Our PKD Diagnosis

“We really ran the gamut after that…of crying and being scared and not knowing what was going to happen”

Kate Williams

Transcript

Kate:

My name’s Kate. I have PKD, and my son, Owen, has PKD.

So, finding out that first day, everything was really kind of a blur.  Our doctor explained what PKD was and then said please don't go home and Google this, because there’s a lot of information, and most of it is really scary.

We were in that fearful place of still not knowing how he would be when he was born, if he was going to survive, if his kidneys were going to be functioning well. 

We really ran the gamut after that…of crying and being scared and not knowing what was going to happen, trying to figure out how much information to share with our family and friends and how to share that information and even thinking forward to do we want to have any more children after this, what are the chances that another child could have PKD and then the idea that it might not be fair to try to have another baby, that we could go through the whole process again and lose a baby or that my body might not handle it. I’m really thankful that we ended up changing our minds on that later, because we have two beautiful boys, and we’re really lucky that for a long time we were not sure that we would try again.

And then I thought a lot for myself about lifestyle changes, what was I going to have change, were there things I was going to have to give up from a vanity standpoint. I was pregnant, and the idea that I might look pregnant when I wasn’t, from enlarged kidneys, that was scary and uncomfortable to think about.  So, it was a lot.  It was a lot to process.

If I were able to go back to that moment of diagnosis, I don't know if there’s any advice that I could give myself that would change anything, because I think part of that learning and almost grieving process was necessary to get to a hopeful place.  I would certainly give me a really big hug and hand me some tissues, but I think all the steps that we’ve been through were steps that we had to take before being able to see a light.

Sean:

I think if I had the chance to go back and talk to myself seven years and change ago when Owen was diagnosed and when Kate was diagnosed, I think the first thing I would want in my head is somebody to say, “slow down, put it all in perspective and really take the time to wrap your head around the entirety of it,” because I think PKD is a huge challenge, and when you’re first presented with information, there are so many bad places you can go on the internet to learn things that don't actually happen, and it can scare you very quickly, and I think I spent the first two weeks scared, because I didn’t understand and I didn’t know, but I had all these scenarios running through my mind that were much worse than what could actually happen.  I think that’s probably the advice I would give, just slow down, take its time and learn some more.

Comments

Comments (2)
Stacy
December 9th, 2021 5:59am

Thank you so much for this ! I was trying to find someone that can make me feel better about the situation and I’m grateful for your story and it makes me feel better .

OPEN_Administrator
December 9th, 2021 5:59am

We're happy to be able to share this, Stacy.

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