“We didn’t know what it would be in my case, so, to get complete support of whatever may happen, whatever may come… meant everything to me.”
When I found out that I had PKD, it was a real swirl of emotions. I was in disbelief. I was very healthy on the outside, active. It was really confusing to get this diagnosis of something bad going on with my kidneys. I never really gave much thought to my kidneys and what they even did.
I was upset that I had inherited this and I had to deal with this disease that didn’t have any cure or real known treatment outside of either dialysis or a transplant.
So, that was frustrating. I’m the kind of person who likes to have concrete answers and specific steps and plans in front of me. I like to have a set objective and working towards a set objective and if you do this, this will happen, and getting a vague diagnosis that I was getting and not a lot of specifics from my providers was frustrating to not hear any of that. It was great that I had such support from my wife and my family once I got this diagnosis.
There was no question of whatever I needed my wife would be there, my family would be there for me, whatever I needed or whatever happened. We were all sort of in the dark with what was going to happen next with PKD, but it was just a kind of unconditional, we got your back, and we’re there for you whatever you need.
We learned that PKD affects people differently. Some people can go many, many years without really any effects from PKD. Other people can feel the effects and kidney decline pretty quickly or fairly quickly. So, we didn’t know what it would be in my case, so, to get complete support of whatever may happen, whatever may come, from my wife and my family to just have that support and for them to be there with me meant everything to me.
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