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My PKD Journey: From First Symptoms to Transplant

“Even with the things that my nephrologist and I were trying, steadily my kidneys were still declining. It was frustrating”

John Ventresca


Several years after I was diagnosed was when I started to feel the effects of PKD. The first issue I noticed was fatigue, and also over time, I noticed more and more back pain.

In the afternoon I would notice getting a little drowsy and I would attribute feeling a little run down to just being busy with family, chasing around my kids, working full time, everything going on, but then I realized it just was the effects of the PKD were increasing over time.

I started having a little more back pain and just kind of being sore. I worked most of the time at a desk job, and I thought maybe this is just sort of typical, but I realized this is probably connected to the PKD also.  My kidneys were growing, really getting bigger.  The cysts were growing, and this probably was a real connection to the back pain.

So, with my nephrologist I would talk about kind of the fatigue and some of these symptoms.  I learned that fatigue can be part of your change in your white blood count and different things can change, and that can kind of lead to fatigue and some of these things.

Some things that my nephrologist recommended were taking out caffeine. My blood pressure had been going up over time, and so this might be a way to help bring my blood pressure back down. Cutting out coffee and soda and things like that was a little bit of a downer, but my blood pressure got better.  My nephrologist also recommended just really drinking a lot of water because that would really help kidney function and it was kind of tough to get used to. Another thing my nephrologist talked about was just watching sodium and just eating healthy in general.

Even with the things that my nephrologist and I were trying, steadily my kidneys were still declining.  It was frustrating to see that my function was still slowly going down.

So, my nephrologist and I talked about what the options were. I was in my 40s and I’m facing possible dialysis or transplant.  So, it was really—this was really frustrating and upsetting to think about this.

I told my nephrologist I really wanted to avoid dialysis if I could. My nephrologist said my goal is to help you get a transplant before you ever need dialysis.  It was great to hear that. I mean not that I was excited about needing a kidney transplant, but if I had to think about that as a prospect in the near future, then let’s try to get to that point and hopefully avoid dialysis if possible.

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