Spreading Awareness

Polycystic kidney disease is one of the leading causes of kidney failure, and about 600,000 people in the United States have it, yet not many people have actually heard of the disease. Unless it impacts your family or a friend, most people will go through life without any knowledge of it. Unlike another cause of kidney failure, diabetes, almost everyone has heard of that disease. With this blog, I am trying to do my part to spread awareness of this life-threatening disease to the two or three people who might actually read this.

Polycystic kidney disease is essentially what is says; fluid-filled cysts that grow in the kidneys. These cysts become large and eventually damage the kidney, resulting in kidney failure.

A normal kidney is about the size of a fist. Some kidneys with PKD grow to be as large as a football and can weigh about 30 pounds each. I'm sure my scale would look much better if these things weren't weighing me down. 

I think when people learn I have an incurable disease or that I’m in stage 4 kidney failure, they are surprised. I don’t look sickly per se (insert your own jokes here). For most of the time, I have been able to say “I wouldn’t know I had it if I didn’t know I had it.” I’ve been fairly symptom-free. My blood pressure has been maintained as I’ve been on blood pressure medications for years. I haven’t had any pain, kidney infections, or any of the other symptoms. At this point, the biggest problem I have is fatigue and low energy. This has happened gradually over the years and with having a full-time job, two kids, and a busy schedule, I just assumed that's why I was tired. However, my running is where I’ve noticed the biggest change. Last year I found running to be more difficult and I couldn’t figure out why. It was like I had lost my groove. I had no stamina, it never really felt comfortable, and it was harder to maintain a comfortable breathing rate. I thought maybe because I had run less during the winter months that it would just take some time to get back in the swing of it. That was not the case though. It finally hit me that my slower speed, my inability to run the same distances, and my overall low endurance was from my PKD. Despite this, I am still running almost everyday on my treadmill or outside. I have definitely cut back on races though and that kind of stinks.

When I think about my next steps, it seems odd to me because 1) it’s hard to realize the severity of where I really am healthwise, and 2) it’s hard to believe that my health is at this stage and I still feel pretty good. I wonder how I can be sick, but not seem sick. And I’m not complaining...I’m glad to be able to go about my daily life without too much trouble and sickness. Hopefully this lasts now and after the transplant!