New to PKD

I decided to start this blog for several reasons. I found several websites that discuss PKD from a technical/medical perspective, but it was through the pkdcure.org website that I found other families surviving and dealing with the daily emotions that come with finding out that you have an incurable disease such as PKD. Realizing that the feelings I felt were so similar to those of the other members that shared their stories via their blogs also helped me realize that those feelings were normal. I am hoping that this blog will not only provide me an outlet to put those feelings and experiencesinto words, but that it will also provide others with the comfort of realizing that there are others out their going through the same thing.

I first learned about PKD in August of 2006. My 14-year-old daughter had a full body CT scan that was originally looking for cancer. We later received a call from her pediatrician saying good news, no cancer; however, we did discover multiple cysts in both kidneys. Her doctor went on to say she wasn’t completely sure what that meant, and had left a message for a nephrologist at Children’s Hospital to discuss the situation and would get back to me as soon as she had some answers. That was our first experience at running into a doctor that had never heard of polycystic kidney disease. That was over a year ago, and a lot has happened since then. I will follow with the details in another posting.