In order to explain the complexity of arriving at a diagnosis of Polycystic Kidney disease, I think I should explain that my daughter started with completely unrelated symptoms, or what at least appears unrelated. As I learn more about PKD, I am not so sure anymore. Anyway…..
In April of 2006, she came to me complaining about a “very” tiny lump on the back of her skull and fatigue. At first, I did not pay enough attention…..busy schedule, and frankly, I could hardly even feel what she was trying to describe. Within a week, she snapped at me during a conversation saying that I just did not understand how tired she was and that the lump was now two lumps. Upon examination, I found that she was right. The first lump was now bigger, and a second was developing. I did not sleep that entire night thinking how I could not have paid more attention, especially since my husband’s family had a history of childhood cancers that led to the death of two children under the age of 13. We walked into her pediatrician’s office first thing the following morning without an appointment.
It was the process of trying to discover what caused the lumps/ridging that continue to develop and grow even a year and ½ later that eventually led to the full body CT Scan that indicated the cysts in each kidney.
After consulting with a pediatric Nephrologist, her primary care physician ordered a renal ultrasound. I could tell by the length of time the tech spent measuring my daughter’s kidneys that she found the cysts mentioned on the previous CT scan. After she was done, the tech asked me if we had a family history of kidney cysts and seemed disturbed when I said no. While the tech did put effort in to diverting my view of the screen during the ultrasound, my daughter had a perfect view of the monitor and told me after they were done that she could see several of the growths herself. (I don’t think the tech expected a 15 year old to pay that much attention.)
Once the Ultrasound results confirmed the presence of “multiple bilateral fluid cysts,” my daughter was then referred to a nephrologist at Children’s Hospital in Oakland, CA
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