Searching for Answers
January 20, 2010
Well, I have to admit that I did it again today. From time to time, I decide to begin researching IgA nephropathy on the internet to see what else I can learn. I will admit I have a love-hate relationship with the internet. My job requires me to spend a lot of time researching on the internet. While I appreciate the amount of knowledge that is so readily available, I am alarmed at how many hours I can spend staring at a screen looking for something more. When the doctor first told us that Mackenzie had a form of chronic kidney disease, most likely IgA nephropathy, he explained that it would take additional testing before we could be sure. As if reading my mind, he immediately told me to go to the National Kidney Foundation website if I wanted more information. He then suggested that I not search the thousands of other websites that were at my disposal. It was obvious he didn’t know me very well… or maybe he did. He told me that there is a lot of great information out there and also a lot of information that would not be helpful to me right now. I read through the NKF site first. And then without a moment’s hesitation began searching everything else. Like most parents, I was looking for answers that I knew couldn’t be answered. What would happen to her? Would she develop kidney failure? What caused this? What could we do? Immediately I was immersed in genetic variants, transplant statistics, prognostic indicators and thousands of other things that made no sense to me. Her doctor was right. I was now overwhelmed and still had no answers. I need to be an educated parent – that is just my nature, but I have to be comfortable with the unknown as well. I still search for information and read other’s stories, but at the end of the day I have to balance it with everything else. Today I read that similar to adults, 25% of children with IgA will develop renal failure in 20 years. What do I do with that tidbit? Should I worry? Should it give me hope? I am not quite sure. I think I’ll just store that away and think about it later.
