Kennedy has always been an active child and one would never know that there is anything wrong with her. At the age of 2, we started to potty train Kennedy and she kept having UTIs — she would have at least one a month for a couple of months. Her pediatrician, Dr. Weinstein, had discovered that she had high protein in her urine as well. He was alarmed at the levels and referred us to the a nephrologist. Dr. Weinstein knew of her family history with kidney issues and was very proactive to make sure we found out what was going on. Once we received our referral to the nephrologist, off to Loma Linda we went.
We met with Dr. Sahney and slowly began to eliminate possible issues that it could be. While working with Dr. Sahney, we found out that Kennedy was having renal reflux and that was what was causing her chronic UTIs. Unfortunately, it was not the cause of the high protein. In May 2014, Kennedy had a biopsy on the opposite side of the renal reflux to see if there was a disease in her kidneys. Weeks went by, and the specimen kept on going through a chain to determine exactly what was wrong. I think I actually got a letter from the University of Oregon asking for permission to keep her specimen before I even had the results.
When we went back to Dr. Sahney’s office to get the results, I was nervous. I had done so much research in regards to different kidney diseases and treatments that my mind was overcome with possibilities. It’s sad when you are in the doctor’s office hoping for one disease because you are afraid of another. Dr. Sahney informed us that Kennedy had FSGS and C1Q. What has made Kennedy’s diagnosis hardest is the fact that she has had no signs of the disease other than high protein. She never experienced swelling or an irregularly high blood pressure. Little Miss K has tried multiple different treatments, but unfortunately the side effects have outweighed the benefits.