Madi F.

Child, FSGS

In the spring of 2015, my mom started to notice that I seemed to be a little puffy but didn’t think much of it. When summer came, I started waking up with my eyes a little puffy. Over the next few months, it started to happen more frequently, and my eyes were getting puffier and started to stay swollen more throughout the day. By the end of September, I was waking up everyday with them puffy and they weren’t going down. One morning I woke up to them really swollen and they didn’t go down.

My mom called the pediatrician’s office to get an appointment with the doctor. When he saw me, he told my mom that I was just having a weird allergic reaction to something, and to just go home and give me Benadryl. My mom refused to take me home until they ordered some lab work that my normal pediatrician had been watching because the levels had been low over the last few months. The on-call pediatrician finally agreed to appease my mom, and said “Let’s take a urine sample just to be safe before I give you those lab orders.”

I gave a urine sample, and about 15­-20 minutes later the doctor came in and said “I need to give you some other lab orders. I have been on the phone with a nephrologist because your daughter has a high amount of protein and blood in her urine.” He explained they needed to run some other lab work, and that he wanted to see me in the next two days because we could be dealing with a kidney issue. They immediately started me on Prednisone. The lab work confirmed there was something wrong with my kidneys, and we met with the nephrologist the next week. They continued to raise my Prednisone, which brought down some of my protein levels, but then the medicine started to cause other health issues with my blood sugar levels. I became what they call steroid resistant, and I received a kidney biopsy the day after my fifth birthday in December. They switched me to a new drug called Tacro and started me on Lisiniprol. My biopsy came back and they told my parents I had a chronic kidney disease by the name of FSGS. I haven’t gone into remission and still spill 3+ protein.

Reach out to others that can offer support to help you make sense of things. It’s okay to be sad, angry, and scared. Your journey with this disease will be different than others, so don’t lessen your experience of what your child is going through if you see they aren’t as bad as other kids’ stories. This will become your new normal, but you aren’t alone in this journey. There is lots of support from other parents helping their children deal with the same disease. Remember to just take it day by day, and sometimes minute by minute. You will have good and bad days, so just be grateful that you have a new day and pray for strength. You and your family will grow in ways you didn’t know possible, and your journey will have support along the way.