My daughter was about nine months old when I got sick. I still had the frazzled new mom thing going on, and it took me two days to realize I had swelled up to the point no clothes fit me. Doctors discovered I was spilling 22 grams of protein. I went through many treatments—many making me sicker than the FSGS itself.
I finally found a medication combo that worked! But 12-13 years later, I’ve finally reached the point of kidney failure and needing dialysis. So far I’ve chosen peritoneal dialysis. I started in December 2014, though I stopped a couple months later.
My advice to other patients: live your life. Advocate for yourself.