For 25 years, I unknowingly lived with IgA Nephropathy until I found a physician who noticed that my blood work indicated that I had some form of kidney disease. When I received the initial diagnosis, I was scared. The doctors did not offer much information about IgAN and there was no known treatment. To know that you have a disease that has no cure or treatment is very scary and it was a very emotional day.
I was able to manage my IgAN through diet and steroids until 2017 when my kidney function declined to 19 percent. At that time, I began my transplant journey. It was a very anxious time in my life not knowing if I would be able to find a donor or if I would have to go on dialysis. Almost two years later, I received a living donor kidney transplant through a paired exchange.
Living with IgA Nephropathy is a game-changer, and it will impact everything from what you eat to how you feel mentally every day.
Since my diagnosis, a lot has changed in the IgA Nephropathy community, and we need to work to continue to move the needle to find a cure and a treatment for this disease. The IgAN Foundation has done a great job working collaboratively with the pharmaceutical industry.
I am much more hopeful today than I was when I received my diagnosis. I have found many new friends in the kidney community, and hopefully sharing my story will help inspire others who have IgAN or who might need a transplant.