At 22 years old, I was diagnosed with Nephrotic Syndrome and confirmed Membranous Nephropathy from a renal biopsy after I was experiencing swelling, headaches, and high blood pressure. Before my diagnosis, I was pregnant with my son and experienced high blood pressure, headaches, and proteinuria throughout the pregnancy. I ended up delivering six weeks early with steroid injections and he was healthy.
A year later, my symptoms got worse and it was time for my first treatment. I did the high dose steroids with immunosuppressants. That was a very dark time in my life, as the side effects from the drugs were very hard to cope with. I had gained so much weight and went into a depression. The treatment did work, however, and I was able to go into complete remission after six months. For a few years, my numbers stayed pretty steady. My doctors gave me the okay to get pregnant again, as I really wanted to have at least one more child. I did okay, and actually felt healthier during that pregnancy.
However, I have relapsed several times since then, with my numbers going up and down. My protein gets really high in my urine and low in my blood; my blood pressure is hard to control with three different medicines; I take a water pill; I take medicine to keep my cholesterol under control; and I have my labs drawn and urine tested every few months. Currently my urine protein is nephrotic range.
It’s like a roller coaster. We decide to wait it out with no treatment, and it goes down on its own, but then back up again the next time. Currently my kidney function is good, so that’s the most important thing. I am very thankful to have no decline in kidney function at this time. I know that this is a slowly progressive disease and what damage can be done. I try to not think about that possibility and what could be coming in the future. With this being a rare condition, it’s hard to find anyone who can relate to what I’m going through. That is why I’m thankful for the NephCure organization and their dedication to research and finding a cure, as well as the other patients they have connected me with.