Diane W.

Adult, FSGS

I was away on a girls’ weekend when my ankles swelled and I noticed my clothes were tight. I called my doctor right away when I got home and found myself sitting in a nephrologist’s office four days later. It’s been a year and a half since then, and I recently reached a partial remission.

The road to here has been mentally and physically challenging to say the least, with massive amounts of steroids, cyclosporan, and tacrolimus, along with tons of other pills to counteract the medically-related side effects. Then there are the horrendous side effects that can’t be treated. Surviving one hour to the next was my goal. A partial remission has allowed me to cut back on the prednisone, which feels so much better! However, I recently leaned that I have developed avascular necrosis, which is yet another side effect. I will be undergoing a total hip replacement next week.

I have no idea what my future will bring, but I embrace my life, my husband Mark, and my family everyday. Stay active even though it is hard and uncomfortable. Let your friends and family help you, and stay away from mirrors!