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NephCure Champion Spotlight: Paul Billedo – NephCure

“Hello, my name is Paul Billedo. I am a 31-year-old Filipino American from San Francisco, CA. I was diagnosed with IgAN in 2018, and it changed my life in many ways. I tackle opportunities differently, I learned to keep moving forward no matter what the end of the road looks like, and I am learning to love every little thing life gives me.

I feel very grateful that I respond to treatment and that I am part of a great community where I can give and get support. I went through many stages of feelings because of my disease. Moving from feeling hopeless to grateful and happy!

I remember the period when I got diagnosed because it came out of nowhere and it changed my life. With 20 pounds of water weight from the waist down and doing 4 weeks of blood tests, I finally got diagnosed with IgA nephropathy.

I met my wonderful nephrologist that explained everything to me from my feelings, her feelings, our relationship, and treatment. I remember it was very real when I got a biopsy and stayed in the hospital for 24 hours to make sure I don’t have an internal bleeding. That is when I came in touch with reality because it feels like a dream.

Throughout the past five years of being diagnosed, I went through a couple of phases with my medication. In the very beginning, I was on Lasix to get the 20 pounds of fluid out of my system, Prednisone, Lipitor, and Prilosec. Before starting on this medication, my doctor explained to me what the medications are and made sure that I am okay with taking them because she stated that there are not many medications that are for my disease. After her explanations, I agreed to the Prednisone and I handled the medication very well. As I was on medication for a year, my doctor wanted to wean me off Prednisone because of the long time effect it has on the body. We got my Prednisone to a very low dosage and was able to be in remission for about 9 months, before I would relapse.

We brought my dosage back up to normal and weaned down again, but at a way slower rate and more blood work. After about a year, I relapsed again and decided to not go as low on the third attempt. The third phase, we got the dosage as low as possible without any relapse.

About my fourth year with my disease, my doctor asked me if I wanted to try a different medication to get me off of Prednisone completely. That’s when she introduced Tacrolimus. I am taking 2mg of Tacrolimus and going strong.

Now, I am so happy to finish my teaching credential to become an elementary school teacher. It is hard to chase my goals and dreams because my disease held me back a few times because of sudden relapses, feeling extra tired from stress, and getting sick more often. I learned to keep pushing through because it is worth it. I am worth it no matter what I have. I do still live my life forgetting that I have a major disease and that does cause some complications. I lose grip of my eating habits, drinking habits, mental health, and physical health and feel bad on taking advantage of my health. It is hard to keep things consistent when I feel normal when in reality, I have a chronic disease. It will be a forever battle, but I trained my mind to be ready for anything.”

— Paul Billedo

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