Hello! This is the first time that I have ever posted my story on a forum so this is pretty new for me
I am currently 28 years old and I have had WG since I was 13 years old. I originally didn't know that I had it until I relapsed at 21 years old.
When I was 13 I got really sick suddenly. I was very weak and nauseous one day, my mom took me to my primary doctor and he ordered blood work for me. Once the results came back my doctor called my mom and told her to take me to the hospital right away because I was going into kidney failure. My mom took me out of school and rushed me to the ER. Once at the ER I was given a blood transfusion and was rushed to surgery for a bilateral biopsy of both kidneys. I stayed in the hospital for a week (that was rough). I was told originally that I had rapidly progressive kidney nephrititis (since I had no other symptoms at the time).
I put on prednisone, cellcept and bunch of other meds. I had cytoxin treatments for 6 months, those were definitely some of the worst days by far.
As time went on, I started doing really well, well enough that my nephrologist started to lower my cellcept dosage. Pretty soon, I was off it completely.
Fast forward to December 25, 2011 ( yup Christmas day!) I hadn't been feeling all that great for the month before Christmas ( I just assumed I was getting sick). I was really tired, had a stuffy nose and a cough.
I woke up Christmas day with this severe pain on my left side, it was probably that worst pain I have ever felt. I am not one to rush to the ER for every little thing, but Christmas day the pain so severe that I had my sister drive me to the ER. Once I was inside they gave me a chest x-ray and found multiple nodules all over my lungs. They also found that my kidneys were failing again.
So once again, I was admitted to the hospital, this time with the diagnosis of WG. I had never heard of it before but when my attending nephrologist told me about it, they symptoms made sense.
I spent Christmas day and 4 days after in the hospital..I was happy to be out by New Years!
Once I was out some of the hardest days were ahead me. I started to get nosebleeds almost every day. I knew it was part of the disease but some days the nosebleed were really horrible. They prevented me from doing things, I had to stop to blow my nose and when I did that it would just bleed again (I knew that would happen, but I just had to do it because it was so uncomfortable otherwise).
After a year of nosebleeds they finally stopped!!!!! And I haven't had a bad one since.
Its an everyday struggle for sure, every time my sinuses act I'm afraid its the WG coming back again. I've been doing well the past 7 years, here's to hoping it stays that way!!