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Leah's Story
My WG story begins in high school, when my shoulder would go "out" for days and I would get severe hip pains after a Cross-country race. I remember the guys on my team carrying me across the finish line and into the bus after many races. I also had several sinus infections and bronchitis every year. Various aches would haunt me the next few years. No one could find anything wrong with me. I got married and had my son with no problems. In Dec. of 2004, I had been sick for a month, with horrible coughing and leg swelling. I would climb into the tub with hot water after work just to relieve the pain. I went to the E.R. when I started coughing blood just after Christmas. They sent me home with antibiotics, with instructions to come back after three days if I didn't feel better. 24 hours later I was throwing up blood. Back to the E.R. I went! The nurse saw me throw up blood and ran to get a mask. They thought I had Tuberculosis. That test came back negative, but they found out I had Pneumonia. I was admitted. They noticed my leg swelling. Apparently my kidneys were failing. Pneumonia does not cause kidney failure. What was causing it then? For the next month I would be put through various tests, trying to diagnose me. My kidneys were not savable, so I was put on dialysis. Slowly I was wasting away. My mother came to visit me and cried because I was skin and bones. I now weighed 87 lb.'s. The Dr. told me they had one last test and that they would have to do a kidney biopsy to confirm. He said "it is highly unlikely you have this rare disease though". They do the biopsy and it came back positive. I had WG. I cried for a long time because they told me I would be lucky to last 3 years. They say it's amazing I had my son with no trouble and that I lived through the pregnancy and birth. It has been a long, hard struggle. I went through chemo pills and lost my hair. It took a year and a half to put it into remission. My hair grew back! I was weaned off the prednisone completely and was just taking renal failure drugs. I go to dialysis three times a week. I was in remission for almost 8 years. I am now experiencing my first "flare". The aches are horrible and I am tired all the time. Instead of the chemo, I am trying Mycophenolate to put it back into remission. So far, no luck. I still hurt and am getting worse. Wish me luck, folks. Hopefully I can find something that works! My goal is to make it at least to my sons' graduation, maybe college and his wedding. This site is perfect and I am so glad I found you guys! I need understanding because nobody around me knows what I am going through and have gone through. So many of your stories are similar to mine and I love having someone to relate to! Feel free to message me for my experiences or any advice. I am willing to give all!
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Jacquie (aka Lifelong Booknut)
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