Out of no where, in February 2014, I had jaundice, a lack of appetite, and swelling in my abdomen, feet, and ankles. As a result, I was admitted to the hospital right away. I had to get a blood transfusion the night I was admitted. I spent three days at the hospital and was diagnosed there with cirrhosis of the liver. I was referred to a gastroenterologist and hematologist. After getting a liver biopsy, completing the hemochromatosis (I'm a carrier) and Wilson's Disease genetic mutation blood tests, and 24 hour urine test I was diagnosed in April 2014 with WD.
Although I have cirrhosis, I was not in need of a liver transplant like other WD patients. My liver function lab work is now in normal range. A brain MRI reflected no copper deposits in my brain.
As of last year, I have a little amount of copper in one of my eyes. I am blessed and grateful to be doing much better nowadays.
I have two adult children that have Wilson's disease. At the time they were diagnosed they were 14 and 17. That was 14 years ago. We had changed from a pediatrician to an internist. They both had lab work after their initial visits for sports physicals. They both had elevated liver enzymes. The doctor called them back for more lab tests and within 10 days called to tell me he was quite certain they had Wilson's disease. Things became challenging after that because of their ages and misinformation. We ended up seeing Dr. Askari at University Of Michigan, and getting the correct information. They are very fortunate to be healthy today.
We have been to a couple Wilson's conferences and understand that not all people with Wilson's are so fortunate. This is the main reason I volunteered to organize a walk in the Chicago area.
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