Thanks for the aHUS conference at U of Iowa on Oct. 24-26. I haven't updated in a while and that is thanks to Soliris. It allows my wife and I to almost not have to think about aHUS. It was nice to take a weekend in Iowa and spend time hearing stories and listening. My wife and I came away with a lot. We understand the disease about as much as we can, but there are little details that we pick up.
1. I regret not getting a therapist for Phoebe when she was sick, and I think it is…Continue
Posted on November 24, 2014 at 11:35pm — 1 Comment
I have been meaning for a while to update this blog.
At some point in February, we finally switched Phoebe to Soliris. We were watching the factor H autoantibodies decrease. We were given hope that her autoantibody level would go to zero. They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300. At that point, we still decided to switch to Soliris for several reasons:
1. Plasma was scaring us, and it was taking 12 hours 2-3 times a…Continue
Posted on April 24, 2013 at 4:05pm — 3 Comments
Our daughter, Phoebe, 7 years old, was diagnosed with aHUS on Thanksgiving weekend 2012. On Thanksgiving, our very healthy daughter woke up vomiting. We assumed she had a stomach virus. By Sunday, we knew she wasn't o.k. She was pale and had slightly yellow eyes. She was extremely lethargic and was still vomiting.
Her original numbers from day 1 at the hospital were:
hgb = 5.5
platelets = 12
creatinine = 2.39
BUN = 154
Posted on January 10, 2013 at 11:30pm — 11 Comments