I am dealing with an insurance company that has denied access to a Critical Care claim because Will, our son with aHUS, is no longer needing dialysis. He has responded well to Soliris treatment. We…Continue
Started this discussion. Last reply by Kerry Waters Jan 11, 2015.
Since we are "new" to aHUS, we didn't have a clue where to begin when our son was diagnosed. From the beginning, my best friend said "Let's just pray that it's HUS not aHUS." When the results came…Continue
Started this discussion. Last reply by Cheryl Biermann Jul 23, 2014.
As my son returns to college this fall, I have lots of questions. We have attended a meeting with at the Student Disability Center to sign a waiver for him to receive accommodations. He said he needs…Continue
Started this discussion. Last reply by Kerry Waters Jun 12, 2015.
Hi! I need some advice. My son Will is getting infusions every two weeks in Atlanta. Initially, we thought he would be able to get infusions via home health care, but so far we are having trouble getting companies to agree to the terms. I have been talking with a case manager at Soliris and a representative from Egleston Children's Hospital. We keep hitting a dead end. Do all of you have to travel long distances to be able to receive your infusions. We have a four hour drive to our…Continue
Posted on May 13, 2014 at 10:47pm — 4 Comments
My 19 year old college freshman was sick with what we thought was a stomach virus when he went to his local hospital for dehydration. After blood tests revealed acute kidney failure as well as cardiac distress, he was moved to ICU. We had him transferred to a larger hospital. The doctors suspected HUS but were unsure if it was aHUS. We immediately began plasma exchange and dialysis. After two weeks of waiting our genetic test results showed aHUS. Our doctor recommended a transfer to…Continue
Posted on April 6, 2014 at 10:30pm — 4 Comments