Our insurance carrier recently approved the use of Soliris in conjunction with a kidney transplant for Alyssa. She has 2 defects in her I chromosome and a thrombomodulin alteration, any one of whcih…Continue
Started this discussion. Last reply by Deborah Deffenbaugh Jan 12, 2011.
Alyssa recently asked her doctors whether she could move to three weeks between her Soliris infusions because she ended up going three weeks due to an illness she had on the week she was suppose to receive Soliris last month. Dr. Kouides (her hemotologist) spoke to her nephrologist and transplant team and the doctors in Iowa and has decided to go ahead with the three week plan. They plan to keep a close eye on her blood levels during this trial, but I am wondering if anyone else who is…Continue
Posted on November 22, 2011 at 8:40am — 2 Comments
Posted on April 15, 2011 at 7:42am — 5 Comments
Posted on November 29, 2010 at 9:34pm — 3 Comments
Alyssa is not back from recovery yet but her surgeon reports that all went well and she is making urine!!!!Hooray!!!If anyone is interested in the details, please go to Alyssadupdate.blogspot.com. Everything went quite smoothly and I want to thank everyone for their support and prayers. It means so much more than I can express to have this a-HUS Foundation family!
Posted on October 26, 2010 at 3:20pm — 13 Comments