First i want to sat Thanks to Cheryl for keeping updating on Anna and thanks everyone to continue praying for her.
Anna is full of mistery, no one knows what is going on with her right now. All her labs are good except blood in her urine, her Platelets are normal it looks like everytime we do labs they r higher and higher hmmm... She has some back pains and not eating very much.
Yesterday we were first ones to see our doctor and last ones left her office…Continue
Svetalan told me yesterday that Anna appeared to be getting better and they were just waiting for some labs, things seemed to be semi normal with them being watchful. Last night, however, Anna had such severe back and stomack pains so they took her to their local hospital and waited four hours. The only thing they did was to suggest vicaden. Anna will be seing her nephrologist in the morning.
For those of you who may not know Anna often had back pain associated with her…Continue
Added by Cheryl Biermann on January 29, 2012 at 10:00am — No Comments
Well - first of all - so sorry for taking SOOO long between updates! Things were rocking along and I honestly forgot about it and then was waiting to do one on a couple of good things coming up but apparently Hyde had other plans :-\.
First things first - we are here at Egleston, were admitted yesterday morning, but hoping this will be a very quick stay ;-). Since I haven't updated in a while - here's what sort of led us here. Hyde has been doing really well,…
Added by Cheryl Biermann on January 27, 2012 at 12:29pm — No Comments
Alone we are rare…together we are strong.
It's not just the slogan for the global campaign marking Rare Disease Awareness Day on February 29, 2012. It's also the rallying cry for "SOARING VOICES" a grassroots effort by patients, friends, and families who…Continue
Sorry everybody for not posting for a while. I was very busy with work and getting ready for a trip, which I took this past weekend to California. The trip I took was to go to an event sponsored by the Renal Support Network (RSN) called the Renal Teen Prom. Yes, I know I'm not a teen anymore, but this event is for patients 14-24 years old. This event is like no prom you or I have ever attended at our high schools. This prom is a big party!!! Hundreds and I mean HUNDREDS of kidney…Continue
SUPPORT THE FOUNDATION FOR CHILDREN WITH ATYPICAL HUS FOR AS LITTL AS $5
Hi again...it's that time of year for The Foundation for Children with Atypical HUS, St. Louis. This might be a long shot, but I know the Cardinals have far reaching fans. This year you may want to participate in our raffle, it is chance to win
a David Freeze autographed and framed picture of his walk off home run this year OR third prize, a Whitey Herzog ouautographed…Continue
Added by Cheryl Biermann on January 18, 2012 at 9:40am — No Comments
Added by Cheryl Biermann on January 15, 2012 at 12:10pm — No Comments
Just popping in to say hello. It's been whirlwind down here in New Orleans this last year. Sorry we missed Iowa - Aida and I would have loved to catch up again.
It was real nice visiting in CT - even if it was such a short time together.
Christian is doing real well - he has started Soliris as of Nov 2011 and is being worked up for transplant by Texas Children's.
Hope everyone is doing well and it's great to see so many stories of progress with…Continue