The Atypical HUS Foundation

June 2010 Blog Posts (6)

National Kidney Foundation Walk

Nathan and his friend, carry the Cardinal Glennon Banner which includes names of all the children being treated with some form of kidney disease. This was the third walk in St. Louis, it was held in St. Louis University's Park which includes a 1 mile path inside the park. The park was wall to wall people. Representatives of dialysis units from various…


Added by Cheryl Biermann on June 26, 2010 at 11:41am — 3 Comments

lil miss chloe

lil miss had her apt today..her bloodwork looked good.. but we got the results back to her antibody test and this was the test to show the amount of antibodies that she has built up because of transfusions and she has built up 41% dr. h says that puts her at a higher risk of rejecting transplant when that time comes this is not what i wanted to hear also he…


Added by lisa ann peterson on June 18, 2010 at 1:30am — 2 Comments

delayed update, been a busy busy girl.

Well, I've been on summer vacation now for about a month-2months now and I've been mainly sitting at home, catching up on some sleep and reading my favorite book, "Eclipse." I had a dance recital which we well and then I paeticipated in the kidney walk, which went well even though it rained, I managed to walk the entire thing with a very close friend of mine at my side.

I then went to a patient education meeting as a patient representative, which in return I got roped into…


Added by Jessica Olivia Frysz on June 15, 2010 at 11:20pm — 4 Comments

Clinic and vacation

Clinic and Vacation

Hey there everyone - just got back from a LONG clinic today. For the #'s folks here we go - BUN is down to 52, creatinine is down to 9.5, Potassium is down to 4.3, Calcium is steady at 9.8, HCT and HGB are still low at 9.3 and 26, and platlets are steady at 225. The big #'s news is his phosphorus - which had been giving us fits for awhile (last month is was 11.6 and this needs they…


Added by Phyllis Ann Talbot on June 14, 2010 at 2:51pm — 7 Comments

Ash turned 2 today

Hi all,

My little man turned 2 today. It funny how his birthday takes on such a huge meaning for me. I think this is because we were not sure if he would make it to his 1st bday let alone 2nd. I find myself feeling so protective of this day and dont want to share it with anyone else - to me this day is all about Ash. These feelings have come up because my sister in law is due to have her baby and i have been petrified that she would have her baby on the same day as Ash's bday. I know…


Added by Kerri Grey on June 10, 2010 at 7:43am — 6 Comments

Update on Ben!

Hi everybody! I am glad to report that Ben has done well this week. He had a little set back last week when he had so much fluid that some was collecting in his lungs. They ended up putting him on 2 fluid pills and that helped a lot. I got a call from my brother and it looks like Ben was able to go 2 days with no treatment and bloodwork looked great. Does everybody else feel like they are too afraid to get excited because everytime you do something happens. We are just taking it day by day and… Continue

Added by MARCIA AGUALLO BAKER on June 8, 2010 at 9:29pm — 3 Comments

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