The Atypical HUS Foundation

April 2014 Blog Posts (7)

36-month transplant anniversary - Medicare benefits end

Hi -
Jack is nearing his 36-month transplant anniversary (YAY!), and I believe his Medicare benefits will end.
Can anybody advise on how they managed this. I'm wondering if we need to pro-actively stop his plan, or if it's automatic. A call into Medicare wasn't very fruitful...
Thanks!

Added by Dana M Simone on April 26, 2014 at 10:11am — 2 Comments

ABdominal pain

Hi, it has been awhile since I've been on this site, does anyone have issues with abdominal pain with HUS? Also is there anyone else that may go to Children's hospital in Aurora, CO?

Added by Terry Huber on April 22, 2014 at 9:19pm — 5 Comments

Siblings

Hello all. My husband and I have always wanted three children. After our daughter's diagnosis, we feel that a third is out of the question. We have yet to speak with a genetic counsler. I was curious if anyone has any experience with this or know what our chances of having another child with aHUS are??? Any input would be greatly appreciated.

Heather

Added by Heather on April 16, 2014 at 10:02am — 3 Comments

port

Cole had his 3rd infusion today and as usually the iv was a nightmare...anytime they do blood work or do an iv they have wrap him up in a sheet and he fights the whole time...and he ends up getting poked 2 or three times before they get a vein. The doctor talked to us about putting in a port for his next infusion. It sounds good to me but freaks Cole out a little..does anybody have any positive feedback? Will Cole be able to play normally or will it bother him

Added by Alison Montes on April 10, 2014 at 8:08pm — 8 Comments

aHUS Meetings for 2014

The Foundation for Children with atypical HUS collaborates with other rare disease organizations to help provide information and support to aHUS caregivers, family members, and patients of all ages.

Regional aHUS meetings are a great way to connect and learn!  It’s the perfect way to gain insight into this rare disease, and provides a great background/ follow…

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Added by Linda Burke on April 8, 2014 at 3:00pm — No Comments

19 year old son recently diagnosed with AHUS

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…

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Added by Kerry Waters on April 6, 2014 at 10:30pm — 4 Comments

Getting a Second Opinion?

My 6 yr old grandson was diagnosed with aHUS about 3 weeks ago.  Should we be seeking a second opinion?

Added by Linda Montes on April 2, 2014 at 1:30pm — 2 Comments

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