The Atypical HUS Foundation

Kerry Waters
  • Female
  • Glennville, GA
  • United States
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Kerry Waters's Friends

  • Rebecca D. Hart
  • Marilyn Cline
  • Heather Hunter
  • Melissa Hearn
  • Cheryl Biermann

Kerry Waters's Discussions

Need some assistance from others
2 Replies

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.

aHUS Regional Meetings
1 Reply

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.

aHUS college student - accommodations
5 Replies

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.

 

Kerry Waters's Page

Profile Information

Birthday
September 5
Do you have a friend or family member diagnosed with aHUS?
Yes
I am an adult aHUS patient.
No
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
I have attended a meeting or conference to learn about aHUS.
NO - but I'd like to attend a future meeting.
My membership request involves business interests as I seek additional aHUS information for business applications.
Guardian
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results

Kerry Waters's Blog

Issues with Soliris Infusion through Home Health Care

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…

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Posted on May 13, 2014 at 10:47pm — 4 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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Posted on April 6, 2014 at 10:30pm — 4 Comments

Comment Wall (5 comments)

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At 9:29am on April 14, 2017, Linda Burke said…

Hi Kerry,

Thanks for your warm welcome to Donnan - it's much appreciated.  Hope things are going well for you and your family.

At 8:19pm on March 31, 2014, Cheryl Biermann said…

Kerry, welcome.  As you can see, you are in good hands at CHOA...and here as well.  We look forward to getti g to know you.

At 9:35am on March 31, 2014, Phyllis Ann Talbot said…

Kerry - same here - sent you a note on Facebook as well - just yell if you want to talk - I'll actually be at Egleston with Hyde Thursday morning for clinic if that's where ya'll are - happy to stop by and say hey!

At 8:14am on March 31, 2014, Melissa Hearn said…
Hi Kerry,
Sorry to hear about your son. My son also has AHUS and we are currently in Atlanta. We are moving at the end of the school year.

I also work for CHOA in the non clinical setting. What hospital are you at? Please message me of there's anything you need. I would be happy to visit or call if you want to talk, have questions, etc.

Thanks,
Melissa Hearn
At 11:01am on March 30, 2014, Linda Burke said…

Welcome to the website, I'm so sorry to hear that your son had his aHUS arise while at college but am glad to learn that Soliris therapy will begin soon.  CHOA is a great place, and our Director Phyllis Talbot is in your area (Children's Hospital of Atlanta - Egleston ).

Please check out the informational videos about the disease (U of Iowa doctors, in particular), the aHUS Bootcamp, and the Soliris forum at http://atypicalhus.ning.com/forum/topics/soliris-1  . 

You'll find the tab 'aHUS Materials & Info' lists multiple resources, some which are valuable to share with friends and family who want to understand this rare disease.  We welcome your comments, questions and participation.

 
 
 

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