The Atypical HUS Foundation

Kristen Bruner
  • Female
  • Great Falls, MT
  • United States
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Kristen Bruner's Discussions

Complement Factor I
6 Replies

Hi everyone!  I got my genetic testing back and I have an abnormal CFI gene.  The doctors recommend a liver/kidney combo transplant.  I am going to the University of Iowa on May 6th to begin the…Continue

Started this discussion. Last reply by Kristen Bruner Jun 3, 2014.

 

Kristen Bruner's Page

Profile Information

Birthday
October 22
I am an adult aHUS patient.
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
no
My child ( or myself as a patient) is best described as:
Factor I (CFI)

Kristen Bruner's Blog

Mayo

Went to the Mayo Clinic in Rochester in October for a second opinion.  They agreed that I have aHUS, did a lot of testing to be sure.  They told me Great Falls was doing everything they should be in treating me.  That was comforting to know!  We did genetic testing, still waiting for that to come back.  I guess I needed to do it in the transplant process so just went ahead and did it.  I know there is a good chance that the genetic testing will come back negative.  The doctors at Mayo said…

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Posted on November 5, 2013 at 6:57pm — 4 Comments

Stem Cell

Hi everyone, I hope that everyone is doing well.  It's finally cooling down out here in Montana and I'm thankful for that!  I was just wondering if anyone has heard anything about stem cell transplant and aHUS?  My mom had a doctor from Canada talk to her about it.  I've been having a lot of problems with nausea and vomiting lately.  Had to go into the clinic last week because I was so dehydrated, my potassium was very low, and my creatinine took a jump to 7.7.  The week before it was 4.8.…

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Posted on September 23, 2013 at 3:20pm — 4 Comments

Looking for doctors

I am just curious where any adults with aHUS have received their medical treatment.  I think I would like to leave Montana to get another opinion, but I don't know where to go.  Thanks for any info you can give me!

Posted on August 5, 2013 at 6:02pm — 5 Comments

almost 5 months

Hi everyone!  Hope everyone is doing alright.  I'm almost at the 5 month mark since I was diagnosed with aHUS.  I am now doing peritoneal dialysis, which is going much better than hemo did.  At least I can do it at home.  I opted for the PD cath to be put up high, between my breasts, so that I can take baths and even sit in a hot tub if I'd like as long as I don't get my exit site wet.  I have a port that I get my Soliris in every other week. I have been having some chest pain lately, but…

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Posted on July 25, 2013 at 7:23pm — 4 Comments

Comment Wall (3 comments)

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At 9:53pm on May 4, 2014, Linda Burke said…

Thinking of you as you head to the U of Iowa on May 6th for a transplant workup.  You might want to check in with another adult aHUS patient, as Jill Ziegler was transplanted at the U of Iowa and she may be able to provide you with insights.

Are you going to see Dr. Christie Thomas?

At 10:30am on May 16, 2013, Cheryl Biermann said…

Once Linda has welcomed you there is not much left to say, except, a heartfelt welcome to our aHUS family!  May things only improve for you from this moment on.

At 1:17pm on May 15, 2013, Linda Burke said…

I'm sorry to hear that you’ve recently been diagnosed with aHUS, but I hope that you’ll be able to learn more from other adult aHUS experiences and various resources posted  here. We have informational materials about atypical HUS online at http://atypicalhus.ning.com/page/ahus-brochure-3 with a 1 page flyer helpful for extended family, nursing staff, and friends. This summary of educational materials includes a detailed overview of this rare disease, our 'aHUS Bootcamp' which should prove helpful in understanding the medical terms (also online at http://atypicalhus.ning.com/page/a-parents-perspective-ahus).  We do have a specific tab for adult aHUS patients http://atypicalhus.ning.com/page/adult-ahus-resources, where you’ll find stories of insight and support from adult aHUS patients and their families.
     Feel free to call Dr. Guter and Dr. Soldyshev’s attention to our Home Page sidebar for a  'Doc to Doc Directory',  where physicians can connect with other doctors experienced in treating aHUS patients (its free, as aHUS docs worldwide volunteer their help to colleagues).  Printing out that directory for as an option for professional medical consults might expand professional connections with aHUS expertise for your care team.  In the event your doctors have mentioned specialized genetic screening for aHUS, we’ve posted the links to the University of Iowa’s MORL facility.  Our Foundation supports research efforts there, and Dr. Carla Nester and Dr. Pat Brophy volunteer in our Doc to Doc Directory (Dr. Brophy is also a member of this site, as well)..

     Your speedy access to Soliris was encouraging, and this site has Soliris information available at http://atypicalhus.ning.com/forum/topics/soliris-1 .  If you haven’t yet contacted them,  call 1-888-SOLIRIS for further information.  Nothing can replace the info and medical advice offered by a patients’ own doctor/specialist/care team, so we strongly caution you that other patient’s experience may not be the proper medical treatment plan for your  situation.  (Seek and ask questions regarding medical advice from your own doctors or care team members.) 
Atypical HUS is a complex disease with a variety of manifestations, so perhaps you might also benefit from reviewing how aHUS can affect multiple organs in the body and not just the kidneys. (See http://atypicalhus.ning.com/forum/topics/ahus-complications-potential-impact-for-multiple-organs). I hope these resources provide a starting point  for aHUS, and that our website is a source of support for you and your family. Feel free to post and to ask questions as you wish/need.

 
 
 

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