The Foundation for Children with Atypical HUS

Hi!!

Haven't been on in a while.  Still trying to adjust to California and Sydney got really sick in October.  First with Pneumonia and then a fungal infection that caused us to give up our beloved PD and swtich to Hemo.  Not a fan of driving 2 hours one way, 3 days a week.

Hoping for a better Holiday.

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Comment by Gene Billingsley on January 6, 2012 at 12:26am

KaTrina - have you looked into doing home hemo dialysis? We did overnight PD for our son for many years, then complications forced us back to hemo. We started looking for a home hemo solution and found one from a company called NxStage. If you'd like to talk about it let me know - we can swap numbers.

Comment by Tristin Alan on January 4, 2012 at 1:36pm

Hi KaTrina,

I enjoy reading your blog. I am also in Northern California. I am searching for good dialysis centers. Any recommendations? Thanks. Have you been able to get back to PD or still on hemo? Happy New Year! 

Comment by Cheryl Biermann on November 30, 2011 at 2:09pm

Maybe they can adjust her time to the late afternoon then?  Nathan's had to be in the am because I  had to be freed up those hours.  Some of our kiddos came in around 12, after a four hour session, they went home.  It would mean getting home later.  It is a bear getting time changes though, good luck in adjusting.

Comment by Jessica Olivia Frysz on November 30, 2011 at 9:49am

Katrina:

Sorry to hear that :( But, at least it is only 1 day a week instead of 3 days a week. I drive to and from my dialysis center 3 days a week, but I don't have to go 2 hours away. 

Comment by KaTrina Slaughter on November 30, 2011 at 12:54am

We are not adjusting to Hemo. On hemo days she is all thrown off cause she feels good late in the evening, when we are all ready to go to bed.  So we are up with her all night.  Then the next day her energy level is so low, she sleeps all day.  Not a fan of hemo, miss my PD catheter.

 

Comment by Cheryl Biermann on November 29, 2011 at 5:08pm

Eww, those funguses stink.  That's what got Nathan's tube too.  How's she adjusting to hemo?

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

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