The Foundation for Children with Atypical HUS

Dialysis

Hi there - started this forum on dialysis - for now will include both PD and Hemo. Our son Hyde will be 3 in July of this year and he's currentle been on PD for about a year exactly. Prior to that we were on hemodialysis for about 2 mths and prior to that CVVH off an on for the first 6 weeks of our journey.

So far so good on the PD - I must say I was encouraged to see some of the other stories of folks that have been on dialysis for long periods of time. Even though it's also reminded us of some of the risks. We are currently in a holding period and waiting to see how the newest research pans out.

We try to be SUPER careful with Hyde on dressing changes, etc. since compared to the first 6 mths of 2008 - we can't even compare Hyde's quality of life to that time period. We go to the hospital once a month and then do PD every night for 10 hrs. while he's sleeping. Hyde is able to swim in a clean pool and take baths just like a normal kid.

Any dialysis related questions and/or answers feel free to discuss her.

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Permalink Reply by Cheryl Biermann on August 1, 2011 at 6:21pm

TEGO UPDATE

 

After we left on Friday, sometime over the weekend, a third child, not currently getting hemo, was receiving fluid through her dialysis catheter with one port clamped, her tego leaked from the line that that was receiving the fluids. 

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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.

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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.
  
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