The Atypical HUS Foundation

March 2010 Blog Posts (18)

The Pirates Made off with Nearly $20,000, March 20, 2010!

Pirates Make off with Nearly 20K!

Pirates of the St. Louis Area converged on the Carpenters' Hall, March 20, 2010 and made off with nearly 20K, say participants in an event which included a live auction, which included everything from a vacation in Branson, Mo. and a hockey jersey signed by the entire Blues team, to dancing lessons and a silent auction of everything from new children's books to an…

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Added by Cheryl Biermann on March 31, 2010 at 9:50am — 3 Comments

Rotarix Vaccine

Hello

My 8 year old daughter has experienced three HUS episodes and all three times semmed to be triggered when she caught a stomach flu.

I am considering getting her Dr to give her the Rotarix Vaccine which prevents Rotovirus.

I am just afraid the side effect might actually put her in another episode.

Has anyone vaccinated their child for this?

Have any of your Dr's suggested it?

Your feedback would be greatly…

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Added by Theresa Pereira on March 29, 2010 at 3:35pm — 5 Comments

Chloe's first days on Soliris

Linda asked me to post on Chloe's first days on Soliris...

As a little background - Chloe is 10 months, diagnosed on January 22nd, getting near daily ffp/cpp, which seemed to be working...except that her tiny little body couldn't handle the high levels of fluid. She was fluid overloaded during an outpatient infusion two weeks ago, which sent her into her latest hospitalization. Chloe's doctors, Drs. Listman and Schurman at Golisano Upstate Medical Hospital in Syracuse, have a…

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Added by Candace Mulcahy on March 29, 2010 at 10:30am — 9 Comments

BP been trending upward

Well, hopefully no big deal, but the past week or so Ryan's bp has been slowly trending upward. He usually runs 110/70 ish. Been running 120/80's and a few times including tonight he's 130/90. Doctor seems to be thinking that it may be part of a growth spurt and increase in appetite. God knows he's 10 and doesn't ever want any food that's actually good for him, the saltier the food, the happier he is. Guess I gotta start buckling down more on that. So, we're increasing a bp med and going to do… Continue

Added by Heather Still on March 23, 2010 at 10:04pm — 11 Comments

Surgeon follow-up

Hi there - really quick - just wanted to let you all know Hyde had his follow-up appt with the surgeon today and it went great - we were there maybe 10 minutes - so that's good. Also - I'm so afraid to jinx it but Hyde's BP has been better the last 3 or 4 days and he's still on only 2 BP meds and one of those is a lower dose than before the surgery, and again - we are hoping that this will continute to drop. Hopefully we can give you…

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Added by Phyllis Ann Talbot on March 19, 2010 at 11:40am — 2 Comments

lil miss chloe

we have been busy in the peterson home. we finally got the results of her blood pressure monitoring and some of her pressures were higher than he wanted so he is going to fiddle with some of her meds.. chloe goes to see the doc on monday we need some prayers for good blood work because we are supposed to take our family to california for vacation next friday. this is the time of year i get all overwhelmed on the 28th of this month it will be two years since my baby…

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Added by lisa ann peterson on March 19, 2010 at 1:08am — 4 Comments

Clinic and Hike - sign up today! ;-)

Hey everybody - we had a really good clinic today. I was nervous because it was the first time checking all Hyde's #'s after the nephrectomy and I knew from other kids that sometimes their kidneys had been doing more than they thought and they had a few hairy weeks/months trying to adjust dialysis to get back to an even keep. Well - apparently Hyde's kidney's really weren't doing that much after all (just like we though) because all his #'s were amazingly stable. BUN of 57, Creatinine of 9.6.… Continue

Added by Phyllis Ann Talbot on March 15, 2010 at 3:31pm — 3 Comments

'A Parent's Perspective' Tab: Atypical HUS 101

We've been busy crafting a new website feature that we hope will be useful to aHUS patients, parents, and all those interested in the day-to-day issues involved with atypical HUS. In a stroke of brilliance, Cheryl Biermann recognized a need for "Atypical HUS 101" and formulated an outline of essential information. Jodi Kayler took the ball and ran with it, creating an overview of aHUS issues and critical points to consider for effectively managing the care and treatment of aHUS patients. My…

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Added by Linda Burke on March 13, 2010 at 9:57pm — No Comments

Life in general

Well, life in general has been good, I've gotten over the fact that my potential donor backed out on me. Ever since that day, life has been a roller coaster. My own mom brings up a point that she would like to get tested again, but we have one mian issue on our hands and that is Facter H. Would the factor H be a problem? My mom contacted my very nice and helpful transplant coordinator at Johns Hopkins to see if the factor H would be an issue, she is going to take that up with the team to see…

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Added by Jessica Olivia Frysz on March 13, 2010 at 8:01pm — 3 Comments

Happiness is over

A month ago I had an individaul come to me offering to donate a kidney transplant. Last night at the time of 8:38pm, I get a phone call with a laughing tone on the other end, telling me that he is going back to his ex to get married and that I am not to receive his kidney. This brought my hope level up and now I'm hurt, and have dealt with disappointment long enough. I'm ready to find a donor, or just accept a deceased kidney at this point, to be honest. It seems like as my hope goes up, my…

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Added by Jessica Olivia Frysz on March 9, 2010 at 12:54pm — 8 Comments

My beautiful Daughter Destiny

In Nov of 2009 got sick. I thought it was the flu we went to the hospital and she was admitted on the18th to the ICU at St. Frances Children Hospital we were there for 3 weeks they then sent us to OU's Children's hospital. We got there on Dec 9th 2009, and left on Jan 15th 2010. While we were there we were in the ICU twice because of the blood pressures she got as high as 186/132 she had a stroke and lost her vision for awhile (still has some… Continue

Added by Destiny Floyd-Rakes on March 8, 2010 at 5:53pm — 6 Comments

What a week - and BP meds help

OK - here's the latest carepage update - and hopefully the last one until our next clinic - I do have a question for all of you out there that have had nephrectomy's - one thing I had not been told prior to Hyde's nephrectomy was that a couple of his meds would no longer work since his kidney's were removed (would have been nice to know before - but oh well). They have taken him off his Cozaar and Captopril. Right now he's on Norvasc (amlodipine) and Atenolol (this as…
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Added by Phyllis Ann Talbot on March 5, 2010 at 2:48pm — 7 Comments

Anna is home and her line is out ;-)

In last two weeks Anna been having problems with her central line untill last weekend it was really started getting more worse. I had to pick up Anna from school on Monday and take her to Doernbecher hospital, for check up and culture of her line. On Tuesday morning Anna went to school and stayed there untill she was done with her school. During lunch time i received call from Anna's doctor telling me that she has STAFF infection and that they need to admit Anna and remove line on next day. I… Continue

Added by Svetlana Finley on March 5, 2010 at 9:46am — 5 Comments

Holding Strong

Hey everybody,

Been awhile since I've updated on my Brody man so I thought I would just leave a short note and a hello. Sorry Phyllis to break your blog run:)

We saw Brody's nephrologist today, things are looking good for Brody's kidneys. Dr. thinks they have recovered 100% from his occurance almost a year ago (March 6). Brody has been sick with colds or viruses on and off for the last couple of months thanks to his big sissy who started preschool this year. He seems to be…

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Added by Amy Swarbrick on March 5, 2010 at 1:48am — 6 Comments

WE'RE HOME

Yippee!!! We got home a few minutes ago and Hyde's sleeping on the sofa! Sorry i didn't update earlier but we had kind of a rough evening/night/morning with blood pressure, itching, and pain for Hyde - so didn't want to jinx anything until we were on the way home. Hyde didn't get too much sleep last night - think the rash and the surgery finally caught up with him and he was fussing pretty much every 5 min or so but seems better today -…

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Added by Phyllis Ann Talbot on March 4, 2010 at 4:09pm — 4 Comments

Not today :-(

OK - sorry to fill up all the blog space here - just now that Heather and a few others were having problems seeing the carepages - hopefully will be home in a day or two and I'll stop filling this space up!!
Here's the post below:

Oh well - guess we got a little overexcited - we really had thought Hyde might be going home today - but…

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Added by Phyllis Ann Talbot on March 3, 2010 at 12:12pm — 3 Comments

Still doing good

Still doing good

Hey everyone - just to let you know - Hyde's still doing really well - he stayed with Bill last night and did well - only my tough little kid would rather deal with the pain of having two organs taken out than to take any medicine he's not used to :-(. He did take some of the 'good' tylenol yesterday midday - and took a long nap and then was able to get up and move around a…

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Added by Phyllis Ann Talbot on March 3, 2010 at 9:23am — No Comments

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below - bu…

Hey there everyone - just in case you haven't been able to get on the carepage - Heather mentioned she was having some problems - I'm actually breathing a little easier - see latest update below - but basically so far so good! ;-)

Our night and PD!!

Posted 2 minutes ago

Hey there everybody - I'm sure you are all SICK of hearing from us by…

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Added by Phyllis Ann Talbot on March 2, 2010 at 9:24am — 4 Comments

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The Atypical HUS Foundation 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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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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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