The Atypical HUS Foundation

I WAS JUST REALIZING I HAVENT BLOGGED SINCE BEFORE CHLOES LAST APT.. WELL THE 22ND OF MARCH WAS HER APT AND THE BLOOD WORK LOOKED GOOD.. BUT DR. H SAID REALLY HE DOESNT KNOW WHAT TO DO WITH CHLOE NEXT.. HE DID SAY WE ARE STOPPING PLASMA TREATMENT HE FEELS WE ARE PUTTING HER AT RISJ FOR NOT BEING ABLE TO RECIEVE A TRANSPLANT WHEN HER TIME COMES. HER LAST ONE WILL BE IN MAY. HE SAYS WE ARE JUST GOING TO HAVE TO WAIT AND HOPE WE GET SOLARIS APPROVED BEFORE RELAPSE.. TO BE HONEST THIS ALL MAKES ME WANNA CRY. I KNOW THAT CHLOE IS DOING WELL, BUT I DONT KNOW WHATS NEXT THERE ARE TIMES I JUST LAY WITH HER AND CRY WHILE SHE IS SLEEPING BECAUSE I LOVE HER SO MUCH AND I CANT STAND THAT I CANT MAKE HER BETTER.. BUT MY FRIENDS GOD HAS A PLAN FOR MY BEAUTIFUL ANGEL AND SHE HAS MADE ME A BETTER PERSON.. WE WENT TO CALIFORNIA FOR VACATION IT WAS AWSOME AND THE WEATHER WAS A DREAM.. I WILL POST PICTURES AS SOON AS MY EXTENAL HARDRIVE GETS UP AND RUNNING NEXT WEEK. I KEEP PRAYING FOR SOLARIS AND WITH THE SSI APPROVAL HOPEFULLY IT WILL BE SOONER THAN LATER.. THE DOC UPPED HER MEDS FOR BP BECAUSE SHE IS STILL ON IN THE 128/80 RANGE SO SHE IS NOW ON 500MG OF LABATOLOL, 10 MG OF AMLODIPINE, 20 MG OF LISINOPRIL AND 600MG OF IRON, 1500 UNITS OF EPOGIN, AND SINGULAIR WOWZERS ITS ALOT..... MORE THAN AN 80 YR OLD LADY I TELL YA AND SHE STILL IS HIGH.... I WILL UPDATE AFTER BLOOD WORK ON THE 22ND OF THIS MONTH THERE WILL BE NO PLASMA THIS TIME WE WAIT TILL MAY THEN STOP.. GOD BLESS ANY FAMILY DEALING WITH THE UNKNOWN AND I KEEP PRAYING FOR A CURE

TILL LATER LISA

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Comment by Cheryl Biermann on April 16, 2010 at 8:47pm
Hi Lisa, I was so glad to hear you were able to take a vacation and get SSI for Chloe-that must be a huge load off your mind. I hope the tummy bug is going to leave her as is and not rock the boat! I know exactly how you must feel, when I look at N. and see him struggle with so many things, I just have to put my trust in the Lord and look at the wonderful qualities he has given N, some of them are probably BECAUSE he has suffered so much. God bless your family.
Comment by Linda Burke on April 14, 2010 at 10:48pm
Glad you have gotten SSI approval...nice to have that particular stressor lifted. I wanted to let you know that Skyler just had a tummy virus that also created the random vomit espisodes for a few days. Unfortunate, but it was a relief to hear that a stomach bug was going around and that it was just a normal childhood illness. (But as an aHUS Mom, you KNOW I took the SkyGuy to our doc to make sure it wasn't an aHUS flare!) Try a little trip to the gym for the stress...how's your new program going?
Comment by lisa ann peterson on April 14, 2010 at 11:36am
thank you colette you said what i needed to hear i have been crying for the last 2 days because my lil one just got approved ssi and its been stressful and she has also began puking at random again we head to spokane on thursday of next week maybe this puking is nothing but my mommy head and heart says ahus is a lerking..i want nothing more than a cure so all of our kids dont have to be sick no more.. i guess its just the 2 yr funk for me but my heart just aches at times for our families and to the mommies who tend to sugar coat the truth and wear our tough hats so no one sees were hurting inside.. all of you ladies on this website have been my rocks and anchors so thank you so much....god bless
Comment by Colette Ann Frysz on April 14, 2010 at 8:43am
Lisa,

I totally know the agony and the ecstasy of having your child go through this. I've always told Jessica that no matter what she will not be alone. We will be in this together. For us it is together as a family. She was 11months old when first diagnosed and is now 22. She couldn't get a tranplant for 10 years and then miraculously she could. She was unable to receive a transplant because of all the transfusions she'd had which is the concern of your doctor for your daughter. As soon as she got the transplant the ugly head of the disease took it and she was not even listed since that time which is already 11 years ago. We are now in the process of trying to list her in the hopes that if she gets a kidney she'll be able to keep it with the assistance of soliris or something else. In all of this I sit helpless unable to do much because the disease stops even any of us from being able to assist her. That is the worst thing to deal with. So for 22 years I've prayed. I just keep praying. I just keep hoping my daugher will get off a dialysis machine. I pray she'll be around long enough to get off the machine. Many times when she was asleep or doing something I'd cry in despair so she couldn't see. So many times I had to and have to be strong for her. It takes all I have at times. Yet in all of that I see that she is a vibrant determined strong young woman who has touched so many just by being herself. She is first to help another with a kind word or act. She is devoted to her friends. She loves going to school and studying animals. I have to believe that there is a future. I only pray that I have strength to see things through no matter what. So please hang onto all that can be. Chloe will find her future and you will be there too.
Comment by Heather Still on April 13, 2010 at 8:19am
Thanks for the update. Great to hear that Chloe is stable and plasma will be stopped. I always refer to this damn disease as a roller coaster ride. The ups and downs, the excitement when they are at their highs, the fear when they are shooting down hill. Just keep going, one day at a time and make sure you find something positive to smile about every day.
Take Care!!!!
Comment by Linda Burke on April 10, 2010 at 9:45pm
Good to hear from you, Lisa and so glad that you're reporting on a fabulous vacation! We all know how the uncertainty of aHUS flares can wreak havoc with the mind as well as the body, but I know you draw strength from faith, love, and hope. It's wonderful that Chloe's health is stable and that all the right paperwork is in place - just so frustrating that the wheels of healthcare grind so slowly! Keep your tuff hat on, our prayers are with you and your family! Sending a hug, Linda

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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!
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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.
  
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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...

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