The Atypical HUS Foundation

April 2011 Blog Posts (18)

Maine Volunteer Press Release

Please view the link below to see one of our Foundation Members in action:

 

http://www.volunteermaine.org/gsa/index.php

 

Linda Burke earnd  an "Exemplary Award", one of the top awards presented in the state of Maine by First Lady LePage.  

 

Thanks Again, and many of you are "Exemplary"  in your day to day activities.

 

Bill and Cheryl Biermann and all of the Children with…

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Added by Bill Biermann on April 26, 2011 at 9:52am — No Comments

clotting

Hi all, this may actually be better off in the dialysis forum.  But I need experienced people to see this and answer, possibly.  Nathan had a clot in his fistula, (we think), that disolved itself.This was a little concerning, but since he gets heprin from dialysis 3xs a week, we figured it was a one time deal. 

 

Today, they accessed the fistula okay,(it is still developing), but when he drew blood for labs it was goopey.  I asked, and sure enough they said it was fibrin,…

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Added by Cheryl Biermann on April 20, 2011 at 6:23pm — 10 Comments

Plasma Exchanges

Hello, I hope all is well and blessed with everyone. I also was hoping that I could get some feedback. I was wondering if there was anyone that has or is doing 3 times a week plasma exchanges and if so did/are you having any side affects from that many treatments. Destiny just this year has had over 40 exchanges we started the 3x a week treatments back in Oct 2010 and in early February she started having memory problems and sometimes would have some… Continue

Added by Destiny Floyd-Rakes on April 19, 2011 at 2:39pm — 8 Comments

Hike for Hyde 2011

Hi everyone - we had a GREAT day Saturday and things went well.  I was waiting because a friend put together a video that is on facebook of the hike - but I need him to get me the file so I can put it on here - in the meantime here's a link to some pictures from Saturday. 

 …

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Added by Phyllis Ann Talbot on April 19, 2011 at 10:08am — 4 Comments

Linda Burke is honored as one of Maine's Volunteer of the Year finalist

 

April 14th was a special day for the Burke Family.   The State of Maine has a system in place to to recognize volutneers.   However, they also have process to choose exceptional service.   So on April 14th, Linda was one of the finalist for the Maine volunteer of the year Award.  She was invited to attend a ceremony sponsored by the Governor of Maine, to be honored by the Governor's office, and received a special award.  !

 

The Foundatoin is honored to have so many of…

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Added by Bill Biermann on April 15, 2011 at 6:49pm — 7 Comments

One Year Ago today, our son's life changed forever....

One year ago today the life of our child changed forever. As we lived the ups and downs in the early stages the one person that never showed a sign of distress or giving up was Ben. His spirit and strength are inspiring and we are honored to call him our son.



Ben, your mother and I are so blessed to have you in our lives.  We are so proud of the young man you are becoming....…

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Added by Jonathan Aguallo on April 15, 2011 at 8:41am — 4 Comments

White cell count issues

I haven't posted in awhile now about Alyssa post- transplant as she has been doing great.  We are almost at the 6 month mark now, using Soliris every two weeks, 1200 mg.  Unfortunately, she has recently encountered some new blood problems and I am wondering if anyone has any knowledge or expertise in this area.  Her white cell count has dropped to 1.4 (should be between 4-11)   and her neutrophils are 3 when they should be between 45-75%.  She is leukopenic and neutropenic, and the Doctors have… Continue

Added by Deborah Deffenbaugh on April 15, 2011 at 7:42am — 5 Comments

Vision Problems

Hi Everyone,

 

I'm wondering if anyone has encountered vision problems? 

Jack has been battling headaches for quite some time; he wears glasses but recently started saying that he didn't think the Rx was strong enough. He went for an eye exam yesterday and our optometrist discovered that he does not have central vision in his left eye!  He went to straight to a retina specialist who ruled out a problem with the retina, but thinks there is a problem with his optic nerve.…

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Added by Dana M Simone on April 13, 2011 at 7:37pm — 9 Comments

Update on Ash

Hi all, thought i should post an update on Ash as its been a while.  On the whole Ash is doing really well, and mostly things are cruising along relatively stable.  His LDH levels are still never in the "normal" range and we tryed reducing Ash's neorecormon (aranesp) as Ash's doc thought that because his bloods are good that he probably shouldnt need it but when we went to fortnightly instead of weekly his Hb dropped quite alot after a few weeks so we went back to weekly.  Ash is just trying…

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Added by Kerri Grey on April 13, 2011 at 2:51am — 3 Comments

Applications Submitted for Soliris Use in aHUS Patients

    The Foundation for Children with Atypical HUS encourages patients, family members and investigators to share information and explore options/resources as we work together to gain insight into this rare and complex disease.   We appreciate our website members' efforts* in helping us compile the latest aHUS journal articles, seek research studies, and gather news releases of interest to our online aHUS community. 

 

     As you may have noticed, the company…

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Added by Linda Burke on April 12, 2011 at 10:50pm — 1 Comment

Hike for Hyde - Saturday

Here's a cool article about the hike in our local paper!  Also just heard Melissa Hearn's aunt had a FABULOUS 'splinter' fundraiser in honor of Bryan for the hike from PA - competing with the Aunt Sarah/ Uncle Warren for biggest out of town fundraisers - and think they may have beat the Milford posse this year ;-). 

 

http://www.forsythnews.com/section/1/article/8239/

Added by Phyllis Ann Talbot on April 11, 2011 at 6:36pm — 1 Comment

Medic Alert Jewelry goes High Tech with USB Drive

     The more tradtionally-styled medic alert logo bracelets and necklaces with the usual pendants and dog tags have just gotten a tech update with the advent of USB devices stored right inside!  Since medical USB devices are small and portable, these specialty thumb or stick drives for computer access can be utilized to store a gigabyte or more of an aHUS patient's medical history, lab or test results, and other pertinent, health-related data.  Most medical USB devices offer password…

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Added by Linda Burke on April 8, 2011 at 10:30pm — 1 Comment

What a morning!

OK - whew - should say what a couple of weeks!! Hyde started almost 2 weeks ago with a bad sore throat and a low grade fever (yes - pretty much for the last 2 weeks - welcome to immunosuppression!!) Anyway - his strep was negative and our amazing pediatrician who we love - wanted us to go ahead and bump up labs a day last week to try to figure out what was going on. Good news is his labs last week were pretty stable - bad news - one of his viral studies (and i'll…

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Added by Phyllis Ann Talbot on April 7, 2011 at 3:23pm — 3 Comments

lil miss chloe

  well lil miss chloe had an ultra sound and we will know the results of that tommarow. also her labs are getting closer and closer to meeting all the criteria of the study. her hemoglobin is 10 her hematocrit is 29 her creatnin is .50 and her bun 22 and her ldh is 300 and also her platlets are 250. she also is wearing the 24 hour blood pressure monitor.. so we will send that back tommarow. on the 21st she will have the next MRI and she will also get labs again to monitor her. I am nervous and… Continue

Added by lisa ann peterson on April 7, 2011 at 12:53am — 1 Comment

memory stick

 

 I  have bought  to my son a memory stick with a program tailored medical reports, clinics results  and latest contact phone numbers of doctors, as well as its his history medical¡¡¡¡¡¡¡ . It's a pendant, and also used a keyring. In case of accident or stay in another country or in another part in the world , the hospital updated data with this program. He is using this  because   he  needs Soliris  each  15 days and he has a new kidney too

Added by maria vicenta carratala rios on April 6, 2011 at 2:51pm — 2 Comments

lil miss chloe

i woke up this morning thinking about how on the 28th of march chloe has been dealing with this disease for three years. it doesnt feel like its been that long. well lil miss has been staying strong, i find it amazing that we take away epogin in feb and she is maintaining her blood levels they are low but they have been lower. i have to believe that god has a plan and that I am just supposed to wait. chloe on wed will have some…

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Added by lisa ann peterson on April 1, 2011 at 9:18am — 1 Comment

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