The Atypical HUS Foundation

January 2010 Blog Posts (20)

Soliris and Paul

Paul started Soliris in Aug, 2009. He has done fairly well, except for getting sinus and viral infections which have led to hospital stays both locally and at Children's in Seattle. His labs returned to "great" status over a week ago, but he retained so much water that he's had trouble walking (waddling is what he says he does) and couln't wear regular briefs and was very tired. He returned to school (Kindergarten) Friday, Jan 29, first day since school let out in December. Good weather is… Continue

Added by Vicki Ravely on January 30, 2010 at 6:27pm — 12 Comments

AHUS huh who knew........

you know i really think we need a handbook on how to deal with this all..lil miss sees a ENT on the 8th, then the 15th she gets an echo and infusion and bp monitoring..iam on mental overload my lil girl not only is having sleeping problems but now is wetting her pants and says she doesnt know when she has to go sometimes...i feel like iam at my mental max..we had to talk with the lady because we soon will be having a hearing for ssi that we applied for over a year and a half ago and keep… Continue

Added by lisa ann peterson on January 29, 2010 at 12:54pm — 5 Comments

2nd Anniversary and Upcoming surgery

Well - this is a very strange update to make - and actually on both parts it's very bittersweet - I've gotten pretty comfortable and familiar with the status quo.



First of all this is the 2nd anniversary of the date we first went to the hospital and truly began to realize how very sick Hyde was. All of our lives took a turn on this day in 2008 and we've never really been the same since.



On top of that - of all days for the urologist to randomly schedule our appt to discuss… Continue

Added by Phyllis Ann Talbot on January 28, 2010 at 6:56pm — 7 Comments

A couple updates

Hey all,

Sorry I've been absent for a while. Getting too caught up in life I guess. . .



Anyways, there's been some good news for us - Bryan's Soliris has been covered by the new insurance company trough April 19th. At that point, we will need to submit more paperwork showing that the drug is still working, but I suspect that that is just a formality and things will continue without a hitch.



The less exciting news is that his Soliris infusion didn't go very well last… Continue

Added by Melissa Hearn on January 28, 2010 at 1:13pm — 7 Comments

Help Keep This Support Network Strong

In the past 10 days, the trust of this online support network for aHUS patients and families has been breached by employees of an online Canadian pharmacy, who have posted commercial ads on this site without permission. This website exists 'commercial free' due to the generous financial and technical support of Steve Greene and the Alpha Marketing Team, and is backed by the wonderful expertise and organizational skills of Bill and Cheryl Biermann (The Foundation for Children with Atypical HUS).… Continue

Added by Linda Burke on January 24, 2010 at 10:30am — 10 Comments

FH blood test scheduled, FINALLY

I know we all look to our dialysis teams to give us information on certain things, but what if your dialysis team just pushed you away, where do you go from there? Well, that's what happened to my mom and I when we were trying to find a place to get my FH autodantibody blood test to be performed. First, I spoke with someone from my unit, they said they couldn't do it, then I call my doctor, no help there (at first) then my mom starts calling around to the local transplant centers here in… Continue

Added by Jessica Olivia Frysz on January 24, 2010 at 12:54am — 5 Comments

Anna

Anna is been doing well, last weekend she had a cold and our doctors were worry about her get relapse, but NO her labs were good. She went 4 weeks with out any problems, so our plan will continue another 4 weeks, then possibly, to get her line out right after she is done. We will be just watching her how she does, if she will need it another treatment, then she will be getting another line. Anna is very excited to get her line out and get in the pool ;-) My worry is in the past 2 years they… Continue

Added by Svetlana Finley on January 22, 2010 at 10:58am — 2 Comments

Hello Everyone Its been a while since I have been on the Site, got through another Christmas, the 3rd without Jack and now I am into my 3rd Year of life without him. I hope everyone had an enjoyable…

Hello Everyone



Its been a while since I have been on the Site, got through another Christmas, the 3rd without Jack and now I am into my 3rd Year of life without him. I hope everyone had an enjoyable Christmas and I hope that 2010 brings some peace and hope for more insight and answers/treatments for aHUS. I bumbled through Xmas and New Year in a numb state, no tears like the previous couple of years, just the state of mind do what I need to do, what I can do and then get the hell out… Continue

Added by Sara Palmer on January 22, 2010 at 2:05am — 4 Comments

MIA

Hey all--

Sorry we've been MIA from the board for a while. We were so busy with the holidays and I still feel like I'm behind! We spent our first full holiday season at home and are so blessed!!! Even though, Aiden did get the chicken pox the day before Thanksgiving (on my bday!). He was a trooper and we had a wonderful holiday season!



Linda had asked me to share a recent blog post with you guys and I wanted to put the link here for your reading pleasure ;) . I just restarted my… Continue

Added by Christy on January 21, 2010 at 2:30pm — 5 Comments

lil miss sunshine....

do you ever sit and wonder why??? i have been kinda in an emotional funk when it comes to my lil miss.. i should be happy we are only going once a month and her last labs looked good...but to tell you what my friends iam afraid to loose my lil miss to this disease...i pray everyday god finds a cure for our kids.. we have lost a few lil kids that we know to childhood illness just in the last month and i tell you what those kids were amazing and so were their parents..we struggle in our lives of… Continue

Added by lisa ann peterson on January 21, 2010 at 11:13am — 6 Comments

update on evan

hope everyones holidays were great..i havent been on here in such a while i figured i would just write a short little update on evan...we have been so lucky that evan has been completely healthy since we came home from the hospital in september..he is going every 4 weeks now to the doctors..he has made it threw his first ear infection, stomach flu, cold, and a viral infection..and nothing has effected him at this point..we are so blessed....thank you lord...hope all of your children are doing… Continue

Added by Cassie on January 21, 2010 at 9:55am — 5 Comments

more stress to add to the wonderful world of transplantation.

Well.... this Factor H testing is taking longer than I truly thought, because a lot of people here in Buffalo are not familiar with the specific testing I need done, or they don't have the equipment to perform the testing. I'm almost pulling my hair our, because I asked for a script, but the person writing the script keeps telling me I'm not providing enough info to write it, when I'm giving all of the info that I have. So, now I have to actually go downtown to get all of this testing done,… Continue

Added by Jessica Olivia Frysz on January 17, 2010 at 6:27pm — 4 Comments

Now What? Jodi Kayler & Cheryl Biermann

Atypical HUS 101 (from a Parents’ Perspective)

So the doctors have diagnosed your child with Atypical HUS, now what?




So, you or your child's symptoms have led you to the doctor or straight to the hospital. Symptoms may have included extreme fatigue, puffiness, vomiting, paleness, fever, and perhaps some diarrhea. It is possible that you noticed swelling as well as dark or strong smelling urine. Your child's appetite may have completely vanished and you are struggling to… Continue

Added by Cheryl Biermann on January 13, 2010 at 5:55pm — 5 Comments

Clinic and possible nephrectomy

Here's what I posted to our carepages today - would love to know anyone's opinion on the nephrectomy



Hi there everybody - well - fun stuff first or not so fun stuff? The good is we all had a great Christmas - Santa came to see the kids and I'm surprised there were any toys left for anyone else. The other big thing is we had SNOW here last Thursday (OK - it was maybe 1/2 an inch but it was snow). And the kids and mama had a BLAST - check out the new pics I uploaded of the kids… Continue

Added by Phyllis Ann Talbot on January 11, 2010 at 4:27pm — 7 Comments

The Broken Window

Seems that I'm busy mending things at this time of year - mittens and holes in pockets, to name a few items. When my fingers are flying with needle and thread, my thoughts are flying too...swirling around a variety of topics, it's then that my thoughts leap from one train of thought to another. Mending pockets to mending fences to ... things un-mendable.



During the holidays, people struggling with life challenges all too often heard a hollow ring in others' joy-filled messages…

Continue

Added by Linda Burke on January 9, 2010 at 10:30pm — 2 Comments

My 21st anniversary is approaching

My dad brought up an important event that had happened in my lifetime. The day that I was initially diagnosed with aHUS. And, my 21 year anniversary of being sick and being a dialysis patient. This is truly an accomplishment for me, because back when I was diagnosed in the year 1989, seeing my 22nd birthday wasn't always in the planbook, let alone living this long on a dialysis machine was never in the planbook at all. I officially turn 22 on February 23rd. I will have been a dialysis patient… Continue

Added by Jessica Olivia Frysz on January 8, 2010 at 11:52pm — 4 Comments

SNOW in Georgia

OK - know this isn't that big a deal for any of you in the North - but down here - the 1/2 inch we got is HUGE and we are so excited - and in that we I include myself with the kids! Just posted some snow pics including a cool use of dialysis supplies - I knew that stuff would come in handy for something SOMETIME ;-). Hope all is well!

Added by Phyllis Ann Talbot on January 8, 2010 at 11:04am — 2 Comments

Getting closer and closer, more Factor H testing

So, I have gotten information on some more Factor H testing. I have already signed a consent for the University of Iowa, now I just need the vampires to suck my blood and ship the plasma and serum to them, so they can get the testing underway. This is just one of 2 final steps in my transplant work up, before my doctors and coordinator go to committee to figure out some kind of treatment plan, so I can finally have that chance I have been waiting for. We can't rush it, because one wrong move,… Continue

Added by Jessica Olivia Frysz on January 7, 2010 at 4:39pm — 5 Comments

My 1 year Anniversary

Well,

Today January 7, 2010 marks my 1 year annivesary of when kidney failure began. Since last year life has changed in so many ways. Some good and some terrible. Today is a spooky day because I am thinking back to how I felt last year and wondering how I made it through. Well, I know that answer. God. That is why I am still here. I pray all of the time to please let me see my daughter grow up. I know he won't let me down!



HUS, PD, clinic, renal diet, phosphorus binders, blood… Continue

Added by Jill Ziegler on January 7, 2010 at 11:03am — 3 Comments

what happened to doctor to patient consultation?

I know that there are some parents on this site who have children that are on dialysis. Often we rely on our doctors to do the right thing, but when a doctor goes behind the patient's or parent's back in making a decision to change something that could possibly hinder the life of the patient, then that calls for concern. Last week Wednesday at my dialysis treatment, I was confronted with an issue, that a decision was made to increase my blood flow on the machine. For those who don't know, blood… Continue

Added by Jessica Olivia Frysz on January 2, 2010 at 11:55pm — 2 Comments

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WELCOME - JOIN US!

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.
  
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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...

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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