The Atypical HUS Foundation

October 2009 Blog Posts (25)

and so the autumn came....

and all of my kids are sick, and I'm sick too......I hate it :(. But as far Ania is doing great, no sins of relapse. We are going on Monday for our FFP , and She well have some medical tests done, so we well see.

Added by Zofia on October 30, 2009 at 10:05am — 6 Comments

Virus :(

So Brody made it through his first virus without ffp infusions and has not relapsed yet (fingers are crossed). It was in August when he got his last infusion. We had labs done right before we left for Iowa, which was right in the middle of his bad cold (thanks sister for sharing), and his docs said with his red blood cells, H&H being down while platelets went up, it was classic of a virus. Yesterday we had more labs drawn for precation (yes I'm a control freak) and everything had already… Continue

Added by Amy Swarbrick on October 29, 2009 at 5:42pm — 5 Comments

and so it begins....

we start plasma treatment again on the 10th of november and we will be doing that every other week.. i dont know quite yet about the plan of solaris i do know that dr. h talked to dr.smith about it but i do not know all the details because our doc is gone right now so i will talk more with him on monday when i call him.. anywho i will update more when i get more info from the good doc on monday other than that my lil miss looks good..

Added by lisa ann peterson on October 29, 2009 at 4:11pm — 4 Comments

Update on Anna

As many of u know my oldest son Enoch had H1N1 and still battling with Tamiflu and it looks like it is not really helping. Today is his last dose and we will see what to do next. My younger son Misha got better with in 24hr after he got his meds and on the way to school.

Today Anna started so far she has cough and fever just 100.1, so we just sitting and waiting if her fever will go up. I did e-mail to our doctor and waiting what they want us to do. I know we can't give her any Tylenol,… Continue

Added by Svetlana Finley on October 29, 2009 at 11:50am — 8 Comments

Calling for Notecard Inspiration!

Hi all,

We are getting ready to start designing super cool notecard/generic gift packs that will be sold as a fundraiser for the foundation. The cards will be trendy and cool so that anyone might want to buy them but also have elements that reflect the spirit of the kids that fight this disease. That's where I need your help. I need inspiration!



A couple people have sent me drawings that their kids have drawn, which is great and I'll happily take more! Other things that could… Continue

Added by Jodi Kayler on October 28, 2009 at 10:11am — 17 Comments

update on Alle rgy-?

Well, today in dialysis, his swelling in the face and neck did not get any better after three hours, the doctor was thinking of the possibility of another clot. He has one in his groin which we now now longer have access for lines as well as where his port is in the IJ. After dialysis, 4 hours, we went to ultrasound which shows everything is good, no changes, no new clots. The possibility of the reaction from the seizure med is ruled out from the liver labs. We still may be dealing with allergy… Continue

Added by Cheryl Biermann on October 26, 2009 at 8:47pm — 13 Comments

Conference slides

For anyone interested in the slides, the way my e-mail is working is that I need you to send a personal note to me over on my e-mail cbbulldog@gmail.com (Bill's idea of funny) so it will recognize that address. I'm still having issues so now I'm cutting and pasting, and I need Bill (computer geek) to fix it because someone's e-mail address is stuck in there and I can't cut or copy anyone elses. He will look at it tonight. Hopefully, by tomorrow everyone who has requested them will get them.… Continue

Added by Cheryl Biermann on October 26, 2009 at 8:30pm — 5 Comments

Hyde's clinic today

Hi there everybody - this should be short - most info was sent after the conference. We had our regular clinic today and it went OK. Guess we are just a little stressed b/c Hyde's weight and blood pressure are kind of giving us fits and having to switch some stuff up. Like I told our dr' this morning - we really need at least a couple more years and preferably the option to wait even longer than that if necessary before making any major decisions - but we'll see. Kind of back down to reality… Continue

Added by Phyllis Ann Talbot on October 26, 2009 at 8:22pm — 3 Comments

Maya's Story

Hi everyone,

To start thank you for such a warm welcome. I have just discovered this website and I am very excited that I can share my story with people who will understand as they are going through the same what we have to go through. Our now 5 year old daughter Maya developed aHUS just over a year ago. She had multiple plasma exchanges but they did not really bring any results. In August last year due to constant high blood pressure and fluid overload her heart dilated and she ended up… Continue

Added by Sylwia Antkowiak on October 23, 2009 at 4:45pm — 8 Comments

Conference and the continuing evaluation

Sorry I missed you all at the conference. I'm looking forward to seeing what did transpire and if there is any more good info to sink my teeth into. Last night as I was getting things ready for the next day and cleaning up the dishes I had a thought. My thoughts are usually way out there because I'm always trying to find an answer. Anyway I've read long ago that certain hormones can trigger responses from the body that should be coming from another system. So my thought was, can hormones or the… Continue

Added by Colette Ann Frysz on October 23, 2009 at 9:44am — 4 Comments

Update on Anna

Hi, everyone!!

We had wonderful trip and made lots of memories ;-) Anna met with Tinkerbell and got to go on every ride she wanted;-)

We had her labs and treatment done last Wednesday it went pretty well, her labs still great. We will be continue every 3 weeks and eventually got once a month until she is 12 (in May) or before if research will be available for kids. Our dr. was talking about get fistula again and i don't really like that idea specially if we will be switching to… Continue

Added by Svetlana Finley on October 23, 2009 at 9:31am — 3 Comments

labs for lil miss chloe

we went to the clinic yesterday and got labs drawn and guess what THEY WERE AWSOME....i really truly believe that god looks over my lil miss. her H&H are up alittle they are in the low normal range and her LDH went down and so did her creatnin even her albumin went up.. it was a good day yesterday for our family as we were on the fine line on the 7th and now she is doing better. i truly am thankful and i hope that we will be able to start solaris soon. thank you to all who offered info for… Continue

Added by lisa ann peterson on October 22, 2009 at 11:07am — 6 Comments

Devin's Update

Well, Dwaine and I got back home late Sunday night and Devin didn't miss us at all. Of course he was glad we were home, but he did not ask for us the entire weekend. He just loved playing with Grandma & Grandpa. Both he and my parents were completely worn out from playing all weekend. Devin's last appointment was October 8th and he looks great. His HCT & HGB were low (as they always are), but at least the numbers were closer to the low end of the normal range. However, his proteinuria… Continue

Added by Paula Blanchard Lamigo on October 22, 2009 at 10:59am — 7 Comments

lil miss chloe

iowa was great i was glad to get home last night.. chloe has labs tommarow and we will hopefully havea tenative plan for her after tommarow. her dad told me that she has been complaining of leg pains so when i gave her a bath i noticed her knees and shins looked bruised.. we will be able to know maybe why after i see her H&H tommarow. i was glad i went to iowa i learned so much and i met wonderful families that have the same daily struggles that we do.. i talked to chloes doc last night and… Continue

Added by lisa ann peterson on October 20, 2009 at 12:32pm — 2 Comments

Whew - what a week! Go hawkeyes!

Here's the update we posted on our carepage - hope everyone made it home safely and it was SOO great to meet so many of you in person!





Thanks to Michelle for the last update - Wed to Fri were a little hectic around here! Despite all of Hyde's best efforts to keep his parents close this weekend ;-) we were able to both make it to Iowa for the parent's conference. Sorry for the long update below - but lots to tell.



Hyde and Ruth did great and Grandma and Papa Talbot,… Continue

Added by Phyllis Ann Talbot on October 18, 2009 at 8:22pm — 3 Comments

aHUS conference

It was really great seeing and visiting with everyone in Iowa!

Added by Aida Billingsley on October 18, 2009 at 2:27pm — 1 Comment

Ready for Iowa

Bryan's numbers continue to look good.
Here's his latest:

Na 138, K 4.6, Cl 102, CO2 21, Ca 10.8, Albumin4.5, BUN 13, Creatinine 0.41, Hemoglobin 9.6.

I look forward to seeing everyone in Iowa tomorrow!

Melissa

Added by Melissa Hearn on October 15, 2009 at 10:09am — 2 Comments

Is There a 12 Step Program for People Who Compulsively Make "To Do" Lists?

Fresh out of high school, this college girl used to keep her "To Do" list neatly written down on attractive lined stationery - it was such a pleasure to cross items off !! It was a slippery slide down to the next level as a busy professional- a hastily scrawled list that had many items crossed off, but added to the bottom were even more sternly penciled reminders of tasks languishing from neglect. Working while attending graduate school, ahhh- then the lies began..... I'd write down already… Continue

Added by Linda Burke on October 12, 2009 at 12:00am — 2 Comments

update on evan

it is going on 4 weeks since evan has been home. it is also going on 4 weeks tomarrow since he has had any plasmapheresis. all of his lab values are back to normal. drs just told us that most of his genetic testing has come back and thats negative..bad news is there is still no cause..they seem to think he is in that small percentage that are idiopathic..they really are not sure what to think because every test has come back negative or within normal limits..they say that he has almost all of… Continue

Added by Cassie on October 11, 2009 at 10:57pm — 7 Comments

Brody's Update

Brody had a doctor’s appt on 10/8. It has been 40 days now since his last ffp infusion and his labs are staying stable.

RBC-4.56, HGB-12, Hematocrit-35.7, platelets-308, BUN-9, Creatinine-0.31, Haptoglobin and LDH both in normal ranges. We actually have to go back in on Monday to get more blood drawn to measure his C3 and C4 as they apparently didn't get enough on Thursday....ugh!

We had a long talk with one of Brody's docs about whether or not we should remove Brody's central line. I… Continue

Added by Amy Swarbrick on October 11, 2009 at 1:04am — 3 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...

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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.

 

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