-
Amy Swarbrick
- Female
- El Dorado, CA
- United States
- Blog Posts (10)
- Discussions (9)
- Events
- Photos (49)
- Photo Albums (1)
- Videos
Amy Swarbrick's Discussions
Line Care
35 Replies
Started this discussion. Last reply by Cheryl Biermann Dec 9, 2009.
Amy Swarbrick's Page
Latest Activity
Profile Information
- Birthday
- August 28
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) - Protein(Gene)
Amy Swarbrick's Photos
Amy Swarbrick's Blog
Brody
I don't post much but I always check in to read others updates and always keep these kiddos in our prayers. Brody will be 3 years old on April 2nd! We are so excited and feel so blessed. He keeps us very busy and is a non-stop chatter box. Literally it is hard to get a word in when he is around and it is impossible to argue with him because he will never give in (I'm sure he didn't get that from me;).
It's hard to imagine life with him sick again but it's always a constant worry in…
ContinuePosted on March 22, 2011 at 1:27am — 8 Comments
Update on Brody
Hi everybody. It's been awhile since I've posted so I thought I'd give a quick update on Brody. It has been one year this month since his last plasma infusion. Is it possible to hold your breath for a whole year???
Currently we are getting his labs done every two months. Last labs showed his LDH slightly above the normal range. Everything else was good though, including his Haptoglobin and C5 assay. So???
Other than that Brody got his cast off two weeks ago finally. Which now I…
ContinuePosted on August 10, 2010 at 1:04am — 2 Comments
Update on Brody
Hi Everybody,
I don't get to check this wonderful site as much as I would like but I do think about you all and your children often. It's nice to know that even at our worst times there are others there to lend their support and who understand what is going on.
Brody is doing great. More independent everyday. I'm not sure if that is a good thing or not;) "I know how" "Me do it" I love it... The other day it was sad though when we went to get labs done and he was very concerned…
ContinuePosted on May 15, 2010 at 2:21am — 9 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…
ContinuePosted on March 5, 2010 at 1:48am — 6 Comments
Update on Brody Man
Posted on December 17, 2009 at 3:47am — 9 Comments
Comment Wall (11 comments)
- At 11:51am on August 3, 2011,
Crystal Ferreira said…
Hi Amy,
Been a while...will you be going to the conference in October? David and I are looking at flight options, looks like we may be leaving Friday evening. Hope all is well.
Crystal
- At 10:39am on March 6, 2010,
Svetlana Finley said…
- HI Amy!
Thanks for prayers;-)
Amira dosen't want Anna to start Soliris unless she gets another relapse. Praying that won't happen ;-)
Sveta
- At 11:22pm on December 9, 2009,
Linda Burke said… - Hi Amy!
Teething can be a real bug-a-boo for kids...keeping fingers crossed and saying a prayer that Brody keeps right on his same ole' positive track! Skyler went to the dentist yesterday and whilst cleaning the two new 'adult teeth' bottom from, 4 new loose teeth were discovered! Sheesh- the SkyGuy's not quite five and a half! I was told the timing would most likely be "All I want for EASTER is my two front teeth..." (everybody sing!). ;-D
- At 12:45pm on October 7, 2009,
Dallas said… - Amy, this is Dallas from the softball tournament. I joined this to learn more about Atypical HUS. Our 20-30 Club meets tonight and we will have final numbers from Swing for Brody. I will call Chris so we can set up a time to get together.
- At 5:55pm on September 21, 2009,
Grace said…
- Hi Amy! Candace and Brody are so cute and it looks like your garden is doing well. I don't have kids but I'm still single, so first things first.... I'm glad to hear Brody seems to be stable.
- At 7:27pm on September 15, 2009,
Jodi Kayler said… - We've been so thankful for the Soliris, it has changed our lives. But I also understand doc's apprehension as well. The unknown is scary. Coen is not Factor H and did not respond to plasma much The only thing that would keep him stable was Ivig. Everytime we spaced it out to 1-month intervals, he would slowly start relapsing. In 5 years, now is his first true remission with no signs of hemolysis. Also, many viruses would trigger the disease (sounds like that is common).
In 4 years with the line, we only had 2 line infections. Actually, Coen loved his line. It was a part of him and he did not want it removed--Weird. One of my biggest regrets is not being honest with him when he went into surgery to have it removed. For the 1st time, we did not tell him what was going on (thinking it would scare him). When he woke up and found out his line was gone, we was devastated and sooo mad that we didn't tell him. A year later, he still asks if he can get another one. Haha. From now on, I will always explain what's happening. I figure it is his right to know. As far as your decision, there is no right answer. Trust your gut and your doctors. It's all you can do! Have a great week.
- At 11:23am on September 7, 2009,
Cassie said… - thank you..my son evan is 11mnths and was just diagnosed on aug 26th of this year..he had just turned 10 months on the 24th of aug...he has been in the hospital for the last 7 weeks..he had no kidney function at all for the first 2 weeks then slowly he has gotten some function back..all of his tests come back negative the only ones we are waiting to hear back from are the adamst13 antibodi and the factor b...he hasnt had dialysis for almost 4wks now and still does plasmapheresis..they are trying to ween him off of it this week..he was doing it 3 to 4 times a week and so far all his labs are stable and hasnt had treatment since friday and is scheduled tomarrow for treatment..hopefully they can get his kidneys to do all this on their own and then they can just do plasma infusions
- At 8:04pm on July 5, 2009,
Linda Burke said…
- Hi Amy,
Looks like there are quite a few people interested in the Line Care topic! To make it easier for people to find this vital info quickly, would you consider opening a Forum? Hope Body's doing well and that you had a little time to enjoy the 4th!
- At 3:28pm on June 16, 2009,
Christy said… - Awwww..your little ones are such cuties!
- At 12:55pm on June 11, 2009,
Linda Burke said…
- Hi Amy,
Welcome to the newly launched interactive website for families to share information and experiences. Hope you find it helpful and we look forward to learning about your family's journey. Linda
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Did you know...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by 
.
