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Line Care
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Started this discussion. Last reply by Cheryl Biermann Dec 9, 2009.

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Amy Swarbrick's Page

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Amy Swarbrick and Shiv are now friends

Thursday

Amy Swarbrick commented on Amy Swarbrick's blog post Tummy Troubles

"I continue to give Brody the Chlorella (2 tablets 2x a day) and the diarrhea has not came back. Yay:)"

May 18

Linda Burke commented on Amy Swarbrick's blog post Tummy Troubles

"Hi Amy, Just checking in to see how Brody is doing now - hope it's still going great! Does he continue the Chlorella still or was it taken for just a short time? Hope all is well with your clan - spring must be fun with the…"

May 6

Svetlana Finley commented on Amy Swarbrick's blog post Tummy Troubles

"Thanks Amy for suggestion, BTW Amira say HI!!!"

May 5

Amy Swarbrick posted a blog post

Tummy Troubles

Brody had chronic diarrhea for a couple months now. It was to the point that the poor kid was having accidents in his pants at least once a day. He just turned four by the way and has been potty trained for awhile now. We had been to the doctor a couple times and did all the necessary blood tests related to any food allergies ect. Everything came back fine but we took him off dairy just in case. Several weeks went by and no improvement. The doctor's suggestion was to make a "diary" of when the…See More

May 1

3 Comments

Linda Burke commented on Amy Swarbrick's video

Brody's Journey

"Thanks for such a great video Amy - it was wonderful that you gave a shoot out for others to donate blood and plasma. Such a wonderful reminder to us all!"

Mar 15

Phyllis Ann Talbot commented on Amy Swarbrick's video

Brody's Journey

"Oh my GOODNESS Amy! He's gotten SO BIG!!!! Haven't seen any pictures of him in a while I guess!!! Too cool! Best wishes to you all!"

Mar 14

Amy Swarbrick posted a video

Brody's Journey

Brody's fight against Atypical HUS

Mar 4

2 Comments

Linda Burke left a comment for Amy Swarbrick

"LOVE the video you made, Amy! Thanks so much for creating such a meaningful slideshow. The message about donating blood and plasma were critical messaging piece that needed to be a focal point...so glad you drew attention to these…"

Mar 2

Amy Swarbrick left a comment for Crystal Ferreira

"Hi Crystal. Jared and I went to the 2009 conference and it was great. We would really like to go this year but at this time, it doesn't look like we will be able to. I hope you and your husband have a safe trip and get a lot out of the…"

Aug 5, 2011

Crystal Ferreira left a comment for Amy Swarbrick

"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"

Aug 3, 2011

NATALIE WALLACE and Amy Swarbrick are now friends

Jul 5, 2011

Amy Swarbrick left a comment for Trent Alvarez

"Hi Trent. I see that you are from west Sacramento. We are right up from you in El Dorado County. My son Brody sees a neurologist in Roseville."

Jul 2, 2011

Amy Swarbrick commented on Jill Ziegler's blog post Life is Good again!

"Reading this brought tears to my eyes. I have a five year old daughter too and I know what a joy it will be to just go and have fun with her! May you have a wonderful life with your family and new kidney:)"

Jul 2, 2011

Amy Swarbrick commented on Dana M Simone's blog post Jack has new kidney!

"Yay, how exciting! We will keep praying for his health and recovery."

Jun 14, 2011

Amy Swarbrick commented on Donna Kolp's blog post Milestones...

"Congratulations to Jonathan and your family. You have paved the road so many of us parents of young children with ahus still must travel down. It's an amazing feeling to know there are things like high school and college graduations in our…"

May 29, 2011

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)

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Amy Swarbrick's Videos

Brody's Journey

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Amy Swarbrick's Blog

Tummy Troubles

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Posted on May 1, 2012 at 11:25pm — 3 Comments

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…

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Posted 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…

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Posted 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…

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Posted 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…

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Posted on March 5, 2010 at 1:48am — 6 Comments

Comment Wall (12 comments)

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At 9:19pm on March 2, 2012, Linda Burke said…: LOVE the video you made, Amy! Thanks so much for creating such a meaningful slideshow. The message about donating blood and plasma were critical messaging piece that needed to be a focal point...so glad you drew attention to these and to organ donation, too.

I'd be honored it you'd also post it to the video section of this site's Home Page, too!

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!

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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 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.

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