Got call for liver/kidney transplant! 6 days post op and Syd is doing well. Use Soliris protocol. Fingers crossed.
-
KaTrina Slaughter
- Female
- Jacksonville, FL
- United States
- Blog Posts (1)
- Discussions (18)
- Events
- Photos (1)
- Photo Albums
- Videos
KaTrina Slaughter's Discussions
Treatment
27 Replies
Started this discussion. Last reply by Cheryl Biermann Nov 1, 2010.
Dual Transplant - Kidney/Liver
23 Replies
Started this discussion. Last reply by Stacey Jun 13, 2010.
KaTrina Slaughter's Page
Latest Activity
Linda Burke left a comment for KaTrina Slaughter
TRANSPLANT....Such an exciting and nerve-wracking time....how is Syd doing today? We'd love to know your thoughts and concerns - maybe you'd consider input with a blog on the Home Page here when time allows. Sending y'all…
KaTrina Slaughter left a comment for Tristin Alan
Hi Tristin,
Sorry it is taking so long to respond. But finally getting a chance to breathe. I was driving Syd up to Lucille Packard (which is about 1.5 hrs away from where we live) for Hemo. We now only have to go once a week to…
Finally back on PD!! Not a fan of Hemo. :) Now just waiting for transplant call.
Status posted by KaTrina Slaughter
Gene Billingsley commented on KaTrina Slaughter's blog post 'Update - November 2011'
KaTrina - have you looked into doing home hemo dialysis? We did overnight PD for our son for many years, then complications forced us back to hemo. We started looking for a home hemo solution and found one from a company called NxStage. If…
Tristin Alan commented on KaTrina Slaughter's blog post 'Update - November 2011'
Hi KaTrina,
I enjoy reading your blog. I am also in Northern California. I am searching for good dialysis centers. Any recommendations? Thanks. Have you been able to get back to PD or still on hemo? Happy New Year!
Cheryl Biermann commented on KaTrina Slaughter's blog post 'Update - November 2011'
Maybe they can adjust her time to the late afternoon then? Nathan's had to be in the am because I had to be freed up those hours. Some of our kiddos came in around 12, after a four hour session, they went home. It…
Jessica Olivia Frysz commented on KaTrina Slaughter's blog post 'Update - November 2011'
Katrina:
Sorry to hear that :( But, at least it is only 1 day a week instead of 3 days a week. I drive to and from my dialysis center 3 days a week, but I don't have to go 2 hours away.
KaTrina Slaughter commented on KaTrina Slaughter's blog post 'Update - November 2011'
We are not adjusting to Hemo. On hemo days she is all thrown off cause she feels good late in the evening, when we are all ready to go to bed. So we are up with her all night. Then the next day her energy level is so low, she sleeps all…
Cheryl Biermann commented on KaTrina Slaughter's blog post 'Update - November 2011'
Eww, those funguses stink. That's what got Nathan's tube too. How's she adjusting to hemo?
Update - November 2011
Hi!!Haven't been on in a while. Still trying to adjust to California and Sydney got really sick in October. First with Pneumonia and then a fungal infection that caused us to give up our beloved PD and swtich to Hemo. Not a fan of driving 2 hours one way, 3 days a week.Hoping for a better Holiday.See More
Blog post by KaTrina Slaughter
So October has been rough. Had to give up PD and switch to Hemo dialysis. Not a fan.
Status posted by KaTrina Slaughter
Safely made the trip from Virginia to Monterey. Turned it into a little family vacation. :)
Status posted by KaTrina Slaughter
Cheryl Biermann replied to KaTrina Slaughter's discussion 'Treatment'
Ka Trina,
Also, what our doctors are having us do is to calculate the meds/equipment and supplies covered but received at home, so we get an accurate cost of dialysis vs transplant and Eculizumab. For us, this included growth hormone, feeding…
Paula Blanchard Lamigo replied to KaTrina Slaughter's discussion 'Treatment'
Don't be afraid of a rejection from Tricare (or Triwest) as that region's insurance will be. If a letter from your physician states the necessity & the validity & not to mention, the cost effectiveness of the kidney transplant +…
Profile Information
- Birthday
- June 19
- 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:
- Interested in Undergoing Genetic Testing, Factor H (CFH) /Protein (Gene)
Sydney
Hi,
Sydney is 3 years old. She was diagnosed with HUS when she was 10 months old on February 22, 2007. After a trip to ICU, we began PD dialysis. She was in ICU for about a month. Got out a few days before she turned 1. Our first trip to the hospital was just short of 4 months. Dad is in the Navy, so we then transferred to Jacksonville. On Sept 10, 2007 she had a relapse of HUS and went without oxygen for about 15 minutes. This caused severe brain damage. After this relapse she was officially diagnosed with aHUS and has a Factor H mutation.
2007 is mostly a blurr of hospital stays. We didn't make any social plans, as they always resulted in a trip to the hosptial. :)
Things have quieted down a bit. (Knock on wood, and shoot me now for saying anything).
She gets weekly Fresh Frozen Plasma transfusions (FFP) and lots of therapy. The only days we are not in somebody's hospital are pretty much the weekends. :)
She has a healthy big brother that is 7.
We are currently on the kidney transplant list and scared of what that means. But would love a chance at a "normal" life.
The few times we have been out after dark it has seemed weird. We currently do PD dialysis at home for 11.5 hours. But are learning to work with what we got. :)
Each day is precious and I cherish every minute I have with her, because I realize that it can be taken away at any time.
Look forward to reading about more children. The fact that I have seen kids on here that are 6 and 10 is very encouraging to me.
Sydney is 3 years old. She was diagnosed with HUS when she was 10 months old on February 22, 2007. After a trip to ICU, we began PD dialysis. She was in ICU for about a month. Got out a few days before she turned 1. Our first trip to the hospital was just short of 4 months. Dad is in the Navy, so we then transferred to Jacksonville. On Sept 10, 2007 she had a relapse of HUS and went without oxygen for about 15 minutes. This caused severe brain damage. After this relapse she was officially diagnosed with aHUS and has a Factor H mutation.
2007 is mostly a blurr of hospital stays. We didn't make any social plans, as they always resulted in a trip to the hosptial. :)
Things have quieted down a bit. (Knock on wood, and shoot me now for saying anything).
She gets weekly Fresh Frozen Plasma transfusions (FFP) and lots of therapy. The only days we are not in somebody's hospital are pretty much the weekends. :)
She has a healthy big brother that is 7.
We are currently on the kidney transplant list and scared of what that means. But would love a chance at a "normal" life.
The few times we have been out after dark it has seemed weird. We currently do PD dialysis at home for 11.5 hours. But are learning to work with what we got. :)
Each day is precious and I cherish every minute I have with her, because I realize that it can be taken away at any time.
Look forward to reading about more children. The fact that I have seen kids on here that are 6 and 10 is very encouraging to me.
KaTrina Slaughter's Photos
KaTrina Slaughter's Blog
Update - November 2011
Hi!!
Haven't been on in a while. Still trying to adjust to California and Sydney got really sick in October. First with Pneumonia and then a fungal infection that caused us to give up our beloved PD and swtich to Hemo. Not a fan of driving 2 hours one way, 3 days a week.
Hoping for a better Holiday.
Posted on November 28, 2011 at 5:43pm — 6 Comments
Comment Wall (25 comments)
- At 1:28pm on February 8, 2012,
Linda Burke said…
TRANSPLANT....Such an exciting and nerve-wracking time....how is Syd doing today? We'd love to know your thoughts and concerns - maybe you'd consider input with a blog on the Home Page here when time allows. Sending y'all a hug and best wishes, Linda
- At 3:43pm on September 29, 2010,
Stacey said… - Hi Katrina. How are things going? Any closer to a decision yet? Thinking of Syd x
- At 8:06pm on September 22, 2010,
Joy Lewis O'Brien said… - Several good hospitals here in the Boston area, including a couple with experience with pediatric aHUS! Where in MA are you thinking of relocating?
- At 4:23pm on September 10, 2010,
Jaime Sheeder said… - Hi there! How are things going for you? I was thinking about you all and wanted to let you know that I was thinking about. Take care and God Bless.
- At 11:10pm on June 15, 2010,
Linda Burke said…
- Hi KaTrina,
Thought you'd like to see some interesting info from the International Conference on HUS, MPGN, and PNH held in Innsbruck, Austria (ended today 6/15/10). I posted it in Stacey's "Soliris or Kidney/Liver Transplant" and in my "Soliris" Forum, but I wanted to alert you the posted info. If new case studies or journal articles on dual organ transplant come to my attention, I'll forward them to you and Stacey.
The International Conference for HUS, MPGN, and PNH met from June 13th to June 15th, 2010 in Innsbruck Austria and featured presentations from many top aHUS researchers from around the globe. Alexion Pharmaceuticals has issued a news release outlining conference presentations, which included 6 cases of aHUS renal transplants that were supported by Soliris therapy. If you are pondering a the possibility of a renal transplant supported by Soliris to prevent a recurrance of aHUS, these case studies would provide vital information to consider. http://www.alxn.com/News/article.aspx?relid=479502
- At 5:51pm on January 29, 2010,
Cheryl Biermann said…
- Hi, just checking in. Hope all is well, been thinking about you all.
- At 2:35pm on December 30, 2009,
KaTrina Slaughter said…
- Hi Everyone,
We are good. We had a great Christmas and ready to bring in the New Year. We really haven't talked about the transplant much, just wanted to get through the holidays. But as the New Year approaches, we will talk more and make some decisions.
Happy New Year.
- At 12:31pm on December 30, 2009,
Cheryl Biermann said…
- Hi KaTrina, I've given the St. Louis Mom, your name and she's happy to talk to you, just hoping you got the info. on the message in your inbox with her information...also, I'm up in the Ronald McDonald room at our hospital right now on the computer and was looking through the Ronald McDonald book of all the different houses here in the area, right now there are two completed ones - 4381 W. Pine St., St. Louis, MO. 314-531-6601, fax 314-531-6353 &3450 Park Ave. St. Louis, MO. 314-733-1100 Fax 314-773-2053...the first location has 22 bedrooms and the second has 11 bedrooms and one apartment.
- At 11:38am on December 30, 2009,
lisa ann peterson said… - i was just wondering how things were going for you guys....happy almost new year
- At 7:26pm on December 18, 2009,
lisa ann peterson said…
- in the settings you can get a music player..and add music from your computer..the relapses made me more and more scared each time but i think i have mellowed out since i came to realization that god gave me a gift by giving me my lil girl and my plan and his plan do not always match up but she has a purpose because she has survived some things that doctors said she shouldnt have so i feel that AHUS kids are the toughest lil fighters in the world and god gives them strong parents. lil miss had so much fun on her wish trip i cried so much because i had a realization on why we were there.. i will keep you guys in my prayers.... i think that this website is the best thing that could have happened for us...giving you my best during the holidays..
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...
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 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...
• • • • • • • • • • • •
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 
.
