The Foundation for Children with Atypical HUS

Stacey
Stacey
  • Female
  • Rochdale
  • United Kingdom
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  • Sylwia Antkowiak
  • KaTrina Slaughter
  • Cheryl Biermann
  • Jaime Sheeder

Stacey's Discussions

Soliris or kidney/liver transplant
11 Replies

Please, please please help me guys. I am so confused. I have been told so many pro's and con's for the dual transplant and the same for Soliris. At the moment my son Riley's consultant is encouraging…Continue

Started this discussion. Last reply by Linda Burke Jun 16, 2010.

 

Stacey's Page

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Stacey left a comment for Linda Burke
Hi Linda. Thnks for the comment and thinking of us. i don't have a computer at the moment so hard to get on here. riley is thriving. He has just finished his first year of school and despite missing half of the year he is catching up well. I am…
Jul 19, 2011
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Linda Burke left a comment for Stacey
Hi Stacey, Thinking of you - trust all is well with Riley and that a good summer has begun for your family!
Jun 21, 2011
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Stacey and Lisa Barker are now friends Jun 18, 2011
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Svetlana Finley commented on Stacey's blog post 'Riley's progress'
Awesome updates!!!!!
Mar 15, 2011
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Zofia commented on Stacey's blog post 'Riley's progress'
So happy for You :)
Mar 13, 2011
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Linda Burke commented on Stacey's blog post 'Riley's progress'
Sounds terrific - so happy for your family !!!
Mar 13, 2011
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Cheryl Biermann commented on Stacey's blog post 'Riley's progress'
Woohoo!  Way to go Riley!  Go get em boy!  Stacey, you'll have to update some pictures of him soon!
Mar 12, 2011
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Riley's progress

Just thought I'd give you an update on Riley. He is now 3 and a half months post liver kidney transplant. He is doing absolutely brilliantly. Both organs are amazing and he is on the lowest tacrolimus level just 0.5mg twice a day!!He returned to school 3 weeks ago and is loving it. I will go back to work next week. I actually can't wait after 3 months off. Bet I change my mind after the 1st day back in with a load of cocky high school kids ha.It's like Riley has had a personality transplant…See More
Blog post by Stacey Mar 12, 2011
4 Comments
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Stacey left a comment for Linda Burke
Hi Linda. Riley is doing absolutely fantastic. Both organs are very very good and there is no complaint of function whatsoever. He is also on a very low dose of tacrolimus just 0.5mg twice a day. He went back to school 3 weeks ago and is loving it.…
Mar 12, 2011
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Linda Burke left a comment for Stacey
Hi Stacey, Hope that Riley is continuing his great progress post-transplant....would love an update when possible!
Feb 9, 2011
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Heather Still commented on Stacey's blog post 'Riley's success'
What a great and hopeful story.  Congratulations.
Dec 22, 2010
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Joseph J Krug MD commented on Stacey's blog post 'Riley's success'
Merry, Merry Christmas. God be with your family and your son!!!!!!
Dec 21, 2010
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Stacey commented on Stacey's blog post 'Riley's success'
Thankyou all xx
Dec 17, 2010
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Svetlana Finley commented on Stacey's blog post 'Riley's success'
This is awesome Christmas gift for your family ;-) I am soo glad everything went well and he is doing well!!!
Dec 17, 2010
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Linda Burke commented on Stacey's blog post 'Riley's success'
Congratulations!  Best wishes for continued success and health.
Dec 17, 2010
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Dana M Simone commented on Stacey's blog post 'Riley's success'
Stacey, I am so happy for the relief and utter joy you are experiencing. This is a very special Christmas for Riley!
Dec 17, 2010

Profile Information

Birthday
April 11
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)

Hi all. I just thought I would let you all know that after much deliberation and medical advice I decided to opt for the Liver/Kidney transplant for my son Riley. This was for many different reasons and now it seems I made the best choice.

On 17th August 2010 Riley was enlisted for transplant. On 1st October 2010 we had our first dreaded call. It was horrible, getting to the hospital, having dialysis and plasma exchange and being prepared for theatre. Everything was rushed and I was beginning to regret my decision. We were later told that surgeons could not split the liver and were sent home.

On 21st November 2010 we had our second call. This time things were a lot calmer and everything ran smoothly. Riley went to theatre at 5.50pm and at 10pm the transplant co-ordinator rang to say that everything was going perfectly and the surgeons were very happy. At 1.55am the following morning she rang again to say that Riley was ready to come out of theatre and be taken to Intensive care. Only 8 hours!!! I was shocked. Both grafts worked immediately and very well. He awoke at 10.40pm that night (22nd November) and was taken to the liver ward the following day. The first week was horrific. My baby boy was traumatised and not himself. However both organs were functioning really well. He made progress every day and was discharged from hospital on 9th December after just 2 and a half weeks!!!

Both Liver and Renal teams are very pleased with Riley's progress and he continues to thrive. You wouldn't believe that it hasn't even been 4 weeks yet. He is on top of the world. He can't wait to go back to school in February. Our lives have been turned around for the better. He can now eat and drink as he likes and we are really looking forward to a holiday next year.

Riley's donor was a 19 year old male who died from eningitis attacking his brain. He was a fitness fenatic who was very healthy and seemed a lovely young man. It is so sad that he lost his life and my son has started his new life. The surgoens commented on what lovely organs my son recieved and believe he will have no problems. I have written a letter to the boys family thanking them eternally.

I can't believe how quick everything has happened - just 13 weeks on the list and how successful everything was/is. I am completely content with my decision to go ahead with the combined transplant and the future now looks immensely bright.

Stacey xxx

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Stacey's Blog

Stacey

Riley's progress

Just thought I'd give you an update on Riley. He is now 3 and a half months post liver kidney transplant. He is doing absolutely brilliantly. Both organs are amazing and he is on the lowest tacrolimus level just 0.5mg twice a day!!

He returned to school 3 weeks ago and is loving it. I will go back to work next week. I actually can't wait after 3 months off. Bet I change my mind after the 1st day back in with a load of cocky high school kids ha.

It's like Riley has had a…

Continue

Posted on March 12, 2011 at 3:29pm — 4 Comments

Stacey

Riley's success

Hi all. I just thought I would let you all know that after much deliberation and medical advice I decided to opt for the Liver/Kidney transplant for my son Riley. This was for many different reasons and now it seems I made the best choice.

On 17th August Riley was enlisted for transplant. On 1st October we had our first dreaded call. It was horrible, getting to the hospital, having dialysis and plasma exchange and being prepared for theatre. Everything was rushed and I was beginning…

Continue

Posted on December 16, 2010 at 5:17pm — 8 Comments

Stacey

AHUS recurrence

Does anybody know if AHUS can reccur once your kidneys have already been damaged? My son doesn't seem to have been ill since he 1st went into hospital on June 22nd 2009 (has been on dialysis since). I just dnt know if it would show again and how it would appear as like I said his kidneys have been completely useless for 13 months x

Posted on August 2, 2010 at 1:06pm — 3 Comments

Stacey

New to the website

My son Riley aged 3 was diagnosed with HUS last June when he suddenly became very ill. He was immediately put on dialysis. Doctors thought that his kidney function would return and that it was e-coli. When this didn't happen i learnt how to dialysis and brought him home. We recieved test results just a month ago which confirmed Riley has atypical-HUS with complement factor H. Because Riley went straight to ESRF the only way forward for him is a combined liver-kidney transplant.… Continue

Posted on May 12, 2010 at 11:42am — 15 Comments

Comment Wall (18 comments)

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At 12:04am on June 21, 2011, Linda BurkeLinda Burke said…

Hi Stacey,

Thinking of you - trust all is well with Riley and that a good summer has begun for your family!

At 11:31pm on February 8, 2011, Linda BurkeLinda Burke said…

Hi Stacey,

Hope that Riley is continuing his great progress post-transplant....would love an update when possible!

At 10:59pm on September 15, 2010, Jaime SheederJaime Sheeder said…
I can relate, we have been there driving back and forth multiple days a week. I a glad he is feeling better and has a bit more energy. Skype sounds great! Let me know of a time that works great for you.

Jaime
At 4:19pm on September 10, 2010, Jaime SheederJaime Sheeder said…
Hi Stacey,

How are you doing? I am so sorry I have not been in touch with you. Things have been very busy. How is Riley getting along? Nick is good, just passed his 4 year transplant anniversary and is doing great. I would love to chat with you anytime you are available. Feel free to call me anytime that works for you, 916-248-1662. Take care of yourself and God Bless. Please let me know if there is anything I can do.

Jaime
At 8:38am on August 13, 2010, Colette Ann FryszColette Ann Frysz said…
Stacey,

Atypical HUS can attack any major organ in the body and the nervous system. Even though the kidneys are gone the disease can recurr and attack something else. We knew of a young lady that did not have atypical HUS but had typical HUS two times. The first time it impaired her kidney function but she regained that once it ran it's course. The second time it attacked her nervous system and it left her speech impaired and with limited had use..
At 1:59pm on June 17, 2010, Sylwia AntkowiakSylwia Antkowiak said…
Hi Stacey
Our case is similiar to yours. Maya lost her kidneys and is on pd for 11 hours a day. And yes the trials will start in the UK probably in the middle of this year, we are waiting for a green light. We do not have a live donor so will have to go on a waiting list that could take months but that's nothing as long as there is hope.Have you seen the link that Linda provided? Looks like there already had been successful kidney transplants with soliris. Personally I am very excited about it and cant wait for the trials to begin.
At 5:55pm on June 15, 2010, Sylwia AntkowiakSylwia Antkowiak said…
Hi Stacey,
I have just left a general comment about the trials of soliris in the UK in the forum
I forgot to ask Dr Rees her tel number but you can contact her through email ReesL@gosh.nhs.uk. When I asked her she said that at the moment she wouldn't be able to tell you much more namely that the trials will start mid year, great ormond hospital will be leading on these trials, from what I understand the other hospitals can take part as well as study centres. I guess it would be the best if your doctor could get in touch with Dr. Leesle Rees personally. And I think there is a good chance they may know each other. You know it's a small world and the doctors contstanlty share the information on the cases , new developments aetc. Hope that helps.
At 1:42am on June 15, 2010, Linda BurkeLinda Burke said…
Hi Stacy,
To answer the questions you posted for me....Skyler has been on Soliris since April 2009 (so, over a year), which was 12 days after he was first diagnosed with a factor H mutation of aHUS. Skyler's aHUS triggered just 10 months after his older brother Hunter died at age 5 and a half from a failed kidney/liver transplant, so we already a knowlegeable 'team' in place.
We stumbled upon Soliris quite by accident, and asked our docs to check it out - Skyler has not had a hint of any aHUS activity since that first dose of Soliris. Of course, it took about 6 to 8 weeks to 'mop up' all the damage caused by the initial onslaught though. We took Skyler off Soliris recently and are praying that his body will maintain this remission - if Skyler's labs show any sign of aHUS activity, we'll simply put Skyler back on Soliris. Hopefully, it will be years and years (if ever) before aHUS flares. Unfortunately, since Skyler was one of the first aHUS patients to try Soliris, we're kind of writing the book as we go, so to speak, but we do keep website members posted so folks know what we're doing for a Soliris protocol and how it's working out for Skyler. Kind of makes us our own little mini clinical trial and I report the findings here.
In regard to trials, Alexion isn't allowed to prerelease clinical trial info (US laws prevent it)- and so many people are anxious for anotice that enrollment will begin. The adult trials are all underway but the pediatric trials are supposed to begin enrollment sometime this summer. I'd love to know more specifics, but legally Alexion isn't allowed to release them. I'll let you know whenever I get any info, though!
At 10:49pm on June 13, 2010, Linda BurkeLinda Burke said…
Hi Stacey,
Alexion has a UK branch, and I put their contact info in your discussion thread for the Soliris or Kidney/Liver transplant conversation. Federal regulations in the States do not allow patients or families to contact Alexion because it still has to complete clinical trials for aHUS patients - we can only give our doctor's info during our intial call to Alexion (guess they start a contact file for our child's case), then Alexion contacts the treating physican to continue the discussion with the doctor. Riley's doctor would then weigh the info and his health status, and would discuss pros and cons with you.
There are some great facts in the article "how Soliris Works" and that link is in the Soliris Forum (click on the rxlist.com link). In the United States, parents can monitor upcoming clinical trial enrollments on www.clinicaltrials.gov, but we do not get advance notice of trials. Perhaps England has a similar website list? Clinical trials for Soliris use in pediatric aHUS patients in the US starts in mid-summer, the exact date has not yet been released. Wish we had some advance notice, but I guess that is not within the regulatory laws...
At 3:41pm on June 13, 2010, Sylwia AntkowiakSylwia Antkowiak said…
Hi Stacey,
Im going to the hospital tomorrow so I will definitely ask my doctor whether you could call her directly or send her an email. I keep you posted. Sylwia

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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!
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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 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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