The Foundation for Children with Atypical HUS

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 to regret my decision. We were later told that surgeons could not split the liver and were sent home.

On 21st November 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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Comment by Heather Still on December 22, 2010 at 8:53am
What a great and hopeful story.  Congratulations.
Comment by Joseph J Krug MD on December 21, 2010 at 5:13pm

Merry, Merry Christmas.

God be with your family and your son!!!!!!

Comment by Stacey on December 17, 2010 at 8:55am

Thankyou all xx

Comment by Svetlana Finley on December 17, 2010 at 12:34am

This is awesome Christmas gift for your family ;-) I am soo glad everything went well and he is doing well!!!

Comment by Linda Burke on December 16, 2010 at 10:15pm

Congratulations!  Best wishes for continued success and health.

Comment by Dana M Simone on December 16, 2010 at 9:52pm

Stacey, I am so happy for the relief and utter joy you are experiencing. This is a very special Christmas for Riley!

Comment by Kerri Grey on December 16, 2010 at 8:25pm

Stacey, Im so pleased that things are going well for your Son, so many reasons for you guys to all celebrate this christmas!!! I know its early days but enjoy the health of your beautiful little boy!!!

Comment by Cheryl Biermann on December 16, 2010 at 6:14pm

Stacey,

 

What a beautiful Christmas gift for you all!  God bless that young man's sacrifice and be with his family as they grapple with his loss.  The knowledge that someone else is thriving because of his sacrificial gift will be a tremendous help to them.  Have a wonderful Christmas together.

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 "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 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...

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