The Foundation for Children with Atypical HUS

Combined liver/kidney transplant in adults

I was wondering whether anyone here has any experience of combined liver/kidney transplants in adults with aHUS?

I had my first appointment at the transplant assessment clinic this week and the surgeon suggested that I would be a prime candidate for combined transplantation, so has referred me on to another surgeon.

Soliris isn't yet available in the UK so I don't know how long I would have to wait to be able to receive a kidney transplant with Soiris therepy.

We're needing to find out as much information as we can just now so that we can try to make an informed decision about the way forward.

Thanks

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Replies to This Discussion

Permalink Reply by Grace on October 5, 2011 at 10:13pm
I can't help with the experience side, but I'll look into this a bit more. I know it's a big decision and best to be as informed as possible, especially if it is unfamiliar territory for the surgeon. I hope your next appointment goes well and do keep us posted.
Permalink Reply by Vicki Provan on October 6, 2011 at 8:56am
Thanks Grace.  Are you hopeful for a new transplant with Soliris?
Permalink Reply by Len Woodward on October 14, 2011 at 5:03am
Vicki have you seen the video on the aHUS.org.uk website?

A patient who had a combined transplant tells his strory.

Len

Vicki Provan said:
Thanks Grace.  Are you hopeful for a new transplant with Soliris?
Permalink Reply by Vicki Provan on October 14, 2011 at 6:47am

Thanks Len.  I've only got as far as the first video on that website, so I'll have to do a bit of catching up!

 

Permalink Reply by Len Woodward on October 14, 2011 at 7:19am
Hi Vicki

Perhaps via aHUSUK it may be possible for you and he to speak direct if you would like.

By the way aHUSUK is looking for a trustee/member for Scotland .Perhaps you could contact our secretary Ian Mackersie if you are interested.

Len

Vicki Provan said:

Thanks Len.  I've only got as far as the first video on that website, so I'll have to do a bit of catching up!

 

Permalink Reply by Vicki Provan on October 14, 2011 at 3:56pm
How do I get in touch with Ian?  He doesn't appear to be on this site.
Permalink Reply by Len Woodward on October 16, 2011 at 7:42am
Hi Vicki

You can contact him via Prof Tom Goodship's e mail on the aHUS.org.uk website.

Len



Vicki Provan said:
How do I get in touch with Ian?  He doesn't appear to be on this site.

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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.

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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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