"Hi Vicki
You can contact him via Prof Tom Goodship's e mail on the aHUS.org.uk website.
Len
"
Vicki Provan's Discussions
Combined liver/kidney transplant in adults
7 Replies
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…Continue
Started this discussion. Last reply by Len Woodward Oct 16, 2011.
Vicki Provan's Page
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"How do I get in touch with Ian? He doesn't appear to be on this site."
Len Woodward replied to Vicki Provan's discussion Combined liver/kidney transplant in adults"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"
"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!
"
Len Woodward replied to Vicki Provan's discussion Combined liver/kidney transplant in adults"Vicki have you seen the video on the aHUS.org.uk website?
A patient who had a combined transplant tells his strory.
Len"
"Hey
I had my boys before all of this happened. Thank goodness! It's really hard work but I wouldn't be without them! I'm on peritoneal dialysis at the moment but it's not working very well. I'm…"
Linda Burke left a comment for Vicki Provan"Hi Vicki,
Have you connected with Stacey in Rochdale? I'm happy to say that her sweet little boy Riley is doing well post transplant (kidney/liver transplant)."
"Hi Lisa. I'm willing to do a survey for you. We need to see Soliris available ASAP in this country. It seems that we have pretty similar stories with aHUS. I had 4 different GPs tell me I had a virus before…"
"Thanks Grace. Are you hopeful for a new transplant with Soliris?"
"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…"
Cheryl Biermann left a comment for Vicki Provan"Hi Vicki!
Welcome to our interactive site, there are several other British people who are members as well, did you attend the recent activities in England? Dr. Goodship's people?
Please feel free to leave comments, ask questions, ect."
Profile Information
- Birthday
- April 10
- Do you have a friend or family member diagnosed with aHUS?
- No
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My membership request involves business interests as I seek additional aHUS information for business applications.
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Comment Wall (2 comments)
- At 12:52am on October 7, 2011, Linda Burke said…
Hi Vicki,
Have you connected with Stacey in Rochdale? I'm happy to say that her sweet little boy Riley is doing well post transplant (kidney/liver transplant).
- At 2:56pm on October 4, 2011, Cheryl Biermann said…
- Hi Vicki!
Welcome to our interactive site, there are several other British people who are members as well, did you attend the recent activities in England? Dr. Goodship's people?
Please feel free to leave comments, ask questions, ect.
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...
• • • • • • • • • • • •
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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