Liver Transplant due to Hemochromatosis

I haven't because I was diagnosed at 21 before any damage was done (my ferritin level was only at about 600), but I've seen a few people post on here who are either waiting for a transplant or their spouse is. Hopefully they'll respond for you!

However, hemochromatosis does not go away. The liver transplant would occur because too much damage was done by the stored iron in order for the liver to properly function. That does not mean that the iron will simply stop being absorbed. You will still have iron overload no matter what so yes, you would still store extra iron.

I read that there have been cases where the iron stopped over loading when the patient recived a new liver.

http://www.medscape.com/viewarticle/518662_12

"The available evidence indicates that the fundamental metabolic abnormality in hemochromatosis is reversed by successful liver transplantation.[88-90] Patients do not reaccumulate iron if transplanted with a donor liver from an HFE-normal subject and the transferrin saturation and the serum ferritin levels remain normal in the absence of inflammation. This strongly suggests that the basic defect responsible for HFE-associated hemochromatosis lies within the liver."

 

I read that the iron overloading might be attributed to the liver itself, according to Medscape seminars in liver disease they sate,

"The available evidence indicates that the fundamental metabolic abnormality in hemochromatosis is reversed by successful liver transplantation.[88-90] Patients do not reaccumulate iron if transplanted with a donor liver from an HFE-normal subject and the transferrin saturation and the serum ferritin levels remain normal in the absence of inflammation. This strongly suggests that the basic defect responsible for HFE-associated hemochromatosis lies within the liver."

I just wanted to know if anyone who had a transplant found that to be the case.

I'm curious as well now, too.

I wonder if it's different depending on the type of iron overload you have. For instance, I have hereditary haemochromatosis, so the mutuation which cases my iron overload is in my genes, not just my liver.

It seems that a liver transplant 'cures' haemochromatosis, that is unless you get an undiagnosed haemochromatosis liver!!!!  In a normal liver the hepcidin works properly and does the job it is supposed to do and not allow the body to absorb iron.  Google that question if you want to get a proper medical answer.

Do you have to have a liver transplant?  So sorry if you do. You or the transplantee must be very ill.

I responded to your question before I saw all the other responses.  Then I read the Medscape article which confirms what I said.  Dr Lawrie Powell is a world leader in haemochromatosis research, and although the article was published in 2005, they are much more certain of the role that hepcidin plays in iron absorption now.  So what we need is something that makes our hepcidin increase and do the job it is supposed to do.

The one I know is Paul Cox, Australian film director, born in the Netherlands.  Successful transplant because of HH (although supposedly he was not diagnosed till they removed his liver).  Transplant at age 69, now going well.  Google him to find out more, although HH is not mentioned.  I do know personally that it was from HH.

I know this discussion is over a year old, but it came up under a Google search I did and I feel compelled to respond to the issue.  I had an unsuccessful liver transplant in 2011.  The graft was HBV+ and CMV+.  I now have ferritin levels (along with biliary disease) post-transplant that have gone as high as 659, are now at 358.  When the doctors were finally honest with me about the "sick" liver I was given, I was told that re-transplantation was only solution.  It was offered to me, then rescinded. My transplant surgeon was fired.  I did not know how damaging iron overload is to the liver. My GGT is 1105, ALT 288, AST 184 and ALP 479.  I feel horrible.  I would suggest that transplantation for any reason be carefully, carefully considered.

Angela, when you say stage 4, are you referring to stage 4 Liver Disease or stage 4 cirrhosis which would be decompensation