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orchidninja
@orchidninja

Posts: 2
Joined: Aug 30, 2018

Antibody Mediated Rejection-Liver, anyone else??

Posted by @orchidninja, Wed, Aug 29 9:40pm

Hi everyone, I've previously had a liver transplant, 2 actually, each for different reasons.

I've just been told I'm in late stage chronic rejection…and my liver biopsy sample indicates stage 3/4 cirrhosis…and I need a third liver transplant:(
I have something called Antibody Mediated Rejection that is very rare in liver transplants and I'm trying to find anyone else who has experienced this…please let me know if you have, I'd love to chat.

This happens in other organs, but it's extremely rare in livers.

REPLY

@orchidninja, I would like to welcome you to Mayo Connect. Speaking as a transplant recipient, I am happy to meet you. I am glad that you have joined this discussion and I hope that you will be able to meet someone who has some experience with this condition.
I am, however, unfamiliar with Antibody Mediated Rejection or any rejection specifics at this time. I have lived with my transplantd liver and kidney for 9+ years.

With your current level of chronic rejection, are you on a transplnt list? Will this rejection episode cause any complications as you move toward a transplant?

Liked by orchidninja

I had a second liver transplant in May 2007. My first was in April 1995. After my second liver transplant, I experienced antibody-mediated rejection in late 2008/early 2009. I underwent plasmapheresis and IV Ig therapy at Mayo Rochester, which was experimental at the time for liver transplant recipients. Upon completion of this treatment, I have been able to maintain without rejection. I do have cirrhosis but have not been told that I would need another liver transplant. I did undergo a living-related donor kidney transplant in November 2012 as a result of the antirejection meds.

@rosemarya

@orchidninja, I would like to welcome you to Mayo Connect. Speaking as a transplant recipient, I am happy to meet you. I am glad that you have joined this discussion and I hope that you will be able to meet someone who has some experience with this condition.
I am, however, unfamiliar with Antibody Mediated Rejection or any rejection specifics at this time. I have lived with my transplantd liver and kidney for 9+ years.

With your current level of chronic rejection, are you on a transplnt list? Will this rejection episode cause any complications as you move toward a transplant?

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Hi Rosemary, thanks for the warm welcome:)
AMR is a fairly recent discovery in the venue of liver transplants. It's been present in other organs and is commonly seen, but it doesn't typically occur in livers; if it does it's seen in about 1-1.5% of all liver transplants from what I've read in the medical literature.

There are acute and chronic versions of AMR, and mine is the chronic version. It was just discovered in April at my annual appointment of my second liver transplant, and is believed to have been ongoing for the entire 11 1/2 years that I've had this liver. It seems as though I'm just about to be listed, but they're just looking at the antibody levels now. I do need a re-transplant, but it is all about the antibodies.

There are treatments they can do, but I have some specific immune system subtypes that can make it a bit more complicated for me.

From what I understand there are specific antibodies that can cause complications for post transplant and preclude me from re-transplant, and I honestly wouldn't want to accept a third if it would destroy a donor liver that somebody else could use. This is why I would love to talk to somebody else who's experienced this.

I've been reading every study I can find to learn what I can, I'm not getting much from my transplant team unfortunatey:( I adore them, but they're very busy and I don't know that they've dealt with this much..

@orchidninja Wow you have been through so much! I admire your strength and tenacity. I hope that you can get over all these obstacles soon. It's hard enough waiting for one transplant. You will get lots of support here.

@charicen

I had a second liver transplant in May 2007. My first was in April 1995. After my second liver transplant, I experienced antibody-mediated rejection in late 2008/early 2009. I underwent plasmapheresis and IV Ig therapy at Mayo Rochester, which was experimental at the time for liver transplant recipients. Upon completion of this treatment, I have been able to maintain without rejection. I do have cirrhosis but have not been told that I would need another liver transplant. I did undergo a living-related donor kidney transplant in November 2012 as a result of the antirejection meds.

Jump to this post

@charicen, I want to send you a belated, yet a heartfelt "Welcome" to Connect. I have recently spent some time off-line traveling and I am trying to catch up.
I, too, have transplanted liver and kidney, but my circumstances are different from yours. I congratulate you on your longevity and your (in my opinion) admirable strength and determination in dealing with all that you must have experienced. People like you, are an inspiration for me as I continue to move forward with my donated organs.
I am completely unfamiliar with antibiody mediated rejection. However, I did see some information in Mayo's Research summaries when i looked. I am happy for you that you are maintaining without rejection.
How often do you go to Mayo for follow-ups? Does the transplanted kidney make things any more complicated?

@orchidninja

Hi Rosemary, thanks for the warm welcome:)
AMR is a fairly recent discovery in the venue of liver transplants. It's been present in other organs and is commonly seen, but it doesn't typically occur in livers; if it does it's seen in about 1-1.5% of all liver transplants from what I've read in the medical literature.

There are acute and chronic versions of AMR, and mine is the chronic version. It was just discovered in April at my annual appointment of my second liver transplant, and is believed to have been ongoing for the entire 11 1/2 years that I've had this liver. It seems as though I'm just about to be listed, but they're just looking at the antibody levels now. I do need a re-transplant, but it is all about the antibodies.

There are treatments they can do, but I have some specific immune system subtypes that can make it a bit more complicated for me.

From what I understand there are specific antibodies that can cause complications for post transplant and preclude me from re-transplant, and I honestly wouldn't want to accept a third if it would destroy a donor liver that somebody else could use. This is why I would love to talk to somebody else who's experienced this.

I've been reading every study I can find to learn what I can, I'm not getting much from my transplant team unfortunatey:( I adore them, but they're very busy and I don't know that they've dealt with this much..

Jump to this post

@orchidninja, I apologize for my delayed response, but I have been doing some traveling, and have been off-line.
What you have been through, is beyond my own experience. I thank you for the information that you have provided! I never knew this before.

I admire your pro activity in studying and learning as much as you can about your condition. I am sorry to hear that you feel that you are not getting much support from your own transplant team.
Have you considered getting a second opinion? If you want to talk to someone at Mayo here is the information link: https://www.mayoclinic.org/appointments

Have you met @charicen, who recently posted a response ?

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