Antibody Mediated Rejection-Liver, anyone else??

Posted by orchidninja @orchidninja, Aug 29, 2018

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.

@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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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.

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@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..

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@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.

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@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.

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@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?

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@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..

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@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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@rosemarya

@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?

Jump to this post

I was going only annually for followups, however, in December 2017 they found a questionable spot on the transplanted liver that after a CT scan and contrast-enhanced biopsy ended up being a hepatocellular carcinoma (HCC). Since that time I have gone back at more frequent intervals to make sure that it is not recurring and the area where it was removed with ablation in March of 2018 is remaining stable. I went back at 3-month intervals for the first 9 months and am now at 6-month intervals. I am returning for appointments this Monday, June 3 for the first of my 6-month interval followups. In addition, I am hoping to get in to see Orthopedics then instead of in July since I live 300 miles away. I ended up with a hemarthrosis (bleeding/blood clot) in my right knee. After all the years of prednisone I have basically no cartilage on one half of my right knee and about half of the cartilage left on the other side of said knee. Oh well, just another part of life for me. All there is to do is to keep moving forward and deal with the cards that we have been dealt.

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@charicen

I was going only annually for followups, however, in December 2017 they found a questionable spot on the transplanted liver that after a CT scan and contrast-enhanced biopsy ended up being a hepatocellular carcinoma (HCC). Since that time I have gone back at more frequent intervals to make sure that it is not recurring and the area where it was removed with ablation in March of 2018 is remaining stable. I went back at 3-month intervals for the first 9 months and am now at 6-month intervals. I am returning for appointments this Monday, June 3 for the first of my 6-month interval followups. In addition, I am hoping to get in to see Orthopedics then instead of in July since I live 300 miles away. I ended up with a hemarthrosis (bleeding/blood clot) in my right knee. After all the years of prednisone I have basically no cartilage on one half of my right knee and about half of the cartilage left on the other side of said knee. Oh well, just another part of life for me. All there is to do is to keep moving forward and deal with the cards that we have been dealt.

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@charicen, You have a admirable attitude. I want to thank you for sharing it here on Connect where it is an inspiration to all of us.
What inspires you to keep on moving forward and dealing with the barriere that you are facing? Where do you find your strength?

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@rosemarya

@charicen, You have a admirable attitude. I want to thank you for sharing it here on Connect where it is an inspiration to all of us.
What inspires you to keep on moving forward and dealing with the barriere that you are facing? Where do you find your strength?

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I have an awesome support system in my family and friends. They have been with me throughout this journey from the beginning and continue to be a source of support to me no matter what the next obstacle that gets thrown into my path may be. When I had my first transplant in 1995 I had a group of coworkers that sent me a banner that said "It's about damn time" and it was printed on YELLOW paper. They also threatened to send me Chutes and Ladders and Candyland as a joke to keep me entertained. My supervisor at the time sent me a little box that had four little fake onions in it with a card that read "You got the liver, so here's the onions."

As long as I maintain my sense of humor about the situation I can overcome anything. You should never lose your sense of humor. It is an important part of keeping up your spirits.

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Hi @charicen and let me also extend a late welcome to Connect to you. I had a liver transplant in September, 2016 and I have been very fortunate in having no problems (except some little pesky ones from the darned immunosuppressants) since then. I did not see mention of where you are located or where you had your transplant, but I am surprised that your team has not been more supportive. I had my transplant at Mass General and I cannot say enough good about them, and from what I have heard most transplant departments sound like they are very special in their treatment of patients. You have cirrhosis now, after a transplant? My transplant was due to non-alcoholic cirrhosis and my new liver is doing great. I too had HCC prior to transplant, removed by ablation, but I do go for yearly MRIs to make sure it is not recurring anywhere. It was right on the edge of my liver and when they dissected my liver they discovered there was still a bit of a lesion there. Prednisone caused affected your cartilage? I never realized that was a possible side-effect. I take a very small dosage of it daily.

I love your attitude, I firmly believe that attitude can make a huge difference, that we have to stay positive. Plus, even if having a positive attitude does not help, it at least makes your life more pleasant.

Your coworkers sound great. You are lucky to have such a great group of people to work with.
Keep that sense of humor up and you will overcome.
JK

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@contentandwell

Hi @charicen and let me also extend a late welcome to Connect to you. I had a liver transplant in September, 2016 and I have been very fortunate in having no problems (except some little pesky ones from the darned immunosuppressants) since then. I did not see mention of where you are located or where you had your transplant, but I am surprised that your team has not been more supportive. I had my transplant at Mass General and I cannot say enough good about them, and from what I have heard most transplant departments sound like they are very special in their treatment of patients. You have cirrhosis now, after a transplant? My transplant was due to non-alcoholic cirrhosis and my new liver is doing great. I too had HCC prior to transplant, removed by ablation, but I do go for yearly MRIs to make sure it is not recurring anywhere. It was right on the edge of my liver and when they dissected my liver they discovered there was still a bit of a lesion there. Prednisone caused affected your cartilage? I never realized that was a possible side-effect. I take a very small dosage of it daily.

I love your attitude, I firmly believe that attitude can make a huge difference, that we have to stay positive. Plus, even if having a positive attitude does not help, it at least makes your life more pleasant.

Your coworkers sound great. You are lucky to have such a great group of people to work with.
Keep that sense of humor up and you will overcome.
JK

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I live in a small town in northern Minnesota. All of my transplants were done through Mayo in Rochester. The team has been very supportive throughout the years. I just happened to be one of the people that if there is a low percentage of it happening to someone, then that someone is usually me. I don't ever let it get to me. I have my favorites among the staff of the transplant clinics though and try my best to see them on a continuous basis so that I maintain continuity of care since that seems to be the best way to get good results rather than just drawing who happens to be in clinic at the time. Continuity of care is important for patients and especially those that have a more complex case.

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@charicen

I live in a small town in northern Minnesota. All of my transplants were done through Mayo in Rochester. The team has been very supportive throughout the years. I just happened to be one of the people that if there is a low percentage of it happening to someone, then that someone is usually me. I don't ever let it get to me. I have my favorites among the staff of the transplant clinics though and try my best to see them on a continuous basis so that I maintain continuity of care since that seems to be the best way to get good results rather than just drawing who happens to be in clinic at the time. Continuity of care is important for patients and especially those that have a more complex case.

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@charicen, how did your follow-up appointments go yesterday?

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@colleenyoung

@charicen, how did your follow-up appointments go yesterday?

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They still did not have the ultrasound report ready when we saw the doctor on Monday afternoon. Still waiting for either a message on the portal or a phone call if it is something to be concerned about. I am going with the no news is good news option at this point. I will be seeing Orthopedics on July 10 for my knee issues. They did have the x-ray report available and it showed diffuse degenerative arthritis in both of my knees, which was nothing really new that I didn't already know. I am most likely going to be having a knee replacement in the near future. After 30+ years of prednisone it is not a big surprise that I have significant arthritis. It's all about the trade-offs that we make as patients when it comes to our survival. I'll just be more like a cross between the bride of Frankenstein and the Bionic Woman by the time I'm done. LOL!

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I recently came upon this information about sensitized transplant patients. And I learned that around 30% of transplant patients are sensitized. Here is what Dr. Andrew Bentall, a Mayo Clinic nephrologist, explains what can be done to help sensitized transplant patients who can be difficult to match with organ donors.
http://bit.ly/2N4gXIg
@orchidninja, @charicen, If you get this message, Would you be comfortable to share your experience?

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