1. < Transplants

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.

Interested in more discussions like this? Go to the Transplants Support Group.

charicen | @charicen | Jun 4, 2019
In reply to @contentandwell "Hi @charicen and let me also extend a late welcome to Connect to you. I had..." + (show)
@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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 4, 2019
In reply to @charicen "I live in a small town in northern Minnesota. All of my transplants were done through..." + (show)
@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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charicen | @charicen | Jun 5, 2019
In reply to @colleenyoung "@charicen, how did your follow-up appointments go yesterday?" + (show)
@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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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Oct 29, 2019

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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arqui02000 | @arqui02000 | Jun 9, 2023
In reply to @charicen "I had a second liver transplant in May 2007. My first was in April 1995. After..." + (show)
@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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despues de mi transplante de Higado 3 anos atras, en febrero 2 del 2022 me dijeron que el higado transplantado empezo con cirrosis, la razon no la saben aqui en LA mi transplante lo hicieron en Mayo Clinic Arizona. Lo que el hepatologo me sugiere es que tome las medicinas y dar tiempo hasta que el higado nos de senal para un nuevo transplante, mientras tanto, me dieron NADODOL beta bloqueante para reducir mi HIPERTENCION. Cual seria tu opinion al respecto de un segundo transplante?

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arqui02000 | @arqui02000 | Jun 9, 2023

sorry to hear this I had 3 years ago a Liver Transplant but is in a Cirrosis Process again. What is your suggestion on a second liver transplant? It is ok to do it or not? I read that most of the second transplanted person have few chance to survive is this is true?

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 9, 2023
In reply to @arqui02000 "sorry to hear this I had 3 years ago a Liver Transplant but is in a..." + (show)
@arqui02000

sorry to hear this I had 3 years ago a Liver Transplant but is in a Cirrosis Process again. What is your suggestion on a second liver transplant? It is ok to do it or not? I read that most of the second transplanted person have few chance to survive is this is true?

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@arqui02000, I want to invite a member to this discussion because she had her 2nd liver transplant 17 years ago. I expect that she will have some thoughts to share with you.

@jinja320 - I want to invite you to this discussion and to meet @arqui02000 who is progressing toward a 2nd liver transplant. I know that your experience will be beneficial in answering his questions that are posted in his post above this one.

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1 reply
arqui02000 | @arqui02000 | Jun 13, 2023
In reply to @rosemarya "@arqui02000, I want to invite a member to this discussion because she had her 2nd liver..." + (show)
@rosemarya

@arqui02000, I want to invite a member to this discussion because she had her 2nd liver transplant 17 years ago. I expect that she will have some thoughts to share with you.

@jinja320 - I want to invite you to this discussion and to meet @arqui02000 who is progressing toward a 2nd liver transplant. I know that your experience will be beneficial in answering his questions that are posted in his post above this one.

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please if any one has a second liver transplant reply this I appreciate any information I had since 3 years a first liver transplant

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