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, 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 ?