Rosemary @rosemarya kindly suggested I re-post this question here to reach more heart transplant recipients. (I initially posted in the general "Transplant" thread)...
I'm approaching my 4yr heart transplant anniversary at the end of July. I've had chronic antibody-mediated rejection (AMR) most of that time, necessitating extra treatments. I'm incredibly grateful and so pleased to still be here, yet it's been a struggle as well, especially because I'm very sensitive to meds and experience a lot of side effects.
I'd like to connect with others who have had or currently have AMR. I'm just beginning to accept that this will most likely be something that stays with me over time.
Also, my doctor is going to switch my meds from the calcineurin inhibitor, Cyclosporine (which seems to be causing significant neuropathy and neuro issues) to Belatacept, a monoclonal antibody monthly infusion.
Apparently, it's been used for years in kidney recipients and more recently in heart. Would love to hear anyone's experience if they have taken belatacept.
Thank you for anything you care to share!
~Nancy