Thanks for being honest in your recovery and all it has entailed the past 2 plus years after your transplant. My spouse had a kidney transplant in VT late Nov 2018 due to polycystic kidney disease he inherited from his mom. The frequent concern from the transplant team was 'rejection' and nothing much discussed that some people have many side effects from taking lifetime antirejection medications that lower a person's lifestyle. My spouse has not had one good day yet to feel good and have energy. He felt better prior to the transplant which was almost 6 yrs ago. I am the healthy spouse doing more and more due to his inability to do many things he used to do without a thought even when his GFR was 13% before transplant. All his many nephrologists know this . He already had a rejection (resolved) , then low hemoglobin for 8 months of me giving shots/resolved, CMV virus, resolved, and a few other issues the first 14 months after transplant. Then COVID-19 arrived. We still to this day live like it is March 2020 due to COVID-19 and the high risk of what most likely will happen if he gets it. I also live this way. I realize everyone makes a choice of how much risk are they taking in life to avoid losing the organ or the person dying or taking on more problems after COVID-19 is better. My brother in law recently died of long COVID-19 issues at age 64. So I know a bit about how the monoclonal drugs don't work that 'had' worked due to variant changes. I could write a book but won't , but we have not taken a trip for fun in six years now due to high COVID-19 to our timeshare, and due to how my spouse feels lousy everyday like he is taking chemo drugs 'again' like he did age 30 for Hodgekins lymphoma. WE both battle for the first time in our long married lives depression. THe vaccines for COVID-19 for him has not given him immunity. Friends and family have long gone stopped supported us emotionally over our choice to live in a bubble. All I know is when people think that an organ transplant will make things better , for some it might work; but our experiences it has not done so--the quality of life is not there. WE live 16 hrs from family and have no children. Just us. Most challenging time of our lives is now.
I sincerely wish you and your family all the best in how to push forward in making a good life.