r/chd

Mine is a long story. As most CHD warriors’ of that age are. I have CC-TGA, ASD & VSD (surgically corrected), Pulmonary Stenosis, pulmonary conduit, pacemaker, mechanical valve stemming from endocarditis at age 20, and a cardiomem device. That’s the shortest I can make that, lol. In May of this year I had a cardiac cath (par for the course), during which is was found that my pulmonary conduit has narrowed to 80%. They don’t want to balloon or replace it because my right ventricle is too weak to handle the sudden uptick in pressure. So my only option is transplant at this point. I’m currently on a GLP-1 to try to get down in the optimal weight range for that and with hopes that it’ll actually help me feel better for at least a little bit before being evaluated for transplant. My question is about pre transplant stuff. Those that have been through it, what did you ask before or wish you had asked before? I’m trying to gather as much information as I can so I can ask questions at my cardiologist visit in a week. If you are in the same boat. What are you asking your cardiac team? Any and all suggestions are appreciated.