Advice for a young HLHS

hi, im 22f with Hypoplastic left heart syndrome. I've had all 3 of the surgeries (Norwood, Glenn and Fontan) last time I have went to those important yearly appointments was I'm guessing when I was 17 and when I was 18 I just bounced from my mom's house to be with my grandparents and aunt, got into college, got a job and then dropped out of college.

I didn't really know what i was doing i was lost, scared of life and just holding onto to my aunt's word whatever she said i did and then went to my now fiancé’s home (which was against her word but for the better of my life i think), we've been together 3 years now and now i have a job i feel dedicated to and have decent insurance, thinking and worrying about my health now as in 5 years i haven't had a checkup cause my place is all the way in Dallas, no doctors in my small town want to continue with me and tell me they aren't qualified (they whisper as they google my condition 💀😄), I'll be getting a car soon....around next month, I am going to start therapy soon as well to cry out my health anxiety haha, I'm very sensitive. I want to understand a lot about myself, ik im more prone to mental deficiencies, low iq and things like that as having half a heart, being born with those few seconds/minutes of oxygen missing i have no clue, my mom always tried to explain it to me the best she could and she did say those could be possible.

They want me to continue with my yearly checkup, have a stress test and then they want to do a heart catheter and as I was speaking to the lady she said that they would put me under and everything but then they said that I would have to find a hotel nearby for before and after and that....terrifies me. I thought I would stay in the hospital, I'm terrified to do things for myself, I just need guidance from people who know because all the people around me can just guess what's going and be like well schedule but I don't know what to expect and ik I want to do something, ik how important it is cause I recognize the system in me are meant to be checked and not left alone.

I also feel like I have been sitting on my ass about this as a young adult cause I've been scared but has anyone been told to stay in a hotel and as a kid I did get a catheter and in the hospital I was in the shower and had to take off the bandaging that was placed near my groin area, worst pain ever and I'm bawling just thinking about it, having to rip off that bandaging was so... man 😰😭

I would greatly appreciate any advice, I dont feel like I'm trying my best with my health and would like guidance 🙏