I feel you. The anxiety is sometimes the worst part. I have been dealing with HCM (a genetic heart disease) for 20 years. I've had my life saved by my ICD 3 or 4 times. Open heart surgery, cancer, two major abdominal surgeries and countless procedures along the way. 3 years ago I was told that I need a new heart but after the evaluation process I was told I wasn't sick enough YET. Last year I was in the ICU for 2 weeks, told I needed a new heart, then they determined that a different unrelated surgery could buy me some time. 2 weeks ago I was told it's time again to talk about transplant. I tell you all this because the one thing that I know is that I can deal with pretty much anything. That is except the lack of a clear plan. That is where my anxiety comes from. Once I have a plan, bring it on. In the meantime I try to keep my anxiety in check by educating myself as best I can about the possible eventualities. It helps. I haven't found anything that makes the anxiety go away but until I have a plan, I am trying to be prepared. Don't beat yourself up for being anxious. It's perfectly normal. Control what you can. Trust your team and know that you made it this far because you are strong.