I've been on this journey for several months now, and it seems like it isn't going to end anytime soon (at least not end well).
I have 7+ PAVMs - this was my introduction to the world of AVMs, and, to be honest, was a very gentle introduction compared to many of your stories, Like most of you, I have dealt with ill-informed doctors, unsympathetic employers, and confused family members. My plan was to have these embolized this week; however, I have had to postpone due to other complications.
I have 1 CAVM - After discovering the AVMs, I was encouraged to have an MRI to check for other problems - dynamic MRI scheduled directly after the first one . . .. now I have to decide how to deal with this. I know I'm not being logical now, but I am tempted to just leave it alone.
Pulmonary hypertension - the HHT specialist I have been working with ordered an bubble echo before I flew out for my embolization . . . guess what . . .I have pulmonary hypertension. Doesn't sound all that bad, but from what I've read, it's not good.
Three times I've been called a liar by friends because "your story keeps getting worse and worse" . . . . "you keep changing your story" . . . and to be honest, I "feel" okay, and you wouldn't know I have any problems by looking at me. My employer keeps pressing me for detailed records from my appointments . . . I don't really mind, but it's as if they don't believe me either.
I just feel so alone (except for you guys) and I can't really see any constructive steps to take. It is getting a little harder to go into work each day, and I am quickly loosing the few friends that I do have.
Any ideas from those who have gone through this stuff already?
Thank you SO much for your kindness!