I went in to see my cardiologist for our initial visit. I was pleased with my experience.
Dr. Oza had me explain my family history leading up to my trip to talk to him. He was very thorough, asking for copies of autopsy reports and anything else that I might mention while I told the story.
He then told me what his experience is with ARVD. He has about 10 patients out of his entire clinic that have ARVD. He said that this number is a very low percentage of his patients (which is good that he told me, since I have no baseline). He says that he probably has more than anyone else in the Boulder area because they are all referred to him. (This is comforting.)
He told me what approach he would like to take (which basically matched the recommendations from Johns Hopkins). He told me that he'd like me to do a bunch of tests and then evaluate them, using contacts from Tucson (another place where they specialize in the disease) to confirm the findings, whatever they may be. He also said that if I wasn't comfortable with that, that he would be happy to provide a referral to either Johns Hopkins or UofA in Tucson.
So, I have four appointments already set up (echo, stress test, 48-hour Holter monitor, follow-up visit with Dr. Oza) and two more to schedule (SAECG and cardiac MRI). I have to get everything done by 2/18, when I go back to see my doctor for a follow up visit.
I mentioned to him that once I started to discover that I'd need to undergo testing, I'd stopped going to the gym (I was going 5-6 times a week) and stopped drinking my one lousy cup of coffee that I enjoy each day. He smiled, told me to go ahead and drink my coffee. But not to go to the gym until we have figured all of this out. I knew that, but it still freaked me out to hear him say that. I just feel like I'd been taking my life into my hands with every trip to the gym and I never even knew it. Oh well, I guess that's life...it's more about what you don't know than what you do.