I saw a new cardiac specialist this week. He's going to dig a little deeper into the positive Brugada test I had during my electrophysiology study last winter. He was very friendly, very open, and seemed very understanding of a lot of the emotional issues that can accompany cardiac diagnoses.
But I left feeling rotten.
Here's why: He suggested that, if I had originally been seen at his hospital, rather than in Toronto, I might not have been encouraged to get my defibrillator. He admitted that my Toronto doctors are experts in the field of congenital arrhythmias, but he said they tended to err on the side of caution, whereas he tends to be more restrained in his approach to treatment. He did 3 types of EKGs and did tell me that they were abnormal (electrical impulses coming from an unusual direction, or... something? There was a lot to take in; I'll make sure I learn more the next time I see him), but he didn't want to connect that abnormality to Brugada. It could be a result of HCM, or something else (and now I wonder if it's related to scoliosis, and I didn't think to ask that at the time - I hate thinking of the important questions once I'm already out the door.)
He encouraged me to repeat the original test which produced the positive result - a Procainamide challenge - and I have agreed to do so. It will be done as an IV infusion with an EKG hooked up.
I had a fairly long talk with him, and told him I feel a bit frustrated with the lack of positive knowledge.
I didn't tell him, I guess because I hadn't fully thought it out, that what's really bothering me is the idea that all of the tests, procedures, the surgery, the getting-used-to-it that I've gone through over the past two years, might have been pointless.
My Dad reminded me that I was seen by some of the top North American experts when I went to Toronto, and that they weren't in the room with us to defend their decisions. This new doc is going to talk with them about me, hopefully soon. And my uncle did die.
I keep reminding myself of my original electrophysiologist - well-known in his field, an award-winning professor of medicine and no idiot, I am sure - phoning me at home the day after my surgery to make sure I was doing well, and telling me he thought I had made the right decision. But I'm still a bit glum.