Today I visited Mass General Hospital only 3 weeks since my open heart epicardial surgery. I last left the doctor under the pretense that I would never be able to run, jog, skip, paddle, pedal, climb, lift, hit, throw, skate, shoot, or just about anything that raises heart rate ever again. I questioned the fact that the scar on the outside of my heart is indeed ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy). In previous posts I referenced it as the old archaic name: “ARVD (Arrhythmogenic Right Ventricular Dysplasia)” Apparently, “ARVD” is entirely passé, and all the cool kids are using “ARVC” these days, so I’ll try to be on top from now on.
Previously my MD thought the MRI showed issues with scarring and immediately thought of this genetic and progressive heart disease. I remembered my previous cardiac MRI which showed my heart was structurally “fine”. (Actually I was hoping for a better adjective but maybe the medical community is a sober bunch, so I was OK with “fine”…)
Next was the super-long cardiac MRI that did the same thing, only more expensive and in Boston. This, however, was done after 3 heart surgeries where they stuck little wires with lightsabers attached to the ends into my heart and shot around the interior of the heart walls for 20 hours or so. It showed a few scars on the heart. I wasn’t surprised given all that I had been through… the MRI specialist said the same: the scaring could have been due to prior ablations given the patient’s history.
The doctor who performed the prior ablations looked over this report and confirmed that the area of the scarring was exactly where he had ablated.
Given this fact, it looked almost certain that I did not have ARVC and I started daydreaming about all the rides I will do and even vacations we will take in the years to come.
ARVC is a tricky diagnosis. Recent findings from Johns Hopkins show that almost 50% of those diagnosed with ARVC DO NOT actually have it. A definite diagnosis of ARVD/C consists of several major and minor criteria where several must be met to confirm ARVC. To date, I don’t fit the enough of the criteria to qualify for ARVC.
The only pro-ARVC result is that of the Dr. performing the endocardial ablation, who witnessed (through the catheter video camera I suppose) some fat and a scar in the same location that we’ve been blasting from the inside for the past 6 months. This doctor, however, is just as certain that I have ARVC as the other doctor who doesn’t think I have it.
I’ve submitted my genetic blood sample that does not rule out ARVC, but can only confirm it. If it’s confirmed, I’ll need to notify my family so they can be tested as well along with their children.
The main question he wanted to put on the table was weather I wanted a defibrillator installed or not. He had some apprehension due to my young age… and I was wondering if it was necessary at all. When I say it was “on the table”… it wasn’t subtle:
Vastly altering one’s lifestyle and implanting a defibrillator should only be done with proper science and test results that justify these measures. Obviously he’s talented and has a lot of experience in this field, but basing his diagnosis solely on what he witnessed is lacking in depth.
So while he’s shouting that a wolf could be coming to kill me and wants me to run inside, lock the door, and throw away the key – I’m wondering if the killer wolf is actually a cute puppy who just wants to play.
In the meantime, I asked about my vacation starting in a few days about what I can do…
“Well, you could go on a walk…” he said.
“..with your grandma.”
She’ll be vacationing on her 104th birthday.