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:

Medtronic Viva CRT-D

Medtronic Viva CRT-D

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.

This entry was posted in Heart Arrhythmia and tagged , , . Bookmark the permalink.

3 Responses to Wolf!!!!

  1. I hear you, brother. ARVD/C is so hard to diagnose, so many boxes to tick… I have been tested in so many ways, I even have a cardiac loop recorder installed atm to keep track of any abnormality in my heart rhythm (batteries last for up to three years, it’s been in there for six months)… Every time I think that what I have is not ARVD, I read news of a young footballer or soccer player carking it suddenly on the field due to “heart failure”…
    May I ask, do you have north Italian genes in you? Apparently ARVD is most prominent in males from that geographical area.
    One of the good things about the modern world, though, is that news travels fast and research advances steadily as well. Defibs get smaller and artificial hearts more real! http://www.webmd.boots.com/heart-disease/news/20110802/first-uk-total-artificial-heart-transplant
    Take it easy,

  2. runsistarun says:

    Hi! I found your blog while looking for folks who have ARVD. I was diagnosed with ARVD by my cardiologist at the Cleveland Clinic in Florida. I went to Johns Hopkins for a second opinion and Dr. Calkins confirmed. An ICD was strongly recommended but was not forced on me. I am a runner… albeit not a fast one but I’ve run 8 marathons over 3 continents. Glad to know I’m not alone although it seems very lonely.

  3. wilfredweihe says:

    Is there some update on your problems? I have something similiar, just that mine tach appears after recovery… I can run/cycle if my heart beats normally but if it’s in psvt it goes up to 200 in minutes…

    I hope you are ok and have some good news to share. I can’t imagine not being able to run/cycle whole life.

Write a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s