By far the worst part of the whole experience was the hazy communication regarding my condition. The doctor who performed the Epicardial Ablation is very good. So good, he’s busy keeping up with the demand and it’s no surprise he’s better at executing complicated heart surgeries than communicating with patients. Near the end of my stay, he made a brief 5 minute stop to say that the procedure was a success and he fixed the VT.
“But, I see some scarring on the outside of the heart… so… I think we’ll have you on beta-blockers indefinitely and no more exertion or any exercising I think.”
My mom steps in, “You know he likes to do endurance sports for hours at time?” saying it more in thinking that endurance sports somehow cause this scarring (which they don’t).
The doctor makes a confused face while scrunching his forehead and asks,
“You do this because you think it’s healthy…. or you think it’s fun?”
I didn’t answer the question because obviously this conversation was going nowhere with such a polar difference in lifestyle choices and opinions. Since it was clear he didn’t know much about me personally, I figured the guru mechanical fix was all I needed and I can now return to my regular cardiologist who knows me very well.
Of course, the beta-blockers were an option 8 months ago, but I decided to fix the underlying problem with surgery rather than drug my heart with a synthetic governor to mask the issue. Now with the VT fixed, the doctor still wanted me to take beta-blockers because of a scar that may or may not cause a very serious heart condition called ARVD (Arrhythmogenic Right Ventricular Dysplasia). There’s a baker’s dozen of acronyms that categorize various heart arrhythmia conditions and always assumed I had the relatively benign “idiopathic RVOT-VT” which is no fun, but it won’t kill you. ARVD on the other hand is (usually) inherited and often associated with ‘Sudden Cardiac Death’ especially in relatively young patients who are active in sports or fitness. (Though some people think the exertion causes the scarring and ARVD, this is not the case. From what I understand, those who have the condition who also take part it sports or other cardiovascular activities are typically the ones who suffer sudden death simply because of the heart’s condition)
Back in November, I had a cardiac MRI at the regional hospital which showed no abnormalities.
“Looks very good,” my regional cardiologist said.
“Any sign of scarring?” I asked because I had read some scary articles about athletes with cardiac scars who suffered deaths on the field.
“No, no scarring.”
I was safe.
In May, the doctor in Boston said he wanted a cardiac MRI done.
“Great! Already done! I can have them send it over,” I said.
“No no. It has to be here. My guy can take some of the best images in the world.”
And who can argue? So I had a second MRI. The first MRI was ignored since it was from ‘an outside hospital’.
I would imagine if a scar was discovered in May I would get a phone call… something along the lines of “Hey, might want to take it easy and sit on the couch for a while” but I didn’t. So at this point it’s unclear whether the scarring was seen in the MRI (usually the best method to find it) or if the doctor physically saw it during the procedure, or if the scarring was not related to a heart defect or disease but rather the aftermath of 20 hours of endocardial ablating. (I hoped for the latter but the doctor told me that it was impossible for ablations inside the heart to cause a scar on the outside of the heart).
At this point I expected to be taking it easy for a few weeks so this downtime is expected. Downtime for the next 50 years or so really wasn’t expected. Hopefully in the next week I can get someone to have a look at both MRI’s and give a conclusive prognosis. Even if the ARVD theory proves true, I think I’m ready to tackle that – I just don’t want to research and obsess about the worst case scenario unless there is some data to support it.