After 2 full years trying to diagnose and treat my heart so it provides blood, oxygen, and beats normally, I finally received a definitive conclusion from my cardiologist.
Dr. I Don’t No
Actually my cardiologist is awesome and he does know. But what he thinks I need, cannot be done in his hospital… or many others for that matter.
Turns out, an epicardial ablation has only been around for about 6-8 years at most. This means that there are only a handful of doctors who have done it, and an even more selective number who are considered ‘experts’. Thankfully, I’m only 90 minutes away from (as I learned) one of the best hospitals in the US [Edit: THE best, according to many], and one of the few doctors worldwide who have successfully done this procedure and has been published in medical journals and books numerous times on the topic. So all my cardiologist could say was (effectively) “I know what needs to be done. I can’t do it, but we know a guy who can”. One might think getting cardio surgery in the rural venue of Bangor, Maine would be something out of a Steven King novel, but I actually had a great experience.
Bangor native Stephen King’s Misery.
The way that this heart condition works is that you have rule out the “easy fixes” first, before attempting the bigger fish. So we ruled out the easy fix not once, not twice, but three times… and the doctor(s) in Bangor were first-class. I heard stories about 2 or 3 hour procedures where the doctor gave up. Not here. If I remember correctly, my three procedures were 6hrs, 6:30hrs, and 8:30hrs in duration. These guys hunted and fired as much as they could. Lots of respect and applause for that. However, at the tipping point they had to say it was time to get called up to the big leagues. Although Maine is fairly rural, the medical mecca of Boston is just 90 minutes away.
Mass General Hospital
I drove down to Boston for my 2pm appointment not really knowing what to expect, other than I’d be meeting with a cardio guru – one of the best in the world at treating this kind of arrhythmia – so I wasn’t sure to bow, nod, curtsy, or pledge allegiance when meeting him. Maybe it was the drive, or the build-up, but I as uncharacteristically quiet. I let him thumb through the data, charts, and summaries of my previous 3 surgeries and numerous tests as I felt they were more scientific than any utterance that emanated my from my mouth.
Then he said, “I don’t know. Still something tells me that this is endocardial.”
You may remember that endocardial is burning the heart from the inside, something that has been done 3x already.
He then added, “Because I’m afraid you might not be educable [into V-Tach] under general anesthesia, and based on these charts, it might be possible that it could be cured with an endocardial ablation.”
After spending 6 days in the hospital and 3 surgeries for endocardial ablations, I tried to respond (will all due respect as I don’t know even 0.01% of what he knows)… and without rolling my eyes… or shouting, “Come ON!”
So with respect, I just paused for a while and tried to think of what my cardiologist in Bangor would want me to say:
Me: “Yes, you could. However, I feel I need to say that a big effort was made in my 3 prior procedures. Each ablation was over 6 hours and the final ablation was 8.5 hours and they could not correct the arrhythmia.”
I realized that 6hrs+ for a simple endocardial ablation is not typical (I saw many accounts online with people saying it took 3-4hrs) and then the 2nd lasting 7hrs and a third at 8.5hrs… someone had to say that…
I Wondered if I offended the guru with typical patient idiocy caused by too many Google searches and WebMD.com page views. But, it’s hard to judge another hospital or doctor unless it’s your own facility or your own hands doing the work. I’m a perfectionist too at certain things so I get it. Picking up on this fact, I tried to convey the extreme lengths that the cardiology ward at EMMC made leading me to his office. It’s probably not the best way to make friends… but at this stage making friends wasn’t the point.
He picked up his pen and scribbled down “8 1/2 hrs”, sat back. and took a deep breath and was silent for a while. He then flipped through the stack of charts for the 5th time like a comic book flip-pad.
Dr: “Ok, so I think we can do epicardial but I would like to try endocardial first, incase you are not inducible and then switch if needed. We will need all-day.”
Me: “Sounds like a plan.”
Dr: “I would like to see a Cardiac MRI though to get a good picture of your heart, to see any scarring or abnormalities.”
Me: “Yes I had a Cardiac MRI, it’s not in your folder? Perhaps I can have it sent over…”
Dr: “What were the results?”
Me: “Just that structurally everything look great. I even specifically asked about scarring and they said they found none.” (I read a medical study about endurance athletes who tend to have cardiac scarring which can lead to complications when combined with other factors). “But I only get the watered down patient version, so that’s all I know.”
Dr: “I would like it done here. We have a guy who can take images that few people in US can.”
The MRI lab looked exactly like the lab in my city with the familiar white MRI machine made by GE. It look similar to the MRI here:
GE Open Mri
Then the MRI guru walked in and started saying the same exact things I heard before.
“Yup, Yep, Ok, Sure, Yes.” It was basically the same. Until he said,
MRI Dr: “So you’ll be lying on your stomach the entire time.”
Last time I was on my back, and simply had to hold by breath for 20 seconds at a time, then recover and do it again. For about 1 hour. I’ve never been able to lie on my chest… it just feels like a slow suffocation to me. There were other differences with this MRI, or at least the patient setup. One was that they had a device that measured my breathing… or at least the volume that my chest was inhaled or exhaled at.
They also did a better job explaining that the MRI would only take pictures when my heart wasn’t beating. This may seem like a small detail, but active people like cyclists, this is when your low heart rate comes back to haunt you. If you have a waking HR of 60bpm, no big deal… simply hold your breath for 30-35 seconds while 20 – 30 images are taken. But for those in the 38-45 hr zone, prepare to hold your breath for 37-47 seconds. Combine the fact that I (for some reason) am the worst breath holder in history of adolescent pool games with the fact that lying on my chest constricts my breathing and heart beating… and well…
MRI Dr: “If you have a slower HR, this could take longer than an hour since we need to get the all the images required.”
MRI Dr: “And I cannot stress enough how important it is to not move at all during the session. If you move 1cm, we will need to recalibrate and start over.”
Inside the small white tube with the knocking and banging about done by the MRI I am usually fine. But I start to freak out whenever I hold my breath. How much longer? Will I burst out in need of breath? Is it over? Now? How about now? Oh geez, what if I exhale an screw the whole thing up!”
It’s funny how being in an enclosed space with the simple repetitive instructions of “Inhale, Exhale, Inhale… and hold!” over and over and over 100x has an effect on your psyche. I was having trouble with the breath holding so I tried to focus on a “happy place” I guess, although I didn’t intend to.
I know that being locked down in a small claustrophobic area is makes the time pass slowly but nearing the end I was thinking that this might be going over the 1 hour mark. I began to dream less and focus on the machine more. Noticing how it only took images when my heart wasn’t beating. Often my heart would skip a beat, prolonging the entire process and wasting precious seconds my inept breath-holding capacity.
Finally, I was backed out of the MRI tube and was told it was over. After several minutes of untangling wires, IV’s and other equipment I had to ask:
“I know time doesn’t pass quickly in there, but it seemed longer than 1 hour?” I said.
The technician simply smiled and said “Yes”.
Me: “So… how long WAS it?”
Technician: “2.5 hours”…
New PR for me for lying on my chest for sure. And I didn’t move 1 cm… and have the bed & wire chest wrinkles to prove it.
Bed Wrinkles Hall of Fame