Called Up to the Big Leagues! (Officially a Medical Outcast)

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

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.

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

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 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

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

Bed Wrinkles Hall of Fame

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2 Responses to Called Up to the Big Leagues! (Officially a Medical Outcast)

  1. oreoowner says:

    Have you heard about your MRI-what is the latest update? I find your blog very helpful. My twin sister just got an ICD. She was very active in soccer since we were 4 years old, developed SVT at age 16, had complete heart block at age 22, now at age 28 had episodes of vtach and one episode of vfib. She, like you, ended up at UPenn and had EP studies. They found no scarring or reason for her arrhythmias, and spent 11 hours on the EP study combined with the ICD implantation. They said multiple arrhythmias fired all over the place and they couldn’t locate where, and don’t know why this is happening. She has had her ICD/pacemaker combo for a week. If you have heard any updates about your health please share!

  2. thewaywardcyclist says:

    Hi Oreo,
    As far as I know, I do not have SVT. As far as I know RVOT-VT is similar but not exactly the same. But they’ve been puzzled in fixing this so I’m not ruling out a slight mis-categorization.
    I’m hoping an ICD isn’t in my future as I’m not really one for meds or electronics inside me… unless it’s the last resort.

    The latest MRI that you are asking about is something I’m also wondering about. After my first cardiac MRI, I asked how it looked and “Great” was basically all I got. I asked specifically about scarring because there are some web rumors floating about that athletes are beating their hearts to death by overexertion creating scars. (personally, I think human’s propensity to under-exert themselves is a bigger issue but alas…) They found no scarring of any kind in the first MRI.

    I haven’t heard anything about the 2nd MRI at Mass General yet, though I suspect they would call me if something was awry since they know I’m still cycling for general fitness and recreation. I wish I had access to the MRI’s (and maybe I do) but I’ll be inquiring in the next week about them to get the full story. And also, if having 2 Cardiac MRI’s is worthwhile or excessive.

    At this point, I’ve had 18 hours of EP Study/Ablation Surgery and I’m pretty easy to induce. I will say that after each surgery I have to “re-learn” my heart. It used to be like a bomb… it would go off and the next hour was awful. Now it’s like someone is following me with a BB gun… I get short episodes from 10-45 seconds… over and over and over during exercise. When it occurs, I get no oxygen to the lungs and although I still have a pulse, my circulation is very bad. When it ends, I get a huge head rush, leg rush, arm rush… I feel drugged. I recover after 1 minute, continue exercise, then it starts again a few minutes later.

    Don’t worry, I keep updating but currently I’m just trying to hang on, make the best of it, and distract myself enough so I don’t notice the long wait for the Endo+Epicardial procedure on July 22.

    It’s a really nasty thing to have happen to active people, especially at a relatively young age which is typically the case. For the record, I’m 34. I started seeking treatment at 32, and I can trace back symptoms easily to age 28 or 29… and possibly all the way back to 21.

    Hope all is well with the ICD! I know it has limits but it’s far above the quality of life without it!

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