Cardiologist: “I Saw What You Did This Summer”

Summer Beets.  Summer Beats.

Summer Beets. Summer Beats.

Today I met up with a cardiologist technician who manages my device.  It’s been 3 months since my implant so they need to download everything I’ve been doing since then.  Due to my optimism pre and post ICD surgery, I simply kept on living as usual with the new smart device.  Originally my cardiologist came up with a threshold of 189 bpm to trigger the device to start recording.  An excellent idea in my point of view since I can’t hit 180bpm unless someone’s life is a stake and if I did venture into that zone, it’s very atypical and something to be recorded.  Most of my previous arrhythmias occurred at 210-250bpm so the threshold was well planned.

Until I decided to go to the bathroom in my johnny.  Yup, a day out of surgery I went to the bathroom, came back, laid on my hospital bed and relaxed… I picked up my tablet or computer and then I went into arrhythmia.   Compared with the prior 3 years, this episode was very, very easy.  Just a few beats, nothing too dramatic.  I tried to contain myself and throttle things down… as I knew ‘Big Brother’ was watching.  ‘Big Brother’ in the cardiac ward is an array of computer screens that show every patients EKG in real time that they receive wirelessly through a remote control size device that you are forced to carry around with you. If you get out of line and have a problem, they know it, that second.

So when I felt a palpitation after I sat down I thought, “hmmm, maybe if I just sit here and relax, no one will notice.” After all, it was very minor compared to episodes in the past.  Sure enough, 10 or 20 seconds later it was done and over with.

About 30 seconds passed when 2 stressed out nurses clamored in with a ticker tape of the heart EKG event.  “OH! How are you? Can you hear me?  Are you ok?  Are you ok? We just saw a 10 second arrhythmia at over 200bpm!”

“Yeah, I’m fine.” As I put down my work computer.
“Oh good, but this was a very bad episode,” she said.
“Oh?  Not..really…for me,” I said “I’ve had these things last for hours, a few seconds is ok.  Probably just a reaction for the surgery”.
The nurse continued to look at the ticker-tape where she shook her head.
“It’s ok,” I said, “I’m fine”. Then there were some jokes about what I was doing on the computer, ‘har har’.

As it turns out, I always seem to have a slight episode after surgery.  Once the day afterward, then again when I try to resume my “activities” (aka: using the heart).

So when I had another arrhythmia after getting my ICD implanted, I was not shocked.  (That’s funny right, because also, I was not shocked!)  They noted it because they were monitoring my heart in the ‘Big Brother’ room, but as it turned out my newly implanted device didn’t record it.  The rhythm was minor and fairly low, at only 180bpm, so the threshold of 182bpm was not triggered.

In the morning, a Boston Scientific guy came by to reprogram me to 160bpm to catch any and all arrhythmias. I told my cardiologist that if everything works out and I’m able to get back to regular life, that recording events at 160 bpm is going to record…. well, “a lot of junk beats”.  Meaning that the SSD drive will be picking up regular situations where I’m simply biking along at a good pace, having fun, at 160+ bpm.  My cardiologist seemed fine with my warning and confirmed that they will weed out the data.

Junk Beats

Junk Beats

Fast foreword to today the technician was quite stunned when she saw all the ‘events’.
“Oh no, but we have a… lot… of… events, here.” she said.
“Pretty sure these are all just exercise, I know we lowered the threshold…”
“Yes but there are a lot… and… ” [she hits the 'Print' button 3 or 4 times]

I tried to explain the threshold change but her eyes looked as though she wanted me in the hospital tonight.
“And look here… see this histogram of your heart rate for the past 3 months?”
The histogram is highly spiked with 40-50bpm and then again 60-70bpm… then nothing until a small block in 130bpm, then smaller in 140bpm, then smaller in 150bpm, then the a small tail into the 170’s.
The technician wasn’t much older than me and didn’t really know me prior to this, but it was clear she knew her science, and I struggled to find the words to come next…
“That’s exercise,” I said.
“Oh”, she said.
“All of it?”
I looked over the histogram again.
“Looks good.  Most of the time in zone… well it looks fine to me.”
“I only experienced 1 arrhythmia and I think you caught that, a few weeks after surgery.”
Tech: “Yes, you were at 210bpm and the device paced you down without needing a shock.”
Me: “Yes, I remember that… (thought I pulled out of that solo as usual, but good to have some tech on your side.  That was news to me.)

Tech: “Still, considering the number of ‘events’ here, I’m going to ask your cardiologist if perhaps we should consider beta-blockers.”

Me: [Nodding], kind of.
_______________
Up Next: The Boston Scientific Latitude device arrives… (wirelessly sending my Beats to Dr. Dre my Dr.)

Posted in Heart Arrhythmia | Leave a comment

Road Shoe Shootout!

In an effort to find the perfect cycling slipper, I’ve tested a few recently and figured I’d share the experience. Of course, shoes are highly subjective to the foot occupying them so I’ll try to keep an empirical tone.

Bont vs Giro vs Spiuk

Bont vs Giro vs Spiuk

Tested from left to right are:

  • Bont Vaypor+ – Expensive counter-culture shoe.
  • Giro Prolight SLX – Simple and lightweight shoe from last season, found at closeout.
  • Spiuk ZS15RC – Euro shoe from the small Spanish brand

Bont Vaypor+

The expensive heat moldable shoe boasts enlightened fit that Bont claims was inspired by the human foot, rather than a traditional shoe. I followed the guide and baked the shoes in my oven then loitered in the kitchen with the hot cycling shoes for while. I’m not convinced the molding process improved the fit drastically, but it probably didn’t hurt especially since no one witnessed the event; saving what little integrity I hope I still have left.

Weight:
The Vaypor+ is a light shoe. It’s a fan favorite on the top French cycling forum Velo Optimal in an 89 page thread dedicated to the pursuit of finding the perfect lightweight road bike shoe. Here’s my size 42.5 Vaypor+ all fitted with Speedplay cleats (subtract 60 grams and you’ll have the weight of the shoe only ~ 277g)

Bont Vaypor+ with Speedplay Cleats

Bont Vaypor+ with Speedplay Cleats

General Fit:
The Vaypor+ has a very large toe-box. My toes have more than enough room to curl up, move about, take a stroll, or go on vacation should one toe get sick of hanging out the others all the time. For me, that’s just too much wiggle room as the tops of my toes would sometimes get irritated from rubbing the top of the toe-box as they migrated around. Of course, this is a big advantage for people who need extra real-estate in their shoes.

Adjusting the Fit:
The Atop dials that came with my Bonts are an older version (I received these shoes in July 2013) and can only be micro-tightened, but to loosen, the dial simply releases the tension fully. Therefore, if you tighten one notch too much, you have to release and start all over. Apparently Atop has a newer version that mimics the Boa dial so micro adjusting can be done for both tightening and loosing the wire lace system. However, as of summer 2014, it appears that the Vaypor+ is being shipped with Boa dials which are fully micro-adjustable in both directions. Guess I missed out on that one.

Bont Vaypor+ with Atop dials

Bont Vaypor+ with Atop dials

Longevity:
Granted I didn’t ride a lot between August of 2013 and June of this year, but as you can see, the Vaypor+ is holding up quite well. There is hardly any indication of wear as the toe bumper and heel cup are sturdy and rugged.

Insole:
The Vaypor+ comes with a very thin insole which didn’t work with my foot profile. I’ve constantly been trying insoles from other shoes trying to find the best fit for me.

Bont Vaypor+, stiffest sole in the shootout

Bont Vaypor+, stiffest sole in the shootout

Riding notes:
The first thing I noticed about the Bonts compared to my previous Sidi shoes was how hot they were. Despite the toe box having small perforations, there is little air exchange inside the shoe when riding. This is likely due to the 100% use of leather for the upper, rather than a mix of synthetic mesh materials and leather that other shoes incorporate. I do not have over-heated feet so this was more of an initial observation rather than a deal-breaking issue but on very hot days a little ventilation would be nice. On cold days, this cozy shoe is a great choice. The carbon sole is perfectly stiff and the stack height is so low that I had to move my saddle down quite a bit. It’s been said that the closer your foot is to the spindle, the more power is translated into the pedal stroke, so this is a good thing.

Personal Verdict:
It’s a great shoe that I still can’t get dialed in yet. Perhaps the right insole will turn these shoes into gems, but for now they can be fine one day and painful on another day. In addition to the large toe-box, the wire lace system seems to pinch the upper edges of my foot and aggravates the the tibialis anterior tendon which results in visually red and slightly painful areas once the ride is done and the shoes come off. The Bont, more than any shoe, tends to tighten laterally first, and vertically second. This can be troublesome for riders with flat feet like myself who need the vertical clamping component.  It should be noted, however, that besides my personal fit issues, it does have a great sole, low profile, durable structure, and great leather upper.  With the addition of Boa dials in 2014 and selecting the right insole (because the standard insole is plain awful, many will pick this above the narrow and fragile S-Works for it’s durability and stiffness or for riders who need a larger toe box.

Giro Prolight SLX

While these shoes originally retailed for $365 (and the 2014 SLX II shoe does sell for this price) I picked up these 2013 model shoes from Giro this year for the bargain price $165.

Giro Prolight SLX on the scale without cleats

Giro Prolight SLX on the scale without cleats

Weight:
The Prolight SLX is a shocking 199 grams in size 42, which is 78 grams lighter than the very lightweight Bonts. Giro accomplished this by using 3 simple velcro closures, and Easton EC90 carbon sole and a good amount of synthetic mesh on the uppers.

Giro uses Easton's EC90 Carbon sole

Giro uses Easton’s EC90 Carbon sole

General Fit:
The Prolight SLX has what I would consider a more ‘standard’ fit, which is to say they fit more like Sidi shoes. The toe-box is not overly wide like the Bonts and the fit through the midfoot is not overly narrow like the Specialized S-Works. The heal cup may not be as ‘locked in’ as Sidi, but it’s far stiffer than the 2013-2014 Specialized S-Works and doesn’t trail Sidi by much. For me, there isn’t much to say because the shoe basically disappears from my consciousness while pedaling.

Adjusting the Fit:
3 Velcro straps. Easy like kindergarten. The third strap is fairly short so if you typically max out your top shoe strap, you might not be able to use the Prolight SLX. The 2014 version (SLX II) incorporates a slightly longer strap. For the average foot, however, I don’t think this will be an issue.

Longevity:
At 199 grams, it would be expected that the shoe is fairly delicate and fragile. It does not feel as robust as the Vaypor+ with it’s tugboat size toe bumper, but it feels much more durable than the S-Works shoe. As most of the upper is synthetic mesh or ‘vernice’ leather, I think it will hold up just fine. The simple velcro straps are also likely to outlive Boa or Atop or other wire lacing systems (even though Boa and Atop should be replaceable).

Insole:

Prolight SLX Insoles (Left: Standard, Right: Adjustable Arch)

Prolight SLX Insoles (Left: Standard, Right: Adjustable Arch)

The Prolight SLX comes with a very nice standard insole that’s already much better than the Bont. However, Giro decided to step it up and include a second pair that has a deeper heal cup and an adjustable arch system.

Giro Insoles (Standard red, Adjustable black)

Giro Insoles (Standard red, Adjustable black)

Adjustable arches in Small, Medium, and Large

Adjustable arches in Small, Medium, and Large

I was eager to ride so I just threw the shoes on my feet with the standard insole and had no problems, but certainly Giro is giving you the ability to fine-tune your shoe so you get the perfect fit. Something Bont and Spiuk did not do. Perhaps one of these extra insoles could be borrowed to breathe new life into the Bonts.

Riding notes:
The Prolight SLX is indeed a light shoe. It goes mostly unnoticed during the ride while providing a very stiff platform. The breathability is great and I have not encountered any issues yet. On long 3-5hr rides, I have gotten a few mild hot spots but with the numerous insole configurations, it’s just a matter of getting it dialed in.

Personal Verdict:
A great simple shoe that does what it should without being fancy or stand out from the rest. This one is a keeper. At $165 for the white version, and a silly $119 for the black version, these are a great bargain. It doesn’t pretend to be a luxurious super expensive shoe, but it seems to fit better than some shoes that do.

Spiuk ZS15RC

Spiuk is a relatively small cycling company located in the Basque mountains that continually crank out some very nice cycling gear. Currently, they do not sell or market their products in the US, but after a great experience with their helmets and sunglasses while living in Europe, I decided I would give their top-of-the-line road shoe a try, even with slow international shipping. After all, everyone needs a pair of non-white shoes for rainy days or perhaps a shoe that maximizes visibility on the road during the early spring and fall.

Going with the Fluo, the Spiuk ZS15RC

Going with the Fluo, the Spiuk ZS15RC

Weight:
At 299 grams with Speedplay cleats, and 239 grams for the shoe only in size 42, the ZS15RC is a very light shoe. This came as a bit of a surprise since it bested the Bonts which are renowned for their svelteness, but cost twice as much and use the same Atop dials.

General Fit:
The Spiuks have a similar ‘standard’ fit as the Giros. However, they do feel more comfy, perhaps because Spiuk incorporated a little more padding on the inside of the shoe than the minimalist Prolight SLX. The Atop wire lacing system feels good since there is ample padding in the tongue and the heal cup provides good support. Perhaps it’s due to the additional padding, but I felt no areas of tightness or discomfort throughout the shoe.

Spiuk ZS15RC: atop view

Spiuk ZS15RC: atop view

Adjusting the Fit:
Like the Bonts, Spiuk went with the Atop dials. While these also cannot be micro-adjusted in both directions, I was familiar with the protocol after riding with the Vaypor+ for a year. Perhaps it’s because the shoe is not as wide as the Bont, I found the adjust ability better and more granular than the Vaypor+ which tended to have a very narrow “sweet spot” when it came to tightness. The Spiuk shoe didn’t have the same “laterally tight first, vertically tight second” mantra, but a more predictable overall tightness when the Atop dials were hunkered down. For this reason, I found the ZS15RC much more forgiving and user friendly in regard to fit.

Longevity:
The Spiuk shoes utilize a highly perforated vernice upper with reinforced toe bumper and outer heal. My only hesitation is something I would not notice but a few reviews on Wiggle have stated that the top anchor which holds the wire lace to the shoe can rip out. Still, there are very few people who experienced this and the shoe does get great reviews overall. Just something to keep an eye on.

Insole:
The Spiuk comes with 2 insoles which I found to be very comfortable. One is dedicated for the summer months and one is dedicated for colder rides. A pretty nice touch!

Cool and Warm Spiuk insoles

Cool and Warm Spiuk insoles

Difference between the Cool insole (top) and the Warm insole (bottom)

Difference between the Cool insole (top) and the Warm insole (bottom)

Sniff Test:
A cycling industry first, this shootout also included a sniff test to determine which shoe smells the best. Our judge did not waver about the winner, scoring the Spiuk an incredible 2.7182818 on a scale of 3.1415927:

Sniff Test Winner

Sniff Test Winner

Riding notes:
The first thing that struck me was how comfortable the shoe is. Going from the Bont to the Spiuk was like the difference between a cheap rental ski boot and a well cushioned running shoe. I’m sure I’m being overly harsh here, but the Spiuk is an incredibly cushy shoe. The sole is not as stiff as the Bont and not as stiff as the Giro’s Easton EC90 sole, but it’s still very capable and only the meanest and angriest sprinters will dismiss the Spiuk in favor for a beefier shoe. The ventilation is also very good. The sole’s stack height is the highest out of the 3 tested. It’s not a big difference going from the Prolight SLX to the Spiuk, but going from the very low Bont to the higher Spiuk on the same bike will probably require a seatpost adjustment (or you can just choose to ignore it to prove how resilient and open-minded you are to changes in your position).

Personal Verdict:
The Spiuk ZS15RC is probably the most comfortable out of the 3 tested here. Those who enjoy short 1hr rides with group sprints and intervals that test your 5s maximum wattage might choose a different slipper. My only gripe was the high stack height, but it’s not a huge negative. While I thought these shoes might sacrifice performance for comfort, the rides I’ve done with these shoes always end up being some of the fastest. Maybe it’s the shoe, or maybe it’s just hard to ride slow with green fluo.

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The Road Ahead….

The biggest issue for me in these last 4 months while I’ve been banging my head in a sedentary underworld is: “what now?”
I’ve asked the question to both my doctors and although I’m diagnosed with one of the few genetic aliments where exercising is akin to putting a gun to one’s head, they’ve both given me the verdict that ‘for now, do whatever you want, but try to stay away from max heart rate exertions’

..not long ago, Col de Babaou, France

..not long ago, Col de Babaou, France

This is pretty good news since my last bike race was 13 years ago and prolonged max efforts are not something I enjoy anyway. Their thought process is that I have ARVC/D which will become evident, but I’m passing most of the classic tests at the moment. As a truce, they’ll let me do what I want, but they’ll keep an eye on my ‘progress’. I don’t mind the monitoring at this point because the data that I see so far doesn’t add up to classic ARVC/D. Perhaps I’m just slow, but this genetic heart condition usually manifests itself between the ages of 15-35 years old. At 35, I’m thinking I’m a bit long in the beard to get a “we’re just finding this out soo early that it’s just not showing up yet” explanation.

Protocols are protocols and because lawyers are all over medicine these days, one can only agree and hope for the best. After visiting John’s Hopkins and getting the diagnosis, there isn’t a cardiologist in the world who could deny or refute their claim. Their orders are law because they are the experts in ARVC/D. The orders from John’s Hopkins are:
A: ‘Get an ICD and then you can continue with daily life’
or
B: ‘Don’t get an ICD and sit around with absolutely no physical activity for a year or 10, until we prove that you need an ICD, then, see A’

Great options, huh? Like a kid taking candy out of rusty 80’s Camaro in a school parking lot, I decided to get the ICD which is basically a safety-net should one’s heart misbehave. My thought is that I can grab the (required) candy and outrun those creepy losers over a long distance chase. (Note: the diagnosis is a creepy loser, I have only the highest respect for all the doctors I’ve seen). I might be wrong here, but it’s worth a shot. I had a hard time finding medical articles that say being 100% sedentary for years at a time is a good thing. Looking at examples of the general public who adopt this mantra isn’t inspiring either.

Soon the ICD implant and the wire into my heart will have plenty of scar tissue so I can get some fresh air again. The real problem with a new ICD is that you can easily pull out or jostle the wire that’s buried in the heart. If enough side-to-side or fore-and-aft play occurs, the wire will be weakly attached and can easily dislodge from the heart – if not now, than at a later date. But if it’s healed with enough scar tissue, the wire should be good so long as you don’t do anything crazy with your upper body like entering an amateur boxing match or getting hit with something square in the ICD device. My doctor admitted that his last surgery the day before mine was to fix an ICD he put in a guy just a few months ago, but the guy got into a fight and victor hit him square in the ICD… a TKO or touché… the guy needed surgery again. Heeding the warning, I pointed to my biceps and said, “I don’t think you have to worry, I won’t be getting into any fights soon.” And with an ICD, I think my ice hockey days are over even if I wanted to do a pickup game where one might get hit with a puck or drop the gloves. Mountain Biking, because I asked, should probably be avoided for several months. I might rethink the MTB scene at a later year should everything else go well. My doctor said he put extra slack on the lead into the heart since he knows how much I enjoy using my body and temperamental ticker.

It’s funny, but despite the fact that many people have ICD’s, I could find little about mine or people taking about what model they have or the benefits of one model vs another. Luckily my cardiologist was able to make these decisions for me. When I asked him explicitly, despite his young age, he said he’s installed “… hundreds”. Yet in the weeks before the surgery, he still researched the latest ICD news to find the right one for me… a progressive work ethic I admire. Apparently they’ve come a long way over the years… and will continue to do so. New models come on the market almost monthly, split between the big names of Medtronic and Boston Scientific and others.

Internet and social media seems eerily quiet in this day in age when people #hashtag every generation of an #iPhone they #unbox. Unlike an iPhone, this sucker is permanent although you have to change the battery (requiring surgery) every 4 years or so. I suppose you have the ability at that point to ‘upgrade’ if you’re willing to suffer through the full change and reprogramming. However, an ICD will only save your life, but current software issues do not allow you to play solitaire or Angry Birds on it. Perhaps this is the reason why people are not very excited about the device.

iPhone Necessity

The situation where someone at a hip coffee joint pulls out a new model while you sit at the adjacent table and says: ‘

Guy: “Hey, (nods).. nice, mine’s the new one. I think… yup, yours the older version.”
You: “Probably”
Guy: “Yeah I remember watching keynote video on TED from back then… Steve Jobs gave it… when he was still alive and stuff.”
You: “That seems about right.”
Guy: “I mean, it’s cool… it probably still works, right?”
You: “Yes, it does” … taking a sip of espresso.
Guy: “Yeah they probably still work, I mean last September wasn’t all that long ago.”
Guy: “Hey, like turtlenecks!…Right?… I mean… it might still work… for you.”

I don’t think ICD technology has reached the critical mass status of becoming a café conversation starter, but it’s an interesting niche. I went into the surgery already knowing the ‘Quick Start Guide’ to ICD devices knowing their function, how big they are, the recovery time, the hazards, the limitations, the battery life of ~ 4 years. So when the doctor was going over all these same points I was only half immersed in the conversation… it was early and only managed 2 hours of sleep before the 2 hour car ride to the hospital. But I immediately noticed when he said, ‘and I’ve got you one with a 10-year battery life’. I had never heard of a 10-year battery life so this was good news. They implanted a Boston Scientific Energen ICD. I had the option of the new S-ICD lead-less format which has no wires into the heart. A regular ICD has wires that dive directly into the heart, while and S-ICD has one big wire loop that simply surrounds the heart. Through proxy, this loop can do many things a regular ICD can but is less invasive. It’s suppose to be good for people who get jostled around given their lifestyle, or younger people who only need shock therapy and no cardiac pacing. It’s a great breakthrough but it’s in the 1st or 2nd generation and despite the selling points of not having the risk of pulling out a wire, the initial reports are mixed, with many patients now trying to manage the side effects. An S-ICD currently can have a longer recovery time as it’s a more invasive surgery and some report pain or no feeling in the left arm, false shocks, etc. The standard ICD is now in the 14th generation (or something) and one of the benefits is that it can shock, pace, record, and transmit data while the S-ICD has more limited functions… mostly the shock factor and recording that obvious event. The standard ICD can be downloaded every night to a wireless router which then transmits the data back to my cardiologist. Mine is programmed to record when I go below 35 beats per minute (my 24 hour Holter monitor test revealed my true resting HR at 35bpm) and they initially programmed a record threshold of >180bpm for the upper range. The ICD won’t shock until 200bpm or so, but it will start recording at 180. The morning after surgery, I had my first arrhythmia since last July. It was very minor, only 9 beats, and I barely felt it (I’m used to 1 or 2hrs+ of 240bpm in the past), but the wireless monitor I was wearing at the hospital picked it up. Apparently, the rhythm was very slow 160bpm so they lowered the ICD recording threshold to 160bpm just to catch more data. I’m guessing a lot of this data gets ignored by human eyes, but should a problem occur they will know about it. When I go in for check-ups, they will have a day-by-day, beat-by-beat blow of my cardiac issues.

If the doctors are correct and I have ARVC/D, my heart will continually degenerate until the muscle has gotten so fat and unproductive that it’s weak in the knees. Maybe I won’t be able to ride 160km easily after a full 8 hour work day. Maybe a 10mph ride around the block with my daughter will be exhausting. Who knows. I feel the more closely we can monitor this, the better. If I’m going down swinging, the scoreboard better be turned on to keep an accurate count.

The Boston Scientific Energen states outright that it’s the one of the ‘thinnest high‐energy devices in the world’. They made it thinner compared to earlier models but spread it out over a larger area. It’s capable of both shocking me should my heart go ‘offline’ into the stratosphere of 200-250 bpm to bring it back to normal. If that doesn’t work, it can overtake the heart’s electrical signals and dictate the heart rate that it wants to see. So if I’m at 100bpm, then a few seconds later have a run of 230bpm, it will shock me to set me straight. It can continue to shock or alternatively ‘grab’ the rhythm and throttle it down slowly which they call ‘pacing’. The Boston Scientific rep said that although the 10-year battery life is marketed, a young person like me who is unlikely to need shocks or recorded events should get 11 years before needing a battery change. A very nice surprise.

Boston Scientific Energen

Boston Scientific Energen


Energen Dimensions

Energen Dimensions


I looked at a few photos of people with ICD’s before the procedure, and despite the ‘thin’ claims, it really sticks out more than any photo I can find online. After the surgery when I came back from the Anesthesia, my doctor checked in to see how things were doing. He admitted, somewhat sadly, that there wasn’t much, if any, fat in the chest, so the ICD is basically just sandwiched between the muscle and a thin layer of skin. At first, I could see the general bulge of the ICD but as weeks went by, the swelling went down and now I can actually see the small contour on the right side. On my 2 week follow-up, the device-technician pushed back my shirt, took a pause, and said with a wince, “You know… it’s probably always going to look like that”. After 2 weeks I was already accustomed to the view and was trying to warm up to it. Her wince was less than flattering. However, it’s super high-tech, made of titanium, and the whole setup weighs about 85-90 grams. What’s not to like?

I must say, the night before going in for surgery I came across an online photo album of people posting their ICD “scars”…. Some of the scars are very, very thick. I think, even after only a few weeks apres, this is pretty good work as only a thin line remains which should fade over time.
ICD

All this talk about heart rhythm control, implants, batteries, shocks, and remote EKG recording is all fun, but honestly I don’t see myself needing or using the device in the near future. My last epicardial surgery in late July ’13 basically fixed my V-Tach issues. I still have more PVC’s then I would like which can be perceived as instant and undeniable fatigue while exercising. It wasn’t until the stress test that I was finally able to quantify a PVC. While sprinting on the treadmill, I would have a moment where I said, ‘I think I’m getting tired’. I had a good view of the EKG monitor and noticed a spike at that exact time. ‘Is that a PVC?’ I tried to say amidst my panting. “Oh that?” the physician said, “yup.” Turns out most of my perceived pain over the last few years isn’t muscular or related to lactic acid, but actually moments when the heart has a brief hick-up. PVC’s aren’t generally ‘dangerous’ but if you are an athlete 2 or 3 or 10 of these “I’m tired and weak” moments per minute can really add up. Some days are better for me than others relating to PVCs. ARVD patients typically have between 1000 and 15000 per day. When I was monitored I only had 150. But as far as dangerous rhythms, that was put to rest last summer. Therefore, this ICD is for the off-chance something goes really, really, wrong… and I should be fine if that happens. Looking at the data thus far, that won’t happen now. Maybe in 5 years, maybe 10 or 20 or 40 or 60, who knows. It’s an insurance policy that covers a scenario…a rare scenario if you ask me at this point. Still, I’m glad I got it. The surgery wasn’t too bad, and the 12 weeks of absolute zero physical activity is almost over… so it’s done. Next page. No please, next page… I need to mow the lawn.

Posted in Heart Arrhythmia | Tagged , , , , | 5 Comments

Science & Shepard’s Pie

At this point, I still have many questions regarding my diagnosis how it all adds up to the relatively morbid diagnosis of ARVD. On one hand I’m much more accepting of ARVD than I was 8 months ago – so much so that I can even picture myself saying to someone, “Hello, my name is John, I have ARVD”. My wife knows I can be a bit of a fighter, and a stubborn one at that. After my visit to Johns Hopkins when I told her that I think I should acquiesce if only on the topic of surgically implanting an ICD in my chest she stormed out of the room. It occurred to me much after the door slammed that she did not disagree with my judgement, but rather was vexed that I folded my cards so readily and uncharacteristically. She’s the one who’s suppose to tell me “when to fold ‘em” because I never do, at anything.

This cardiac anomaly has been simmering on either the back-burner or the front-burner of my life since 2011. If you dig back enough, this blog is not about health or hearts at all, it’s about joy in the simple act of turning the pedals not only through life, but though the amazing twists and turns around places, people, and circumstances that I never could have fictionalized. (It’s also about a science guy trying to do his best at faking writing because honestly I don’t even know if “fictionalized” is a word and the more I ponder the thought the more I think I should create a software program that prevents me from sounding so daft.)

One irrevocable certainty is that I’ll be a stubborn science guy until I’m finally vindicated of that curse which will likely occur when I’m placed in the ground. Until then, I need numbers, I need graphs, I need case studies, I need to cross reference my data with others. Medicine is science and therefore there is an exact answer that previously collected data supports or one we can calculate within a given accuracy.

In my recent trip to Baltimore, however, I receive the a diagnosis which is a Shepard’s Pie. A little science, a little guesswork, a little leftovers from the guy they diagnosed last week. My travels and experiences have opened my senses to so many exquisite delights, that the lukewarm dish they are presenting on the menu appears all the less appetizing.

The Science of Shepard's Pie

The Science of Shepard’s Pie


In full disclosure, they are not wrong. You do not get to see the worldwide expert personally for a medical conundrum unless you are pretty screwed up. And as it turns out, as much as I’d like to prove otherwise and no matter how many KOM’s on Strava I can post in protest, the science says I’m pretty screwed up. Screwed up people need to take all the help they can get. So here I am a scientific misfit who’s hungry and cold Shepard’s Pie is on the table. It’s good, right?

It’s still too early to tell and too many results still pending to build a case but the more I write the more people reach out – also wondering if they have ARVD – and I continue to search to find information on ARVD. I find medical journals are quite helpful and I am extremely thankful for all the case studies conducted (and a special thanks to my statistics professor from a dozen years ago in helping make sense of it all) but really what I want to know is real people, with real stories, with real numbers, and real outcomes.

My final outcome is still to be determined. At this point the ARVD diagnosis is convincing enough to prevent me from cycling even though I feel the healthiest in years (and riding the best due to the lack of interruptive surgeries and arrhythmias). It’s also important to note that everyone has a different situation: a different family history, a different genetic sequence, a different history of fainting, a different EKG, a different cardiac MRI, etc, etc.

After getting this far I do know one scientific fact. Every person who is being tested or considered as having ARVD is wearing their heart on their sleeve.

A few numbers I have on hand at present (I’ll try to post more)
[Note: I'll update this later since I'm missing a few stats considered in the TFC]
Negative: Family History of Cardiac Sudden Death or Heart Issues
Negative: History of fainting while exercising
Negative: Genetic test for the 5 desmosomal genes associated with ARVD
Negative: Cardiac MRI (conducted 3x, still negative for major or minor criteria)
Negative: Evidence of Fibrofatty Tissue in the heart, basically the definition of ARVD.
Negative: Signal Average ECG (looks good)
*Positive: (*Now: Negative) Arrhythmia (sustained) Corrected with Epicardial Ablation
*Positive: (*Now Negative) Inverted T-Wave in leads V1-V3. Although T-wave inversion is big flag for ARVD (50% of ARVD patients have V1-V3 T-Wave inversion vs 5% in the general population) this inversion can also occur very frequently in children, young women, and… you guessed it… athletes. The study that showed this also showed the T-Wave inversion reversed itself after a few weeks of rest – which is exactly what happened.
Positive: PVC rhythms emanating from multiple locations
Positive: Slightly dilated Right Ventricle
Negative: PVC Frequency: Measured 50-160 PVC’s per day. ARVD minimum is 750 per day, average of 4500-7500 per day, and can exceed 15000 per day.
????????: Newer 76 sequence genetic test, apparently can’t help with ARVD diagnosis but can help identify genetic links in the family (which or how many family members to contact if you are positive)

Other——————–
Height: 5’11” / 181cm
Weight: 156lbs / 70.7kg
Body Fat: 6.9%
VO2 Max: 74 ml/kg/min
Stress Test: 22 minutes (terminated by tester @ 176bpm since max effort was not requested)
PVC’s after stress test (recovery): none
Heart———————-
CARDIAC MORPHOLOGY:
LV end-diastolic diameter (4-chamber): 5.5 cm
RV end-diastolic diameter (4-chamber): 5.6 cm
Myocardial signal intensity: normal
Global RV dilation (mild/severe/absent): Mild
Segmental RV dilation (mild/severe/absent): mild basilar dilatation
Fat infiltration RV wall: absent
GLOBAL RV WALL MOTION: normal
hypokinesia: absent
akinesia, dyskinesia, or dyssynchronous contractions/RV aneurysms: absent
LV FUNCTION: normal

Heart Pumping Skills @ rest
[Note: normal/average ranges in parenthesis]
ED volume: 217.27 ml (101 – 236 ml)
ED volume index: 114.50 ml/m2 (52 – 112 ml/m2)
ED volume/HT: 120.48 ml/m (60 – 130 ml/m)
ES volume: 80.93 ml (28 – 93 ml)
ES volume index: 42.65 ml/m2
Stroke volume: 136.34 ml (66 – 150 ml)
Stroke volume index: 71.85 ml/m2
Cardiac output: 7.92 l/min
Cardiac output index: 4.17 l/(m2*min)
Ejection fraction: 62.75 % (55 – 74 %)

ED volume: 279.47 ml (110 – 243 ml)
ED volume index: 147.28 ml/m2 (58 – 115 ml/m2)
ED volume/HT: 154.97 ml/m (65 – 134 ml/m)
ES volume: 173.41 ml (46 – 112 ml)
ES volume index: 91.39 ml/m2
Stroke volume: 106.05 ml (60 – 136 ml)
Stroke volume index: 55.89 ml/m2
Cardiac output: 6.16 l/min
Cardiac output index: 3.25 l/(m2*min)
Ejection fraction: 37.95 % (47 – 63 %)

Overall heart report:
Mild global right ventricular dilatation and mild right ventricular
ejection fraction reduction at 38%. No regional right ventricular wall
motion abnormality. No major or minor MRI criteria for the diagnosis of
arrhythmogenic right ventricular dysplasia (ARVD).

Doctor’s orders:
No activities to raise heart rate for the indefinite future [including table tennis]
———————————-

… it still remains unclear exactly where heated board games such as ‘Battleship’ or ‘Monopoly’ fall into the prognosis. Watch this space for updates.

Posted in Heart Arrhythmia | 3 Comments

Rider Down.

Rider Down
Checking in here at Johns Hopkins for the visit that would tell me if my heart is healthy to ride on through life, or if the railroad switch was pulled sending me into the fascinating world of ARVD.

Although my stress test went pretty well lasting 22 minutes (my previous best was a meager 19 minutes) a slight change in my ECG and the presence of PVCs originating from several different areas was the anticlimactic check-swing that struck me out.
ARVD is for me.

I don’t have much time to go into details (and my knowledge is mostly derived from the conversation I had with Dr. Calkins a few hours ago), but apparently ARVD isn’t as black and white as I presumed. Studies are currently underway that attempt to separate ARVD patients into two camps – those with the known genetic mutation, and those who do not have this mutation but might have an unknown genetic sequence that when combined with a medium-to-high level of exercise, either leads to ARVD or causes a condition that mimics it. The ‘exercise induced’ crowd seems to have it a little better than the genetic group who typically have more classic and obvious symptoms and test results. ARVD specialists are now doing research into the former group to find where these differences lie and if this means a different prognosis especially when it concerns exercise.

While it’s recommended that classic ARVD patients avoid all sports and any activity that would cause one to loose their breath, it might be possible that people with exercise induced ARVD can manage a certain amount of activity if they are deemed ‘low risk’ and take the proper precautions… whether that’s an ICD, or beta-blockers, or reduced frequency, or reduced intensity, or all of the above.

Time will tell what my risk factor is, and if I’m so lucky that I can be moderately active, what type of safety net I need to keep me out of trouble.

Posted in Heart Arrhythmia | Tagged , , , | 3 Comments

Off To See The Wizard….


     It’s been a while since my last cardiac update and it’s nice to hear from others who are interested in ARVD or have the misfortune of being in the same boat. It’s been 9 months since my epicardial surgery and I haven’t had a run of V-Tach since. I met with my cardiologist who was very pleased to hear the news and over the course of the winter we went through the battery of tests required by the 2010 Task Force Criteria for ARVD. (I think they might be working on new criteria but currently the 2010 version is the standard).

     So what is ARVD? Ask your doctor or visit arvd.org. But for people with no idea and just want a basic notion, I’ll take my exiguous view and dumb it down even further just for fun…

You probably recall on the first day of school in your first anatomy class the teacher said:

Welcome class! The human heart is a muscle!- your science teacher

…while you scanned the room to see if any number of your secret crushes also happened to be ensnared in the same educational cell. In simple terms, if you have ARVD your heart slowly morphs from a muscle that pumps efficiently on demand into a big hunk of mushy, lazy fat. It’s thought that exercise is bad for people with ARVD. Newly diagnosed patients typically receive complementary crotchet needles and 5 gift certificates to the nearest shuffleboard parlor in a parting gift bag. The theory is that exercise strains and tears the heart muscle (just like you would strain you muscles at the gym) and for 99.999% of the population this is a very good thing. The heart rests and adapts itself so the muscle is stronger and more efficient for the next bout. In a person with ARVD, it is thought that the muscle tears are not rebuilt, but rather replaced with the dreaded fatty tissue. Heart functions are compromised as it cannot pump blood efficiently and oxygen is depleted from the cells. The circulatory system struggles with the inadequate cardiac performance causing shortness of breath, fainting, and sometimes sudden cardiac death. While the fatty demise of an ARVD heart is currently inevitable, it’s thought that exercise will increase the speed at which the fat takes over and commands the ship. Patients with ARVD can choose to have a ICD implanted to control any arrhythmias which can increase the chances of SCD. The prognosis of someone with ARVD can be quite good. Catching it can reduce the possibility sudden cardiac death and one can live a long life with ARVD, provided you slug though life at a miserably slow and sedentary pace.

     Diagnosing ARVD is difficult and is changing as more is known about the mutation. It’s thought to be genetic and part of the Task Force Criteria includes screening for known genetic sequences associated with ARVD. Unfortunately, a positive genetic test is only prevalent in 50% of the known cases of ARVD. Other factors are similarly vague with plenty references to ‘sometimes’, ‘could be’, ‘sorta’, ‘if this and that then maybe’, and ‘flip a coin’ in the medical journals. (Actually the journals phrase this slightly differently, but it would be more entertaining if they adopted my nomenclature then the silly medical acronyms and shorthand). In response, a Task Force Criteria was established that roughly works on the ‘3 strikes and your out’ maxim. Currently, there are 6 criteria that you can either fail in a ‘Major’ or a ‘Minor’ way. After all the tests are completed, a diagnosis of ARVD is:

  • Definite: 2 major OR 1 major + 2 minor
  • Borderline: 1 major + 1 minor OR 3 minor
  • Possible: 1 major OR 2 minor

Although the criteria could easily be confused with the rules to an obscure children’s game, it’s about as scientific as one can get in 2014.

     My score was 3 minor – borderline but not definite. I don’t have any of the classic red flags such as fainting or a positive genetic test and my ECG and cardiac MRI do not point directly to ARVD.

     I’m still in the game, standing at the plate, but the count is full. I was able to bike more this winter than the previous 2 years and spring riding has been going fairly smoothly. My cardiologist has dismissed the idea of diagnosing me with ARVD as he correctly followed the Task Force Criteria. He presented me with the idea of traveling to see one of the 3 doctors in the world who focus on ARVD and I’ve decided to sling a bindle over my shoulder and follow the Yellow Brick Road to Johns Hopkins in Baltimore to get some answers. In addition to going over all my past tests, I’ll again be spending 2 hours trying not to move a muscle while holding my breath in an MRI tube followed immediately with a full-throttle stress test on the treadmill. Now that I think about it, this seems rather taxing on a normal heart. The appointment is Friday. Anyone seen my oil can?

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Once, we pedaled…

Lucien Buysse, 1926 during the 326km mountain stage up Aubisque, Tourmalet, Aspin, Peyresourde.

Lucien Buysse, 1926 during the 326km mountain stage up Aubisque, Tourmalet, Aspin, Peyresourde.


In light of the recent drama surrounding professional cycling, many pros are wondering where to stand during the aftermath. Caught in the awkward space where they grew to stardom within a Petri dish of rotten principles and over-lookers who turned a blind eye that enabled dirty riders and teams to rise to the top, current pros are wondering which game the UCI is playing. Suddenly, most teams are touting cleanliness and moral righteousness while also producing new records compared to the dirtiest period in the drug infested history of pro cycling. We hold them up, look at them, say they are great, and place them on the mantle as a icon of what an athlete should be. Then a few years later they crumble under the pressure or simply admit to doping. The pants fall, the ceramic figures smash on the hearth.

So what really IS a “real cyclist” in the 2010’s?

Like you, I’ve pondered laboriously over the the testimonials that dig back dozen and dozens of years that expose our pristine sport as nothing more than a sideshow of politics and pharmaceutical engineering rather than the show we all really wanted to see of physical hardship and bicycle engineering. Exactly, when did we consign away our sport to people who could care less, who had never pedaled up a hill higher than on-ramp but who noticed they could spin their witchcraft to the benefit of those who wanted desperately to get faster. After all, these riders sacrificed everything just to get to “this point” where they realize they suck on the world stage. They’ve invested everything — their time, their friends, their money, their (other) career prospects… there is no turning back.

It’s like diving off an Olympic diving board 3 years ago and on the way down you sneak a peak during your normal routine and notice the blue water is really just a slab of concrete smeared with the blood of other cyclists. At that point… it’s a little to late to backpedal and physics isn’t on your side, so it’s better to continue the routine and make it look as good as possible.

You hit the concrete with the forum of a champion and instead of euphoria, you smash headfirst into sober pain. You pull out of the pool, dejected and hurting, but the ghosts of other recent cyclists congratulate you on playing the game. You are now in the league of the nouveau champion. You raise the flower bouquet with dispassion. People watching on TV say “you see, that’s why he’s a champion, he only knows how to ride a bike, not to celebrate”.

The problem is that these athletes rise to the top since they are the creme de la creme, but their celestial height that rises above all in training has an internal sadness once the penultimate feat is achieved. What makes this realization even more sad, is that the other athletes who were brushed away en-route would be ecstatic standing in that position in all joyousness. Instead, we get a water-down version of achievement that is hard to embrace and as this trend continues, the cycling fan perceives all ‘winners’ in this manner.

The melancholy is not news to cycling fans… most of us have known (and struggled) this notion for years where watching races must be chased with several liters of diluted salt and water.

The good news is that grabbing your handle bars and setting out for a ride is just the same now as it was a hundred years ago. The early heroes of cycling are our true role models… Amazingly fast, brutally devotional, and their only motivation was the love for the ride and the road ahead – not because they had a contract with Trek, Nike, Amgen, or Omega Pharma.

I often reflect on the Golden Age of cycling and then bump into a guy at the store with the yellow bracelet, Nike shoes, and ‘Just Do It’ attitude… I can’t think of anything to say to him. I get home, grab my bike, go on a ride and get honked and yelled at by drivers with ‘cancer awareness’ license plants with yellow bracelets around their wrists… clearly the average cyclist is not a champion.

and we keep pedaling through it all…

Gino Bartali, pro-cyclist who then turned his skill to help the WWII resistance.

Gino Bartali, pro-cyclist who then turned his skill to help the WWII resistance.

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Wolf!!!!

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.

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Part 2: We Fixed It! And you might die.

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.

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Part 1: Epicardial Ablation

On Sunday my wife and I drove down to Boston which was a story in and of itself with massive traffic jams and a flaming car explosion worthy of a box-office hit. We managed to use the GPS to our advantage to avoid the drama and arrived just in time to enjoy a nice Provençal dinner overlooking Boston Commons and the Public Gardens.

Boston Commons

Boston Commons

The stifling heat and humidity of the past week had finally lifted and Boston was calm and quiet as it prepared for the new week. Boston Commons In the morning I was slated for my 4th heart surgery in 8 months but this would (or should) be the penultimate procedure – an Epicardial Ablation.

After a quick check of vitals I was allowed to walk right into the chilly Operating Room and jump onto the table that would serve as my resting place for the next 6 or 7 hours. The atmosphere seemed relaxed as pop songs played in the background with one of the doctors doing a pretty good Rihanna interpretation. Another young male doctor of similar age to myself was austere by comparison and began calculating the exact placement of the conductive stickers on my chest. Shortly after, the anesthesiologist floats into my field of vision from overhead and within seconds the details and commotion of the room melted away under bright lights.

I awoke in a completely different atmosphere where I had difficulty seeing or talking and my body temperature was so high I thought I was going to implode.
Nurse: “How are you feeling?”
Me: “I’m… soo…. hot. I’m… soo… hot,” I slowly mumbled.
I was sweating profusely with an extreme thirst as if I had just completed a 100k ITT in the desert.
The nurse tries to make me a bit more comfortable.
Nurse: “Your wife is here.”
I immediately get a big grin on my face.
At least 3 or 4 nurses and moving around me making adjustments when one nurse pulls a 6×6″ towel out of my gurney/bed.
Nurse: “I don’t know how this got here,” she says to the other nurses as she holds up the towel.
Me: “Yeah,… I was.. doing dish-es,” I manage to say.

Of course I didn’t remember any of this (except for being crazy hot) but my wife told me about the towel incident 5 days later when we finally got home. I laughed for several minutes – clearly a fan of my own humor.

Once I cooled off, I was wheeled into the ICU where I would spend the next 3 days. It was spacious and since the ICU is setup for just one patient, my wife could stay as long as she wanted at any time of day. One of the first things they did once I was in the ICU was to put on some compression socks (which I’ve never tried before) but apparently that wasn’t enough as the nurse then put on a futuristic “boot” that covered my ankles and calves. Each boot was connected to 3 air lines powered by a compressor that would inflate the lower air chamber at the ankle, followed by the mid calf and upper calf. The massaging action took about 20 seconds and then the boot deflated and the same process would begin on the opposite leg. After I started to become more aware of my surroundings I said to to the nurse:
“These boots are awesome!”
“Really? Everyone hates them!” the nurse replied.
“No way. It’s really pleasant. Plus, they are stylish. Can I take them home?” I asked.

Covidien Kendall SCD Sequential Compression System

Covidien Kendall SCD Sequential Compression System


I would wear the storm trooper compression boots for 3 days straight.

Strangely enough, just about everything hurt except for my chest. My upper back and shoulders were in immense pain. The nurse thought that it could have been from the position of my head during surgery, but the pain was so bad I could only imagine that the doctors were playing a sporting match of soccer with my head in between the steps of the procedure. Additionally, my throat felt as though I had been swallowing gravel off the pitch. I was already on morphine but the pain was still hard to handle at times. I usually felt the best about 20 minutes after a fresh injection of morphine but once administered, I couldn’t get any additional pain medicine until in wore off 7-8 hours later. During a period when I was feeling better, I peeled back the covers and had a look at the damage:

Epicardial Ablation Aftermath

Epicardial Ablation Aftermath


Later more leads and ECG stickers would be added but the main area of interest is the coiled up section of tubing. This is basically a drain that allows blood to be removed byway of a pigtail catheter from within the epicardial sac due to the trauma caused by the procedure.

The entire post-operation recovery process would have been largely pain-free were it not for the entourage of technicians that would creep into my room every 4-8 hours to drain any blood using the pigtail catheter. Usually I would be feeling great but as soon as they drained the liquid, the pain would start. Each heartbeat was rough as it rubbed against inflamed areas once the liquid buffer was removed. However, the referred pain proved to be the worst with my back and neck in agony. One group of technicians who snuck in at 1am were determined to fill the 90cc syringe – which they almost did but afterwards each breath caused so much pain that it came with a chorus of moans and groans. DSC_1272The nurse had given me a fresh injection of morphine just 20 minutes prior so it was too late to upgrade to something stronger. It was 1:30am and I’d have to stick it out until the next scheduled pain medicine at 8am. After an hour of groaning, I simply fell asleep due to exhaustion.

A few times, the doctor who performed the operation came to check on me. A man of few words, he said that the procedure was a success in fixing the Ventricular Tachycardia and was glad I was feeling generally well.

By Wednesday afternoon things were looking up. They removed the stitches that held the catheters in place on my right leg (similar to the previous procedures) but this time they had a catheter up both the artery and vein in the right leg and stitched them into place. The left leg also had a catheter at one point but it was removed during the procedure. The trend continued as I slowly began shedding hardware. The pigtail catheter drain was finally ready for removal. I figured this would be painful since apparently there was a wire inside my chest to facilitate the draining and they keep the wire extra long “so we don’t lose it”. Yeah. The EP assured me that it wouldn’t be very painful.

The first step was to take off the large sticker that was covering the coiled wire on my stomach. They use a very strong glue (see the orange colored stain on my stomach in the above photo) to adhere it to the skin but it was almost impossible to remove. He asked the nurse if there was any of the “orange glue remover stuff” that he couldn’t remember the name of.
“Is it like that ‘Goo-Be-Gone’ that you can find at the hardware store?’ I asked.
“Pretty much! It’s orange… has a funny name…” he explained.
We finally tracked it down and removed the sticker.

After removing a few stitches that kept everything grounded it was time to get the wire out.
“Do you guys have any wire cutters?” the Electrophysiologist Technician asked the nurse.
“Clearly we should have stopped by the hardware store first,” I added.
Once we sourced the wire cutters, the fun began as he started to pull the wire out. The wire that he began to pull out appeared to be a 1.2mm stainless-steel (black anodized or DLC) derailleur cable.
Wincing, I ask, “Is that stainless steel?”
“Hmm, I think so,” the EP Tech says as he pauses then continues pulling.
I can feel the cable unraveling and snaking around my chest as it seems to be making a “zip”-ing sound as it grinds along a rib or two. A little over a half-meter of the cable is removed before we literally hit a snag. The pain is tortuous while he’s pulling and the visuals combined with the sensation is making me nauseous. A nurse who isn’t typically assigned to my room gets summoned in from the hallway to help out. After much pulling and prodding around, the meter long cable is finally extracted. I’m shown the cable close up:
“You see the large hook at the end? That helps to keep it in place. But you see the knot here, that caused the problem in getting it out,” he says.

I felt much better once all the hardware was out and by 8pm I finally got out of the ICU and moved to the ‘regular care’ cardiac floor.

By 4pm the following day, I was discharged and drove home with my mother and wife as I felt most comfortable driving in city traffic out of the three of us.

While the operation was a success it was the information we received just prior to being discharged that was the most confusing and difficult part of the entire week. [Read on here for Part 2]

Posted in Heart Arrhythmia | Tagged , , , | 2 Comments

Preparing for the big day…

Letting the final ride before surgery soak in.


It’s been a while since I last entered a sporting competition with any sort of training or ambition to “win”. I had to step down from these notions more than a dozen years ago. No one knew why, I didn’t know why. It was a struggle to wrap your persona so tightly around sports that envelope your health only to see it stripped away in a few months. Often you hear people say, “oh so how are you doing” or more aptly “how is your health?” I always found these questions (as any 20-something would) to be slightly rhetorical. “Yes, I’m great, my health is great. (what would you expect??)” Because I was active in sport I thought that health was a formulated decision. [Did you exercise today? Did you set goals? Did you eat healthy? Did you respect yourself? Rest enough? Sleep enough? Perfect!] Easy, right?

Turns out, sometimes it’s not so easy. The youth are so naive… which is why I’m sure these types of questions are asked. Sometimes you get whacked upside-the-head with something doctors like to call “idiopathic” issues. Despite all the science we know, the term “idiopathic” still exists for things that we cannot make a connection to the cause. It just “happens” to some people. Luckily, it happened to me. I say “luckily” because I’m very happy where I am and how things turned out. But I also know that sport helps me to focus. It grounds me. It lets me think. It let’s me find solutions at work. It let’s me dream. It let’s me struggle. It lets me wonder if I can make it home. And it lets me realize how great it is to have a place and family to return to. I suppose everyone needs a focus – whether its religion or a hobby or an escape so they can tackle everyday life with a clear conscience, fresh perspective, and new found energy. I don’t need to stand on any podiums anymore, but I need my own time and my own little “victories”. Even if that simply means getting home from a tough ride that I wasn’t sure I could pull off.

My recent heart issues have been up and down. Sometimes I can crank out a solo century ride and from afar it seems like I don’t have any health issues. This year, even on the best day, I still have to deal with my heart but I can mask it behind determination and will – fighting through it. I also have a keen sense of what to expect from my heart, what it can do, what it can’t do, and what it needs to avoid V-Tach so I can keep going. On a bad day, I can’t participate in leisurely sporting activities or even shovel snow off the walkway. That’s pretty humbling for a fit 34 year old and tough to deal with now… and if you extrapolate to future years.

So after 3 heart surgeries (Nov, Feb, Apr) which all failed to fix my Ventricular Arrhythmia (RVOT-VT specifically), it’s been determined that I might need a different type of heart surgery – one that is only conducted in a few hospitals world-wide (though it’s getting more common as demand and technology spreads). One of the first hospitals in the world to pioneer this procedure was Massachusetts General Hospital in Boston and due to my location, previous cardiologist’s connections, and luck of now living in New England, is where I’m headed.

While I’ve had 3 heart surgeries prior, they were fairly non-invasive. They simply select a big vein in the leg and can follow the “highway” all the way inside the heart where the cardiologist then burns areas of the inside of the heart that are misbehaving. After almost 20 hours of trying to find the “sweet spot” to burn, it turns out that the area may actually be on the outside of the heart – a very rare occurrence.

The previous endocardial (inside the heart) surgeries allowed me to walk out the day after and even bike on an indoor trainer a week later, the epicardial procedure will most likely be more involved – though it’s hard to say since there are not a lot of first-hand accounts available online to gauge the recovery time. It requires entering through the chest and piercing the pericardial sac. I’ve referenced another cyclists tribulations with Epicardial V-Tach surgery before and I’ll be reading this post in detail tomorrow night to get a mental grasp on what is to come. He does a great job of outlining the process with a serious tone that I certainly won’t do. Instead, I’ll likely rely on a lot of marginally funny humor mixed with a bit of real medical info to get through. Check this space or twitter (@waywardcyclist) for some pre-op jitters and drug infused post-op reactions which hopefully will provide some comedy to get you through your post-TdF Monday/Tuesday grind.

Posted in Heart Arrhythmia | Tagged , , , | 1 Comment

On The Road Today

Bridging the Gap

Bridging the Gap

Posted in Maine, Ride Reports | Leave a comment

She’s Not Wasted! … An Addict Emerges From Rehab

Trying not to go too much into detail but the Addict SL frameset that I rode throughout Europe for several years turned up stateside with a crack in the seat tube, originating from the front derailleur tab.

It sat in my basement, stuffed up in the rafters, for several months. I would often go down there and we both looked at each other… both of us in sorry states of our former selves.

Around the time that I was getting serious about fixing myself, I decided the Addict should also get back to enjoying life. So I sent it off to Calfee… one of the best carbon repair artisans in the business.

Calfee Delivery

Calfee Delivery

Of course it’s hard to say if a ‘repair’ is just a temporary hack to keep a frame going for a few more months, or if it actually delivers a clean slate. But after sniffing around (see photo) the repaired areas, it was obvious that Calfee takes ownership in their repairs since they are riders too. Tech savvy riders who know what it’s like to loose a frame and what it’s like to have a great ride.

Cyclists, and even more-so, the cycling industry, is very small in the grand scheme of things and these days outsourcing looks very good on paper. But there is just something about a Northern Frenchman handing you an installed 25mm tubular, or a clothing company on the Mediterranean that makes kit for the hot summer months, or a local bike shop giving mountain bike tire advice which is home to the nastiest single-track you’ve never been able to ride. Let’s face it. Our sport is 100% temps libre or in other words, just regular people trying to enjoy their free time as much as possible.

P1030670

P1030779

P1030673

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I’m always happy when people are even more into details than I am. As you can see from the repair, the Addict is fully ready to ride again, and one would argue that it’s even more refined than before – with the removal of the flashy ‘Addict’ seat tube logo and the derailleur tab is now fully painted and clear-coated (the derailleur tab is nude carbon stock from the manufacturer).

I tried to take into account all the very positive experiences with new products over the years, as well as look for areas where my current configuration could be improved. SRAM Red had a new iteration of shifters, derailleurs, and cassettes… my KCNC brakes have descended me down hundreds-of-thousands of meters, but I was sure a better brake existed. Sources for lightening my pedals have been dried up over the years so I was now back to stock. I discovered the 3T Ergonova bar several years back which is good for my strange proportions… but it’s not the prettiest bar in the bunch.

So…

3T Ergonova LTD

3T Ergonova LTD after the first pass of 80-Grit

Sanding in progress

Sanding in progress

SRAM Red Levers (Stock)

SRAM Red Levers (Stock)

SRAM Red Levers, tuned, sanded, and refinished

SRAM Red Levers, tuned, sanded, and refinished

Addict SL on the scale

Addict SL on the scale

 Finished

Finished

3T Ergonova LTD, minus the paint

3T Ergonova LTD, minus the paint

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SRAM Red Levers

SRAM Red Levers

It seems strange but actually my home-made bow-ties have much better engagement feel than the stock bow-ties. Quite happy with this.

Pedals with Ti Bow-Ties

Pedals with Ti Bow-Ties

MCFK Sub-5  Collar

MCFK Sub-5 Collar

Mountain-Ready Cassette (plus some hair-on-the-dog for good luck)

Mountain-Ready Cassette (plus some hair-on-the-dog for good luck)

Veloflex Extreme (holding air!)

Veloflex Extreme (holding air!)

Veloflex Carbon for the rear

Veloflex Carbon for the rear

Modified Fibre-Lyte back plate on SRAM Red

Modified Fibre-Lyte back plate on SRAM Red

Rear Derailleur modified with Hex limit screws

Rear Derailleur modified with Hex limit screws

XX-Light pulleys

XX-Light pulleys

KMC DLC Black Chain

KMC DLC Black Chain

MCFK Saddle & 350mm Seatpost

MCFK Saddle & 350mm Seatpost

Gravitas Brakes

Gravitas Brakes

And full-bike glory:
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Flat-Lander Sibling

Flat-Lander Sibling

Zipp VumaQuad, although the new SRAM Red is a nice alternative now

Zipp VumaQuad, although the new SRAM Red is a nice alternative now

Tune Cages

Tune Cages

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Trying to Be the Good Guy

Early on my ride today I spotted an iPhone 5, literally dangling off the side of a bridge about to be pushed into the ocean or trampled by a car. I picked it up, put it in my pocket within a protective plastic bag next to my Xperia and continued riding for 4 hours.

When I got home I looked at the phone, it had a big gash on one corner, obviously left on the top of a car by mistake and catapulted off once it hit a good speed. What does one do with a dead iPhone? My thought was to charge it and send the owner an lovely email.
So that’s what I did.

iPhone owner  from Yarmouth gets a nice message.

iPhone owner from Yarmouth gets a nice message.


No message from the owner but I figure they may contact me once they get around to it.

1.5hours later 2 armed and bulletproofed policeman arrive at my residence wondering if I have an iPhone.

Female Cop: “Do you know why we are here?”
Me: [Opening the door] “No but I’m sure you’ll let me know. Come on in.”

I’m missing the rebroadcast of the Tour de France Stage 1 but we all know what happens with the Orica Green-Edge Bus right?…

Female Cop: “We’ve got a report that an iPhone is missing and the husband is here tracking you with GPS”
Me: “Oh so they saw my 85 mile route? (Nice no? At least 4 lighthouses, Kennebunkport, Biddeford Pool, Scarborough).
Cop: “Yeah, and then it tracked to this address”
Me: “Yup, because it died on my ride and I just plugged it in so I could email the owner (nicely, without guns).
Of course I hand the phone to them and say “but she should check her email, we could have done this more civilized.”
Cop: “Yeah, well I know how much I rely on my phone so I can relate”
Me: “Oh, … I have a pay-as-you-go Android so it’s not life or…” I look at the male cop for backup, he’s no help.
Me: “Ok well have a nice night.

[My sleeping wife yells from upstairs]: “I told you that you should have left it so it got run over!”

Now I have to deal with my wife and the humility of having cops show up to my front door. Lovely.
Still no response from the iPhone owner (she has my #, but I didn’t look at her’s since that’s creepy).

Apple GPS: 1
Bulletproof Cops: 1
Husband tracking the phone with the GPS app: 1
Guy who saved the phone and charged it up: 0

Lesson learned America. Thanks for the tutorial.

Posted in Ride Reports | Leave a comment

Specialized S-Works Shoe Review

2013 Specialized S-Works Road Shoe

2013 Specialized S-Works Road Shoe

I determined that my Sidi’s were not going to last another season and thought the S-Works would be a nice return to innocence. After all, the Specialized “Pro” model from 2000 was my first real road biking shoe. Around the turn of the century, Specialized was advocating a different type of bike-wear product. They worked with scientists, physical therapists, kinesiologists and tried to create new products that looked slightly weird and different, but touted (and justified) the new products as a better fit than anything they’ve ever used in the past. They called this ‘Body Geometry’. Those old pair old first generation ‘Body Geometry’ shoes that I probably purchased from around $150 had such a nice insole that when I got a new pair of shoes I decided I would keep the insole. Then I wore out those shoes and portage the insole to the new shoes…. a trend that continued to today. I don’t know exactly how many miles, km, or watts have been pushed down on them, but it has to be somewhere over 60,000 miles.

Specialized has been pushed into a bad spot this year after they thought they could count on a Chinese manufacturer to produce their top-end road shoes. The same shoes that would be used in the Tour de France and by discerning customers. The first batch turned out ok, so Specialized was able to put the 2013 S-Works Road Shoe out to market around September 2012. Sometime around November or December they were impossible to find in the US. The trend continued through the winter… and the spring.

Turns out, China was up to their old tricks of turning out the best possible initial quality, then following up (once contracts and mass production ensues) with mediocre quality. I was disappointed to find it impossible to find an S-Works shoe after searching for over 6 months… but I applaud Specialized for seeing the mediocre product and determining that it wasn’t good enough. In my head, there is a corporate meeting at Specialized where they have the sloppy Chinese shoe in hand, and they say “Can we charge $400 USD or 350 EUR for this?” Only the imagination can say what came next, but apparently Specialized turned back the order from the manufacturer while customers waited, and waited, and waited.

Dear Specialized,
Are you having a good experience with Chinese manufacturing your top end shoe?
Saving money, though. Nice! China gets the product to the consumer just the same as USA, France, or Italy. Right?
Oh.
Awkward.
I'll step away now.

So I got my hands on the 2013 Version 2 shoe, after they denied the second batch from China. It’s a nice shoe. It’s very light, which is partly why I purchased it over other shoes. Some have said that it feels fragile. I think any light shoe will “feel” fragile. But bits of durability in the right place can go far. Looking at the shoe, I noticed that the toe bumper was very subtle. Experience tells me that a big toe-bumper is good thing.

Next is the heel cup. It feels fine riding. Very good infact. But my old Sidi’s have a plastic heel cup and it’s full of crazy scrapes and gouges. The outer heel cup doesn’t feel as robust as a Sidi shoe, but it’s hard to tell if that is a long-term issue.

S-Works Road Shoe Heel

S-Works Road Shoe Heel

The BOA system is really awesome. I’m a big fan already. It does have a shelf-life, but apparently it’s easy to replace and very light compared to strap systems. I’m also thinking that my next MTB shoe will certainly be BOA. Sure, road bike shoe velco may dislatch from time to time, but mountain biking in the mud pushes the limits of velcro. Since laces cannot be adjusted on the fly, the BOA system seems ideal.

Specialized S-Works BOA System

Specialized S-Works BOA System

Looks.
We’ll start the least interesting part. I ordered the black/white version only because the red/white version reminded me too much of blood, or lipstick, or roadkill, or fresh roadkill with lipstick. Hard to say. The black/white version has a big black streak down the middle of shoe. I think it probably looks fine from afar and maybe it’s because I’ve had white shoes for so many years… but I didn’t like the black highlights. I also smelled a fresh skunk on my first ride… maybe because it thought the S-Works were a posh relative.

Size.
Specialized, and most notably several forums, say that you should order 1 EU size down for the newest S-Works shoe if you are coming from Sidi (or perhaps another brand). I tried going 1 size down and it wasn’t even close… way too small. In the end, I ordered the same size as my Sidi shoes and it seemed like a good fit.

Weight.
Yup, these are some light shoes. I did a lazy 62 mile ride in 3hrs 2 minutes and was feeling bad from the start but I did notice the weight. At over 400 grams lighter than my old Sidi shoes (Genius 5.5 or something) it was most noticeable on acceleration.

S-Works Shoes Weight (42)

S-Works Shoes Weight (42)


Fit.
Footbed Size: S-Works vs Sidi

Footbed Size: S-Works vs Sidi


The footbed is tiny. Think ballerina shoe. Think European ballerina. Oh wait. Come back. Yes, it’s svelte but I don’t have wide feet and they are very low profile too. I’ve been using 2 footbeds in every cycling shoe to date just to raise my foot to the appropriate level. Maybe this could be good?

Fit – Footbed and Insole.

2001 Pro Body Geometry vs S-Works 2013 Insole

S-Works 2013 vs 2001 Pro Body Geometry Insole


I have flat feet. It’s generally not an issue but the lack of arches can get one out of a wartime draft so I’m sticking with them (you never know). The old Specialized footbeds worked well for me. I really liked the raised section in the middle of the foot just before the toes. As long as I don’t have any ankle swelling this insole is great for me. However, the newer S-Works insole has very little raise (if any) and it’s also pushed back onto the center of the foot.
Specialized Pro Body Geometry Insole (2000)

Specialized Pro Body Geometry Insole (2000)

Specialized S-Works Insole (2013/2014)

Specialized S-Works Insole (2013/2014)

The Ride.
It was apparent early that the narrow footbed wasn’t working for me. It felt as though the shoe was trying to take something flat and form it into something tubular.

The Wrap Up:

S-Works Carbon Sole

S-Works Carbon Sole


I realize now after seeing the S-Works design that my flat feet make me a bad candidate. The quality of the unidirectional carbon sole is great! The upper material is very supple but the BOA system keeps it from being flexy. Both big wins! Some companies have better systems to prevent damage to the shoe with plastic outer heel cups or bigger toe bumpers but for riders who don’t have issues with heel rub on the chainstay or bump toes from time to time. The 2013 S-Works shoe (or is it the 2014 shoe now with the difference in manufacturing?) it’s an exquisite shoe. If I had arches… I’d order a second pair.

The Verdict:
I’ve decided it’s not the shoe for me. Although I hate the look of Bont shoes (they look like little boats don’t they?) I think that’s where I’m headed. The ugly flat shoe for the ugly flat foot seems like a “Beauty and the Beast” story ending so thats where we’ll leave it.

P1040155

Posted in Equipment & Parts | Tagged , , , | 5 Comments

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 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

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

Posted in Heart Arrhythmia | Tagged , , , , , , , | 2 Comments

Fixing the Pump… 2eme Etape: Focusing, Fidgeting, and Fiats

Last we left off, the process of a simple cardio ablation was covered and although it’s an amazing procedure pioneered in the last 20 years or so, it really is a simple procedure for the patient. If you’re reading this blog and fretting about your first ablation, don’t be. You’ll be up and at ‘em in no time. This post will focus on what happens after the surgery and you get up and at ‘em, but you heart is still “broken”.

I had heard it was possible to experience arrhythmia shortly after and ablation. After all, it’s not used to being burned from the inside. I took it very easy after the ablation, but did a short hike with the Mrs. & the puppy about 5 days later (I got dropped). About 10 days after the surgery I tried riding the bike indoors with my Tacx Genius. After 1 minute 50 seconds I went into full V-Tach with my heart rate skyrocketing over 210bpm. A few days later I tried again, this time lasting about 4 minutes into the San Sebastian ride before I went from 120bpm to 210bpm. I stopped immediately , put away the trainer, took a shower, got dressed, and did some work on the computer but I was still in V-Tach around 220bpm for 90 minutes.
Tacx Session
After this episode, I decided to try the beta-blocker my doctor prescribed as a preventive. I tried the trainer again and actually got a full 2hr+ ride in. However, no matter how hard I pushed, my heart rate was usually around 100bpm and if I really suffered I could get it up to around 120bmp. I ended the trainer session not from fatigue or demotivation but from bordom. Even though my wattage was fine, the subdued heart rate also subdued all those great hormones that make you feel good about exercising. Turning the pedals never felt like such pointless work.

Still thankful that I can remain active I tried riding the Tacx trainer again on beta-blockers. The result was the same but I was prepared for the sensation. I struggled to hit 100bpm. Then suddenly I went into V-Tach at 210bpm… while on beta-blockers! It’s my opinion that all good things in life happen between 100 and 200bpm so skipping over the good stuff is… well… again pointless. So I stopped taking beta blockers. They didn’t stop the V-Tach, and without them I could at least ride for a small amount time in a normal HR range.

The second ablation was approaching in late February, about 14 weeks after the first ablation. The cardiologist cited that the combination of being conservative and discovering that my “athlete heart” was a little larger than he assumed meant that he would be a bit more aggressive and informed this time around. I learned a few tricks after the first ablation as well. I had no problems with the incision on my right leg and felt fine throughout… except for one thing. The worst part for me was the urinary catheter. As soon as I woke up I was wide-eye and beging for it’s removal. I learned that lesson and tried to be a dehydrated as possible going into the procedure this time. Wise? Healthy? Probably not. But they do tell you not to eat or drink after 7pm the night before anyway, so whats a few more hours of fluid abstinence? The other improvement on the second procedure was that my cardiologist learned the nuances of my arteries. Apparently, he struggled during the first procedure to enter the artery in my right leg because it was so small (sounds bad right?, but I guess it’s typical with younger folks and active people and probably isn’t bad) and the second challenge was that the artery and surrounding area was constricted by the large amount of muscle mass in the upper thigh (Sartorius and most likely the Abductor Logus) The incision point was quite swollen and bruised after the first surgery as a result.leg-presses

For the second surgery, I arrived promptly at 5:30am and by 7:30am I was checked in, changed up, vitals checked, and transported to the cardiology waiting room. This is an interesting room at 7:30am because it’s a line-up of “Who’s Who” for heart operations during that day. In this hospital, there were about 7 bays occupied out of 8 total and the room was buzzing with interns, nurses, and other staff in the medical hierarchy that I’m not familiar. “Buzzing” is the right word because at 7:30am, they just got in no less than 30 minutes ago and have plenty of caffeine in their systems. I think I counted 30 blue-robed staff people for the 7 of us with busted hearts waiting for our mechanics. Who doesn’t have caffeine in their system? Me for one. Nor anything else. I was getting sleepy on the gurney in the cold room. I was the first arrival and got plenty of attention but once a nurse who was doing either paperwork or vitals said “You might want to take a nap, I’ve never seen a cardiologist get in here before 8:30am”. I had only slept a few hours the night before so the proposition was intriguing, but not congruent with my “let’s do it!” inner voice. I counted ceiling tiles.

My cardiologist is a really great guy and a fantastic doctor who had a few tricks up his sleeve for the second time around. He upgraded our OR to a different lab with different equipment and different computers. It was apparent when two new nurses (one with some experience teaching the other) how to administer the stickers on my chest. The stickers are for the mapping process and software to capture a real-time 3D view of the heart. During the first procedure I had 4 or 5 stickers, each about the size of a hand on my chest. This time… mega-stickers! There wasn’t a centimeter on my chest that didn’t say “3M”. #Sponsored. The larger stickers were used on the new upgraded OR mapping system. Things were different this time around.

I was then introduced to the young anesthesiologist with a southern twang and her side-kick as well as a half a dozen other nurses and technicians. I was losing track of names and even the count of the number of people that I was introduced to. At around 7:45am, my cardiologists arrives and extends a handshake. He’s outdoing himself by 45 minutes according to the pessimistic nurse but I expected him about now. We chatted for a while and then it was game time. I was wheeled out of the bullpen and on the way to the big show… and that’s all I know.

I awoke at around 3:30pm. My first thought… urinary catheter… none! Success!! Well, I did my little part anyway. Even after being awake for 30 seconds, I feel completely fine and together. Then I notice a projectile coming my way! My mom is sitting next to me and immediately thrusts a phone in my face after dialing a number. I put my ear to it. It’s ringing. My wife answers. In the conversation I say it’s done, I’m fine, feel ok and I’ll Skype her later when I get into my room. At least that’s what I think the phone call was about because 1 hour later I don’t remember talking to my wife. #Anesthesia

The incision on my upper thigh which they used to gain access into the heart was much better than before. It was clear that the cardiologist had adapted to my “weird” legs and arteries. To this date, he’s the only one who’s ever used the words “large amount of muscular mass” when referring to my legs.

I’m roomed in the cardio ward with another gentleman, about 82 years old. I have trouble sleeping just like the first stay but this time I brought earplugs and asked for some weak over-the-counter sleep aid (such as Tylenol PM). Still restless, I struggle with the IV in both my elbows, impeding on my slumber-style. Just when I start to doze off, a crash-cart rumbles into the room to take vitals on my roommate. Every 45 minutes. Finally, around 4am, I fall into the ..best …sleep ….ever.

1 minute later, I awake immediately with a jolt! My whole body is shaking… because the nurse is shaking me!
Nurse: “Are you OK?”
Me with bleary-eyes: “Yes… ahh, … yeah.. sleeping. That’s all.”
Nurse sounding very alert: “Well we noticed your heart rate was very low!” She starts to take vitals from the familiar crash cart.
Me: “Oh?”
Nurse: “Yes, 41″
Me: [raised eyebrow]
Nurse: “And.. it just went even lower to 37!”
Me: “Yup. 41 is normal, I’ve never taken my pulse sleeping but 37 doesn’t seem far off”
Nurse: “Oh…. Ok, we’ll keep watching it then.”

I never did get back to sleep fully.
Breakfast came around 7am and I felt fantastic. It was like I had been driving around a beat-up old Fiat and someone decided to upgrade the engine to a Lamborghini overnight. Everything was smooth! I didn’t realize how run-down I felt the past 2 years until that morning. My cardiologist arrived and said the procedure was long (about 7hrs) but at the very end they tried to stress my heart into V-Tach by pumping me with adrenaline for 45 minutes (that’s much longer than they usually do) and it worked perfectly.
However, as we know from before, the truth with cardiac ablations is not fully known until the weeks after.

We shook hands and I went home. Zoom, Zoom!

The next day, I was a Fiat.

Up next, 3eme Etape…

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Fixing the Pump to Drink from the Well… (a primer)

I’ve always thought health stories are a bit of taboo, like an old lady telling you about her bunions or gall bladder – it’s not a necessary or a desired story that most want to hear. However, I have found other blogs that depict the situation I’m in and have been thankful that they shared the information. Ironically, this cyclist has such a similar path to my own that it’s a bit eerie (although his is much more involved and complicated than my situation thus far). At the very least, finding and correcting this issue will lead to much more activity on this blog… which as you probably know has recently sounded more like a field of cigales rather than a flurry of freewheels.

After going to the cardiologist, I was given an “Event Monitor” which you connect to 2 electrode stickers on your chest. When you feel a heart arrhythmia, you press the button and it records 30 seconds before you pressed the button (constant 30 second buffer on the SSD drive) and then another 30 seconds after. I headed out on a few bike rides and tried to catch a few episodes:
HeartrakSmart

Here is what a normal ECG should be with a normal heart rhythm:
NORMAL EKG
__________________________
When my doctor handed me my ECG I actually mistook it for an old Calculus 3 cheat sheet:
IMG3

There are not a lot of ECG images like this online so I’m happy to share if it helps someone.

The sensation is quite unsettling. It usually starts with a missed beat or breath while exercising and after that, it’s off to the races! You feel a bit annoyed or anxious and in my case, the heart pumps such that you can easily see it just by looking at my chest, even if I’m wearing several layers of clothing and a very thick ski sweater. If I’m riding the bike, my heart rate monitor immediately ignores the rhythm and dismisses it as noise or some other technical problem since a heart rate above 210 bpm isn’t possible under normal circumstances. Sometimes, I’ll feel a flutter and hope that it’s just a little cardiac bump in the road, but then I’ll look down at my Garmin and it simply displays ” – – ” confirming that my heart rate is now somewhere above 200bpm. At this point, my power output drops from comfortably spinning out 300 watts to suffering at 40 watts in a matter of 1-2 seconds. This phenomenon is called Ventricular Tachycardia (or “V-Tach” if you want to sound cool).

You might think that with the heart beating so fast, the blood and oxygen being circulated through your system would be impressive. However, V-Tach beats are so fast that the heart does not allow enough time to properly fill with blood, so it’s pumping away with abandon while hardly moving any blood at all. Some people become very dizzy at this point but in my case it just feels like you took a sip of wine. Probably something strong like a nice white from the village of Beaumes-de-Venise which was the start line for

The Start in Beaumes-de-Venise

The Start in Beaumes-de-Venise

this ride.

My V-Tach episodes can last anywhere from 10 seconds to 90 minutes. For me, the 10 second bouts are insignificant and the 2 minute episodes are the most typical. I’m usually very happy with a 2 minute V-Tach run because it just requires a quick stop and then I can resume riding (or whatever I was doing) after that. It’s the 20-90 minute V-Tach runs that are really no fun. Standing around that long at 200bpm in an agitated state while you get cold and your muscles bathe in an ocean of lactic acid isn’t intolerable, but I can think of better things I’d like to be doing.

So what really is going on here?

After visiting the cardiologist, my case looks very classical and surprisingly common for people in their late 20’s to late 30’s. I was diagnosed with RVOT-VT, a type of Ventricular Tachycardia (VT) which originates on the Right Ventricular Outflow Track (RVOT) of the heart. This leads to the question that just about everyone says to themselves after the doctor sits you down with any diagnosis:

“Geez, what is that?”
“All these acronyms can’t be good.”
“I wonder what I did wrong?
“I bet it was that apple I ate yesterday that I forgot to wash before eating it. Stupid, stupid.” (facepalm)
“… or what if I ate the sticker!”

Turns out, RVOT-VT has no known cause and is ideopathic. It’s not genetic. It’s nothing you did, or didn’t do. To understand what’s happening, you have remember that biology class you had in grade school that you actually spent gazing out the window and doodling pictures in your notebook. Normally, with each heartbeat, an electrical signal spreads from the top of your heart to the bottom. As it travels, the electrical signal causes your heart to contract and pump blood. The process repeats with each new heartbeat. The problem with Ventricular Tachycardia is that a small spot in the heart misbehaves. It thinks it should be running the show, telling the heart when to beat. So now the heart is getting TWO signals telling it when to beat. It’s the biological equivalent of the current situation in Washington. The end result is complete gridlock, nothing gets done, but it sure looks like it’s trying hard.


So How Does It Get Fixed? Do Nothing? A Filibuster?

The protocol for “fixing” RVOT-VT is actually proactive with a catheter ablation procedure. Since all blood vessels are basically roads to the heart, the doctor generally selects a large vessel such as one in your upper thigh or arm uses it like a highway to the heart with several flexible catheters being pushed through until they finally arrive inside the heart. One catheter has a special electromagnetic tip and is used to first create a 3D image of the side of the heart that it’s in (Right or Left). Here are some images I stole from a few different internets:

Ablation Mapping

Ablation Mapping

1-s2.0-S1547527108006231-gr2

Next, (I’m not 100% sure on the order here or if my info is correct) but as I understand it, you are pumped full of adrenaline to try and trigger a V-Tach episode. The sensor can then report back to the computer mapping system which spot in the heart was sending the bad signal… it’s like purposely sending the children outside unsupervised to see which kid is the bully. The image created is like a heat map, with red being the area where the little bugger is hiding out.

Once the red spot is found, the doctor uses another catheter with a special radiofrequency tip that can burn the heart tissue if it comes in contact with it. I’m not exactly sure how the doctor is able to position this flexible string-like catheter in the exact spot, but eventually he does and once in position with the right pressure, he burns the heart tissue in that area to kill it. On the 3D map, these show up as little pink spots. Here’s my map, you’ll notice the misbehaving red area and the pink polka-dots where the catheter burned the heart tissue:
3D Electroanatomical Heart Map

IMG-sm

Typically the surgery lasts 4-8 hours depending on the patient. After it’s done, you have to stay in the hospital overnight for monitoring. To keep a close eye on your heart rhythm, they place 6 electrodes or leads on your chest, connected to a big beige brick and stick it in the pocket of your fashionable hospital gown.
DSC_0844Meanwhile, down the hall there is what looks to be a computer lab with a few people gazing into several computer screens for 24 hours straight, watching real-time ECG output of every patient on the floor. And boy are they quick when something goes wrong! I’ll talk more about this when I get into the specifics of my experience.

So that is the general idea.
Catheter Ablation, however, is not 100% effective. Just about any overview of the procedure will say “some people who have the procedure may need to have it done again. This can happen if the first procedure doesn’t fully correct the problem.”

And that’s where we’ll pick up next time.

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