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’
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.

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.

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7 Responses to The Road Ahead….

  1. Dan says:

    Can’t tell you how thrilled I am to read that you’ve made it here and that the light at the far end of your own figurative Col du Galibier tunnel is nearly upon you! Sounds like you’ve made the right choice. Look forward to seeing your rides begin to crop up again on the social media space we jointly inhabit!

  2. thewaywardcyclist says:

    Thanks Dan, looking forward to ‘seeing’ you too and getting back at it in some capacity! There are more Cols to be climbed!

  3. oreoowner says:

    Glad to hear you are doing well! I am 29 and also diagnosed with a degenerative genetic heart problem-identified only through genetic tests since I only have slow & fast heart rates, however am told in decades heart will enlarge slowly. Luckily I found great doctors in NY who are very good. If you ever want to talk to people about ICDs, heart conditions, etc there are GREAT support/chat groups on facebook where people talk daily about different types of ICDS and their conditions. I am told I can pretty much do whatever I want except can’t do 30 mile marathons and lifting over and over heavy weights, which would strain the heart and speed up the process. Not the best thing to be diagnosed with something like this while we are young, but better to know now, before it’s too long gone. Now we have ICDS in case we ever need them (hopefully we don’t), and are watched carefully. Live life!

  4. bedwards1000 says:

    Hey “Wayward”, good to see you back. Your name is at the top of most of the leaderboards in the areas I ride so I clicked through to your blog. I was sad to see the abrupt end this spring to a sport that you obviously have a passion and talent for. We rode up Douglas Hill yesterday and saw your name on the segment and was happy to see you were back on the bike.
    – Ride On
    The Candid Cyclist

  5. Bob says:

    Hi, I’ve got ARVC too 🙂 I’ve been diagnosed for 8 yrs now (at 39) and got my ICD (day one) after taking a little speed wobble in the 200bpm range. I’ve just had my second fitted. I hope you get adjusted to the ICD it really is a great help although not a get out of jail free card the biggest problem with ARVC that I can see is the repeat episodes where they just can’t get the darn thing to stop going so fast. You seem to have managed to stay ahead of the curve by remaining active, well done keep it up, the combination of medication and aprehension means alot of folks – like me have not taken enough exercise and gained weight.
    I’m very glad I saw your posts, it reminds me of the start of my journey and is an inspiration to get back in the saddle and lose a little – ok a lot of weight. Many Thanks.

  6. Steve says:

    You posted this article 3 days before my SCD (on the bike). I have the same unit implanted and so far it’s saved my life 5x.

    • thewaywardcyclist says:

      Wow Steve! That’s huge! Certainly a tribute to you noticing the issue and getting the implant as well as the technology behind it.
      So far, mine has been dormant since implant. I was pretty sure it wasn’t necessary after the epicardial surgery but it’s the life-raft that I wouldn’t otherwise have, so I’ll cruise around with it and enjoy the waters until there’s a call to arms.

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