Post-surgery round two -The ICD, where it's at...
I am currently five weeks out from my ICD implant and the thing still feels like an alien invader that somehow burrowed into my chest. There is much to talk about on the subject of the ICD -“Internal Cardioverter-Defibrillator”- and, I suppose; I have the rest of my life to do it. The alien in the chest is a permanent fixture. I’ll start with the surgery and the big question for those of you tuning in because you are about to receive your own alien: subdermal or subpectoral?
Thirty-six hours after my epicardial ablation I was carted back down to the electro-physiology lab for the surgery to implant my ICD. I received a Medtronic Virtuoso, a battery powered lozenge measuring approximately 3”x 2.5”x .75” and shaped like an asymmetrical lima bean. Its job is threefold: it paces the heart should it go too slow (this is not an issue for me), it attempts to pace the heart down if it goes into a fast, dangerous rhythm (i.e. ventricular tachycardia), and lastly it delivers a defibrillating shock should its pacing efforts fail.
The lima bean body mostly contains the latent energy needed to shock a heart back into action. Somewhere there is a small chip containing the device’s smarts, connected to a “lead”, which is a wire threaded along a vein and embedded into the heart muscle with a tiny screw. Depending on each individual’s heart condition one may need more than one lead. The whole thing is substantially larger than a conventional pacemaker, owing to the need to deliver big voltage to the heart (I’m not certain about the specific voltage, I think it is an ascending scale of shocks starting at 50 volts and going to 700, if anyone has more specific information please correct me).
Normally the ICD is placed in a pocket created under the dermal layer in a spot below the left collarbone. In my case I was given a sub-pectoral pocket, which sits under the dermis and the muscle and requires more cutting of flesh, more time in the operating room, and more recovery.
The subpectoral placement is an option I was not aware of until the day before the surgery. Through all of this I have been most concerned about the ICD restricting my lifestyle, specifically cycling, but also rock climbing back packing, etc. At one point I was planning to take a magic-marker to my chest and outline the location of the straps of my backpack with “do not put ICD here” instructions. That proved unnecessary.
The default positioning of an ICD is under the skin, beneath the collarbone. In this position the device is prominent, especially on smaller, skinnier people. In addition to the obvious aesthetic issues, a subdermal ICD is more easily jostled, tends to shift in its spot, and can be quite painful if accidentally whacked. There are also incidents of leads breaking or being pulled out. Basically a subdermal ICD is a constant reminder of one’s problem. It is also a liability for sporty types. It is less protected and therefore more easily damaged.
This image gives a good sense of just how much a subdermally positioned defibrillator sticks out. This is Gary Swain, an ICD recipient who climbs big mountains while waiting for a heart trasplant. His story here.
From perusing the ICDsupportgroup.org I discovered that many people are not even made aware that there is an option for ICD placement. My understanding is that electrophysiologists who do ICDs don’t like to do subpectoral implants because it involves more surgery and it is more time consuming. Electrophysiologists are not surgeons; their work rarely requires cutting people open, most of it is done via catheters and computers. So the bulk of ICDs are places subdermally.
Because all my work has been done at a large research hospital, the University of Pennsylvania, my electrophysiologist Dr. Marchlinski, does not do implants. They have specialists for these things. Mine was a Dr. Josh Cooper. There are benefits to having an ICD implant specialist. Dr. Cooper seemed almost anxious to do a subpectoral implant.
The surgery itself was a walk in the park compared to the epicardial ablation. It is done under conscious sedation. The operating room is similar to the EP lab, with almost as many nurses and technicians present as an ablation. I was given a local anesthetic and a heavy dose of sedative. Covered by a sticky blue sheet, including my face, I eventually fell asleep but I do remember feeling some painless poking around in my chest and something that I took to be cauterizing. There was some heat and a burning smell and I remember asking the doctor if they were making a crème bruleé. The whole thing took about three hours, the most time consuming part being the threading of the lead and screwing it into the heart. I imagine a one-inch wood screw.
Recovery was rough. I was dealing with both residual chest pain from the epicardial ablation, and this new source of discomfort: muscles that needed healing and an internal hardware that my body had to adapt to. That night my heart complained vigorously, in the form of PVCs and general ache. My left arm was restricted to minimal motion, not that I was able to move much anyway. I left the hospital the next day, but I didn’t feel very fixed.
In March of 2008 I began treatment for a potentially fatal heart arrhythmia whose cause was unknown. I was fit and healthy, having spent a good part of my adult life as an elite cyclist, much of it racing in Europe.
After 5 years of fence-sitting on the part of my doctors, I have been given a diagnosis of ARVD/C (Arrhythmogenic Right Ventricular Dysplasia / Cardiomyopathy). I lack the known genetic markers for the disease as well as some of the structural changes that accompany ARVD/C, and my condition has shown no indication of being progressive (yet).
There is a growing population of current and former endurance athletes who end up with acquired arrhythmias, and a diagnosis of ARVD/C. But by placing these athletes in the ARVD/C patient population, we are potentially ignoring the very real likelihood of an acquired condition, similar, but different, from ARVD/C.
This blog is written as a resource for athletes with acquired arrhythmias, as well as anyone about to undergo endo or epi-cardial ablation, or the implantation of a ICD. It is also written to help generate some critical mass of interest in support of further research into acquired arrhythmias in endurance athletes and others. Feel free to contact me through the comments page if you have any questions or wish to make a written contribution to this blog.