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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.


Friday, July 25, 2008

Stage Two: ICD Implant: The Grim Details

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.

12 comments:

Ray said...

Craig,

This pains me man and I know for you it probably pains you more. Though knowing you and your great personality, it seems you are making the best of the situation. Sorry that I haven't been there for you in person - though you have been in my thoughts and prayers since I was made aware of your condition.

I hope you have a speedy recovery and that you adjust to your new life. Your passion for the bike is sure noted and I am confident that you will be out there again riding. Maybe not racing though, riding and enjoying scenery and life.

With love and friendship,

Ray Alba

flaxbone said...

Craig,

I am moved by your story and impressed by your courage. As someone who has sometimes had to restrict his exercise for health reasons, can I suggest yoga? You can do a very vigorous practice and never get your heart above 110. If you go to a class you don't like, try another one--there are practices sufficiently challenging to engage endurance athletes.

michaelcraig said...

It certainly makes tough reading. It seems as if the op has been a success. Knowing you I'm sure the alien will not hold you back from living life to the full. We are all rooting for you here. You have all the family's love and big hugs from Julia and Oona
Michael & Laura

Rich said...

I found your site searching for ICD surgery, something I just went through myself, but for a different type of heart condition. I'm 32 and was concerned about an ICD prohibiting me from doing the activities I like, and so far, 2 1/2 weeks out of surgery, I'm worry-free. I have a newer-generation ICD and it's thinner than ever, with a longer battery life than ever. Take a look at my recovery photo on the link below to see how far things have come with sub-muscular implants.

http://amyandrich.blogspot.com/2008/10/healing-up.html

Lisa said...

I feel your frustration. I was a 40 year old woman, thin and very active. I am a Certified Nursing assistant which entails a lot of lifting, I was diagnosed with Cardiomyopothy, and was put on meds, but later went into congestive heart failer and needed the ICD implant. I am thin so mine was very noticeable. With in a year of having the ICD I got a letter from Medtronic saying my modle number had faulty leads. Talk about feeling like a walking time bomb. My Doc set an alarm in it to worn me of mal function. About three months later at work the ICD ripped out of the socket it was placed in and free floated in my chest for about 4 more months, the pain of that was hard to take. My Doc then decided to move it, he replaced the leads and moved it to my right side in my chest, hooked it on my muscle, with in a week back to work it ripped again, he said he had no other place to put it, so I got a second opinion. Last Feb I had the first sugery to go from left to right, in July I had another surgery putting it behind the right muscle in my chest. and now 7 months later it has slid at least 2 inches and has turned side ways and it constantly pulls in pain and in my arm, I now have loss of circulation in my right arm and my hand is always cold and purple. I don't know if having this thing in my chest is worth all of the pain and surgeries I have gone through, I had to quit my job that I loved because it was to much for my body to take with this ICD. If anyone has any information for a different location it could be placed in could you please let me know? Thnks, Lisa Scott

werick58 said...

Craig,

I have HOCM (hypertrophic obstructive cardiomyopathy). I was diagnosed in April of 2006 at age 48. I had open heart surgery ( septal myectomy) at the Cleveland clinic to remove my obstruction on 9/11/08. Yesterday my cardiologist informed me that I will need an ICD due to my runs of V-tach as well as needing to take Coumadin the rest of my life. Quite a shock (no pun intended) to say the least.

I appreciate your candor and look forward to more of your thoughts!

Good luck!

Anonymous said...

Thanks for the write up bud. I've just turned 31 and am going in next tuesday for my ICD implant. I'm also quite slim so will be getting a sub-pectoral implant. I had a loop recorder put in and taken out previously and didn't enjoy the experience much at all. This sounds like it will be a whole lot worse, and I hope that sedation numbs me enough so I don't feel anything.

Neil said...

Hi Craig,

Thanks for your your very informative post on this subject. I had a subpectoral placement of an ICD 4 days ago and was hoping to ask you a couple of questions (though I don't know if you still read comments from this due to the fact you posted this 3 years ago.) Basically I want to know if you experienced the following:

1. Unable to get up from laying down to a sitting up position without help.
2. A very uncomfortable feeling that something is putting pressure on your collar bone.

I'm just worried about if maybe the ICD might of fallen out of place since the doctors didn't mention these things to me.

Thanks for your help
Neil

c2 said...

Hi Neil,
Luckily I just checked in on this much-neglected blog. As I recall I felt pretty immobile and vulnerable the first 48 to 72 hours post-implant, but things got better quickly. I don't recall having trouble getting out of bed, but I do remember having to roll over awkwardly and use my right arm to push myself up. As far as the collarbone sensation you describe, that seems odd for a sub-pectoral implant, the implant should sit well below the collarbone. If you feel it hitting the collarbone you may want to have that checked out. Mine is so low I can feel the bottom side of my ICD through my armpit.
Hope this helps. Best of luck in your recovery.
Craig

Neil said...

Thanks for the reply Craig.

I phoned up the hospital where the operation was done to enquire whether the pressure on my collar bone was normal. I spoke to a nurse there who specialises in ICD implants. Any way she said it's probably nothing to worry about as it should naturally fall slightly. I go back to the hospital for a check in 1 months time so she said we'd see what it's like then, and that if it still causing discomfort it will be possible to re-position it.

Thanks again for your help
Neil

EP in SO said...

Thanks for making the blog...
I'm on my fourth device (First ICD was implanted at 16). My most recent was implanted 6 days ago. I'm not an elite athlete, but am a competitive runner and mom of 3 (drug free natural deliveries.

Everytime I get a replacement device my doctor comments how difficult it was to remove. The upside to such a deep pocket (since the devices keep getting smaller), it is hardly noticeable or obtrusive once it does heal.

Good luck!

Anonymous said...

Hello,

My thanks go toa ll who contributed to this blog so I have some objective experience with this. Soon to undergo this procedure I am very concerned about its overall immediate impact upon me and its long term affects. Actually scares the hell out of me, but syncope, the root of my evil, along with other deconditioning of the heart is no pleasure either. Ironically, I was a mid-distance runner in my early years, later a competitive figure skater, and an avid skier. The irony is all these activities are healty and good well being activities. Finding my self, as others have, is more bittersweet than I care. Many thanks again.

Sam H.