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.

Sunday, April 27, 2008

I Wanna Be Ablated

The day after my treadmill blowout I was prepped, punctured and probed in a procedure known as catheter radio-frequency ablation. At midnight the night before I was not allowed to eat or drink anything until after the procedure. The whole thing seems pretty innocent, and if you peruse the 'net you'll find all manner of happy ablation explanations and stories. I've even read "geting (sic) wisdom teeth pulled is harder". My ablation, however, was epic.
There is probably a vested interest in making the procedure seem benign, hundreds of thousands are performed for all manner of cardiac anomalies, not just ventricular tachycardia. And it is a genuinely advanced, remarkable and relatively less invasive procedure, relative to, say, open heart surgery.
The electrophysiology lab is basically a specialized operating room. There were at least 15 large, flat screened monitors, including a bank of four perched on an arm above the operating table. The CPU power rivals NASA mission control. I'm wheeled in to the sound of classic rock as three technicians and nurses prep me. This involves entry-point hair removal, a gazzilion leads and wires stuck to my front and back (including a defibrillator), and the application of several lovely warm blankets which unfortunately cool down way too quickly. The room is cold, in the low 60s, and little naked me got to shivering almost immediately on the operating table. Prep took a good hour, then sedation was administered and I was vaguely aware of some fiddling in my nethers followed by a sensation of strange worming activity in my chest as the catheters went in. Doctor Marchlinski came into the room and the classic rock changed to easy listening. I drifted off to Sade's Smooth Operator. When I awoke my heart was being run through the gears, electrically stimulated in order to locate the sites of my V-tach. The heart is "mapped" via this process. V-tach is induced and the errant tissue located. It is bizarre, you have no control over your body, your heart is riding up Alp d'Huez but the rest of you is stock still. Full consciousness is required to get a proper cardiac response, so once they started mapping and ablating I wasn't allowed any more drugs. Once the mapping is done the ablation is performed with another catheter, tipped with what I imagine to be ET's finger.
My sites were large and varied. It took 55 "burns", individual ablations, to finish me up. The whole thing lasted 7 hours. Some ablations were without any pain. others felt like getting stabbed from the inside. Early on Dr. Marchlinski discovered that I had a large site on the exterior of my heart. He tried reaching it from the interior by zapping the bejesus out of that spot. That is what hurt the most. I begged for some sedation and got a little reprieve. By this time my back had gone numb from lying there for so long and I was shivering with cold. When it was over I couldn't move for six hours while the entry-point for the catheter closed up. The whole procedure, coupled with the lack of ability to move and thus being unable to pee for a total of 13 hours was, to date, the most uncomfortable thing I have been through. I don't care what the CIA says, there is something called a "stress position", and it can be simply being strapped to a bed for 13 hours.


Sandra said...

Hello Craig,

I have just been diagnosed with
V-tach and am also an endurance athlete. (not quite at your level but I do like to compete within my age group)
I have been referred to an electophysiologist but haven't seen him yet. Just wondering if you have come accross any sites or info on treatment and success rates.
Thanks for all of your info. It has been interesting reading your blog because everything you discribed has mirrored my experiences.
take care

c2 said...

Hi Sandra,
Good luck with your heart. There are a number of medical journal articles out there on the web which have stats on procedure success rates. You need to get a firmer diagnosis before you start looking at treatments, but anything to do with ARVD, LongQT, might be illuminating...

c2 said...

Hi Sandra,
Good luck with your heart. There are a number of medical journal articles out there on the web which have stats on procedure success rates. You need to get a firmer diagnosis before you start looking at treatments, but anything to do with ARVD, LongQT, might be illuminating...

Jenn said...

Every time I exercised I went into V-Tach. I had an ablation as well. However they entered thru my jugular vein, femoral artery and 3 groin locations. My experience was similar to yours, except I couldn’t move my neck or leg afterwards. Plus there was a ton of blood in my hair from my jugular vein puncture! I was told that Ablations of ventricular tachycardia in patients with otherwise normal hearts can be permanently curative of the arrhythmia. Patients with "normal heart" VT once ablated are considered cured of their VT. This type of VT is relatively rare but ablation success rates exceeding 90% are often seen in patients like me. So far, I haven't had any recurring v-tach episodes.

Anonymous said...

I had an episode on 9/21/09, my heart went to 280 bpm on the way to the Hospital they couldn't convert me with drugs so they shocked me back! I hope to never be shocked again while con chance. They sent me home that night and the next day went into vt again and passed out on the couch, my wife was there and grabbed my ankles and pulled me off, when I hit the floor that converted me back. I still went to the Hospital. I went through a lot of tests, (eco, eco stress, angeia gram. Went through an ep study and couldn't find anything. Figured I had only gotten of the beta blocker for one day. A few months went by and went in for another ep study with no beta blocker for 7 days. This time I lit up like the fourth of July. He ablated two large areas in my lower left ventricular on 1/21/10. I was on channel blockers for 11 months and no episodes. Now I am off the drugs with no problems. Hopefully this is it. I am back to normal activities, baling hay and cutting fire wood. Jim

Unknown said...

I had v tach that came on suddenly, I kept getting light headed this lasted for about 3 months. Then on a routine dr visit I had a v tach episode and was sent to cardiac icu I was put on medication and later had ablation surgery. I still have episodes of light headedness but there farther between now. My dr said there was an area that he couldnt get to. This makes me wonder if Im still in the danger zone