Welcome

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, August 15, 2008

PVC Hell


an amusing explanation of PVCs and other arrhythmias, be patient there is no audio


By the second week in July, two weeks after my epicardial ablation and ICD implant, I was starting to feel functional. I went home from the hospital with specific, doctor advised “dos” and “don’ts” and some self-created “cants” “and won’ts”, mostly to prevent the ICD from shifting around in its chest pocket and the lead from pulling out or breaking inside the heart. These scenarios can keep you up at night, especially when you have a ghost sensation of the lead poking into your heart as I did.

I was told not to raise my left arm above my head, extend it behind my back or too far to one side, and lift nothing more than a few pounds. I was told not to drive for two weeks. The arm-moving moratorium lasted for six weeks and I was given a sling to wear at will if I felt I was going to forget. The sling wearing lasted a day or two, and after that mostly at night in bed to keep me from flailing around. When I felt good enough to go out I took it with me in case I was feeling nervous about being bumped into in the subway or on the street. The sling was a little sign that said “injured dude approaching.”

The sling also helps deal with the initial discomfort of the ICD. The whole arm/shoulder/pectoral area throbbed for many days and I enjoyed many Percocet. After a week I voluntarily kicked the painkiller, I was worried about getting too familiar with it and the pain had become tolerable. The ablation also left a residual pain in the chest like heartburn. It came and went randomly and seemed to be connected with the continuation of errant heartbeats. On leaving the hospital I was told to expect lots of PVCs for some time. Premature Ventricular Contractions are explained elsewhere on this blog, but basically the phenomenon -in addition to existing as a relatively benign cardiac anomaly- is a temporary byproduct of most kinds of cardiac surgery or other intervention. PVCs are the heart’s way of being cranky.

My heart was pretty damn cranky for many weeks. I had been given the same beta-blocker I was on pre-surgery, Metatoporol, to calm the heart down and lessen the PVC’s. But most days and seemingly every night I was plagued by bouts of PVCs. Often every 2nd or 3rd beat was a PVC; when translated into dance beats this equates to a kind of reggae-samba.

As I recovered the PVCs lessened, but when they were around they were loud and proud. At their worst they feel like a small caged animal thumping on your ribs, sometime the thump extends up the neck and throat. Other times PVCs are barely noticeable. In the right patient (i.e. me) a run of PVCs can deteriorate into V-tach and sometimes enough PVCs will actually feel like V-tach, particularly to a new ICD recipient who is paranoid about being shocked by the bloody device. All this makes for sleepless nights and panicked moments. I didn’t dare do anything too sprightly, no running up stairs, or for a train, no lifting heavy objects, and definitely no bike riding. On several occasions my girlfriend would lie awake at night, her head on my chest and remark “I don’t think you are fixed.”

Four weeks post-surgery and my arm was suddenly better. My range of motion was returning and my PVCs started to quiet down. That Friday I was in New York City and had run out of my beta-blocker and didn’t have my prescription. I was feeling good all the same and we went out to dinner and a movie. Some combination of heavy French food and Cote de Rhone and slacking on the beta-blocker suddenly made me light-headed. I slumped over onto my girlfriend and fully expected a shock from the ICD. Then as quickly as the feeling came it was gone. We left the restaurant and went to the movie where I slipped into a nasty run of PVCs that I thought was V-tach. It was enough to make me leave the movie, take a cab to the nearest CVS and down some beta-blocker. ( I now owe my girl friend two tickets to Man on a Wire and a coffee with Philippe Petit, who was in the theatre for a post-showing Q&A).

The experience shook me up, I assumed I had at least one run of V-tach that night. Monday I got an appointment with my electrophysiologist for a reading of my ICD. The cool thing about the ICD: memory. It records basic information about your heart function 24/7 as well as any events that might be shockable, or almost shockable. I was sure my ICD was going to tell lots of stories about the depravity of my heart....

2 comments:

scttkrkwd said...

Stay strong.

AEFGHI Bremer said...

i hope you see how encouraging some of your progress seems from the outside! i hope you see some more concrete and pure signs of recovery soon...

keep us in the loop. we love you craig!

- aefghi