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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.


Wednesday, July 8, 2009

Racing with Hardware


A happy "ICD in competition story". The press tells us that this particular footballer had a "heart attack" but those of us with arrhythmias know this was probably just a virile run of V-tach. Thanks to Todd German for pointing out this link


Competing in a bike race with an implanted defibrillator was much less anxiety provoking than I imagined. But I was pretty nervous at the start line all the same. In races before my cardiac adventures I had become pretty blaisé about racing, I was immune to typical pre -race stomach butterflies. Twenty-odd years of racing will do that to you. Well, the butterflies are back. Starting a race was nerve wracking, and exciting. Not exciting enough to trigger any reggae heart rhythms though. My pulse was steady in the 70s as we were given the whistle.

The race was pretty much all out from the gun. The pack went nearly single file in the first mile and stayed that way for most of the first half of the race, averaging 28mph over the first 4 of 8 laps on the rolling six-mile Central Park circuit. Once I was warmed up this was perfect for me. My training has all been low threshold endurance and some controlled sub-max speed. Prior to the race I did zero training for sharp accelerations and zero efforts where I maintained a heart rate of more than 90% of threshold for more than 3 minutes at a time. The constant speed of the race eliminated the need to respond to sharp accelerations, but I sat above 90% for a long, long time, 22 minutes out of a 1hr45 minute race.

Which was precisely what I was looking for. Being forced to push myself at a steady race pace was eye-opening. Apart from the expected suffering my heart felt fine. By the second half of the race I was feeling pretty good. I was in no position to actually be a factor in the race, no attacking, or sticking my nose in the wind, but I was able to surf along just fine.

And that was pretty much how the race went: staying in the wheels, far enough towards the front to keep out of trouble. The pace calmed down for a few minutes here and there, but I never let my self get into a position where I needed to jump after an attack, I just let the pack swell around me and took my own sweet time circulating back to the front.

While cruising at 130bpm during one lull in the action I suddenly felt the tell-tale thumping of errant heart beats. My heart rate monitor went from 130 to 80 in about 5 seconds, then slowly regained speed to 130 again - over a 30 second span. I had never seen that before, usually my HRM spikes, rather than dips. I immediately put up my hand (the universal bike racer signal for a mechanical problem - usually flat tire) and drifted backwards coasting. But the thumping was over as suddenly as it came. I rode caboose for a minute or so and once I was sure that the anomaly was gone I accelerated back into the field.

After the weekend I "Carelinked" my ICD data to my doctor and was told that I had a five beat run of VT followed by several "salvos" of PVCs over the course of one minute at precisely that time of day. I was told not to worry, this was not a serious problem. Discussing the event we came to the conclusion that it might be a situation where my heart was responding to the new level of effort with some misbehavior that might die down once it gets habituated. I'm willing to buy that explanation, I've had similar experiences with previous up-ticks in training, but they were always confined to PVCs, not VT, however short.

Anyway, apart from that momentary scare, the rest of the race went smoothly. We came into the last lap and I wasn't sure what my strategy would be for dealing with the inevitable field sprint, the most dangerous part of most races. It is often better to stay in the top 20 in the lead up to a sprint, in order to avoid crashes as fatigued riders jockey for position. Either that or stay as far back as possible without risking getting dropped. I opted for the former, which can mean a constant fight to hold position in a frenetically circulating pack. But on this day everything was smooth, I sat in 10-20th position for the last 3 miles and when the final push to the line came I found the right wheels and ended up finishing 10th with no real sprint effort. In the sprint my heart rate did hit 171, the second high water mark of the race, but I never really pulled on the bars and gave it my all.

Apart from the minor mid-race heart weirdness it was a successful venture. The next day I was suitably exhausted but managed a 55 mile jaunt at a recovery pace. As the week progressed and I recovered, I felt a definite surge in PVCs. Riding seemed to be the thing that calmed them, and by midweek they were pretty much gone.

Next...to do or not to do?...race number two...

15 comments:

michaelcraig said...

Now I'm sure Craig. You were born to hanged!

andre said...

Hi Craig, Im Andy and have been an endurance athlete for 30 yrs...running mountaineering and bicycling. In 02 I started with PVCs. The symptoms were aggravating, so I had ablation # 1 with no success. In Sept 08 after a period of great fatigue I had # 2 of intracardiac RF...no help. So # 3 was at U of Oklahoma and worked for & months. Its back and most problematic is the decrease in contractility of my heart... Next step is epicardial as I dont want to die @54 in congestive heart failure.

xu9j2 said...

Andre, I went through VT ablation(both endo- and epicardial) at the end of June, 2009.

According to my EP doctor, the purpose of this procedure is to reduce the ocurrence of bad rhythms, and has no impact on the pumping efficiency of the heart. If anything, the ablation probably lowered my LV ejection fraction somewhat because of the cauterizing of active heart muscle cells. Back in April my LVEF was 35% and I felt fine. Nowadays, the heart failure symptoms are more evident. I am told I'll gradually return to my pre-op state.

I've been a longtime competitive rower and a road cyclist.

davejk said...

Hi,

It was great stumbling across your blog. Here's my situation in a nutshell: After no shocks from my ICD in 18 years, I've had two in the past few months, both while running. Interrogation of ICD was inconclusive as to whether cause was v-tach or elevated sinus from the exercise so I have a NIPS scheduled.
I'm a life-long runner and don't want to stop now, but am really worried about the shock. (Can't believe how brave you are to risk a shock while riding. When I've been hit running, it's knocked me off my feet.) Anyway, from your last entry, sounds as if you can monitor your bpm while riding. I bought a monitor but it wouldn't work because of interference from the ICD. Have you had that problem? What kind of monitor do you use?
Thanks much.

c2 said...

Hi davejk,
It's good to know you've been 18 years with ICD and without shock! In my case my ICD is set to go into ATP at 222 and shock if ATP fails. I am very aware of my heart and would probably feel 222bpm almost as soon as the ICD. As for HRMs, I use a Garmin with GPS (double advantage is you know exactly where and what time you have any VT, workouts are downloadable and mapable with the Garmin). I have never had a problem with interference from the ICD. I do get interference from passing vehicles occassionally and also from a particular wind-vest I wear when it flaps in the breeze, strangely enough. Other than that it works well. As I related in the post, the HRM actually drops beats when I'm having rhythm problems. I always feel the problem before the HRM, but its good to have nonetheless.
Good luck!
cc

Anonymous said...

Hi Craig,

I have a private running commentary I've been doing since before I knew what a blog was. My first V-tach was in 1980, 4 months after running Boston in 2:36, but it took until 1986 for it to be diagnosed. I was cardioverted 3 times in the summer of 1986, studied at the EP lab at UPenn, found to have myocarditis and an enlarged LV. (8 weeks on asprin and I was inflammation free.) They told me not to race dompetitively, but that exercising was good. Drugs were not too helpful, Inderal prevented me from running over 10 miles and quinidine did little. The Vtach episodes decreased in number over a few years and from 1991 to 1996 completely disappeared. In 97, they returned with a vengeance, 3 to 5 times per day all ended spontaneously. Another trip to UPenn for EP study and an endocardial ablation which they said was not successful and I had an ICD implanted and placed on sotalol. Over the course of the next few years, I was shocked 3 or 4 times, all due to the rate being set too low for the normal rhythm I could reach. Newer ICDs do a better job of discriminating, but in the last year, I had more real Vtach from which I was mostly paced out with only 2 shocks. Dr. said it was time to do an epicardial ablation. That went OK, and stopped the Vtach from being inducible. However, off the sotalol, the occasional SVT I had in the last year got worse. (An aside here, the previous year the ICD was replaced due to battery life and I got an infection, Dr. J. Cooper did the required lead extraction. The SVTs started the day after the extraction, but mostly my reports of them were not appreciated.) In any case, the day after coming home, a long run of SVT at about 180 BPM, fooled the ICD into shocking me 10 times before I could get to the hospital for some IV beta blocker. The SVT would not stop so another trip from Princeton to UPenn for a cardioversion. Back on more aggressive anti-arrhythmics (Rhythmol and Metoprolol) for the next 6 weeks during which I could not climb a single flight of stairs without needing a rest. Stopped the Rhythmol and felt much better, but SVTs returned (with the combo of being on a beta blocker and smarter programming of the ICD I was not shocked). Went from Metoprolol to sotalol, the latter has some anti-arrhythmic ability. Still had SVT, but much lower rate less than 170 BPM. At 10 weeks after the epicardial ablation, I am still hopeful of getting back to strenuous exercise, but runs of PVCs and SVT are still telling me to hold off for longer. Half-hour walks are about it for right now. I will be getting a week long monitor to record things so the MDs don't think I am nuts.
Dennis

Anonymous said...

i have v-tach and i used to play tennis nonstop. it was my one and only love.

Anonymous said...

Hi Craig ---

Thank you so much for a great blog! It's been a treasure trove of information for me and provided a lot of comfort through understanding the issues. I have a virus scar on my left ventricle, a St. Jude ICD, and I just got my first shock yesterday running after 3 miles (I've had the ICD for 1 month). I want to get back to marathon training (I'm 41), but I probably need a epicardial ablation. They could not induce Vtach (Sharp Green in La Jolla) but did take care of an atrial flutter during my only endo EP study & ablation. Question: Where are the best epicardial ablate centers? I live in San Diego. Where can I get effectivity statistics and doctor evals in this new EP area? Thanks kindly! Andew Haff

c2 said...

Hi Andrew,
Sorry about your shock. I actually just got shocked for the first time last week and it seems I will need to go back for more ablation work. I go in for tests this week. We seem to have a similar diagnosis but different ventricles. I am a big fan of my EP, and my last epicardial was pretty successful up to this point. I've been very active with no progression, my EF, VOmax, etc. seem to be the same as ever. My scar is large but static (thus ruling out progressive conditions such as ARVD), he suspects that the new VT is coming from a location on the old scar that has "come back to life". I will update this long neglected blog when I have some definitive news, hopefully after this week.
As far as epicardial ablation specialists, there are a few that I am aware of, but there is no real "clearinghouse" of information on this subject, and it is a highly specialized field and you will want the best. My best advice would be to do some searches in academic/medical databases -Medline, Pubmed or Proquest - the kind that are only accessible for a fee or at a library- and see who is writing on the subject and what names are most referenced. I have nothing but good words for my EP Francis Marchlinski at U Penn, but I imagine there must be others closer to you.
Best of luck,
Craig

Andrew said...

Craig ---

Sorry to hear about your first shock after the second epicardial. I had my first epicardial procedure this June 1st with Dr. Doug Gibson at Scripps/Green in La Jolla. He's using the latest Carto 3 system. This system is pretty amazing, giving the operator 1 mm, 3D locational accuracy for multiple catheters and they claim it significantly reduces fluoroscopic exposure time using this magnetic positioning capability. Make sure to ask Dr. Marchlinski about your current fluoroscopic exposure budget -- ablation procedures use a relatively large amount and there are risks with increased exposure. I was amazed that I had no pain around the trans-thoracic puncture site after waking up - Dr. Gibson used the same puncture instrument used to administer epidural anesthesia. So it's been three weeks now (I took a few Advils afterwards, but nothing stronger -- the worst part was yakking my guts out after 7.5 hrs of general anesthesia) and I'm taking longer walks now and itching to start a little cardio. My first check-up is this July 1st; I've had no V-tach runs yet. I'm on 25 mg Metropolol only. My scar is also big & static like yours (LV, some damn virus the probable culprit) and this last procedure laid down around 35 to 40 "red dot" lesions. I believe Dr. Gibson found only one major ectopic focus, but hammered a bunch of red dots around the scar boundary for insurance. I'm sure liking not being on Sotalol right now and just using the beta blocker . Dr. Gibson quoted me a 70% to 80% cure rate for my particular case. The problem is how do these Drs really define "success": 1 year from procedure without V-tach? a lifetime from procedure without V-tach? The literature is full of different "end point" criteria for success, some obviously adjusted to reflect better statisical accounting of the procedural success. Anyway, I'm greatly looking forward to hear about your next medical steps as you address your latest shock. Best - Andrew Haff

Jodi said...

Craig-
I recently came across your blog and it has been very helpful. I am 40 yrs old, live in the Philadelphia area, and have been battling idiopathic VT since 2008. I have had extensive testing. I had an endocardial ablation this past summer which was unsuccessful and left me with a pacemaker due to an error. I am looking into epicardial ablation at U of Penn, but I am very scared of another complication and the recovery. I would love to speak with you about your experience, I have so many questions. I can be reached at jodinchip@comcast.net.

Michael said...

I'm a 24 yr old male. Echo, stress test, stress echo, cardiac MRI, holter, and event monitors have all been normal besides "PVC's and a 26 beat run of ventricular tachycardia at 127bpms that self terminated
I also have came across some information about "Idiopathic Ventricular Fibrillation", and "Primary Ventricular Fibrillation" where it has occured in people with normal hearts, structural and electrical, with normal echos, holters, stress test, ep studies, cardiac mri's, so my question is how can one say that PVC's, and NSVT are benign in NORMAL hearts but they still have these cases of sudden death "v-fib" in people with NORMAL hearts???



I seen an EP today and he said that he thought it to be benign and called it Idiopathic Ventricular Tachycardia and I started asking questions and he said that just to be safe he wants to do an EP study next week. Can you explain an EP study? How safe are they to do? If he triggers a deadly arrythmia can they easily terminate it and keep me safe? What if he has to do an ablation, how safe is that? Just how benign is "Idiopathic Ventricular Tachycardia"? Can it develop into V-Fib? How bad is it to have a 26 beat run of v-tach?? Can you share your personal experiences and opinions? I also have been experiencing what feels like angina for about 2 yrs now and thats why I had the whole work up but all the test for that came back negative. ??



i also found on my copy of the cardionet report it says sinus rhythm with IVCD (Intraventricular Conduction Delay) and on the Diagnosis part it says (ICD-9): 426.9 conduction disorder, unspecified. sinus rhythm with IVCD shows like 3 different times on the report. and 3 different times had ventricular tachycardia 25 beats, rate 124BPM, all the v-tach reports had 25beat runs with the highest rate 125BPM. does any of this offer any additional info for this v-tach maybe not being benign? does the IVCD pose more risk to SCD or v-fib with since i had documented v-tach?



I found this article at www.orlive.com

The patient is a middle aged male who was resuscitated from a VF cardiac arrest. Extensive cardiac evaluation showed no coronary artery disease, normal left and right ventricular function, normal cardiac MRI, and no inducible arrhythmias at EP study. Frequent PVCs were noted on cardiac monitoring. An ICD was implanted dangerous if the EP wants to see me, right?? i have pvc's all the time and i guess that it what lead to the v-tach, they said from the echo that my heart was strong and normal. could this be an electrical problem, 2.could it be long qt syndrome that was never caught? 3.why would my heart be going into v-tach, its not normal?? i do notice after i drink alot of beer its worse the next day, 4.could that cause me to go into V-Fib? 5. is it more dangerous since i feel all the symptoms from it? i have very forceful pvc's. 6.what is a pvc's that occurs on a T wave, if a pvc occured at the wrong time could it kill me? please shed some light on this whole issue for me. THANK you so much!!!!!!!!!! i have a baby on the way and im so scared that these are harmful and i wont be there for him.

c2 said...

Hi Michael,
I'm not really able to answer most of your questions, but I can tell you that it seems your EP is doing the right thing. An EP study makes sense as it doesn't seem that they know what they are looking for yet. This could be a whole bunch of things, Supraventricular tachycardia (SVT), or Right Ventricular Outflow Tract Tachycardia (RVOT) are the first that spring to mind. It is good that you have a sense for the terminology and are doing your own research. That is the best thing you can do. Read everything you can, don't be afraid of scholarly articles. The more you show you understand the terminology and science the more your doctors will respect you and give you information. Act like a student, not a patient, ask informed questions.
You are lucky that your SVT is so slow, but that SVT coupled with a lot of PVCs could be a sign of something serious, thus the EP study. Check out the Johns Hopkins ARVD site for info on varying diagnosis of ARVD and RVOT.
In an EP study they have total control of your heart and can terminate any dangerous VT, but is unlikely that you will have any, given your history.
I would get a clear answer as to whether they would ablate if they found anything in the EP study. This is where you have to be careful. I might only allow an EP study until they can give you a clearer diagnosis. The trouble is EPs like to go straight to ablation while in an EPS because all the work is already done (patient prepped, catheters threaded in, etc.) All they need to do is "fire up the guns" so to speak.
Given your lack of definitive diagnosis you might want to demand EP study only.
Also, I would seriously try to get this work (especially any ablation) at a teaching hospital affiliated with a university, generally the quality of doctor is superior to smaller hospitals that might advertise a lot and have pretty waiting rooms and good food.
Best of luck, let us know what happens!
Craig

Anonymous said...

Hi Craig,
This is a follow-up to my comment from feb 23, 2010. After my endocardial ablation for V-Tach in Dec. 2009, I had some sustained bouts of SVTs that were inappropriately treated by my ICD (in place since 1997) with shocks. By Feb I was still having some SVTs, but reprogramming of the ICD and a slower rate combined to avoid any shocks. I decided to rest until July and resumed training then with first walks then runs (albeit at less than 1/2 the speed of my 30 y.o. 10-K racing pace. (I'm now 64 but it is still a big decrease.)
In any case over the course of July through November, I gradually increased the training and the bouts of SVTs became less common, only 1 so far in December compared to every other day in July.
It has been over 30 years since my first bout of Vtach and 24 years since accurate diagnosis. There have been periods years when things got worse and periods of years when things got better. In particular from about 1990 through 1996 I had no V-tach. It was only when the episodes resumed in 1997 that I had an ablation and an ICD implanted.
Unfortunately, I am told that this sort of uneven progression is not unusual. But, of course, I am hoping that the latest ablations really did fix the Vtach permanently. Time will tell.
Dennis
Dennis

Anonymous said...

Craig, your story was interesting. I am 56, in my early 40's I was doing a 5-K race, about a 6:30 pace, and I got a pain in my chest. I slowed down and finished the race. Since that day when my pace gets fast, 7:00 to 7:30 now that I am older, I get the same pain and must slow down. Last year I decided to try getting my pace back up after I had the pain and slowed for a while. To my surprise the pain never came back. So now when I race I let the pain start, slow down, then ramp back up.

The reason I am even reading your blog is that last week my sister, about 44 yrs old, was found slumped over her desk. Luckily she is a nurse and works at a clinic. The crash cart was just outside her door. She was told it was V-Tach and is getting a defib installed this week. She is not a running enthusiast and has only done limited types of working out in her life.

I guess I am curious about the pain you felt. Also last year I bought a heart meter with the watch you wear to check your pulse. When I got to about 130 bpm it stopped working. I assumed it wasn't working properly. Then I worked out at a local college that have stationary bikes with grips for checking your pulse and they did the same thing.

Now I am can get up to 140 bpm before the pain hits.

I am assuming if V-tach is what I have then it must be a milder version since I have been racing for 15 years (did a half-ironman two years ago). As long as I don't push to hard I never have any pain.

Jeff