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.


Tuesday, September 23, 2008

World’s Toughest Fix



I am currently sitting in my home-away-from-home, the University of Pennsylvania hospital’s cardiac care unit, waiting to be released after another relapse of V-tach. There is a recurring add on the TV for a show called " World’s Toughest Fixes ". It’s a reality TV show where, I presume, some goatee'd neo-macho dude goes about fixing very large and/or complicated objects with a Leatherman. You can see where this is going, right? I am going to propose my heart for an episode of “World’s Toughest Fixes”.

When we last left our story.... I was about to go beta-blocker cold turkey. Operating under the assumption that my epicardial ablation had been a success, my electrophysiologist Dr. Frank Marchlinski ordered me off my meds starting one week before a final NIPS (Non-Invasive Programmed Stimulation) test, the test that determines if my V-tach has been eradicated. The beta-blocker I was on greatly reduce the chance of ventricular tachycardia, so in order to test whether my V-Tach had been cured I needed a heart clean of any chemical inhibitors.

After being off my beta-blocker for three days I started getting crazy palpitations - long periods where every other beat was a PVC. It was a Friday night and I was planning to do some long bike rides that weekend but the next morning the PVCs were so crazy I decided to stay put. I felt like I was having episodes of V-Tach but, after my last, clean ICD reading, I was doubting my self-diagnosing. Sunday I took the “what doesn’t kill you only makes you stronger” approach and went out on the bike for an hour and a half. I felt pretty bad but once my heart rate was up above 110 I no longer felt the PVCs. Later that week I learned, on a treadmill test, that my PVCs actually diminish when I’m exercising, although they never go away entirely.

Post-bike-ride the PVCs returned with a vengeance. I couldn’t concentrate and slept poorly. I held out and stayed off the beta-blocker until my Tuesday appointment at the University of Pennsylvania electrophysiology lab.

Tuesday’s first event was a treadmill stress test. On the treadmill it was immediately evident that everything I had been feeling was true. The PVC’s were massive, and there were runs of double and triple PVC’s, precursors to V-Tach. Then there was actual V-Tach. In the 12 minutes I lasted on the treadmill I went into V-Tach 6 times, but only for short periods, the longest run was 15 beats. By the last run I was up in the 150s and they shut the treadmill off. It was clear that my heart could easily be induced into V-Tach. It was clear that I was not fixed.

After the treadmill I was sent up the EP lab for the NIPS test. The NIPS test never happened. They were supposed to sedate me, and try to induce V-Tach with medication and pacing via my defibrillator. But by the time I got into a bed in the EP lab I was already in and out of V-Tach on a regular basis. I’d go into V-Tach for a few seconds, give a good hard cough (a V-Tach breaking technique I documented earlier) and then go right back into V-Tach. The episodes were slower than my pre-ablation V-Tach, mostly in the 140 to 180bpm zone. It was so persistent they kept a nurse by my side for over three hours while they figured out what to do with me. Clearly the NIPS test was redundant at this point.

I was given magnesium, and put back on my beta-blocker. From around noon to six I sat in a bed in the EP lab going in and out of V-Tach. Eventually I was sent up to a cardiac care unit for the night. On the CCU the VT persisted. The V-Tach was actually managable; under 180bpm I’m walking, talking and coherent. I found that if I moved around, coupled with my coughing I had some control over the V-Tach. This is counter-intuitive to most medical professionals who assume that V-Tach means immanent fainting, cardiac arrest and fun with defibrillators. My first hour on the CCU I had nurses running to my room every five minutes as my cardiac monitor alarms kept flashing “red alert”. It was reassuring to know that they were so on the ball, but in the end it was me who was reassuring them that I wasn’t about to die, and that I had some control of my V-Tach.

By 11 that night my V-Tach was fully under control and I was able to sleep. My beta-blocker dose was doubled and everything was under control by the following afternoon.

Dr. Marchlinski explained what he thought was the situation; the endocardial ablation back in April had been unsuccessful, as is generally the case with V-Tach, and the epicardial ablation I had at the end of June had not completely worked. It had seriously “wounded” the scar that was causing my V-Tach. Now my V-Tach was slower and less life threatening. But because it was slower it was also easier to trigger and harder to break. As the scar healed a circuit opened up which was again hi-jacking the normal “sinus” rhythm of my heart. And as the scar continued to heal the circuit was growing stronger.

With the V-Tach under control I was sent home on a double dose of beta-blocker, told to stay off exercise, and come back in a week for another stress test which would determine if I needed to be ablated right away or if I could wait. My school semester was about to start and I really wanted to do school right, no missed classes, no incompletes. I was eager to push any new ablation back as long as possible. My new goal: Make it to Christmas.

19 comments:

TOCQ said...

craig you are so strong...

RatherBeBiking said...

If only there were some way to harness this power and make you into a super weapon. Until then, good luck and I hope you don't miss too many classes.

john said...

Craig,

I've been reading your blog for a while now and I'm very sorry to hear about all the turmoil you've been going through. Are the v-tachs coming strictly from the right ventricle? Did they tell you that you might have 'Acquired ARVD' or any type of cardiomyopathy?

I'm an endurance cyclist as well and have been dealing with my own episodes of v-tach. The first 24-hour Holter showed 2 episodes of unsustained v-tachs and many PVC's. My electrophysiologist suggested that I may have 'exercise induced cardiomyopathy' or 'acquired ARVD'. I've been off the bike for 2 months and the next step is to do another 24-hour Holter exam and from there a possible EP study.

Please keep us posted on your progress.

John

c2 said...

Hi John, AEFGHI and co.
I'll do a follow up post soon, alot has happened in the past 3 weeks. Briefly, I don't have the "D" in AVRD, I have none of the markers for dysplasia, nothing genetic, and no structural issues at all. So my EP thinks AVRD is a mis-diagnosis. It could be said I have AVRC (cardiomyopathy) but he feels this is misleading too.
Your Holter readout sounds exactly like mine pre-diagnosis. Have you had a stress test on the EKG? That was what determined it for me. My EP saw things that no one else saw on the Holter and he was entirely correct. Good luck John, let me know what happens.
cc

Runner said...

Sorry to hear the ablation was not completely succesful, neither was mine. I learned that while doing a training and hving what seemed to be fireworks explode in my face. The ICD shock was not so bad, just surprising, and depressing. Since then I have upped my Beta dosage, and have been ok. I have been monitoring my HR carefully while exercising, and not letting it go above 120. so far no more shocks, but ot getting the type of work-outs I am used to. Next week I see the ep and will have the device interrogated. We will then see whether I have had short VT runs or slow VT runs, none of which was enough to trigger another jolt, or hopefully no runs (although I am pretty sure i have had some that didn't last).

I know this is no fun, but the alternative is worse. Keep on plugging. I plan to do the same.

Take care

Vincent said...

Hi Craig

I finally found you !


What news, your arrythmia diagnosis... Sorry to hear that.

This is Sika.
Writing from a good friend's google account -- Vincent is a journalist and is now on his way to New York, with a friend of his, a photographer named David. They're working on the current political and financial situation, and wish to interview a number of people in New York and elsewhere... They were asking me for contacts and I thought you might be able to guide them a little. Or maybe not.

Anyway, I wanted to get in touch with you. Do you have a new email address ?

My email is still the same, and I'd be happy to hear from you and hope all goes well in your architecture studies.

Cheers
Sika

c2 said...

Sika,
I tried to write you sikafa....at aol, yahoo and hotmail, they all came back. I don't remember what your address is! help!

Runner633 said...

Craig,
I too have a history of VT, going on 6 years now. I would love to talk to you about your journey and share what has finally and recently worked for me. After visits to my local cardiologist, The Mayo Clinic, The Cleveland Clinic, and most recently Loyola University Medical Center, I finally have some relief. I went to see Dr. David Wilber at LUMC, while a little arrogant he truly is an expert in this field.

Runner said...

Runner663,
I have been suffering through the same issues since I was diagnosed with V-tach about 8 months ago. It would be great to get your insights, and learn what has and has not worked for you.

c2 said...

Hi runner(s)
the blog desperately needs an update, but just to answer your question, my 3rd ablation appears to be working. My heart is completely calm, apart from occasional PVCs and I started exercising again 3 weeks ago (3 weeks after the ablation). SO far so good, but I'll be getting tested again in a few weeks, when I'll know for sure. Feel free to write me at ccpbackoffice@gmail.com if you have any specific questions

GaryD said...

Craig,

I have followed your blogs. I was an accomplished collegiate and post collegiate runner diagnosed with ARVD in March of this year. I had an ablation (7) and have an ICD. 24 hour Holter recorded 63,000 PCV's, 2200 runs unsustained VT, one lasting 2500 beats and a BPM of 261. Didn't pass out and continued to run/walk for four miles. I had a second episode in the hospital a month later. I am on Amiodarone and other meds. I have written two articles for our local track club newsletter including one that was published in the International ARVD newsletter. I have been on a mission to educate coaches, athletes and parents on Sudden Cardiac Death. We lost two female athletes at Indiana Tech University in Fort Wayne to SCD within two weeks. A feature newspaper article was published on enhancing sports physicals and an editorial responding to that by the President of the University. Please email me if you want to see what I have written or the links to the article and follow-up article. Best of luck in your recovery. At 59 I have still been trying to train but appear to now be facing the inevitable retirement from running. This has not been easy. Your comments are very similar to my experiences.

Jon said...

Craig,
I ran upon your blog while being on a Crossfit affiliate.
I am a 23 year survivor of Congenital Heart Disease (CHD), an ICD patient, a martial artist, and an endurance athlete. Most people associate ICD's with old people, CHD people, or just general poor heart health. You're story is a nice change of pace for an exercise-aholic like myself. I wasn't sure if you were part of the ICD Sports Registry (google it) which is running research out of Yale on people with ICD's who still are highly active.

Would love to hear more about you,
Johnny Bumticker

JS said...

Hi Craig,

I wanted to update you on my condition since you asked. After 3 months of inactivity and doing my second 24-hour Holter monitor, almost all of the arrhythmias that were present on the first Holter test were no longer existent on the second one. I had no episodes of v-tach and very few PVC's.

The cardiologists that I'd been seeing are bewildered. During my stress test, I had ST-segment depressions above 120 beats that disappeared at rest. Normally, ST-segment depressions and T-wave inversions are indicative of hypertrophic cardiomyopathy. Furthermore, my left ventricle was enlarged and the septum was hypertrophied. Interestingly, my EP, based on the first Holter results thought I had ARVD/C brought on by training...go figure!

The moral of the story is that this thing called 'Athlete's Heart Syndrome' is often mis-diagnosed and sometimes can only be differentiated from cardiomyopathy with deconditioning.

I'm still wary of my condition and haven't committed to getting back into the same kind of iding/racing that I used to do.

I'm glad your last ablation was successful and that you're back on your bike again. Keep us updated with your blog.

FYI...Here is a related article on the impact of deconditioning:

http://content.onlinejacc.org/cgi/content/full/44/5/1053

John

JS said...

Here is the complete article url without the hyperlink tags:

http://content.onlinejacc.org/cgi/
content/full/44/5/1053

John

VF said...

Craig,

I have read your entire blog and find your condition somewhat similar to mine, except I've experience SCD and 5 shocks from my ICD for sustained VF events. My docs have no explanation for my condition - idiopathic VF - I don't really get a chance to feel my heart race other than feeling faint, as my bpm shoots from 110 to 300 triggered by 1 PVC. To make matters worse my docs have conflicting opinions as to whether an ablation will prove successful. I'm now loaded with b-blockers and restricted (endlessly) to activity that is under 110bpm....so painful.

Like you I'm searching for answers as to why someone that can pull 13.6 mets on a stress test with a max hr of 210 and no other physiological issues and a healthy heart with an EF of 66 suddenly becomes crippled with this problem. I found the training while sick issue interesting, as I often trained on college crew while sick.

Though your trek wasn't without challenges, it is promising that you were able to resume a somewhat active lifestyle. I hope all is still going well for you - any updates?

Missy said...

Interesting that I found this page... I also suffer from VT, having discovered this when I passed out on a run last Aug. Normal resting HR is 37, yet randomly spikes after a PVC to well over the hundreds mark, and when exercising under little strain to over 210.

Ive since had 2 EP studies, countless EKGs, EGS, MRIs, 2 holters and a loop monitor, given enough vials of blood to scare a normal person, and had 2 failed ablations.

As I type this Im attached to a 48 hour holter. My last EP/Ablation was actually with Dr Marchlinski. I flew in from Atlanta to UPH, and underwent a non-sedated 13 hour pacing/buring routine, in which they finally decided to go epicardially. Still unsuccessful after 37 burns. They thought they "damaged" the rythm, but apparently not, as I sit here experiencing a long string of PVCs that I hope the Holter is recording.

Its nice to read that Im not one in a million, and someone else struggles with training with a potentially deadly rhythm.

-Missy

c2 said...

Hi Missy,
I haven't been checking or updating in months, and just happened to come across your comment by chance. I'm sorry to hear your story. I'm a strong believer in Dr Marchlinski. I am now 100% fixed, and am about to do my 1st bike race since all this started. The 3rd ablation (12hrs like yours) seemed to have done the trick. I had, and continue to have PVCs, Dr M says they may never go away entirely, but they are few and far between and have no impact on my day to day life. Good luck with your recovery, I was in the same situation for a while - a "damaged" but not "destroyed" VT loop - it took 2 epicardials to fix me.
best,
craig

LaurieR said...

I had radio frequency ablations by Dr. Marchlinski two in Jan 93 and then a final in Dec 93. It healed my VT at the time and I was VT free for many years and only had PVCs when ill or under too much stress or medication related. I now have left ventrical VT. I just had surgery on my neck and after the surgery my Blood pressure and heart rate have increased and starting to have PVCs again. The er docs have no idea what to do with me. I am not sure either and see another EP doc next week. I wish more docs understood what I have. I am not even sure anymore. All the things you said about yours relates to my first go around with VT, but now that it is in my left ventrical they can't do anything but drugs which are problematic.

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