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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 2, 2008

Stage One: Epicardial Ablation, the grim details


Post-surgery-round-one. The orange blob on my chest is a sterile coating around the incision made under my sternum. There is a catheter in the pericardial sac to drain off excess fluid, which goes into the small, shiny pink bladder lying on my stomach. The contraption in the lower left corner is a PCA, the magic machine that lets me administer my own pain meds.

It is one week after the final assault on my ventricular tachycardia and the haze is starting to lift. I have two new holes in me. The first lives front and center on my chest, just below my sternum. My girlfriend Molly says it looks like the pouting lips of a blowfish. It is tiny, approximately a centimeter across. It is now, a week later, sealed up enough for me to shower with impunity. This remarkable little hole marks the passage created to gain access to my heart and destroy That Which Would Destroy Me.

The other hole was considerably larger, a one-and-a-half inch incision in my left pectoral which now holds a "Dick Cheney Signature" Medtronic Cardioverter-Defibrillator (now for liberals!!!) The defibrillator is its own story and gets its own forthcoming entry. For now we'll stick to the blowfish mouth.

The first stage of my two-part surgical voyage last week was an epicardial (exterior of the heart) ablation. You may recall that my initial endocardial (interior of the heart) ablation was unsuccessful. The site of scaring on my heart was large and deep, spanning a 3cm by 2 cm portion of the wall of my right ventricle. With scarring of this nature it is often the case that the less invasive endocardial ablation will not do the trick (I saw a 45-75% success rate somewhere). The day after that ablation I passed my stress test, and was sent home. But in the weeks that followed portions of the site returned to normal and the tissue that created the malevolent circuits responsible for V-tach came back online.

The scar itself can be imagined like a lattice, web or tic-tac-toe board. The spaces in between the lattice are unscarred tissue, but because these bits of tissue are separated from the rest of the heart by the scar, they create their own, independent rhythms. These rhythms can hijack the normal rhythm of the heart and create V-tach. In the ablation these areas of tissue are cauterized with radio-frequency waves, which cause them to scar as well. Ablation is a tic-tac-toe game; hatching the void areas in the lattice to create a harmless uber-scar.

The new approach was to attack from the outside a longer, more complicated and riskier procedure. After checking in the day before for overnight monitoring, I was wheeled into the U Penn electrophysiology lab at 7am. This is as much to pack the day with cases as it is a precaution in case more complicated surgeries run long. The first part of the procedure was done with conscious sedation. I was thoroughly catheterized; two cardiac catheters were placed on either side of my groin, one for the left chambers of the heart, one for the right. These were for purposes of monitoring the action that would take place on the outside of the heart, and to deliver pacing pulses when needed.

I was also given a Foley catheter, an incidental I had been dreading for weeks. This is basically a penile hose that goes up the urethra to the bladder, where it drains any urine produced during surgery. It would stay in for the next 24 hours, as I was unable to move during that period. I grew to love the Foley. It proved enormously useful. Imagine, you can drink with impunity and never have any pressing need to pee. It was not uncomfortable and I was so sedated I never noticed it going in. Thank you Mr. Foley. Of course I was never able to sit up and actually make eye contact with the thing, which might have been stressful...

There was an initial round of remote control V-tach as target sites were located and then the anesthesiologist stepped up and I was knocked out right and proper. The chest hole was opened up and a sheath inserted to guide other catheters into the "pericardial space" and through the pericardial sac . The pericardial sac is a protective layer surrounding the heart that reduces friction between neighboring organs and gives the heart its own space. Through this hole a catheter was maneuvered which probed the outside of my heart and mapped the areas in question. Another catheter applied the ablation, bursts of high-energy RF waves that cauterize the scar. Dr. Marchlinski concluded by running my heart through the gears, trying to induce V-tach. I was uninducable.

This process took 8 hours. I was wheeled out of the lab at 3pm. I awoke in agony. My chest felt crushed. It is a difficult sensation to express, but I suppose it must be something akin to getting stepped on by an elephant. I asked for my Mom, a nurse herself. I didn't want the rest of my family to see me moaning like this and I knew she would be a good advocate. There were nurses on hand to run me through a gamut of pain meds. Percocet, Fentanyl, Morphine, and finally Dilaudid. Only the Dilaudid had any impact. Dilaudid is, according to Wikipedia "about eight times stronger than morphine and about three times stronger than heroin". After that I was a giddy, pain-free mess.

I was hooked up to a PCA, "Patient Controlled Analgesia", a pump tapped into my IV that allowed me to administer my own dose of Dilaudid via a little button on a wire. It sounds a bit like a lab-rat experiment and it is; the PCA lets the patient administer only a prescribed dose per hour, after that limit is reached the rest is just the placebo affect of hitting the button. It works. I was mostly pain free that night.

But the drugs were making me anxious and paranoid. That night Molly stayed in my room in the ICU. I was having panic attacks. I kept my head tilted constantly to look at the ECG monitor overhead, checking my pulse, blood pressure and oxygen levels, and detailing any errant rhythms my heart was producing. And there were a lot. The days after surgery are filled with errant beats, PVCs, and small runs of V-tach that keep you on your toes. The heart is aggravated and enflamed, and it takes long days to calm it down. I knew this, but the Dilaudid made me think that every thump in my chest was going to kill me. It was a long night. Molly woke with every panic attack and reminded me of what reality was.

This continued into the next day. By the late afternoon I asked to be taken off the Dilaudid. The pain was down, and although there were occasional moments of drug-induced euphoria, mostly the stuff was making me freak out. I was taken off the PCA and the Dilaudid and put on Percocet, administered by my nurse. The second night was calmer; I was taken off the ICU and given a bed in a shared room next to, of all things, a cardiologist with Marfan's Syndrome. He heard one of my panic attacks and poked his head around the curtain to let me know that I was not, in fact, going to die, and if I needed any help he'd be there for me.

I slept poorly. The next day would be my second surgery, to implant my defibrillator. I was feeling unprepared. I hadn't been able to eat from Monday night until Wednesday afternoon, and when I finally had the catheter removed from my chest and was able to sit up and eat, I had no appetite. I consumed maybe 500 calories in 3 days. Hardly a robust candidate for a second surgery.

12 comments:

Eric said...

You are one tough dude!

Thanks for sharing this. It's appreciated.

Liam said...

hang in there craig. sending support from nyc.

liam

jelrod said...

Dear Craig,
Thank you so much for sharing your experiences on this blog. I am the managing editor of a monthly medical journal called EP Lab Digest, and I recently came across your blog site, where I've been following your story. I am always interested in publishing articles about the patient perspective -- I believe this is something that is often missed in other medical journals. Please contact me if you would be interested in writing about your life and your experience with ventricular tachycardia for our journal. I can be reached at jelrod@hmpcommunications.com. In addition, for more information about EP Lab Digest, please visit our website (www.eplabdigest.com).
Best regards,
Jodie Elrod, Managing Editor
EP Lab Digest

Tink said...

Hello Craig,

Been anxiously hoping to hear how you are doing (that you are well) in your next install; single or dual chamber ICD? how are you doing with ICD? how are your arrhythmias (better or worse than before ablations both endo/epicardially)? are you acclimated to your med/s and/or mineral prescriptions, and/or device adjustments? have you found a support community/ies of others who have gone through similar experiences? learned any of the tips for better quality living with your diagnosis and device?

Which brings up the question of diagnosis. Do you have a diagnosis? Have you received a 2nd or 3rd opinion on your diagnosis based upon your original records, subsequent records?

Your story sounds so familiar to those of some hundred or more atheletes I know. The latter were diagnosed with ARVD/C. I can't help but wonder if this is your diagnosis. If you have been diagnosed with ARVD/C, I have so many more questions. If you have not been diagnosed with ARVD/C, I wonder if you have had ARVD/C experts look at your records.

Yours truly,
Tink
ARVD-ARVC-Info.com

Scott said...

why were you not given any anti-anxiety meds? i figure some ativan would help with post-surgical anxiety.

Anonymous said...

can someone email me if you have had epicardial ablation for vtach? i suddenly had ideopathic vtach for 5 days.....3x per day at least. now i have an icd. i am on metropolol. would love some feedback. nancytruro@comcast.net

Stephen said...

I've had an ICD for a year with two episodes of three shocks close together for which i was hospitalized and three other isolated shocks. now on amniodorone and scheduled for an ablation in two weeks. wish me luck.Steve

Jim Raff said...

Dear Craig,

As a canidate for epicardial ablation I thought I best not read your blog... but I couldn't resist. You are one hell of a writer and a tough guy. Thanks for the story... it's appreciated.

I have had two implanted defibrillators (ICD) for close to ten years with almost no shocks, it was smooth sailing until now. In January I suddenly blacked out and hit the ground hard just before the ICD revived me. Lucky I was just standing on the patio. Four days in ICU. This was the second shock in six weeks albi it that one didn't include the blackout.

I am 80 years old and lucky to have gotten this far and fairly undamaged. The amiodarone drug I use to control the VT has pushed me near the limit. Last week I had a unsucessful endocardial ablation with complications (ventricle puncture) at the University of WA. Not a fun procedure, five days in ICU but almost no pain involved.

The next plan is hope the VT will subside and smooth out with epicardial ablation as a backup option. Amiodarone can be tolerated for just so long before the side effects eventually catch up with you.

Hope you are doing well after your medical adventure and living a normal life.

Anonymous said...

Dear Craig,
Thank you so much for sharing your experience. I am very interested in your story and was hoping for an update to see how you are doing, especially your results with the epicardial ablation. Thanks again for sharing!

Jonathan said...

Craig,
Thanks for the thorough walk through of the procedure. Mine is being scheduled now. I have read many articles written from the medical (doctor) standpoint. This one helped me the most. Hope all is well with you!

Medic8203 said...

Thank you for sharing your story. My son is 17 years old and until may 10th of this year a healthy active teenager. He was diagnosed with Sustained v tach. he has 4 cardiac ablations and 1 ep study. all of them unsucessful. we have also tried several medications and 3 differnt specialty hospitals. At this point we have no idea what to do. He had his last ablation about a week ago and yesterday his v tach came back. Today he has sustained the v tach for about 10 hours.

medic8203@gmail.com

Kate Krawczyk said...

Greetings. I found your blog, as I was looking for information about epicardial ablations. I myself, am facing an dual epicardial and endocardial ablation in the next month or 2. I was told by my doctor that my recovery would only be a one night hospital stay, and for the most part would not be any worse than my initial endocardial ablation from 2010. I am just curious, what did they tell you about recovery time before your procedure? Were you aware before hand that you would require a defibrillator, or was that an outcome as a result of your 2nd ablation?