On May 3rd, I received a bi-ventricular ICD.  It’s a pacemaker, intended to help my heart chambers beat in sync and in the correct order.  This device also has an extra wire that, in the event that my heart goes wacky, it will use electro-shock therapy to get me back into rhythm.  It will try this a couple times if it seems reasonable.  Or/then it will move directly into full-fledged defibrillation.  This is the kind of jolt that the paddles give a person after the doctor rubs them together and yells “CLEAR!”  This device was implanted because of the LBBB I developed after my septal myectomy.

So aside from some adjustments that needed to be made, I was beginning to feel pretty comfortable with the thing in there for the 3 and half weeks before… well, before the “event”.

A little over a week ago, on May 29th, 2010, I was celebrating Angie, my girlfriend’s birthday with her and 11 others.  She wanted to tour Eastern State Penitentiary in Philadelphia, an old abandoned prison most known these days as the place to go on Halloween and experience their haunted tour they call “Terror Behind The Walls.”

We didn’t take the best route there.  I decided instead of driving, we’ll go in with some of the others on the train and subway.  I was not prepared for the immense amount of walking we’d then have to do.  But there we were, walking a total of, I don’t even know… 10 city blocks?  More?  It was a hike.  It’s tough on me in the first place but it was also the first time I’d really done anything to “break in” my new pacemaker.

I was a bit winded and had to stop a few times, especially after climbing in and out of the subway steps a few times.  Angie was concerned a bit but I reminded her I am bionic now.  No matter what happens, my heart will continue to beat… and it’s designed to allow me to not have to be afraid about what my heart muscle can handle.   But we arrived, eventually, unscathed.

The place is just pure, dilapidated beauty.  We had a great tour guide who I was barely listening to because I wanted to capture so many scenes with my camera.

Angie was told we were going to be getting some extra special tour treatment.  We’ll be going up into the guard tower; a place seldom toured, apparently, and a place where I would soon be coming face to face with my own mortality. The tour guide warned us there’d be a lot of steps up there. I asked how many. A fair amount… 4 flights or so. Heh. It would be trouble, but I could manage. I got a pacemaker in now, anyway. “I should be OK,” I said hesitantly.

We were led down the usual paths and corridors, learning some very interesting things along the way.  Did you know a few scenes in 12 Monkeys was shot there?  We stood in those spots.

After we took a moment to feel like movie stars and/or mental patients, we were led to a chained up gate which led the way to the tower.

We were immediately led up a narrow flight of 15-20 rusted, metal stairs. At the base of the stairs was a cat made of stone, made to look like it was wandering around, just as you would find back when the prison was in use. At the top of the stairs, a narrow, metal catwalk.

But we wouldn’t be going down that catwalk, we’d turn and take another flight of stairs up.


Looking down the corridor from the top of the 1st flight

2nd flight

And I’d get to the base of that next set of stairs and I’d turn around to take this photo:


Base of 3rd flight

It would be the last photo I took.

I went up the stairs and found myself in a small, but fairly wide open room. It had one remaining staircase. A metal, spiral staircase of about 7 or 8 steps, narrow and crumbling with rust, which led to the objective of our tour; the guard tower. At the base of the spiral staircase, Angie stopped to make sure I was OK. I was panting heavily, sure, but it was nothing I wasn’t used to. But I prefer to just keep on moving rather than stop whatever momentum I have so I hurried her along and up the stairs. I was close behind her, climbing moreso than walking.

I reached the top and glanced at the small, octagonal room I was climbing into. — ϟϟ BOOM! ϟϟ

I let out a loud “OH!!!”

“What the fuck was that!?” I thought. “Did I get electroc- Oh, my…”

“I THINK…. MY PACEMAKER JUST WENT OFF!” I yelled to everyone who could hear me.

Angie asked if she should call 911.

I was so confused. “Umm… umm. I don’t kn– ” ϟϟ BOOM! ϟϟ It went off again.

“YES! YES! CALL 911.” I screamed to her.

I sat there. Waiting. Wondering what was happening. I couldn’t tell you what the others were doing but I know they were all on the spiral stairs which I still sat at the top of, and some were still waiting in the room below us.

ϟϟ BOOM! ϟϟ It happened again… and like every other time, I followed it with a loud yelp.

I can’t describe to you the feeling. I’ve been trying for over a week now to find the right way to do this. I see a flash of white light. I literally hear a boom. My body jumps an inch off the ground. It’s as if I’m getting slammed on the head and back of the neck with a sledgehammer. But there’s no warning. That’s the worst part. It’s over before you even know it’s happening. Like you’re getting shot by a sniper 100 yards away. Which is how I was about to start reacting to the situation…….

The tour guide suggested all the new surveillance equipment up there might be causing some interference. So we decided to hurry down the stairs. Of course, I was worried it would happen while I was walking so I waited for another blast. I’m not sure it came. So I practically slid down the spiral stairs and into the open room below where I just got down on my knees and tried to catch my breath and realize what had just happened. “Oh man…. so scary.” I said. I was glad to be away from that equipment. After a couple minutes without any blasts, I decided it stopped. I caught my breath as much as I could and tried to calm my panicking. The paramedics were on their way but I knew it would be nearly impossible for them to get me all the way up here so I wanted to try and get down more towards the ground floor for when they arrived.

I made my way down the next set of stairs at which point I was told I should just sit on one of the 3 wooden steps seen in the “2nd flight” photo. It seemed to have stopped. Another employee of the prison gave me a bottle of water and said it would help me cool down some. As I began to thank her, it hit me ϟϟ BOOM! ϟϟ again. “OH GOD!!!!” The guard then informs me there’s a transformer underneath that part of the building and maybe I should move to the other side of the room. This would require maneuvering through the wooden catwalks with wooden railings you see in “2nd flight”. ϟϟ BOOM! ϟϟ It hit me again and I raced across as fast as I could to a safer area; one that I was not in any danger of falling down a few flights over a loose and decayed railing. I got there. ϟϟ BOOM! ϟϟ But I had had enough. I sat down, with one more flight of stairs to go. I couldn’t risk moving around anymore. Here I was, up a narrow, metal staircase, still 500 yards from any opening to the street, and tourists are walking around taking pictures making me flinch; thinking that I was having another bolt of lightning hit me.

The fire EMT’s arrived on the scene first. They could do nothing more than give me some oxygen and watch me as I occassionally jumped and screamed with each new shock that hit me. I was fully conscious between these shocks, though. And began to distrust this place I’ve decided to rest at. So I was panicing and trying to tell them I needed to move away from this spot. I was convinced at this point that all of this was caused by the building, or at least the equipment inside the building. They wouldn’t let me move, though, and Angie started arguing with them. It did no good. At this point, I must have received almost 15 shocks.

Once, one of the EMT’s had his hand on my shoulder while I received a shock. He felt it, too. I hope it hurt a little, because the way he was acting, he might as well have been comforting a shoe.

Finally, the shocks seemed to stop again and the paramedics arrived and they took their time trying to decide how to get me down the stairs. They brought up a stairway evacuation chair. I was nervous to get on my feet to sit in the chair, but I did. I sat down and they began to strap me in. ϟϟ BOOM! ϟϟ It went off 3 more times as they hurried to get me strapped in and take me down this final flight. I was told to cross my arms. Once I did that, I wasn’t shocked anymore.

We made it down to the ground. They needed me to then get up and climb onto a real stretcher. Panic. I just knew it would go off again if I moved. But I had to get on the thing, trying to keep my arms crossed anyway. It didn’t go off.

They walked the stretcher down the long corridors, visitors and tourists gawking as I laid there, arms still crossed, hoping not to explode in front of anyone, wondering if these were going to be the last people to see me alive. I’d been thinking since the 2nd blast that I was going to die. I was looking around, trying to take in my final surroundings, disappointed that it was happening too quickly without warning. I didn’t want it to end. I certainly didn’t want this happening on my girlfriend’s birthday.

But as time progressed and I found myself still not being tended to by any medical doctors, I didn’t see a way out of this. I just needed someone to come in with a magnet or machine to disable this thing from shocking me anymore and that didn’t exist. Even if the EMT’s had something like that, they were under the impression my implant was doing what it was supposed to do… and it was keeping me alive. Meanwhile, my opinion in hindsight, is that it was killing me… or it could have. With each blast I received, it could have easily stopped my heart. Granted, the next one could have restarted it.

So there I was, helplessly, mercilessly, and brutally being attacked by this device inside me. Wondering if the next time it went off would be the last I’d know.

We finally made it out to the street and they put me in the ambulance. I think we sat idle there for 20 minutes while they prepped me and hooked me up to everything before we got moving to Hahnemann University Hospital. I have to give them credit, though, as they did inject me with something to lower my heart rate. But in my head, as long as I kept my arms crossed, I was OK. It hadn’t shocked me since I laid on this stretcher.

We made it to the ER, I was rolled into a room. Lots of people. Doctors, nurses, admissions… Angie took care of answering most of the questions for me. It reminded/reminds me of all the times I had to take my dad to the ER and do the same for him.

My heart rate was high. 160′s or so. This was the first I realized it really was my high heart rate causing the device to go off. They wanted to sit me upright for an Xray. As soon as I sat up, my anxiety skyrocketed and I could feel my heart pumping wildly. I had to lie back down. They just said it would take a minute. It did. But while they were putting the bed back in a reclined position ϟϟ BOOM! ϟϟ it went off again. The orderly thought it was just the bed… until it went off another two times. They shot me up with some more drugs to get me to calm down. It worked. It never went off again.

My heart rate got down to 100 and then down to the 90′s and by the time I got my own room in the CCU, I was in the 70s. But you can believe for the next 3 days I was obsessively looking at my heart rate and kept it as low as I could. If I sat up a little, I’d glance and notice I’d shot up to somewhere in the 80s… so I laid back down.

I was scared to sit up a little. I was even more scared to sit up totally straight. And you can forget about standing. What if that shot my heart rate up??? I would barely move for the next 3 days until the weekend and holiday was over and a REAL doctor could come in and turn the defibrillator the fuck OFF. My choice. I was assured it happened because the thing was set too low. My heart works a lot harder than normal. So my heart was doing its job just fine. Doing what it needed to do. But the device saw it and said “this rate is way too high” and shocked me and continued to do so until I could get my rate down below the set threshold of 180 bpm or whatever it is. And the device and my heart basically got into a fight about what was supposed to be happening. So yeah. Turn the damn thing off, thank you. I have no trust in that thing anymore… even if it was “human error” from being set improperly. At least I could feel comfortable standing up, now. I got to see out my window for the first time. Go to the bathroom. I was still quite nervous to be on my feet, but it was a start.

It still works as it should as a pacemaker, but if I do go into any sort of arrhythmia, supposedly it will not begin giving me any electrotherapy followed by the major shocks. I say supposedly, because that’s what I’ve been left with: paranoia and extreme anxiety. I fear raising my heart rate too much still because maybe the thing said it’s turned off but it still activates, like that Zoltar machine in the movie Big. I’m afraid to walk up any more than 5 stairs at a time without taking a break. I’m getting better every day, though.

It’s weird… many times we might have said “man, I almost died.” or “I thought I was gonna die.” but this was the first time, I really felt like I was staring death in its face. And I saw nothing. It was slow, it was scary, and iI felt so helpless; so forsaken. All in all, I thought the thing went off about 20 times but a nurse looked at me and said “It went off a lot more than that” but I could never get a definite number out of anyone.

But I’m getting better every day. I’m on like 4 medications, but I’m getting better. I was released from the hospital a couple days later and was ok until I got to the steps leading up to the 2nd floor of my building. I stopped halfway because I could feel my heart rate rising, which caused a panic attack, which made me think I was going to die again by way of another shock…. or…. a real arrhythmia which couldn’t be stopped because the defibrillator was off! But I rested a few minutes and made it inside. Every day now, I can’t take those steps all at once. 1/3 at a time, usually.

Tomorrow, I finally get to see my actual cardiologist and electro-physicist (specialist on how these devices work) – so maybe he will have some more news or information for me at which point I will send out another update. But I needed to get this out now, before I totally disconnected with it, as I’m sure I’m already in the process of doing.

You can view all photos from this tour, plus photos from the night before where I threw a surprise birthday dinner for Angie at an awesome place called Temperance House in Newtown, PA.
http://picasaweb.google.com/auxzealot/AngieSBirthdayEasternStatePen#

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  • Westley Walker

    This happened to me too around the end of April. It had been about two and a half weeks after my ICD was put in. Come to find out it was set to start pacing at 140bps and blast me at 160bps. Once I got to the hospital the doctor decided because I’m only 31 and alot more active than a old person it was set to pace at 185bps and dephib at 210bps.

  • http://www.cozbaldwin.com Coz

    That seems set ridiculously low. The 185/210 I think is how it was set for me when it went off… so I’m still too scared to have the defib turned back on. If I were to, I can’t imagine a blast setting of less than 230. I get to 150 just standing & singing with my band sometimes (my resting pace is usually around 70).

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