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#

But my most recent EKG is showing a new problem; one that’s started since (and most likely DUE to) the surgery I had in January.

I now have what’s known as a Left Bundle Branch Block (LBBB).  As I understand it, this means the electric pulses which flow down to the left and right ventricles, causing them to beat in sync, were damaged on the left side during surgery (which, by the way, was quite successful in what it was intended to do; reduce the gradient, allowing the outflow to become normal). I’m given the impression that this is common after the surgery because the tissue they have to take out is right where the electricity flows down through. So, now, my right ventricle pumps and the left one pumps just a wee bit behind it. This could be contributing slightly, perhaps fully, to my recent inability to move without feeling short of breath (which has subsided somewhat, as of 2 weeks ago).

The next step is to get an electrophysiologic study, which is kind of like a heart catheterization, but much less risky, severe, and less difficult to perform. They will be testing to see how the right side is doing and determine if I’m at risk of ventricular arrhythmia (i.e. an irregular heartbeat). If the test is clean, we can sit back and even try getting me off the medication I’m on now. But if the test shows that I am susceptible to a wacky rhythm, then I will be urged to have an ICD put in. (i.e. A pacemaker)

So…
I’ll probably be scheduling the test sometime in September. It shouldn’t be a big deal. I’ll be able to go into work by the next day and everything.  I was seriously thinking this pacemaker/ICD talk wouldn’t happen for at least a few years after the goddamned surgery.  But I suppose I’m not that lucky.

Besides, only one person even bothered to ask for part 2 of my surgery blog. Just goes to show how many are truly interested. I’m not hurt by that, because it’s not surprising.

I will probably end up changing this layout… maybe to something more appropriate to my online life. Less focus on this rotting corpse of a blog and more on Twitter and/or other things.

I need the record to show that I have done quite well with my withdrawal of Lee Anne. It’s been a little scary, though. I’ve always said that the thing that keeps us going is knowing there’s something to live for, something better than here and now. So when I put every ounce of hope into a particular dream, knowing that will make everything better, allowing it to be the one and only thing I was living for… well… it’s a little scary to let such a thing go. Will I lose faith in life? Will I succumb to complete and total apathy and put an end to this now-pointless life?

Nope. I know there’s something (see: someONE) else out there. I believe in my heart we were meant to be together, when we met, but it didn’t happen. I also know there can and will never be anything as great and powerful as what we experienced. But there are so many facets to our relationships with people, there stands the possibility that I will have something equally as important and equally as fulfilling in due time.

I was never bitter about the situation. Disappointed, to say the least… but never bitter, never jealous. Just thoroughly confused about how something so completely right was just not able to be possible. No, I was never bitter. And for a while, almost 2 years, I was a better man because of it. I could revel in the enlightenment I achieved from knowing her. I was at my best in that year following their marriage. I was the fittest I ever was, I was all-around healthier, too. But things quickly changed after all the ups and downs.

Dysthymia seeped in at some point. I’m now fully engulfed by this disorder and oh, how it touches so many around me. The dysfunction it causes it only strengthens its grip on me.

So this is what I need to work on, now. That and a body which is worse-off now than it was before the surgery. The past 3-4 weeks, I’ve been eating healthier than ever before. I actually am making my own salads using fresh ingredients and preparing them the night before! Dinners are all turkey & cheese, tuna, and/or baked beans. …But I’m still not losing weight.

I’ve not made mention of it, but I can’t even go up a flight of stairs without it totally knocking the wind out of me and making me feel like I’m going to pass out. I have to sit down after standing up some times. And the test is scheduled weeks in advance so I won’t know for awhile if they see anything wrong. My knees, at times, feel like the cartilage in the joint is thinning. The good news is, I’m not coughing up blood since the surgery.

Anyway, these subjects are pretty much all I write about on here anymore. Boring!
I advise you to not check here often, since there won’t be much going on.
Not for awhile, anyway.

It’s also not usual for me to preface something prior to writing it.  My prefaces usually are written afterwords.  Maybe I’ll add something here before giving it to you.

So, as I attempt to even think of where to start I’m realizing there wasn’t a single moment where I had any heightened emotion and to try and document this thing one step at a time would be the absolute most boring thing I’ve ever written and you’ve ever read.  So this may go a little differently than we expected.

I acknowledged what was about to happen.  The week leading up to the surgery was pretty hellish.  It began with a dental examination and pulmonary (lung) exam on Thursday which was made in an attempt to figure out why I cough up blood all the time.  Without much warning I would just begin to feel my lungs fill up with blood and I’d have to cough it all up while I wait for it to stop.  It went on for 2 and half years and no one could figure out why.  I was giving these doctors a week to figure it out.  They told me to have the surgery and see if it still happens.  So I wasted 4 days worth of hotel costs.  Hotel costs that, by the way, were up in the 3 star price range but 1 star quality.  Thanks for that, doc.

The wind chill outside was -22.  Temperature was -1.

The dental examination led me to an emergency endodontist’s office the next day, Friday, where this other guy could give me 3 root canals, back-to-back-to-back in one sitting.  This resulted in a missing tooth just left-of-center in my smile.  Except for dealing with the missing tooth, there wasn’t much pain involved and it didn’t affect me too much.   They needed to do this in order to ensure I’d have no infections in my mouth which could travel down to my heart while it was vulnerable during post-op.  A fairly common precaution, actually, and could be fatal.

The sprinkler system malfunctioned in the hotel on Saturday.  The alarms were going off everywhere.  I rushed out of the room and attempted to find a stairwell. No one else was out of their rooms.  No one was in the stairs.  Wh… ummm…what?  The stairwell I found led to an alarm-sounding door to the outside.  This didn’t seem right.  The fire alarm stopped. I went back upstairs.  Still no one was around, so I went to the elevators and took them to the lobby where there I saw the glass vestibule walls were cascading with a constant flow of water.  I had no idea what was going on until I asked the girls at the front desk.  Seems to me this would have been a good time to utilize their P.A. system and announce there was no fire, everything’s OK.  But apparently those types of thoughts don’t occur to these girls.  I developed a severe migraine and the Eagles ended their playoff run that night.

Sunday night began a fasting.  I had a bunch of tests the next day and wouldn’t eat again until Monday afternoon.  I also met with my cardiologist who promptly ordered a neurological exam and colonoscopy because of some passing comments I made about two recent, odd events: a Transient Ischemic Attack and a little blood in my stool one day.  Nooooooo.

After the testing I’d fast again because I had a heart catheterization the next morning, which turned out to be a bigger procedure than I expected.  That’s where they shave your groin area, cut a hole and shove a tube into your femeral artery.  They guide the tube all the way up your torso and into your heart.  Then they inject dye while they take x-rays to see how the blood flows.  I was in the waiting room for this procedure while Barack Obama was being sworn in.  First I stood with another 20 or so people as we all gathered around a TV hanging on the wall.  Then was guided to another area where I was sitting with another 10 or so people, some of which were foreign.  The swearing in occured and there was some silence for a moment until one lady decided to start clapping.  I would have started it myself, but really, when you don’t know other people’s feelings on the subject, I didn’t want to get into any arguments.  But most everyone joined in the lady’s clapping for a few seconds and we continued to watch the ceremonies until I was led into the cath lab, which was pretty much an operating room.

I awoke to the inaugural parade and enjoyed it from my recovery bed.  This was not exactly how I wanted to enjoy these historical events, but whatever.

A couple hours later I began the preparation for a colonoscopy which was scheduled for the next day.  But I hadn’t eaten!  So I ate something and then waited a certain amount of time before drinking the god awful “medication” to clean me out.  Talk about binge and purge.  This was literally like drinking water straight from the ocean.  It’s not that bad if you get one or two mouthfulls. But a gallon?  In like, an hour?  Can’t be done.  Not by me, at least.  I drank about 75% of it and went to bed.

Woke up Wednesday morning and went to the neuro exam.  He orders a CT scan on my head and declares the TIA I had was probably not TIA and just random numbness.  Then the waiting began as I was unable to get to my next appointment on time to meet with the surgeon and had to wait until he got through with a surgery.  When he finally showed up, it was brief but friendly.  I also got to meet with his scheduler who’d been more of a help to me throughout this whole process than anyone else.  I had every intention to send her a thank you card, but still haven’t yet.  Dammit.

Well, I ran from his meeting downstairs to where my colonoscopy was schedule and to which I was late for.  I gained some sympathy from the attractive, young nurse — which reminds me… holy crap, the nurses throughout this complex were all so pretty.  Many could easily have a side career as models.  My completely deshevled appearance made for a much easier time interacting with them because I knew I had no chance in hell.  And yet, I was conflicted because I was still embarrassed by my situation and even still OK with gaining their sympathy, like it would somehow lead to some fleeting romance while I limped from the hole in my crotch, smiled awkwardly due to the hole in my smile, and tried to contain the air buildup from the probe that was just inside my ass.  Yes, yes… please love me.  Aren’t I adorable and helpless??? 

*pause for sarcastic effect*

So it was all done.  All the testing, at least.  I could finally eat again, too, but not for long because tomorrow was the big surgery; the reason I was really there, 400 miles away from home and 400 miles from anyone I knew.  To repair a damaged heart, in the most literal of ways.

You can see all the photos from this period in my life here:
http://picasaweb.google.com/auxzealot/Myectomy2009#

So I’m not so sure I have much to share here. I am trying not to think about it. The more I do, the more nervous I get. Today I lost my patience and stopped being so friendly with everyone. Just very quiet and short with them. I had such a hellish day today. It wouldn’t surprise me if I oversleep tomorrow. I sure hope not but what can I do?

I’m inclined to write out all my feelings as if I was preparing to die. Well luckily I don’t hide my feelings and those whom I love and are on my mind know who they are. I hope they remember it forever.

Take care. Ill probably be out of the OR by noon if you want to call my mom. I don’t suspect ill be able to make/take calls or send any tweets until late afternoon at least.

Thanks to all those who’ve sent well wishes. I do appreciate it.

Final reminder:
I’m at the Cleveland Clinic for open heart surgery called a septal myectomy to improve my hypertrophic obstructive cardiomyopathy. If all goes well I should be on a plane home on Jan 30th. Ill be recovering for at least 4 weeks.

Talk to ya soon!

Fuuuuhhhhhhk.

So this morning I called the surgeon’s office. They didn’t cancel anything and they didn’t see a need to speak with the dentist. Instead, I have a dental appointment first thing in the morning once I arrive in Cleveland… before the pulmonary appointment. I will be seen by a dentist who only deals with cardiac patients and he will know exactly what’s acceptable and what’s not. If necessary, there will be a little time to do some emergency work to try and get me “infection free” and ready for the surgery. No guarantees, though.

I was also told that I will still be able to get the pulmonologist to look at me and that alone may hopefully result in the trip being worth it.

So I can relax a little for now. Cross your fingers for me.
This has made for quite a stressful birthday morning for me.

I will go through a full day of testing to determine if I qualify for a septal myectomy (an open-heart surgery). There is a very good chance I will qualify, at which point I will be scheduling the surgery for this coming Spring.

Today was spent trying to work out approvals, etc. to make sure I’ll be covered for all this. Quite a headache. I disagree with any company outsourcing their call centers overseas, but I particularly hate that health insurance companies do it now. Having worked for a health insurance company and trying to deal with people in another country who really have NO idea how things work over here and don’t have a clue what anything you say means, it’s especially awful when I’m an actual patient trying to get answers. They might as well be robots. I feel like hanging up as soon as I know I was routed into an overseas call center. So I just allowed them to give me all the wrong answers and get me upset only to get a totally different set of answers once I spoke to someone here in the states.

So I’ll be spending 2 nights in OH once I arrive, drive back Tuesday morning and I’m back to work on Wednesday with a clearer idea of the future that lies ahead of me.

For those wondering what’s going on with Circuit Theory, here’s the answer: Tom and I have agreed we want to continue working together writing songs, but we’re burnt out a bit at the moment – plus with things like my impending surgery, our lives are kind of preventing us to take anything seriously. So with any luck, we’ll toss ideas back and forth for awhile and once I’m healed, we’ll look at the possibility of seeking out additional band-mates… but the earliest that could happen is probably Summer ’09.