What I’m sitting down here to write is intended to be an epilogue to a post I made about four years ago called “Near Death Experience“. It’s been four years and I never quite wrote that “Part 2” to the story, so I figured an epilogue was more appropriate. So if you haven’t read about “the event” before, maybe you should start there. I just had to re-read it for the first time and it was still difficult making it all the way through. I had to pause a couple times, even.
So let’s see… where to begin…
Not long after I had that experience and posted the blog entry, on June 24th, 2010, I lost my job — and soon after, my health benefits. I went two years without a full-time job; doing freelance web work and a few short-term contracts to supplement my state (and later federal) unemployment compensation benefits. The week prior to the exhaustion of all my UC benefits, I scored a contract with Penn Medicine. It was originally planned to be a few months long but here we are, exactly 2 years later, and I’m still there. And I love it there. But being a contractor, I am still not entitled to health benefits. That is, until the agency I’m contracted through began offering them at the beginning of this year. So, after suffering from the “Near Death Experience”, I was left without health benefits for over 3 years. Let’s start with what’s happened during those 3 years.
First of all, there was this chronic pericarditis. This is when fluid builds up around the heart. It’s not too uncommon to happen after trauma to the heart. Why it kept happening is anybody’s guess. Aside from whatever damage that does to the cardiopulmonary system, it caused me crippling pain in my left shoulder during these flare-ups. Sent me to the ER a few times (Out of pocket, of course). Treatment is simply a lot of ibuprofen.
At this point, the flare-ups are rare. So instead, the last 2 years have been mainly dealing with congestive heart failure. This shows itself by causing extreme fatigue to the point where getting dressed in the morning leaves me breathless and too weak to stand. My smoking, sodium intake, and obesity are the three main contributing factors to this. Treatment is a diuretic to make me urinate a lot so as not to retain any excess fluid. Speaking of obesity… It’s getting worse and I’ve got too many things to work on before I can work on that. So let’s talk about what those other things are.
Anxiety. Severe anxiety. PTSD? Depends on who you ask. After “the event” I was left with an irrational fear of lightning. Thunder, too, I suppose, but really ANY sudden loud noises scare me now. But lightning cripples me. If you read the first part of the story, you’ll hopefully understand why. For a long time, I was even afraid of plugging things into electrical sockets. I was convinced that I was more prone to being electrocuted than others; that my ICD would act as a lightning rod. But after a while I began to realize it wasn’t necessarily the fear of getting hit by lightning, but rather the fear of having my adrenaline released. Once any amount of adrenaline is released, it all seems to come out, racing my heart and sending me into a panic attack (because I still think the defibrillator will zap me). So I’m scared of being scared.
But even things such as trying to walk fast or jog to catch the bus/train before it pulls away can send my heart into a tizzy. Even taking a staircase up too much at once can do it. Even times when I see the train still sitting there when I thought I’d missed it and realizing I still have a chance to catch it will raise my heart rate to over 150 bpm. It happened way too often. And at 150 bpm, my pacemaker stops pacing — and that is when it feels like it’s out of control — and that is when the panic attack sets in, making it even worse. So during one of the most recent un-financially-covered trips to the ER over the last 3 years, I asked that the threshold be set to 160 bpm and I’ve noticed a difference. The adrenaline has a harder time getting me to 160.
Treatment is: to remain calm at all times. (Seriously.)
The ICD is still solely working as a pacemaker. The defibrillator lead has remained turned off. If I wasn’t worried about damaging my heart muscle more by ripping the leads out completely, I’d have them take it out of me.
The debt I’ve accumulated has been reduced thanks to the generosity of Abington Hospital, putting me on a financial hardship program after the fact. But I’m still a little over $10,000 solely in medical debt because of these last 3 years of being uncovered.
So aside from debt, where does this leave me at today?
I’ve tried a few different anti-anxiety medications. I’ve been on 20mg of Celexa (SSRI) now for most of that time. I think it’s helped me not feel like I’m going to die at any minute all day long. I have two different benzodiazepines to take as-needed, which thankfully is not much these days. Usually only during thunderstorms. I still look at a normal set of stairs like one would look at the Philadelphia Museum of Art’s staircase when faced with climbing it. It takes me about 4 minutes to climb 30 steps so as not to get my heart rate above 90. Ah, yes, I have been insistent on wearing a watch which tells me my heart rate. Some people tell me it’s bad, but I NEED to know how high it is when I’m feeling bad. If I can see it’s relatively low, I can determine whether it’s really my heart or if it’s panic. And if it’s panic, I have an easier time controlling it. I actually barely ever look at it now, though. But I’d be scared to not have it there to check when I need it.
I’m generally feeling the way I’d think a 70 year old man might feel. My activities are about as limited as his would be. And I think to myself… I’m 34. Time is slipping away. My LIFE is slipping away. These years are the ones I should be using to be active and having as much fun as I can because there aren’t too many more years where that’s going to be possible (at least not in the typical non-athletic adult male’s life). So I had to ask my cardiologist if it’s reasonable to even consider a heart transplant at this point. Because I feel the one I have now is never going to let me lead a life I want to live. His response was not that it was obscene to think about it, but it’s just that in order to get on the waiting list, I’ve gotta pretty much be on my deathbed. Which, is understandable. But sad, nonetheless. It was worth asking. Kinda feel like I should get a second opinion. Not because I think I’ll get a different response to that specific question, but really the whole thing just doesn’t feel right to me. Or there are other underlying issues which haven’t yet been discovered. I’d put money on the latter.
One of the top priorities is getting back into therapy. I need to get over this anxiety, number one. And number two, I need to get out of this depression. Really, it’s dysthymia. So I’m not expecting any significant change, but I know I’m capable of feeling better than this, emotionally. I’m not sure when that will happen, though. The money I’m making is enough to pay my necessary bills, spread a little out amongst the debt collectors, and pay off the monthly interest charges on my credit cards, leaving very little room for anything extraneous, especially weekly mental health appointments. Besides, I may have health coverage now, but I still don’t get any paid time off. So any time I see a doctor instead of being at work, I’m losing more from my paycheck.
All in all, it’s plain to see I’m a mess. I do try to hide it, but I’m pretty sure it’s evident to anyone who spends a few minutes talking to me.
And for the record, I still cringe every time someone mentions Eastern State Penitentiary.
My mom hates this photo.
I think it captures my indignation pretty damn well!