The Big One

EDIT: I’ve been convinced to start a GoFundMe campaign. With the help of some friends, my story was written up and I’ve posted it here:

Back on the 23rd of October, I had an appointment with a new cardiologist. I was referred to him by my regular cardiologist because my regular one kind of hit a wall with treating me. I’ve not been doing well this year at all. Congestive heart failure kept me inside most of the summer.

Oddly enough, I was able to get back into acting a little in that time. I was part of “12 Angry Jurors” at The Village Players of Hatboro; the same theater I do webmaster and social media work for. First play in 6 years. Yowza. I had been totally turned off of theatre after my relationship with Angie ended. Although, it really wasn’t the end of the relationship that did it to me. It was the emotional betrayal from another friend, which led to everyone else in “the clique” distancing themselves from me. All combined, I lost all my friends and whatever confidence I had before it all went down. It’s been a rough 6 years. It’s my own fault for letting it knock me down so far, I know that. But having a friend to pick me up and dust me off would have been helpful.

But that’s another story. I guess I finally found my footing again, since I was able to go back finally. Then again, those people don’t hang out there anymore and I’m not sure I could have done it if they did. OK, I’m really getting off-track.

This new doctor, he basically sat me down and told me I needed a heart transplant.

My original condition, Hypertrophic Obstructive Cardiomyopathy (the one I had surgery for in 2009), has gotten worse. It’s reached a point they call “Burned Out Hypertrophy” which essentially means, it’s beyond treating. You see, I used to think of this disease as a growth of tissue inside the left ventricle. But really, what it is, is the muscle fibers grow abnormally. This is what CAUSES the growth. And even though the growth has been removed, the tissue still grows and hardens because the fibers all bunch up and can’t relax. So now I’ve got a weak heart and a stiff heart.

But… I can’t get a heart transplant in the shape I’m in. Not only do I smoke, but I’m about 100 lbs heavier than I should be in order to qualify for a heart that would have the strength to withstand my body. The problem is, I don’t have the energy to exercise — and I’ve tried dieting a few times with no success. So then the question becomes: How do I lose the weight?

The solution is a temporary one. It’s called a Left Ventricle Assist Device (LVAD).

Source: Kaiser Permanente

It’s a pump that’s installed and there’s a goddamned power cord that sticks out of my abdomen into battery packs at all times. Ummm… no, thanks.

So that’s decision #1.  I want to try and avoid this LVAD, if I can.  But will I be able to lose weight on my own?  And do I even care enough to?  This, for me, is the decision.  How much do I care to live?  I can quit smoking if I need to, I am confident of that.  But the weight… I just don’t think I’ll be able to do it on my own.

If I decide to go through with any of this, though, there’s an even bigger dilemma. How do I afford this? I have no paid time off. No part-time disability. Nothing. I am self-employed so I can’t even get unemployment compensation.

There’s only one solution.  Quit and go on Disability. Penn (the place I’ve had a contract with for 6.5 years) is already ready to reduce my hours due to my unreliability this summer and I don’t blame them.  And the doctor said I would definitely qualify for Disability, or at least, he would strongly vouch for me.

But the problem THERE is the wait time.  I can’t be working when I apply (I’ve tried already). So I have to be making next to nothing in order to even apply.  And then it’s a long wait before I finally get determined and many people get denied their first try.  So I will have to get a lawyer from the start, which I’m told will greatly increase my chances of acceptance AND speed the process along a little.  But that still won’t help. I don’t have anything in savings.  As soon as I stop getting paid, I’m broke.

So that’s decision #2.  How do I manage to do this with no safety net in between me and the safety net of Disability?  All I can think of right now is sell all my earthly possessions. I’ve got a large baseball card collection, a large record collection, and a vintage drum kit.  I considered selling my car, but I realized I owe more than it’s worth, so I might as well keep the car if I’m going to be paying for it either way… unless someone out there wants to buy a 2014 Chevy Cruze for 13k?!  Yeah, right.

Someone brought up a crowdfunding campaign.  I’m not sure I’m comfortable with that, as there are plenty of other people who are in my position and who am I?  And back to decision #1… how much do I really value my life?

I’m really in a tough spot.  There’s nothing simple about this.  I’m between a rock and a hard place and I don’t see a clear way out of it.  If you do, please…. please tell me.

In the meantime, I’ve been trying to get the creative blood going.  I posted my “Mother, May I” cover in the last post.  Since then I’ve covered 2 more songs.  Tool’s “Sober” and Mazzy Star’s “Fade Into You” and I’m currently listening to an original composition I was working on tonight.  It’s instrumental for now and I’m not sure if it will remain that way or not.  I have no words these days.  “These days” meaning the last 10 years.  No words.  No muse, no words.  But it’s still kind of pleasantly confusing to know I’m listening to what essentially is my first song in 15 years.  That’s a long fucking time, man.  I hope I finish it before I die.

Well, at least if I die, this blog will finally be interesting.

If you’re interested in hearing the song I’m working on, here is the WORK-IN-PROGRESS. Posting it now in case I never finish it.

Oh yeah – and with the help of a co-worker, I finally got around to putting titles on the 500+ posts from 2001-2003. I couldn’t name them all by hand, so they all are now titled with the first 8 words of the posts themselves.

p.s. I also have something wrong with my coccyx. I think it’s growing outwards. So I’m in pain all day from sitting on it and I’m on a constant regimen of pain meds and will soon be getting what is called a ganglion impar block, which is essentially an epidural. It’s all just so fucking fun. Yes, lord, please give me more years…


Create until nothing is left to create.

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