Here we all stand, on the cusp of Christmas, a time for love and peace, glory and worship, remembrance and forgiveness, and faith. Faith is definitely at a high point right now. Faith is what Christmas is all about. If you don’t believe that a divine child was born many moons ago, then Christmas is totally irrelevant and empty. I believe it, but then I have faith. Everybody needs faith in something or another; otherwise life is meaningless. It doesn’t necessarily have to be in a higher spiritual power, although that’s always a perk. You can find faith in science, in medicine, in technology, or in yourself and your abilities. I happen to have faith in all of it, plus a huge belief in miracles, possibilities, and love. It leads me to believe that one day soon, I will be united with my very special girl over in England. Since we both deal with this terminal thing called Duchenne muscular dystrophy, time is certainly not a given for either of us. It’s now or never, a sense of urgency unfathomable by most people. Thus, we are trying desperately to get on the same continent before it’s too late. We must believe that it will happen – and fast – for without faith, we might as well have nothing.

Although our faith has indeed wavered every now and again due to health, distance and a lack of funds, it is still undeniable. And that is what keeps us together and alive. Faith stretches beyond oceans and the physical, material and virtual. Faith, my friends, comes directly from the soul, and we surely have a ton of it! We’re looking for someone – anyone – to assist us in raising the dollars and services to honor our faith in each other and bring us together.

For now, though, I bid you all peace and joy that follows you though Christmas and the entire New Year. For me, I pray for the same, and that 2012 will bring me cheek to cheek and hand in hand with my Rebekah – the foreign woman who stole my heart away.

Like I always say, it is far better to run on faith than to run on fumes. Happy Holidays!

Two years ago today, I thought I was done, finished, cooked and about to bite the dust. Out of nowhere, the room spun around, the lights dimmed and I don’t know what the hell my ticker was thinking! Yours truly went into complete heart block! Within minutes of my nurse’s emergency call, paramedics were taking vitals, sticking needles in me and whisking me away to the hospital. My pulse dipped to 29 and stayed there for two full hours before shooting back up to 90 in a matter of seconds!

There is no way I should have survived that one, especially at my age and in my tenuous condition. The doctor couldn’t even fathom how I managed to narrowly escape the big sleep that time. Duchenne muscular dystrophy had already ravaged my heart, leaving it hanging by a thread. Well, apparently, that thread is made of nylon because I’m still around to tell the tale.

That was an extremely close call – a little too close for my liking – and I know exactly where I would have ended up had my heart not miraculously corrected itself – deep in a cemetery plot. Fortunately, I was given yet another second chance at life in my long medical history of second chances. But this particular second chance has revealed itself as perhaps the most meaningful of all. It turned out to be the chance to find the love of my life – in England of all places – and a chance to follow the seemingly improbable dream of uniting with her in the near future.

More to come, so please stay tuned!

So, I’ve been sparring with this tracheal infection since the end of last July. It is one of those nagging things that just would not go away! Two different physicians – my internist and ENT specialist – took turns at knocking out this staph, a bug common to those of us with tracheostomy tubes in our necks. They kept hitting it with courses of various oral antibiotics, but to no avail. The infection would only get doused for a few weeks before coming back. Well, I finally had enough and put in a call to my infectious disease specialist, Dr. Licitra. I knew that he would most likely be able to fix me. He decided that the oral medications needed to be replaced by something stronger. It was time to put away the derringers and bring on the cannons! However, Licitra preferred not to follow the intravenous route because my veins are collapsed and I am an extremely tough stick. Whenever I go for a blood test, the lab technician pretty much plunges the needle into my arm somewhere and prays that red fluid shoots out. It’s the proverbial stab in the dark. Heck, a vampire would have trouble extracting blood from me! And starting an IV is even more difficult! I once endured thirteen consecutive failed sticks and several blown veins before a port could finally be established. Talk about your human pincushion!

Anyhow, Licitra opted for an aerosol antibiotic that would be administered right through my ventilator tubing, down my trach tube and directly to the infected area. This made total sense! This was the answer! This medication was just the cannon I’d need! But there was one major snag: the medication he ordered loomed on national backorder. Not a single pharmacy had the stuff. And I needed treatment immediately! So, Licitra prescribed an alternative cannon. Another snag: the damned drug cost three thousand dollars for a 21-day supply, and was not covered under my Medicare prescription drug plan. About $143.00 per single dose – you must be joking! I swear my pacemaker went into overdrive! You should be able to cure a small village for three thousand bucks! Yeah, like I am going to blow all that cash – which I don’t have – on something that offers zero guarantees? Ain’t happening! Sure, if I went into the hospital for this exact same treatment, I wouldn’t be responsible for a single dime. However, I try to avoid hospitals for one specific reason: there are too many sick people there! I already have enough wrong with my body as it is; I can’t have totally new germs wreaking additional havoc upon me. I’d be even more screwed! You would think, though, that Medicare would much rather shell out the lousy three grand than pay a significantly larger bill for a hospital stay. And what if my infection worsened to the point where I would require more intensive care? The cost – staggering! I just can’t understand this rationale. It’s no wonder why Medicare is in trouble.

Well, the insurance simply would not budge – even with physician intervention – so Licitra had no choice but to try yet another oral antibiotic. It has been two weeks since I finished the course, and my signs of infection have disappeared. But if they return, the next step might very well be an exorcism!

At this precise moment one year ago tonight, I was sitting here at my computer when, out of nowhere, the room went dim for several seconds and I felt extremely woozy and nauseated. Then minutes later it happened again, and I knew that something bad was going down! My nurse immediately summoned the paramedics who whisked me away to the emergency room. With a dangerously puny pulse rate of 29 for two solid hours, it appeared that I would soon be a goner! But as quickly as trouble came, that number soared all the way back to the mid-nineties and into safe territory. Frankly, I thought I was doomed, finished, kaput, and on my way toward the light! But it turned out that my tattered old ticker just played the trick of all tricks on me, and I really didn’t appreciate it!

I remember the dumbfounded look on my cardiologist’s face as he entered the examination room a couple of days later. It was a look of “What the hell?” He could not believe that I survived. He was downright blown away! I had returned from the depths of complete heart block, which is a very rare occurrence, and left the man utterly speechless! It suddenly hit me that I had dodged a meteor! This wasn’t some little attack of heartburn. This was some serious shit. It could have killed me!

Anyhow, I believe that a modern miracle happened on that day. I believe that my life was spared for reasons beyond all comprehension. Duchenne muscular dystrophy tried once again – this time with a wrecking ball – to take me out, and I somehow managed to skip away. Sheer coincidence? Fat chance! When you stare death square in the face and have the inner strength to scare it off, that ain’t coincidental. That’s a gift from above!

An entire year has passed since I received yet another second chance, and I am thankful. Am I indestructible? Although it may seem so sometimes, I can assure you that I am not. Am I blessed? Well, you don’t have to convince me!

Recently, I went over to the box office at the spiffy new Amway Center to purchase two tickets to an upcoming Orlando Magic basketball game. There, my nurse spoke with the head of security and we were treated to an impromptu sneak preview of the place! We wanted to see the inside of this amazing facility for ourselves. We wanted to see where we would be sitting during the actual game. We wanted to know our proximity to the paramedic station in case of emergency. We wanted to make sure that the bathrooms were large enough and private. And I wanted to do my own inspection of Amway for safety, wheelchair accessibility and compliance with the Americans with Disabilities Act or ADA. I was not doing this solely for personal interests, but I was also looking out for others in similar circumstances.

A member of the Amway Center staff was kind enough to escort us on the grand tour. We rode the extra larger elevator – one that could accommodate at least six wheelchairs – up to the spacious main concourse, then down one level to a rather secluded disabled seating area. It was sort of like a little V.I.P. box, sans the V.I.P. amenities. However, from a disabled guest’s standpoint, I did notice a few alternative perks of my own. The section was perched above the regular seating area, so I will no longer have to endure fellow spectators standing and blocking my view during pre-game player introductions, great plays and buzzer-beaters. Now I can finally enjoy the very same unobstructed view, a view for which I invested the same money. Plus, a rear wall now protects me, so no one will be able to crowd behind me throughout games or concerts. I will no longer be in constant fear of some careless idiot spilling beer on my ventilator, or even worse, bumping into me and knocking loose the tubing that runs between my trachea and ventilator! I have certainly had a fair share of these hazardous mishaps over the years, so it is comforting to know that unless somebody hurls a mustard-slathered hotdog at my head from the upper deck, I will be relatively safe. There is even an electrical outlet on the floor beside my spot where my nurse can plug in the ventilator if the battery runs low, or my electric blanket if the air conditioning gets to be too much.

As we made our way down the long ramp from the disabled seating section, we passed two somewhat enormous special needs bathrooms. I immediately darted into one and did a full 360 with ease! Again, we rode the big elevator back up to the main concourse and continued the tour. I took notice of this wide hallway, which would offer me tons of room to roam. This means no more plowing blindly through a sea of bodies and running into butts and over feet to leave the building after the event! On the way to the main elevator, our escort pointed out a large concession/bar area with a few lower countertops and tables for guests in wheelchairs. My only disappointment was with the signage that is supposed to direct folks to the primary paramedic station. There was a single, good-sized sign set flush on the facing above the doorway. It was quite difficult to spot since it did not extend out from the wall for obvious view.

Overall, the difference between the old arena and the brand new Amway Center, as far as safety and ADA compliance goes, is astounding! The designers of this place included practically everything per law to accommodate disabled guests, and they should be commended for their efforts. Next week’s Magic game will be my very first event there, and I can’t wait to see compliance in action!

I was going to write and publish this post yesterday, but my brain was far from cooperating. Strange how difficult it is to write when your mind is preoccupied with the potential for being electrocuted by a little metal time-bomb inside your chest! Here’s the scoop…

Yesterday was my quarterly visit to the Orlando Heart Center for a device check. This is when my Implantable Cardioverter Defibrillator (ICD) gets tested to see it is functioning properly and spews out a three-month log of my cardiac activity. And next on the afternoon docket was a follow-up with my electrophysiologist, Dr. Roland Filart, a cardiologist who specializes in arrhythmias. He read the printed report and told me that the ICD checked out just fine. He also noted that the device recorded four episodes of life-threatening ventricular tachycardia – or deadly rhythms as he called them – in the past three months. Now, I am not a big fan of the word deadly, especially when it pertains to me. I mean, deadly doesn’t exactly instill confidence in a person. I would much rather hear funky or iffy or even wacky when referring to my ticker. That would kind of take the edge off, you know? But since Dr. Filart is a straightforward type of guy who pulls no punches, deadly was the best way for him to define my heart’s funky rhythm. My heart rate had raced four times at speeds between 170 and 225 beats per minute, but lasted only about six seconds each time. I asked the doctor why I didn’t get zapped by the defibrillator when it is set to fire whenever my heart rate hits 180 beats or higher. Well, he said that the device would not go off unless an episode lasts for about fifteen seconds. Do the math – fifteen minus six is nine. Therefore, nine measly seconds separated yours truly from getting shocked senseless! I was only nine measly seconds away from finding out if the defibrillator would actually save my life!

It is quite unnerving to know exactly how close I might have come to meeting my maker. Like all artificial or computerized devices, an ICD is man-made, susceptible to potential failure and doesn’t necessarily guarantee anything. You see, if the ICD fires and does jolt my heart back into a safer rhythm, I may still get a crack at survival. If not, I’m a dead man. I believe that odds are supposed to be beaten, and I have done it over and over throughout my lifetime, but I need to be realistic. I’m hanging by a thread now, so I would prefer not to think about my fate.

Considering the obvious severity of my condition, Dr. Filart said he was pleased with the results and told me not to worry. As part of my own personal Magi, he has helped to prolong my life once before, so I trust him to the hilt. But how could I not worry? When you are just nine seconds away from craziness and intense pain, you worry. And panic! I remember author and friend with Duchenne muscular dystrophy, Josh Winheld, telling me a few months prior to his unfortunate passing about how frightened he was when his defibrillator fired several times in a row. So after my own surgery, Josh, offered this sound advice: “Dude, don’t get shocked!” Well, I don’t want to get shocked, and like the next guy, I certainly don’t want to die! I typically block these things out of my mind, but although the doctor was relatively pleased, I wasn’t! Nine seconds surely messed with my head, leaving me with a few extra doubts about my mortality. I know that it is only a matter of time before the ICD must fire and pummel my insides, and I don’t think I will ever be truly ready for it. I am also not ready to see if the device will indeed keep me alive. Heck, I ain’t that strong!

Yesterday served as yet another cruel reminder of how DMD has mercilessly ravaged my heart and numbered my days. Guess I should just be glad I have the ICD to give me a fighting chance against this bastard of a disease. Still, nine seconds is definitely way too close for comfort!