My little rant about fear last week felt good so I think I’ll throw another post out into the void.
So what have I been doing during my silent period? Well, generally dealing with my chronic heart issues. For those who don’t know way back in August of 2018 my heart suddenly went into ventricular tachycardia while at work. This occurred literally around midnight with my heart rate reaching over two-hundred beats per minute.
Stupid me didn’t understand what was happening so for about half an hour I walked around trying to “shake it off.” Luckily for me I work at a hospital so I eventually went to one of the nurses in surgical recovery and had my blood pressure taken. It was normal, but when she felt my pulse I was forced to lay down on a gurney and was quickly wheeled down to the ER.
That began a several month long adventure that included several stays in the cardiac intensive care units of two hospitals, four cardiac ablations, and the discovery that I have a genetic mutation of the heart muscle.
After the fourth cardiac ablation, which was my first down at the Medical University of South Carolina in Charleston(MUSC) I got my life back. And with a few exceptions due to a couple of bouts of atrial fibrillation that required their own ablations, I’ve been doing great for someone with my condition.
That began to change in April of this year. Seemingly out of nowhere I had about two-minutes of tachycardia that my pacemaker/defibrillator, actually it’s a CRT-D, was able to get under control. A small period of panic ensued but after several phone calls down to MUSC everything seemed back under control.
Well, I had another episode of tachycardia again in August, which was again quelled by my CRT-D. While this episode was about the same length and severity as the one in April it raised a lot of red flags for my docs down in Charleston. After a checkup down there in September, a special test was scheduled for the first of October to determine what exactly was going on. It was supposed to be outpatient with me going home that same day. No, that’s not how things unfolded.
The test was scheduled for the first Tuesday in October but that Sunday I went into a prolonged but “gentle” episode of tachycardia. My wife rushed me to local hospital where I quickly informed them that I needed to be sent down to Charleston. Namely for because the test but also because that hospital had first shot at treating my condition and failed.
Probably happy to be rid of my sarcastic ass, they loaded my up into an ambulance and sent me to down to MUSC. That ride is a whole other story in itself but I will not delve down that rabbit hole right now.
To sum up the first week of my October hospital stay is easy. By the time I arrived down in Charleston my heart was mostly behaving itself again. I had the test as scheduled on Tuesday and it was inconclusive. I was discharged mid-morning that Thursday and sent home because the docs saw nothing to fix at that moment.
The very next day, Friday, my heart went to absolute shit by mid-morning. I was having near constant episodes of light tachycardia with my CRT-D pacing me out of them. I say “light tachycardia” because my heart rate never exceeded one-hundred fifty beats per minute. But what did scare me was when my CRT-D paced me out of the episode it literally felt like a kick in the chest.
Yes, I should have headed back down to some ER immediately but since my heart had spent the previous week acting all normal I held off until mid-afternoon. It was around one o’ clock in the afternoon when I finally started making some phone calls to the docs in Charleston.
Like the ambulance ride earlier that week, that’s a story all by itself. Boiling it down to the fundamental points the MUSC nurse that called me back around four o’ clock said it would be best if I came back down to their ER.
I went okay, told my lovely bride to saddle up and were driving south after I packed a small Go-bag. The entire drive down I was going into tachycardia with my CRT-D kicking me in the chest to bring the heart back under control. Truthfully, I expected the tachycardia to suddenly stop at some point, but it didn’t and I walked to the ER reception desk and was greeted by the nurse manning it highly skeptical to my claim.
That was until she hooked me up to an EKG and saw the tachycardia happening in real time. Needless to say I was quickly rushed back to the exam rooms where about five separate nurses and two ER doctors were freaking out. A quick scan of my previous history strongly suggested that if the tachycardia wasn’t brought under some control it would only get worse.
Shit got so weird that night in the ER the maker of my CRT-D’s telemetry people called MUSC saying they had recorded over seventy episodes of tachycardia that day and wanted them to get in touch with me.
Speeding up the story telling a good bit, I was admitted again where I was the guinea pig on a bunch of other medical tests and had copious amounts of blood drawn for fifteen days. It was soon determined that another ablations to control the tachycardia was not an option. My heart had been scarred up pretty badly in my previous procedures, just a normal side-effect of zapping bad cells that wanted to short circuit.
So, once again jumping over a lot of detail, I was informed a few days later my only real option was a heart transplant. Since my root problem was a genetic defect in my heart cells and since I had about all the ablations my heart could take I agreed. That is not before I suffered through about thirty hours of abject terror thinking about what I would have to endure.
After thinking about it and numerous talks with swarms of truly awesome physicians, I realized a heart transplant was my only option if I wanted to continue breathing. The alternative being a slow slide to oblivion as my heart went full short circuit. Not necessarily a painful demise, but it would be highly unpleasant.
Okay here are some of the details that I skimmed over:
My heart is under control right now due to the new drug they have me on. It’s called amiodarone, and it was called by one of the docs the “best drug they have and the worst.” The side effects can be severe in both the short term and the long term. Adding to my equation is that I’m on the maximum dose of four-hundred mg.
While I am fully on the heart transplant list I’m currently at Status Six. That means I’m home and can return to work under certain limitations.
During the testing I learned that any new heart I receive will have to be from someone of similar height, size, and blood type. Since I’m six foot-five inches and a pretty big guy I’m going to be waiting for a long time. Especially since I’m relatively healthy at this moment.
If the amiodarone becomes ineffective, or if I start showing signs of progressive health failure, I will have to return to the hospital and stay there until a heart becomes available. Some people on the transplant list have stayed in the hospital way over a year before getting a heart. These patients have used that time to learn a musical instrument, take online college courses, or even play video games. If I fall into that situation I’m going with then online learning.
Yes, people have died while on the list waiting for a heart.
Yes, I'm still scared but there’s nothing I can do but play the cards I’ve been dealt.