Why Arrhythmia Sucks: A Decade in the Trenches

This thread is for anyone who's ever been told "it's just arrhythmia."

I'm writing about every reason arrhythmia sucks - things I learned from a decade in the trenches while the people around me were all saying "it's just arrhythmia" and other classic tracks like "it's all in your head" or the more gender-role-specific "be a man."

I'm going to serve these up in the order that it all happened. This is over 10 years. 7 ablation attempts. An ICD implant. 3 shocks. An evolving diagnosis that ended with ARVC (Arrhythmogenic Right Ventricular Cardiomyopathy)

---

- Every PVC felt like a thud in my chest that I was consciously aware of. Annoying. It sucked.

- The first time I was admitted to the hospital - bigeminy for 24 hours.That sucked.

- The bills. Holy sh*t, the bills. Middle America. Debt. Mortgage. The stress tests. The echos. My first ablation cost $7,000 and it bought me six months of partial relief. That sucked.

- By year three, I still couldn't really talk to anyone about it. Remember - to everyone around me in the deep red swell of conservative Florida, this was "just arrhythmia." The general philosophy was: shut up, put your work boots back on, nobody cares. That sucked.

- About five years in, I started losing myself slowly. I had to stop exercising. The medication load was becoming unmanageable. I went in for another stress test and went into v-tach on the treadmill. Everyone in the clinic panicked. I was told to sit down and bear down. They brought in Lopressor. The NP was freaking out. My heart went back into rhythm. But at that point, I'm sitting there alone thinking to myself - is this really all "just arrhythmia"? That sucked.

- I switched EPs. Love/d my first. But five years deep, I needed to switch up the lineup - because again, I'm told this is "just arrhythmia." It's all benign. This is all in your head, you know. So I kept working. Kept trying. Kept keeping my mouth shut. That sucked.

- We did another Holter monitor - my third or fourth. It showed approximately 238 runs of v-tach over three days. Results came in. My EP called me immediately and said, "Hey buddy. Stop doing what you're doing." And what I was doing was landscape work on my property. Four and a half acres of property I'd spent my life building. That sucked.

- I was struggling to talk to my family about this. The world around me said "it's just arrhythmia." But I was tired. I was beaten. I was dragging my family home from the theme park early. Looking my nine-year-old daughter in the eye knowing that my damn heart had let her down again - not by choice - but because I was in AFib now and it was hot and I didn't want to stroke out and die. That sucked.

- My role in my family was to provide. To work hard. To overcome the odds. And here, I couldn't do any of those things. My wife having to work harder. Me, irritable. "Just arrhythmia" was starting to consume my entire existence. It sucked.

- I struggled to find the words to talk to my daughter about this. How do you explain to your child that you are doing the best you can when you have ventricular bullets flying into your mind constantly? It sucked.

- And then the cardiac MRI. The "just arrhythmia" brand of "benign" PVCs had become more. Edema. Scarring. Pretty clear - what I was dealing with was more than "just arrhythmia." The diagnosis was now ARVC. Going into my next ablation - attempt number four - I was told that when I woke up, I might have an ICD. I might not. Newsflash - I had a premonition going in. I was waking up with a battery in my chest. That sucked.

- About three months after my ICD was placed, the wheels came off. I took three shocks. The first one sucked. The second one sucked even more. And the third one sucked the hardest - because it left me flat on my back, finally admitting to myself: I'm cooked. I can't do this anymore. And so I didn't. I lost the emotion of hope in my life. It sucked.

- From there, negative coping really took off. I was depressed. The trajectory of my life had completely changed. I stopped caring about being a compliant patient and said to hell with it. I started drinking to numb myself from it all. It sucked.(and I know - this certainly didn't help with the arrhythmia - but at this point I had stopped caring about long term - it was just so what you need to do to survive the next 24)

- I hid that from everyone around me. Because they all said, "it's just arrhythmia." And if it was all "just arrhythmia" and I couldn't hack it - then I deemed myself to be the problem. And Captain Morgan became who I was searching for relief from. It sucked.

- Coping that way doesn't help. Losing hope doesn't help. Actually - it really sucked.

- Ablation six came and went. Minimal improvement. At this point I'm taking enough beta-blocking medication to take down a horse. But it's just arrhythmia. So you shut up and keep going. It sucked.

- And then the seventh ablation attempt. Farapulse. PFA. The new kid on the block did something for me that couldn't be done in ten years. It restored normal sinus rhythm. In a heart that hadn't experienced real stability in over 3,500 days of my life. You would think that kind of relief felt amazing. And initially, it did.

- But then there's this part. In the immediate aftermath of going from millions of PVCs a year and thousands of runs of v-tach to stability - I came to realize what true balance and rhythm in my life actually felt like. And I realized how much I had lost over that decade. I was hit with grief. Because everyone around me had said that something that robbed me of my own presence for ten years was "just arrhythmia." It was never just arrhythmia.

---

I lived in a mental and physical combat zone for ten years. It was awful. It doesn't just suck. It's the most debilitating thing I have ever experienced in my life.

And I want to say this for the group here: never let anyone discount your experience with arrhythmia. They simply do not know. And they should be thankful they don't.

Because for anyone - no matter the count of your arrhythmias, the type, when they happen, or how often - in plain English, the sh*t we have to deal with on a daily basis? It sucks. It's hard.

---

So I'll end here. And this is going to be a bit counter-culture to things you as a patient may have heard:

- This isn't "just arrhythmia."

- It's one of the most pervasive problems in modern medicine.

- While treatment for the heart advances, treatment for the mind lags behind.

- The general population's understanding of arrhythmia is archaic.

- The same neurobiological reasons that combat veterans come home with PTSD and are forever changed - those are the same neurobiological reasons that arrhythmia patients go through it themselves.

So far as I see it - having lived in the rat tunnels of arrhythmia for as long as I have - I don't care if it's one PVC that gripped your chest and threw off your whole day, or runs of v-tach that leave you wondering if this is the last roller coaster you get to ride with your daughter while she has no idea that dad is in v-tach riding Space Mountain at Disney, just trying to show that he can still be the fun dad - you are a damned warrior.

And anyone who says otherwise - please point them my way. I'll help them understand.

---

It sucks. And if I ever had one regret, it was taking those shocks and letting hope leave my life. When I gave that up - that's when the real hurt started. So don't do that to yourself.

If this resonates with you - feel free. Let's make this an "arrhythmia sucks for XYZ reason" thread. I spent last night speaking to a group of folks who live with ICDs. I certainly know I am not alone in knowing how impactful this hell spawn of disease known as "just arrhythmia" can be.

And one more thing - it sucks for the people who care about us, too. Because they get fed the same "it's just arrhythmia" line that we all do. It's just as hard for them to understand as it is for us. So if you care for someone who deals with arrhythmia - feel free to add why it sucks for you, too.

Because the fact is, it does.

But here is what I hope this post offers for at least someone. So often, when my own perception was feeling lesser of weak because this damned thing was certainly getting the best of me at the time - I wish that I had someone to step in and just say "Matty, considering the fight, your actually not doing so bad..."

Because to be a mom, dad, employee, business owner, citizen, friend, student, or whatever it is that you are - and you do it while dealing with arrhythmia through all of it - you are no less. The fact is - you actually deserve extra credit.

So give yourself it.